General Message Board

On May 04 2008, Laura C, CAH Coordinator Wrote:
Hi Amy,

I have a 15-year-old daughter with CAH. She has had a bracelet since she was diagnosed. I refused to take it off for sports because that is where she may need it (I didn't attend all games). We tape her bracelet. She is 3 inches sorter than her projected height and is done growing. Your endo should be able to project your son's height. As he hits puberty they will adjust meds for optimal growth. My daughter was in the 5th percentile and then had a growth spurt at puberty. We have traveled and carry information about CAH. If you to a place that does not speak English just have it translated first. Then dr's will know how to treat even if there is a language barrier. I would also carry several extra injection kits and meds. Viralization in girls is much harder to deal with, especially with all of the transgender issues and Oprah. I do not consider my daughter transgender. Genetically she is a girl plain and simple. If you would like to contact me please contact Jamie Harvey at Magic and she can give you my phone number.

On May 01 2008, Joe CAH Coordinator RE: Amy Wrote:
Amy,

We have an 8 year old CAH boy. He is now in the 10th percentile in height but has mirrored the growth chart since he was around one wile gaining 5%. Your son will grow, but it is a good sign that he is not overly tall, his meds are working. If he is well managed he should be close to his potential in the end.

We purchased our first medical alert bracelet when he was four months old after our first convention. It has become a part of him as he wears it all the time unless he is competing in sports and it is against the rules. His classmates don’t comment on it, it has just always been there.

As for more kids that is your choice. We stopped after our son (we have a 13 year old un affected daughter) but we were done anyway. I suggest if you can to come to the convention this summer, the information will help you understand CAH better so you can be more comfortable, the parents are a great source of information and it is great to know that others are going through what you are, had the same questions you do and that you are not in this alone.

We do not limit our son. He is very active and actually competes up a level in two sports against older kids. When you go on a trip find out where the closest hospital is and how to get there as quick as possible if needed that way you will be prepared if anything goes wrong.

Your son will always have to be closely regulated, however there are good endo’s all over the world so you should be ok if you move. The medicine just becomes a part of your lives and you won’t even think about it. The best way to ensure that your son grows well is to make sure you are consistent with his meds. Life does not have to stop with a child with a growth disorder you will adjust.

Don’t hesitate to ask questions, trust me we all had the same ones, if you don’t ask you may never know. It does get easier. If you have any more questions don’t hesitate to ask.

On May 01 2008, Jamie at MAGIC Wrote:
Hey Tina! MAGIC has an entire policy and document to help families with this issue. Some families do have problems with "mis" information about GH and therefore after being open have to pull back a bit. It is horrible because it seems like we are teaching our children to be ashamed of their problems---in reality we are teaching them to be aware of people being less educated and having to protect ourselves. It is really tough! That is why so many children have had such wonderful benefits from going to the convention each year- it is the only time that they are the "normal" ones and everyone gets shots. It helps offset what does happen as these kids get older. It does help to have a few "key" friends who can "have his back" when he is not around. I found that it really helps to also educate the parents of other children but that can backfire as parents only believe what they choose to believe sometimes. So it is tricky. The best thing is to seriously teach him to tell people that it does not make him any stronger than anyone else. It just gets him into the "normal" ranges and that everything else he has done and accomplished is from hard work. He should be proud!

On May 01 2008, Jamie Harvey Wrote:
To Amy
Have you contacted the CAH families on the message board? I can put you in touch with them directly if you would like. Email me jamie@magicfoundation.org and remind me of this and I will make it happen for you.

On Apr 27 2008, Lisa, Pennsylvania Wrote:
Hi Patty,
Yes, we have tried the Humatrope Access Program and we don't qualify for it. Thanks for the suggestion. We haven't heard YET regarding our last appeal (the insurance company is now overdue according to my day count) so I hopeful to hear very soon and keeping my fingers crossed for good news. Thanks for replying. Lisa, Pennsylvania

On Apr 26 2008, Amy Wrote:
I have been wanting to speak with some parents of children with CAH for some time now. My son is now 14 and a half months old. He was diagnosed with CAH on day six of his life. Thankfully, just in time. My husband and I have had to give him one injection in the past year due to vomiting and a fever. Other than that, things have gone pretty well. We are a bit concerned about his growth though. He is not even on the charts, but does seem to be making gains since we changed his medication and dosage to three times a day. Our son seems to be rather sensitive to his medication. Our endocrinologist has him on the lowest dose of any of his patients. I worry about his growth. My husband and I are both relatively tall and we hope that our little tyke will grow to his potential.

Does anyone have any experience with this? Will he be able to "catch up" in growth?

Here are some other random questions that have come to mind lately if anyone is willing and able to answer them:

What about medical bracelets? Is this something we should get for our son?

We are thinking about having another child and are a bit concerned, as we have heard that CAH in girls is a bit of a bigger deal. Is there anyone who can speak to this issue? I guess we're concerned with the genitalia issues and when and if to have corrective surgery if it is necessary. We have read different views.

My husband and I love the outdoors and enjoy long backpacking trips and getting out into the wilderness. Are we being reckless by taking our son on these adventures? We are headed to Alaska this summer to visit a rather remote village, is this wise? I think we get rather bummed thinking that our son might not be able to enjoy the things we did, as he has to be a bit more cautious in emergencies. Any insight on this would be helpful.

We also enjoy traveling and living abroad. However, we have to have our son so closely regulated (at least now) that we wonder if this will ever be possible.

Thank you for whatever insight anyone is able to give. I look forward to any responses.

On Apr 22 2008, Tina Wrote:
My 10 1/2 year old son has been on Humatrope for over a year and a half. The decision to treat him was a difficult one, but we feel we made the right one. Our son has seen some great growth, almost 8 inches since we started. He is almost back on the height charts. While he lacked in height, he has always been a kind, smart, popluar and athletic kid. Recently, some of the kids at school found out he was taking daily injections. The rumor now is that he is on steroids and that is the only reason he is so fast. Does anyone have any advice on how to handle this situation? We taught our son not to be ashamed of being treated, therefore that this was not a secret. Since he is so open about it, it has made him vulnerable to some ridicule as steroids are associated with cheating in sports. Any advice or thoughts would be helpful.

On Apr 08 2008, Patty Wrote:
Lisa,
Have you gotten any info about Humatrope's Access program?

On Apr 05 2008, Andrea Wrote:
Hi Lisa,

Although we never used Tev-Tropin personally, I do know a bit about the product. First of all, it normally is much cheaper than the other brands of GH. I was working with another MAGIC family last summer/fall on their insurance appeal. When the mother priced out Tev-Tropin versus her daughter's current brand of GH, there was a big price differential ($1800 per month for the brand versus $1000 per month for the Tev-Tropin at the same pharmacy). Fortunately for the other family, they won their insurance appeal before they ran out of the interim supply of GH that had been provided by the manufacturer during the appeals process so the family never ended up having to pay out-of-pocket.

The Tev-Tropin does use the syringe/needle and vial method. If you are used to using a "pen" device, you may want to look into getting an Inject-Ease. When my son was on GHT, he used Humatrope. He received his shots between 1997 and 2001. At that time, the HumatroPen was not on the market so we had the syringe/needle and vial. Our ped. endo. gave us an Inject-Ease, and Mike loved it. If you do a "Google" search, there are several listings. While we got ours for free, if your ped. endo. does not have one, they can be ordered on-line through a number of sites including Amazon, and the prices I saw listed ranged from about $21.99 to $27.99. Basically, the Inject-Ease is a plastic device that will hold a variety of sizes of insulin syringes (the type that you would use for the Tev-Tropin). You place the filled syringe in the device and put the device up against the site that you want to inject. The Inject-Ease "hides" the needle before the shot is given. At the push of a button, the Inject-Ease automatically injects the needle into the skin. You just press on the plunger of the syringe to inject the GH. Basically, the Inject-Ease turns an ordinary syringe into a "pen" system. If you are used to your present system, it may take a little bit of training and some time to get used to this "new" method, but it should be an easy adjustment for you and your son.

I read and posted your reply to "Sera" on the Insurance Problems message board so judging from what you wrote, I realize that you are quite knowledgeable about the insurance and appeal process/game/maze. I did want to add a couple of points in case you have not already tried them. First, in addition to the SPD, you also want to have BCBS's coverage criteria for growth hormone. That document lists the different diagnoses for which they will cover GHT (as well as the diagnoses for which they don't)and the criteria that needs to be met for each condition. If you cannot access this document from the member's side of the carrier's website, your ped. endo. will be able to get it from the provider's side. By knowing their guidelines, you can tailor your appeal to show why your son meets them (or if he doesn't, why the criteria are not valid for his case).

The second tip (and the more important one) has to do with the self-insured nature of your plan. As you probably know, since it is self-insured, it is your employer's funds (as opposed to BCBS's) that will be used to pay any claims, and it is your employer that has the final say on what will and will not be covered. To be successful in your appeal, you need to get your employer on board with your request, not an easy task since you are, in effect, asking them to divert tens of thousands of dollars a year from their bottom line to paying for your son's growth hormone therapy. This means that you will have to do a ton of networking pleading your case and moving up the "food chain". Don't discount the secretaries and other assistants as they often have more of the bosses' ears than some other employees do. You want to get as many people advocating for you as possible.

If it gives you any hope, the family that I mentioned in the Tev-Tropin case, was covered by BCBS of PA (not on a self-insured basis, though), and their daughter's diagnosis was ISS.

Good luck with the appeal.

On Apr 01 2008, Lisa, Pennsylvania Wrote:
Hi! My son is on Humatrope and doing very well with it, the problem is we don't think our insurance will cover it. We are in the midst of our last appeal and waiting to hear the results. Our current monthly costs is $2700 so the doctor did suggest a generic which may be less expensive. The generic is called Tev-Tropin and I was wondering if anyone had any experience with this medicine and how it is administered. Currently we use a Humatrope pen like device that has a cartridge and he puts on a small needle on it. I looked on the website for the Tev-Tropin and it appears like it is more like a needle with the medicine in a vial. Any info would be greatly appreciated! Thanks, Lisa, Pennsylvania

On Mar 21 2008, Melissa Nadzan Wrote:
I went through 5 wasted years of testing with my son before he was diagnosed with GHD. The first endocrinologist told us that his IGF-1 was low but that it was because he was 'severely malnourished'. They kept referring us to a nutritionist time and time again. Finally I got fed up, followed my instincts, and took him to Johns Hopkins. They performed a growth hormone stimulation test on him and we recently started treatment. Go with your gut, and dont let them blow you off. It's so much more than height. It's bone strength, ability to regulate body temp, energy level, etc. Look into it.

On Mar 21 2008, Lori Wrote:
Mary/NC
You are on the right track - and you still have time - my son started Growth Hormone 3 years ago - he is almost 15 now. Follow thru with the Pediatric Endocrinologist.

On Mar 19 2008, Mary/N.C. Wrote:
My son is 9yrs 9 months old and is concerned about his height since he is the shortest in the class. He has gone from the 50th percentile to the 2oth percentile in the last few years. The doctor did a bone xray expecting to find a delay but it was the opposite. His bone age was 11y.o. Now I am more concerned because he has less time and would be below the chart for an 11y.o. Now that I am researching I do not see much on what causes advanced bone age and what can be done. Has anyone else had this result? I was not able to get an appointment with a pediatric endocrinologist until the end of May.

On Mar 14 2008, Lisa, Pennsylvania Wrote:
Hello Shila, Robin and Marnie, I'm responded to all of you since I feel like we are all in the same boat! My son, who is now 12, dropped off the growth chart around 26 months and has never been back on. Every time I would ask the ped. during regular check ups they would just say that he will be a "late bloomer". Eventually, I said that I wanted to see a ped. endocrinologist. I started seeing my 1st doctor when Matt was 9. Make a long story short, after watching Matt for 1 1/2 yrs. he had a growth stimulation test done. Matt barely passed the test and could not be labeled Growth Hormone Deficient. When I continued to ask questions of the doctor because Matt was so short he became extremely dismissive. I was concerned and then thought maybe I'm overreacting. I did go and get a second opinion though. It was from a doctor at the same hospital and she was even worse! Telling me that giving my son growth hormones would raise his IGF levels and eventually give him cancer. Could you imagine saying that to a mother with just some basic questions regarding her son's height and health. The worst part of it all was my son was in the room the whole time. Then I got mad!!! I did a lot of research, found Magic Foundation (thank you, thank you)and found another pediatric endocrinologist (yes, a third one). When I met with this doctor he took a good 45 minutes to discuss Matt's health and went into great detail regarding growth, how it happens, etc. He treated me and my son with respect and answered all of our questions. He understood that I was acting as my son's advoccate and rightfully so. He told me that he was very conservative in treatment but wanted to follow up on some tests. With our family height my son should be between 5'7"-5'8" as an adult. What we found out was that Matt was in puberty (via a check below the belt) and his bone age x-ray was in range with his chronological age. Matt's predicted height is 5'0"-5'2" without treatment. A huge difference from what I have always told him since he was 4 years old. Matt did meet the requirements for a diagnosis of ISS so the doctor prescribed Humatrope. In the first 3 months of treatment, Matt has gained 5 pounds and grew 1 1/2 inches!! The doctor was amazed. We were told not to expect any true results for at least 6-8 months but we saw them in 3 months of treatmeent. We are still fighting our insurance company for coverage of the meds. since they do not cover the meds. for a diagnosis of ISS. (That's another story in itself). I guess what I'm saying is that you need to follow your gut instinct. I just had a feeling that something was not right and I was not getting answers from anyone until I found my third doctor. After much research, I also found out that there are many growth processing issues that can take place that cannot be diagnosed by any test at this point in time. In fact, the growth stimulation test is not a decisive or definitive test in detecting GH deficiency but used as a baseline. It's also used very often by insurnace companies in med. coverage. I wasn't sure what I would do via treatment but what I did know was that at the end of the day when my son was a grown adult, that I would want to be able to look him in the eye and say this is what we did and why. So no matter what we did or what the results were or weren't he would feel empowered to know we did all that we could. Follow your gut and you won't go wrong and you won't have any regrets. Please try to let go of not addressing your son's height earlier in life (believe me, I went down that path myself). Focus on what you can do NOW! I do know that there is a medicine that I believe is taken monthly that can stop or slow down the puberty process. I'm watching Matt's puberty progress closely knowing that that closes the growth opportunity. But if your son's bones have not completed fused, there is still time. You need to act quickly though and be persistent. That is what I have learned the hard way and the wonderful advice I have been given by fellow parents through the Magic Foundation. Also, for the past 4 months we have been paying for the meds. ourselves. We are waiting on our last appeal. If you need to pay for the meds. yourself, shop the med. around. I literally called 6 drug stores/mail order companies and received varying prices. I knew from Eli Lilly that one cartridge cost approximately $750. I received one quote for $1,300 per cartridge because I was paying for it. OUTRAGEOUS!!! I was told I needed to use a mail order company but I did find out the name to a local drug store that was able to get the meds. for me. It's a 1/2 hour away but I can pick it up so I'm not paying shipping costs. I got this drug store name from my CVS pharmacist. You never know where you'll find out great info unless you ask a lot of questions. I wish you luck and if you want to contact me, please don't hesitate to email me back. Marnie and Robin, Good luck with your second opinion and treatment! Please keep me posted. I'll check this site more often now! Take care!

On Mar 13 2008, Marnie Wrote:
Sheila, My son just turned 15 also and was 4'11" (he's now 5'0'). His voice has changed and he even has facial hair. They did a bone age and determined that his bone age is normal, and that his growth plates haven't fused completely and there is still time. He was diagnosed with ISS (no ghd at all). There is not much time so our endo is putting everything through quickly so that he can receive at least a small amount of treatment. At 15 and only 5'0, even one year of treatment will do wonders for him. Don't give up, ask if his growth plates have fused or not (by the term "almost full grown", it sounds like his plates have not fused completely. If the endo doesn't want to bother, you might want to go to another ped endo, but you should hurry. At 15 there are almost done, but there is still time probably to 16 or 17. Good luck

My son is starting on norditropin in two weeks.

On Mar 11 2008, Robin from Kansas City Wrote:
To Shila (and anyone else who may have experience and/or input on this type of situation) -

First, I would see another endocrinologist. Was yours specifically a "pediatric" endocrinologist? It will make a huge difference. Did they perform a growth hormone stimulation test (3 hour IV test where they pump growth hormone into your son's body to see his pituitary's reaction)? If not, I would ask why not and request that they do one.

I have one son who is six and is on growth hormone injections. But, I also have two daughters (one is 9 and the other 13) both who have fallen off their growth curves (went from the 15 percentile and the 20 percentile to both now at the 3rd percentile). Their bone age x-rays, and even their 3-hour growth hormone stimulation tests, came back within normal. Insurance won't even consider them as GHD, and even the pediatric endocrinologist says we just need to keep watching them. I'm tired of "just watching"!

Like you, I am concerned about waiting. Specifically regarding my 13 year old, as she IS showing signs of puberty (pubic hair, breast development - but hasn't started her period yet). She has only grown 5/8" in the last 12 months, and only 3" total in the last 3 1/2 years (is supposed to grow 2-3 inches per year). The doctor is waiting to see if she will fall into the 1.5 percentile, which I guess is the official insurance indicator to classify her as ISS (idiopathic short stauture). I am not even interested in the "official" insurance indicator at this time - we will come up with the money if we have to - I am concerned that we will run out of time on her if we keep waiting. So, I contacted her regular pediatrician again, told her my concerns, and that I wanted a second opinion. She then referred us to another pediatric endo within the same department as our first doctor. She told me this ped endo has a reputation for being interested in the unusual cases and is into research, etc. We see her in 2 weeks.

I guess my point is - don't stop until you feel you have exhausted all efforts. It may be too late - I don't know - but at least you will be able to look back and feel confident that you did everything you could within the time that you may have left.

Good luck! I will send prayers your way!
Robin (robin@facilitysourceinc.net)

On Mar 11 2008, Douglas Pagnani Wrote:
The MAGIC Foundation has created an online petition to help show the Senate how many people really are interested in stopping the passage of a current Senate bill that will drastically affects kids like Juliette who are on GH for medical reasons and legally prescribed the GH for this use. The athletes and celebs who abuse GH should be punished; not our kids.



If you would take 2 minutes and read the petition (you can you can access it through the link below) and sign if you agree, we would appreciate it!



I have also attached a copy of the letter that is being sent to all Senators.



Also, please feel free to pass this on to others who might want to be part of the solution!!!!



The MAGIC Foundation has created an online petition to help show the Senate how many people really are interested in stopping the passage of a current Senate bill that will drastically affects kids like Juliette who are on GH for medical reasons and legally prescribed the GH for this use. The athletes and celebs who abuse GH should be punished; not our kids.



If you would take 2 minutes and read the petition (you can you can access it through the link below) and sign if you agree, we would appreciate it!



I have also attached a copy of the letter that is being sent to all Senators.



Also, please feel free to pass this on to others who might want to be part of the solution!!!!

The MAGIC Foundation has created an online petition to help show the Senate how many people really are interested in stopping the passage of a current Senate bill that will drastically affects kids like Juliette who are on GH for medical reasons and legally prescribed the GH for this use. The athletes and celebs who abuse GH should be punished; not our kids.



If you would take 2 minutes and read the petition (you can you can access it through the link below) and sign if you agree, we would appreciate it!



I have also attached a copy of the letter that is being sent to all Senators.
The MAGIC Foundation has created an online petition to help show the Senate how many people really are interested in stopping the passage of a current Senate bill that will drastically affects kids like Juliette who are on GH for medical reasons and legally prescribed the GH for this use. The athletes and celebs who abuse GH should be punished; not our kids.



If you would take 2 minutes and read the petition (you can you can access it through the link below) and sign if you agree, we would appreciate it!



I have also attached a copy of the letter that is being sent to all Senators.



Also, please feel free to pass this on to others who might want to be part of the solution!!!!




Also, please feel free to pass this on to others who might want to be part of the solution!!!!

On Mar 11 2008, Shila Wrote:
I recently saw a morning news show on TV explain a new method of hope for helping short people grow, even adults, grow taller. It was supposed help bones grow from the middle section. I don't remember the whole story, does anyone know anything about this new method? Thank you

On Mar 11 2008, Shila Wrote:
Hello and thank you for listening to me. I have never posted on message boards - hope I am doing this right. My son just turned 15 and is 4'11 but the endocrinologist said he is almost full grown (based on one hand x-ray) and will not benefit from growth hormones. (His blood test said he does not have low growth hormones.) I tend not to believe her because my son does not show any signs of being full grown, no facial hair or under arm hair, his voice has not changed and he weighs 98 lbs... She said "almost" full grown. Is there anything I can do to help slow the maturity of the bones so he can take growth hormones? We are devastated we didn't take action sooner, but isn't there anything we can do now before it is too late? Please help and give us advice. Thank you. Thank you.

On Mar 09 2008, Tamera Wrote:
Hi Kaz

My daughter is almost 10 and the size of a 5 1/2 year old. She started growth hormones 3 months ago and has already grown almost 2 inches (that's as much as she usually grows in a year). It's very exciting! She also has been teased and babied at school. Just remember that you are very special and you will be having a catch up time on the medicine. I'm sure it's a scarey time but remember that we, parents and kids who have been where you are now, are here for you and your family. You are very brave and I'm so glad you shared your story. You keep posting if you want to talk.

On Mar 07 2008, Courtney Wrote:
Kaz~
It's going to take time for you to adjust to what's happening and it won't take long before you are catching up to your friends. Why don't you try finding a penpal through MAGIC. I met my pen pal when we were 9 and we are still friends 15 years later. I knew what she was going through and she could relate to me. It helped a lot. If you'd like you can email me and we can talk about this a little more. ghd@magicfoundation.org

On Mar 07 2008, anonymous Wrote:
To Kaz,

You will soon see the benefits of your meds - my son started on the medication when he was about 12 - he has grown over 14" in the past 3 years - so be patient - you will see the changes soon!

On Mar 06 2008, Denise H. Wrote:
Hi Kaz- I know what you are going through. I was really little in school too. It is really scarey until you fo back for your first check up and finally find out that your body is starting to get back to normal. That is the best part! Hang in there- it will be ok and you will get healthy and grow like everyone else really soon! Don't give up on yourself! You are worth it! All these people at MAGIC are fighting for you and all the kids, they know you are worth it.

On Mar 06 2008, kaz Wrote:
hi, im really new to all of this stuff but here is my story. My name is Kaz i am 11 years old but i have the bone structure of a 7 year old my docter,dr.conner suggested growth hormones none of the insurance wants to cover me so while my mom is trying to get insurance figured out, Dr.Conner put me on this medicine to help me grow i dont know if it is going to work but i hope it does i get picked on practically everday and its so scary at times i just want to cry why is it so hard for me to go through this. Im just so scared thank you for listening. Kaz

On Mar 02 2008, anonymous Wrote:
Since he was mentioned here by anonymous on 24 January 2008, it is with sorrow that I must report the passing of Dr. Tom Moshang. He died a week ago at age 70 of pancreatic cancer. His obituary was posted to Philly.com on 29 February 2008.

On Feb 25 2008, Jamie Wrote:
RE: Hope for Michael
Have you checked out the McCune Albright message board? There may be families with the same issues on that board who can help you better.

On Feb 22 2008, hope for Michael Wrote:
Majic foundation: My son was diagnosed with fibrous dispasia when he was 17. He has increasingly developed mental problem scince then. He knows something is wrong but will not admit it. This bone disease is in his head. I believe that it is effecting the way he functions on a daily basis. He has lost the ability to tell time, count money, read and spell. I beleive that this bone disease is growing and making him this way, I don't know what to, do where to go, who to talk to. Could you please email me back with some input please. Thank you

On Jan 24 2008, anonymous Wrote:
Hey Maura!
2 things, we have a IGFD message board which may help you with IGFD specific issues and parents have reported that Dr. Tom Moshang is incredibly good. His number is 215-590-3174.

On Jan 22 2008, Maura Wrote:
Hi,

Our 2.8 yr old son has recently been diagnosed with low IGF-1 (GHD). The PE wants to run the gh stimulation test. We like this PE, but feel we should get a second opinion. Can any one recommend a good PE in the Philadelphia area? We are currently using Zeger out of DuPont. Thank you.

On Jan 07 2008, Dayna RSS Division Consultant Wrote:
Kelly,

Hi! My name is Dayna and I too have a daughter with RSS. I would LOVE to chat more with you about your daughter. 17lbs at 3 1/2 is quite small even for an RSS child. We just started gh therapy and it has been great for us. It's a very personal decision and not for everyone. Also, there is a doctor in NYC who has over 120 RSS patients and I would be happy to get you in touch with her as well. I am the division consultant for the RSS division and my email is rss-sga@magicfoundation.org. I really look forward to hearing from you!!

Dayna

On Jan 05 2008, anonymous Wrote:
GH was the best decision I ever made for my child (now an adult). GH appears to be very safe and I have communicated with hundreds of families. I did learn the hard way to watch what I read on the internet. You need to visit the right sites for the correct info. GH does much more than height so you may want to check with your endo about how tall she will reach without therapy and how low her levels are. Then make your decision but I would suggest you communicate with many families of children on GH. You will find out it is much safer than you think.

On Jan 03 2008, anonymous Wrote:
On Jan 3,2007, Kelly/Syracuse Wrote:
Hi, my name is Kelly, mom to Molly, 3 1/2 year old with RSS and mitochondrial disease. We live in Syracuse, NY. My husband and I are currently looking into growth hormone. She weighs 17 pounds and she recently has begun to level off with her growth. Does anyone know of a doctor who specializes in RSS and what is your experience with the use of growth hormone? We are concerned about long term affects of the use of growth hormone. Any advice you could give would be great. Also, the daily regiment of administering the growth hormone and side effects would be helpful as well. Thanks!

On Jan 03 2008, anonymous Wrote:
Response to Ellen: I have struggled in my own decisions about my son who has AIS. The only thing I have to say is listen to your daughter. She is happy and content being who she is. You should be thankful for that and embrace it. By making her take gh shots tells her that she should not accept herself for who she is. My mother in law is only 4'10" and she lives a normal happy life. If your daughter has no medical reason to take gh shots then there is no reason to start taking them. Sometimes the risk of not taking a medication beat the side effects of taking a medication. Inform yourself and listen to your child.

On Dec 30 2007, anonymous Wrote:
Hi,
I wrote on December 9th. As I explained, we had gone through several tests and no answers. And to our surprise, we have the answer to my twin boys' Failure to Thrive. Our recent Gastric Emptying Scan showed that they have delayed gastric emptying also known as gastroparesis.

Anyhow, before all these tests I made an appointment with a Pediatric Endocrinologist which we are scheduled to see at the end of Jan. Jamie made this recommendation a few months ago.

The question is, while I think we have our diagnosis which is GI related, is it possible the Endocrinologist could be helpful? Could he reveal other or related issues?

Any advise would be helpful to me. Thanks.

On Dec 27 2007, KD in MI Wrote:
Hello MAGIC -

I am looking for some help and information. I have a 7-year old whose primary care provider wants to see a Pediatric Endrocrinologist for the second time. The first time we were referred it was for Growth delay. On our first visit to the PE, she found there was a mistake in the measurements at the Primary care office. On her re-measurement, he was on the growth chart, just at the low end.

Her suggestions were to continue trying to get him additional calories and come back in 4 months. We continued to go see the PE 5 more times, each time, there was no change. Try to have him eat more. I asked if we could follow-up with our primary care, since there was no plan or value in have the PE tell us to have him eat more. We were already aware of that.

Now, we are back at the same point. My son is growing, slowly, his numbers are low, and I continue to work to get him to eat additional calories daily.

Is there value to go to a PE just to be told to increase calories?

On Dec 13 2007, Ellen Wrote:
12/13/07 WOW - my first reaction to this website. I heard about this site from our first visit with the Endocrynologist. My daughter is 11.9 yrs old & has been below the growth chart since she was born (ht=50" & wt=53lbs). She is talented in many areas including art, soccer, acting, singing. Her heart is made of gold also. Our pediatrition recommended seeing the endo doctor, who recommended gh shots. We have not learned the results of the blood test but all previous tests showed that she was medically "normal". My husband and I are on the fence deciding whether to start the gh shots - my daughter is paniced aboutthe shots (she has refused to get them-says she is very happy with her height!No problem!), we are worried about possible side effects and the long term commitment. Future effects of gh, like leukemia totally scare us - my husband has been fighting CLL for 8 yrs (leukemia). No one knows the long term effects either. How in the world did you make the decision to start gh shots? We haven't even check with our insurance company yet. This whole journey frightens us - the first step is so difficult to take. Thanks - I do plan to get a membership.

On Dec 11 2007, Deena in Texas Wrote:
Hi...I am new to this board and just needed some help and support. I have a 17 1/2 month old (well almost 18 months) and he was finally diagnosed with hypothyroidism. So far he is 50 pounds, yet they do not feel the thyroid problem is his main weight issue. He started gaining at 3-4 months, had many allergies, and a list of other issues to go along with things. The Dr's ignored me for MONTHS when I asked to check about this weight issue until he was 8 months old and another hospital looked into it..yet they dropped the ball by not doing the tests needed to diagnose him at that time. FINALLY 6 months later at 15 months he was given the diagnosis of Hypothyroidism. I'm guessing it's acquired..but I have no idea. We are still trying to pinpoint his main weight issue. They tested him for prader-willi, cushings, and everything else, yet all negative. I'm just wondering if any other moms on here has a big child like this that could help me dealing with people and resources, diaper situation, etc. He is normal height, just off the charts for his weight and he does not eat a lot by far. We have met with MANY diet people to show it's not use causing anything. Diapers are a big issue for us because right now we have to buy the goodnight diapers that are 15 bucks for 23 diapers. I just want to cry daily trying to figure out how *I* am to deal with it all and keep carrying him, and lifting, and wanting to hold my baby as anyone else could. I'm only 4'11..and about to have surgery for bladder issues from lifting him so much. I've never used the board before so I'm not sure what to expect. We are due to see a dermatologist tomorrow for things that I feel might be a missing link. Thank you.

On Dec 10 2007, anonymous Wrote:
Please either call Magic and talk to a parent who has been through this or take the boys to a good pediatric endocrinologist FIRST! Magic really helped me avoid some horrible testing and "junk" with my daughter!!! Call them! 708-383-0808

On Dec 09 2007, Jen Wrote:
My name is Jen, and I have twin boys who are 19 months old and have been diagnosed with Failure to Thrive. They are off the chart for both weight and height. They currently weigh 18 lbs 3 oz. and 17 lbs. 6 oz. They started to fall off the charts at 9 mos. The boys eat great and are on a high calorie diet and appear very normal. We have been through a lot these past 10 months and still have no answers-- constant weight checks with our Pediatrician, appointments with the GI specialist, and a battery of tests. All tests have come back negative so far. Thyroid, IGF-1, Urinalysis, Sweat Test, all blood work. We are doing the Gastric Emptying Scan in 2 weeks and then if they still find nothing, the GI specialist is also recommending a colonoscopy. That’s where I draw the line! How much testing can we put my boys through?

I spoke with Jamie Harvey and she recommended seeing a Pediatric Endocrinologist which we are now going to explore in January. If anybody has any recommendations and experiences to share it would greatly be appreciated. Thanks.

On Nov 28 2007, Lisa Wrote:
Response to Carolyn: I was very confused about my son's possible growth problem too. My son is 17 months old and we had the same "wait and see" given to us. I just wanted to find out if something was wrong and then begin to help him I called MAGIC and spoke with Jamie Harvey. She helped me more than I can say. I would say that if you can call MAGIC and speak with Jamie, she can explain this entire world to you in a way that we "moms" can understand. It was the best thing I did!

On Nov 26 2007, anonymous Wrote:
Hey Cindi!

We were unaware of the diappearance of this message board! Thank you for bringing it to our attention. We are working on it and hope to have it resolved by tomorrow!
Jamie, The MAGIC Foundation

On Nov 26 2007, cindi Wrote:
hi - i am just curious as to why the insurance message board was removed - thanks!

On Nov 21 2007, Donna in Indiana Wrote:
This is in reponse to the person with the 8 year old daughter with precious puberty taking Lupron injections.
My daughter was diagnosed at age 4 with precious puberty & started taking Lupron injections. She took them from age 4 to 8 with the highest dosage 2 times a month.
It did stop her period but not the growing. The last x-ray of her left hand at age 8 her bones were almost 12 years old.
Now at age 10 she looks like she is 13 or 14.

I took her to the doctor on Nov.21,2007 because her back had been hurting after an x-ray I was informed that my 10 year old now has OSTEOPOROSIS!!!!!
She was also last year diagnosed with SCOLIOSIS.

All I am saying is please get informed about the side effects of Lupron so you won't be shocked the way I am.

You have to do what is best for your child. If I had to choose for my daughter to take the injections again I'd be 90% on the choice of her taking them.

Our docctors did not tell us this or any other side effects of the drug.

Get informed!!

Thanks,

Donna in Indiana

On Oct 31 2007, Carolyn Wrote:
(Hope this is the right way to do this. Thanks)Yesterday I took my 2 year old for his well child check up. We adopted him from Korea when he was 7 months old. We do have information that his bio parents are of normal height. We also adopted his bio older brother who is 25% height on growth charts.

Our 2 yr old is 5% height but 50% weight. Previously he had always been 25% in height. Our ped. said she was concerned but at 2 there isn't much we can do other than watch him. She thinks he may have a form of dwarfism because his head is large, his chest is narrow and he has short legs. IMO he does look mildly disproportional but not drastically. She then said that they wont treat him until he is 5 and would then do a bone age x-ray and possibly start ght.

We do have extensive bloodwork from about 1 year ago that was all normal.

So basically I left with a just wait and see. My head was spinning. She is a good Dr that is normally so cautious. She said she does have a patient getting ght right now so at least she is familiar with it.

Is there anything I should be doing at this point or just sit back and hope and pray that his growth picks up on its own?

Any suggestions would be appreciated. Thank you.

On Oct 26 2007, Jessica Wrote:
re: hi! jessica again here..with the small 6 y/o. is there a place where i can find a head circumference guide? all the ones i see stop at 3. i am trying to gather all my data.
thanks!!

On Oct 25 2007, Dayna Wrote:
Jessica, Good for you for listening to your gut instinct. As mothers, sometimes it is all we can do, but so important. It sounds as though your son may be having difficulty maintaining a stable blood sugar. My daughter has Russell Silver Syndrome and they are at an increased risk for Hypoglycemia due to their thin bodies and large heads. Their bodies just don't have the fat stores to fuel their brains/bodies when they haven't eaten after a few hours. Have your doctors tested for hypoglycemia? This would certainly make you son not feel very good and shakey. My doctor has us make sure to feed my 6 year old every few hours. We do a complex carb and protein. It's not always easy since she doesn't like to eat. WE went thu 3 pediatricians and 3 endocrinologists before we found a doctor that took us seriously! If you want to talk, you can call MAGIC at 8003MAGIC3 and ask them to get a message to Dayna C. Good Luck!!!!

On Oct 25 2007, Jessica Wrote:
hello, i am the mother of a very small 6 y/o boy. he is below the 3rd percentile in height and weight. i am at my wits end! i have tried getting people to listen to me and help my son!

my son was a large baby.in the 95th percentil at birth..and dropped the growth curve starting at 6 months..kept periodically dropping at his doc visits. he was a late walker, talker..everything.

at 3 1/2 years he was diagnosed with TEC (Transient Erythroblastopenia of Childhood) he was sick enough to need a transfusion. since then he has been a sickly child..not growing.catching any illness that comes around.

the latest is the past year he has had problems with eating..or waiting too long to eat in between meals. in the morning he will wake up "shakey" pale and throw up if food was not gotten into him fast enough. there has been tests opon tests. his energy level is very low. hes like a precious flower..very skinny body and large head. the endocrynologist pushed our concerns aside and said to "wait it out". we are presently seeing a GI for him and has ordered a ton of tests for him.

my issue is this..he is not growing..he feels sick..tests seem fine.and everyone just pushes my concerns aside. i need help to find where i should take my son to have someone look at EVERYTHING from birth to now. can anyone please help me?
thanks so much

On Oct 01 2007, Jamie Wrote:
To Melissa-it is really hard to fathom a problem with children. As the mother of 2 kids I really understand. I applaud your investigation and am available if you want to talk personally. Children, regardless of their ethnic heritage all follow certain "rules" of nature (for lack of a better phrase. For example, all children after a certain age should grow a minimum of 2 inches per year. There are many factor which do come into play but ultimately they all circle back to the same issue of how the lab test turn out and how the child is growing. It is not so much the height that is the concern, as it is the invisible things such as heart strength, lung strength, immune system etc. If you want to talk for a while...I am here. I can be reached by calling MAGIC at 800-3MAGIC 3 and leaving a message for Jamie Harvey. They will send me an email with your phone call and I will track you down and go over it with you. I am not trying to sell you on any decision- but hope to give parents honest answers so they can make the best decisions for themselves. Afterall, I nor the doctors live with the consequences of your decision. It is personal for you, your daughter and family. Please do not hesitate to call.

On Oct 01 2007, Melissa Wrote:
I don't have a response but a question: I recently adopted a beautiful little girl from southern China who is very petite for her age of two. Her pediatrician is concerned that her growth has leveled off in the last 3 months and is sending us to a pediatric endocrinologist. There was a recent blood panel down and it was found that her growth hormonal level was very low. My question is...according to American children's standards or what? Has anyone out there adopted an Asian child, and what do I expect? At two, my daughter is 16.7 pounds and is 29" in height. I would so appreciate feed back from someone who has had a similar experience.
Thanks.

On Oct 01 2007, anonymous Wrote:
To:Barbara
It sounds like they are testing her for precocious puberty. Have you checked out that message board?
It is here:http://www.magicfoundation.org/www/msgboard/997.11/precocious-puberty-message-board.htm

On Oct 01 2007, anonymous Wrote:
hi my name is Barbara im from Guernsey in the Channel Islands. I took my little girl to the doctors some months ago as i noticed she'd grown pubic hair and her attitude has changed shes's turned into an angry little girl and shes very tall for her age. Our doctor referred her to see a specialist so we took her and he took 2 lots of blood and sent one to Great Ormond Street & one to Southampton. then a week later he requested that we take her to the hospital to have some more blood tests..this was over 8 wks ago im so worried because she is a different little girl now & all our friends & family talk to her like she's alot older. The Specialist didnt tell us what he thinks is wrong with her nor what he was testing her for its driving me mad cause none of the results are back.

On Sep 10 2007, anonymous Wrote:
I was curious if someone might be able to answer a few questions that I am racking my brain in hopes to make some of this make sense. My 8 yr. old daughter was diagnosed as to having Precious Puberty in addition to having a tumor (That is non secreting) on her Pituitary Gland. She started on the Lupron injections 3 months ago. We have had her estrogen levels checked every few weeks and they continue to rise in addition to growing pubic hair. I thought that the shots would make the estrogen levels lower thus stopping hair growth. She is to recieve her fourth injection in a few days. She was recieving the lowest dose possible. I think that we should increase her dose to the 11.25 mg. Any help in this situation would be greatly appreciated. (What are normal levels of estrogen in a child & Do you think increasing the shot would help?

On Sep 05 2007, anonymous Wrote:
Hi Mario- There are many things that determine how tall you will end up as an adult. The current growth pattern that you are on and your genetics. The rule of thumb that "averages" out (but are always affected by many things) is this: You take Dad's height of 6'10 and Mom's height of 5'3 and figure out that there is 19 inches difference between them. You divide 19 by 2 and get 9.5 inches. You add the 9.5 to your mom's height (that takes you to 6 feet 1/2 inches) and then add 2 inches toward your Dad's height. (If you were a girl you would subtract 2 inches). And that gets you to 6 feet 2 and a half inches tall as an adult. But since you have many more years to grow...anything can happen! This is just the rule of averages- so there are no guarantees. You could end up taller. Check with your doctor to see what he thinks!

On Aug 30 2007, mario bennett Wrote:
if im 13 years of age and im 5 foot 8 and dad is 6 foot 10 and mom is 5 foot 3 and my dads mom is 5 foot 9 or 8 and my dads dad is 6 foot 6 and my moms mom is 5 4 or 3 and moms dad is 5 11 what will i be

On Aug 27 2007, anonymous Wrote:
Hi Magic Foundation, I am a grandparent that just found out that my 17 month old grandson has a growth harmone deficiency. I am not sure what all that means just yet. He has to see a specialist on Sept. 13th. But I have been reading some stories on your web site. They have eased my mind somewhat, knowing that it is treatable is a little releaf. The not knowing what it is really about is the scarry part. If anyone has some advise, it would be greatly appreciated.

On Aug 22 2007, C's mom Wrote:
Thanks for that info. I did look (and post) on the CPP board. But some of what I read said that if a child is 8 or older, endocrinologists won't treat CPP, because it's within the normal range. DD's bone age was delayed by 18 months, her dental age by 12-18 months. So I thought that meant she had time to grow, but it sounds like w/ the onset of puberty, that may not be the case.

On Aug 22 2007, anonymous Wrote:
RE: DD's Mom
Often ghd kids will have a delayed bone age because everything is delayed due to the hormone imbalance. But with puberty...whole new ballgame. There are kids on gh and also on puberty delaying med's. Would recommend you also check out the precocious puberty message board although those kids are not on gh. A friend of mine had a son who was a teenager when they found out that he was ghd. He was going to be about 5'1- so they delayed puberty while on the gh shots. He finished growing and made it to a hair below 5'6.

On Aug 22 2007, C's mom Wrote:
My dd is almost 8.5, internationally adopted at age 2, and very small, about 5th percentile for height & weight. she's been puttering along the bottom of the chart since she came home. She eats like a horse, is very high energy, and gains little weight. Because her tooth loss was delayed and her size was so small, we had a bone scan done, which showed her delayed bone age of 18 months (this was at age 6, her bone age was about 4.5). Now she's showing signs of puberty, and I'm concerned that she's going to end up being extremely short. I know 8.5ish is early, but not unheard of for puberty, but combined w/ a short stature, she's going to end up under 5 foot.

Is it possible for kids who are gh deficient to have delayed bone age? I wouldn't think so but I'm trying to figure out what we can do. We have an appt w/ a pediatric endocrinologist, but can't get in until November.

On Aug 21 2007, Susan in Florida Wrote:
To parents treating your children with ISS, one of our sons was 2 pounds 14 ounces at birth. He never caught up. He was always a skinny little man. Once he began GHT, it took about six months to register on the growth chart, but once it did, it kept going. Thanks to these four years of GHT, he's gone from below the first percentile on the growth chart to moving upward past the 25th. He's 9 1/2, 52" and a modest 55 pounds. Weight gain is his biggest struggle, and his appetite isn't great, but overall, he looks awesome to us! Incidentally, he was not GH deficient. However, we recently found out his older brother is although he is in the 50th percentile for height. Two brothers with growth problems of a different nature. You never know what life will deal you, do you?

On Aug 21 2007, Claudia Wrote:
My son was diagnosed ISS. I know this means they don't know why he is not growing. But there are so many differnt things it could be. I am concerned about starting a medicine for what could be instead of what really is. Does anybody have any advice?

On Aug 07 2007, anonymous Wrote:
"Got Cornstarch?" is a play on the slogan "Got Milk?". RSS/SGA children are at an significantly increased risk for hypoglycemia (low blood sugar) because they have very little if any body fat. Normally a body burns food for energy and when no food is available it burns glycogen stores. RSS/SGA children do not have these extra stores so when they do not have food to burn they get low blood sugar. This is especially a problem overnight. Placing uncooked cornstarch in a bedtime drink may help prevent hypoglycemia because the cornstarch can be used by the body instead of the missing glycogen stores for about 6-8 hours. One of our SGA moms came up with the "Got Cornstarch?" slogan as a joke. The idea was so popular she had it printed on t-shirts and we sold them at the convention as a fundraiser for MAGIC. In the next few days the shirts will be available thru the MAGIC store. Anyone interested can email me at rss-sga@magicfoundation.org.

On Aug 07 2007, CK Wrote:
Apparently I am not in the know. What is "Got cornstarch?"

On Jul 13 2007, Jamie, MAGIC Foundation Wrote:
To: Worried Sick in England
I copied/ sent your message to our Precocious Puberty Message Board for help as it applies to that topic more than a general board. You did nothing wrong - asking for help on this board. I copied it over for you because they will be able to give you the best facts on your situation! Please check that board for their responses!

On Jul 12 2007, Bee Wrote:
I have been to the doctors today with my 5 year old daughter as she has developed breasts and some pubic hair, please could somebody advise me what I need to know as I had never heard of this prior to last night and am worried sick. I am in England so I dont have to worry about the cost (Thank god for the NHS!!) but I would like to be an informed mum rather than just relying on the doctors as you never know what they may miss / decide is not necassary when it could actually be essential.

Thank you anybody who helps me

On Jul 12 2007, Jamie H, The MAGIC Foundation Wrote:
TO: KIMMIE

I had this same problem years ago when I was going through the same thing. I was told that the best way to KNOW if your son is growing "well" is to watch the growth chart. As MAGIC has info on normal growth-you might want to check that out. But in a nutshell-if your son is growing LESS than 2 and a half inches in a 12 month time span...he needs to be checked out!

I speak to many families of children with problems which are not referred into the Pediatric Endocrinologist for several years. The pediatricians usually wait and see (for quite a while) to monitor this 12 month span. Some loose track of it - so stay on top of the time waiting.

But don't wait too long. I was speaking with a mom of a 17 year old son a few weeks ago, who had waited too long. She had complained to her son's pediatrician for years- but was told year after year- don't worry he will catch up. Today, her son, stands 5 feet 2 inches tall. He has no growth left because his bones have closed.

Height is a major signal to parents about the overall health of their kids. If they are not growing "well" other things (more important-but invisible to us as parents) could also be affected.

I agree with Tina- TRUST YOUR INSTINCTS-no body knows a child like a parent!

On Jul 12 2007, Kimmie Wrote:
My son is 11 years old and still wearing the same bluejeans he wore when he was 9. My husband is only 5 feet 9 inches tall and I am 5 feet 2 inches tall. The pediatrician says that my son will be ok but he is not growing. Does anybody know exactly what it is that I should know so that I can find him a good doctor? Thanks in advance.

On Jul 03 2007, Tina Kremer Wrote:
To anonymous with the 5th grade son: Trust your instincts and take your son to a pediatric endocrinologist. I am 5'1" and my husband is 5'10". We have two boys. The 6th grader is in the 50th percentile for height, where he should be with parents our size. Our younger son is below the growth chart and just started hormone therapy. I can't tell you how many people think it is normal for a child to be that small because he has a short mother. We found a fantastic ped. endo. and after much debate and research started our son on hormone treatment. We don't know yet if it will work, but knew we had to give it a chance. Have your son tested for hormone deficiency and delayed bone age.

On Jul 02 2007, Ashley Wrote:
This is great! Thanks MAGIC. For other parents like me fighting for Insurance to cover your children's med's- check out the Insurance Message Board! Awesome!

On Jun 27 2007, Sue Smith RN CDE CNS PNP Wrote:
Hi Kathy
Please arrange for your daughter to see another pediatric endocrinologist. You are right to trust your instincts. Do you know what blood tests they ran? The siutation you describe is not normal and should not brushed aside. If you need information about another endocrinologist in your area please call me at 1 800 3 MAGIC 3

On Jun 26 2007, Kendra -mother of Carli Wrote:
re: Kathy and her 16-year-old daughter- My daughter is now 15yrs and is 5'1. She has been on Humatrope for a year and a half and the results are amazing. She is also hypothyroid. She was diagonosed in the 6th grade after I googled her symptoms and was told by the local drs that she was just petite and immature. Perhaps your daughter should have her TSH checked and also have her checked for growth hormone deficiency. She is a little old but if she has a young bone age, she may still have time to grow. Even if she stays at her current height, you want her to feel better overall. Don't give up. Go with your gut.

On Jun 26 2007, Kathy Wrote:
I have a 16yr old daughter who is only 4ft 10 in. Two years ago, she was seen by a local endocronologist, who pretty much said that she had short stature disease and that was about all that we got out of them. Within the last two years she has not grown at all, and has lost her eyelashes, and has trouble losing weight. She appears puffy in her face and arms a great deal of the time. She has had blood work done, but they say that everything is fine. But, I don't believe that everything is fine. Anyone have any input?

On Jun 22 2007, Jamie Wrote:
FYI- MAGIC is working on establishing a new message board for everyone (all disorders) which is about Insurance issues. It should be up next week. If you have questions, personal experiences which you can share to help others-please look out for this Board and post so that families can finally get some real help from those who have been there! If you have a problem, feel free to post it...I am sure you will not be alone!

On Jun 21 2007, anonymous Wrote:
RE: HELP Growth is complicated- the key to understanding how your son is doing is to measure him or check and see if he is growing at least 2 1/2 inches every 12 months (after the age of 2 years old). If he is growing 2 1/2 inches each year, then he might be a late bloomer (see: http://www.magicfoundation.org/www/docs/11.1067/constitutional--late-growth-bloomer.html). If he is not growing at least that much, no matter how tall you/Mom or Dad is...you may want to take him to either a new pediatrician or pediatric endocrinologist (usually only take referrals for appointments as they are JAMMED up doctors) for a bone-age x-ray of his hand (see page: http://www.magicfoundation.org/www/docs/108.1520/what-is-growth-hormone-deficiency.html) and scroll down to the section --- How do doctors tell if a child has growth hormone deficiency? What testing is involved?

Trust your instincts as a parent. If you want to speak with another parent who has been through this-call MAGIC at (708) 383-0808 and ask for Jamie H. They will track me down and I will call you. Good luck!

On Jun 21 2007, anonymous Wrote:
HELP! My son is the smallest in his 5th grad class. I am only 5 foot 2 and my husband is 5 foot 8. His pediatrician keeps telling us that there is nothing wrong with him but never does any testing. He is really a great deal smaller than his classmates. What do I do or what kind of doctor do I need to take him to?

On Jun 06 2007, Tina Kremer Wrote:
Re: Good response to growth hormone in child with ISS.
I saw Shawn Robinson's posting saying that your son has responded well to gh therapy after being diagnosed with ISS. Can you tell me how long it took to see growth with your son? My 8 1/2 yr old son started two months ago, and he hasn't budged on the growth chart yet. He is starting to worry it won't work. We keep telling him to be patient, but we are nervous too! As for your funding question, we are new to this so I will ask questions and see if I get any good advice for you.

On Jun 06 2007, Jamie-Board Moderator Wrote:
RE:MESSAGE BOARD POSTS
Hi Everybody! If you remember- please put the RE: and a topic name at the beginning of your message. It will helps us all follow what topics are being responded to or started. THANKS!

On May 28 2007, Sue Smith RN CDE CNS PNP The MAGIC Foundation Wrote:
Re ISS and Insurance Coverage
What type of insurance do you have and have you placed an appeal? Has Lilly being providing free goods up to this point?
I know that BCBS does not cover ISS as a diagnosis, and have a humber of appeals for other families with ISS ongoing.If you would like to chat about this please feel free to call me at the MAGIC office 1800 3magic 3. There are a number of other things you can try - such as switching growth hormone products and trying different reimbursement programs - as the criteria is different depending on the company used. Another option is buying a non branded GH from a reputable ' cost pay' pharmacy. We can help you explore all these avenues to continue with the treatment.

On May 27 2007, Shawn Robison Wrote:
Hello, this is my first time on this board. My 10y/o son has ISS, and has been on Humatrope for 1 1/2 years. He has responded very well, we couldn't be happier with the results so far. Unfortunately, the Humatrope access progam has changed their inclusion guidelines and our family no longer qualifies.As our insurance refuses to cover it, we are struggling to maintain his therapy. I have contacted several foundations that were suggested to me, but they have been deadends.
We were very nervous about starting growth hormone, but now that we see the results, we could'nt imagine stopping, It has made a such a difference in his life. By the way the reason we are being dropped from the access program is our adjusted gross income was above the level which qualifies(a new rule this year). That being said, paying out of pocket will be financially devastating . If anybody has any comments, or idea's regarding funding I would love to hear it....Thanks

On May 21 2007, anonymous Wrote:
Hi Brian
Idiopathic short stature (ISS) has traditionally been defined as having a height of < 2.25 SDS (means a child is very short) and no ‘identifiable’ cause has been found, in which the predicted adult height is likely to be significantly shorter than the expected height for the family.

Translated into everyday language ‘idiopathic’ simply means "we" (medical experts) are idiots because we cannot identify the reason for the disease. Recent reports seem to suggest that a deficiency in insulin-like growth factor (IGF) may be the underlying cause. To find out more about IGFD watch the IGFD webcast (to see this webcaste copy and paste the link to your browser and then hit play http://www.magicfoundation.org/www/docs/983/igf1_insulin_like_growth_factor.html)
ISS has typically been treated with human growth hormone, although in the future treating with IGF may become the norm.

Submitted By: Sue Smith RN CDE CNS PNP

On May 21 2007, anonymous Wrote:
Can someone tell what idiopathic short stature really is and if there are any new treatments available for it?
Thanks
Brian

On May 15 2007, Sue Smith RN CDE CNS PNP Wrote:
Re; Medical Merry Go Round

We understand your concern and frustration. It is sometimes extremely difficult to tie down a single diagnosis or give a name to a bunch of independent features and symptoms. I would caution you to avoid striving to find a known ‘name’ for Brison’s condition, and concentrate for the time being on treating the symptoms. Any time a child fails to grow both in height and weight the correct course of action in my opinion is to consult a pediatric endocrinologist and its sounds like you have done that and are on the way to getting a evaluation.
Here are some questions I would be asking the pediatric endocrinologist:

If the stim test results are normal, where do we go from here? Would GH still help his poor muscle tone?
If the stim test shows he has a low growth hormone level will we be able to get growth hormone treatment for him and if so what are the likely long-term outcomes?
Can we have a time frame for next steps in the evaluation?

If you have any further questions I would be happy to chat with you about this, I can be contacted at 1800 3 MAGIC 3

On May 15 2007, Penny Wrote:
Hi Everyone,
I am new to all this gh stuff, although not new to knowing my 31 mo. old son is very small. We are on the mediacal merry-go-round and it is driving me crazy. I hope someone can help point me in the right direction. My little guy's name is Brison and he is 30 and a half inches tall, 19 and a half pounds, and head is 18 and a quarter inches. We have known since he was about 11 mo. old that something was different. Actually I knew when he was born that he was different. He never did gain weight well or get a good growth spurt. He was 6 pnds. 1 oz. at birth and 17 and a half iches long.(my other 3 kids were all around 8 pounds) At 11mo. we started going to the genetasist and last yr. at the NIH He was diagnosed with Rubinstein-Taybi Syndrome. Now that is being questioned because he is very small even by RTS standards and he is meeting all his milestones now and talking up a storm. RTS almost always comes with mental retardation. Brison was delayed more physically when he was younger due to low muscle tone but, it seemed like he did things at the size he was supposed to, not the age if that makes any sense. Brison's bone age is neither delayed nor advance. We are now taking him to an Endo in St. Louis and he will go for a stim test in 2 weeks. She thinks Brison does not have RTS too. I am tickled that 2 Dr's now think this diagnosis is wrong but, now we are wondering what now. Brison does have some anomolies although they are minor and nothing health threatening. His rib cage is small and a little assemetric which pushes his little belly out. He has a lot of body hair and of course the extra skin on the eyes and the depressed nasal bridge. His skelatal x-rays come back normal so nothing there. He has other anomolies like webbing between 2nd and 3rd toe. He has had a FISF teast and other tests of the like all came back normal. Anyone heard of anything like this? He has now fallen off the growth charts. He did run in the 1st and 2nd percent before. My husband is 6ft and I am 5'5 and do not have too many short people in our family. Thanks for letting me ramble. Any ideas would be helpful. I know sometimes parents who have been there and done that can have a better perspective that Dr's. I am not asking for a diagnosis, just idea's or things to ask the Dr when we see him again. Thank in advance!!

On May 14 2007, Jamie Harvey Wrote:
Hi - It sounds like your son has a condition called Idiopathic Short Stature. Many children respond well to the therapy but unfortunately others do not. It usually takes a good 6 months to see if your son will respond well to the treatments. We have a private listserv (message board) on Yahoo where you might want to post your question. You have to apply for membership to it (we have a moderator who approves membership to keep out the sales and other inappropriate things). You have to have a yahoo ID to gain access. If this is something you are interested in, please email me directly and I will send you the information (jamie@magicfoundation.org). Or feel free to call me at 1-800- 3 MAGIC 3 and ask for Jamie. They will get in touch with me and we can talk directly. I am sure I can help answer your concerns!

On May 14 2007, tina Wrote:
hi,I just found this site and am not sure exactly how it works. I have a 8 yr. old son with slow growth. His growth slowed dramatically as an infant for almost 8 months (growing several inches instead of the normal 7-10), and since then has grown about 2 in. per yr. Just the edge of normal. He has been below the growth chart since he fell off at about 1 yr. old. We just started him on daily shots of Nutropin even though his gh testing came back in the normal range. Has anyone had a child go thru gh therapy when there wasn't a true deficiency? What were your results? He has been on the shots for 6 wks. and we are wondering when we should see results. I am a nervous wreck worrying if I am doing the right thing, but felt it was time to do something. Our endocrinologist has been very supportive. any insight would be welcome.

On Apr 22 2007, anonymous Wrote:
is there anyone out there w/ a almost 15yr old by w/ GH of 5 that has not started him on GH and if so what has happened. or has started him this late in the game and what has happened.

On Apr 11 2007, anonymous Wrote:
Hey Karen!

I have a link to my story below- it is on the MAGIC website- and I will be glad to help you. I am not here to "sell" you anything. I am not a medical expert. I am just a Mom (as you will see from my story) who has lived through this in more than one way. Feel free to call me if you want to talk! I am "technically" on vacation right now...but I hear your anguish in your words. Been there.... anyway...I am not checking my emails more than once a day while "vacationing at home ;-)...so feel free to call me! That is why I am here!

I am on the east coast- my number is (number deleted).

Also- I am including a link to MAGIC's growth hormone list serve which is private- it is restricted to parents (not all use gh) to keep all the sales and trash out of the listserve. It is a REALLY good place to go for help too. You have to go to Yahoo and get an ID and then click on the link I have for the listserv below. You will be asked to send a request to join the listserv and the "moderator" (her name is Anita and she is the gatekeeper for appropriate content- she is incredible and does a huge volunteer service for MAGIC) ...anyway Anita will send you an email within a few days, authorizing you on the listserv. But in the meantime, feel free to call or email me.

Hang in there! It will get better for you I promise!

Jamie

Here is my story: http://magicfoundation.org/www/docs/929.711
Here is the gh listserv: http://health.groups.yahoo.com/group/MAGIC_list/

On Apr 10 2007, kd Wrote:
Jamie, thanks for answering my email, how do I get on this message board, I really need some feedback on this, I have been sitting on the fence about gh shots. he will be 15 in July.

On Apr 10 2007, Jamie Wrote:
It is not uncommon for gh children to have a delayed bone age. If you want to call me directly, we can go over how this affected my daughter too. My name is Jamie and my phone number is (229) 247-6258 or email me at jamie@magicfoundation.org

On Apr 10 2007, anonymous Wrote:
my 14 1/2 year old son was diagnosed w/ low growth hormone and also low thyroid, put him on Synthroid but have held off on Growth hormones b/c his bone age is 12 1/2 years old. does this mean he is constitutional growth delayed, has anyone else went thru this?

On Apr 03 2007, VN-Ohio Wrote:
Dear Jamie,

What a relief to know we are not the only family dealing with this issue. Our youngest son was born in 2000. Our stories sound very similar. The only difference is that my husband is only 5’ 1”. As a result, we were also dealing with the “it’s genetics” argument. Our son has been on Increlex for over a year now and we are very happy with his progress. He is still very small for his age, but what he lacks in height, he makes up for in personality!

Thank you so much for sharing your story with us.

On Apr 03 2007, anonymous Wrote:
Score another win for mother's intuition with the assistance and guidance provided by the Magic Foundation!

It would have been so easy to accept the dismissal of any early development problem concerning my then 6 year old daughter's pediatrician in Florida . He dismissed me as just a worried mom. But I found the Magic Foundation via the web!

I probably could have comfortably listened to the medical specialist, an endocrinologist, in West Palm Beach, Florida. Her initial examination and testing resulted in a wait and see prescription regarding possible treatment for my daughter just turned age 7. This even though my daughter had a bone age of a 9 1/2 year old. The Magic Foundation raised the red flag and instructed this mother, "No surrender".

I then visited a Magic Foundation recognized Pediatric Endocrinologist, Dr. Paul Desrosiers in Orlando, Florida. After two visits and testing, Dr. Desrosiers determined that my 7 year old daughter, has the ovaries of an 11 year old and required a strong hormonal treatment to begin immediately. He backed his findings up with clear, precise lab reports! Reports even this just a worried mom could understand.

Thank-you Magic Foundation! Thank-you Sue Smith, R. N.. Thank-you too Denise de Reyna. Thank-you all for being a beacon of knowledge and guidance so that my daughter can now begin the proper medical treatment.

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