Insulin-like Growth Factor

On Aug 12 2008, anonymous Wrote:
Clare- can you email me directly? I can help you. jamie@magicfoundation.org

On Aug 12 2008, anonymous Wrote:
thanks jamie, ive logged onto the site but cant find a chat bit like on this forum! thanks anyway for directing me there

clare

On Aug 12 2008, Jamie Harvey Wrote:
Hi clare- this message board is closed. I went ahead and coded your message to go through as you are seeking help from England and wanted to make sure you got help. Please read the instructions above or go to the IGF page and click on the Yahoo button to go to the active Listserv. Thank you.

On Aug 12 2008, Clare,England Wrote:
Hello

My sons 3.10year old sons IGF1 has been monitored for the last year, due to other pituitary gland problems. His IGF1 has been very low for 3 readings and the last one done 4months ago was slightly up at 51 (readings of 50 - 250 classed as normal for his age/weight etc)

He has grown about 1.5/2cms in the last 5/6months.

He is skinny, weighs 30lb, and has the narrowest feet ive ever seen.Every time i take him to have his feet measured i have the usual comments "wow, ive never seen feet that narrow".

My question...does his growth seem ok to you all? The paediatrician said that i would probably notice his growth slowing right down and would be very noticeable aged 5/6years old. He wears aged 2/3 clothes

On Jun 23 2008, Joe CAH Coordinator Wrote:
To Christina Lambert:

Wow what a tough time you and your family have had. To me the good news about your son's height is his bone age being only 12. What you describe sounds very much like CAH, however if he had CAH hs bone age would be older than his actual age and his growth would be done. Hopefully your doctors will either 1) find out what is wrong and treat him or 2) find out that all that he is suffering is late growth. If you want to talk to CAH families check out the CAH message board. Good luck with everything.

On Jun 23 2008, anonymous Wrote:
Hey Christina,

I think you wrote to the wrong board. Try the CAH board and you will get better help. Or email the CAH director at CAH@magicfoundation.org. She is the Mom of a CAH son and can really help you.

On Jun 21 2008, CHRISTINA LAMBERT Wrote:
HELLO,

MY SON WAS DIAGNOSED AT BIRTH WITH CONGENITAL ADRENAL HYPOPLASIA. THIS IS A LIFETIME DISEASE WITH A LACK OF SEVERAL HORMONES. WE WHERE TOLD MY SON WOULD NEED TO BE ON THESE HORMONES FOR LIFE TO SURVIVE. AT THE TIME IT WAS THE ONLY ENDO PEDI IN SAN ANTONIO. WE GAVE OUR SON THESE HORMONES FOR 3 YEARS. A NEW PEDI ENDO CAME IN TO ASSIST AND THE OTHER ONE LEFT A MONTH LATER. TWO MONTHS AFTER THAT THE NEW DOCTOR TOLD US THAT OUR SON WAS MISDIAGNOSED AND THAT HE DID NOT NEED THE HORMONES. WE WHERE HAPPY BUT SCARED. WE THOUGHT WHAT IF THIS DOCTOR IS WRONG? HE WOULD DIE. WELL HE IS ALIVE AND WELL AND 15.2 YEARS OLD NOW. HE WAS ON THE 90 % AT BIRTH AND STAYED THERE UNTIL THE AGE OF 8. THEN AT AGE 10 HE DROPPED TO 10 PERCENT AND NOW IS A 5 PERCENT. HE HAS ALWAYS LOVED SPORTS BUT NOW IS SMALLER THAN THE SMALLEST BUY AT LEAST A HELMET SIZE. WE WENT TO THE PEDI AND SHE REFERED US TO A PEDI ENDO WHCICH NOW THERE ARE LIKE20 IN SAN ANTONIO. HE TOLD US HIS GROWTH DID NOT LOOK RIGTH AND TOOK ADOLFOS BLOOD IN A MATTER OF 10 MINUTES. 3 WEEKS LATER HE WAS GIVEN TESTOSTERONE FOR 6 MONTHS. THEN NOTHING. THIS STARTED AT AGE 13 AND HE HAS ONLY GROWN ABOUT 1 INCHE IN THAT TIME. HIS BONE AGE NOW IS 12 AND HE IS 15.2. I AM A LITTLE CONFUSED AND WORRIED BECAUSE WE ARE BEING TOLD HIS GROWTH HORMONE IS FINE BUT WE HAVE NEVER HAD ANY TEST LIKE THE ONES IN THIS FORUM. I AM AFRAID THEE IS SOMETHING WRONG AND IT IS NOT BEING FOUND. IT BREAKS MY HEART THAT MY SON IS ALWAYS SO UPSET ALL THE TIME BECAUSE OF HIS STATURE. HE IS A BUBBLY OUTGOING CHILD AND IS NOW BECOMING WITHDRAWN.I AM SADDEN BY THIS IT IS MY GOAL AS A PARENT TO MAKE ALL MY CHILDREN HAPPY. MY TEN YEAR OLD GIRL IS 59 INCHES HIGH AND MY 4 YEAR OLD GIRL IS 46 INCHES HIGH. I AM 5.9 AND MY HUSBAND IS 6.1. PLEASE HELP!! IF ANYONE HAS A SIMILIAR CASE I WOULD LIKE TO HEAR IT. I WANT TO SEE A SMILE ON MY SONS FACE. HELP!!!

On May 30 2008, Jamie Harvey Wrote:
Anonymous- you can personally email Jamie S (igfd@magicfoundation.org) who is a mom of an IGF child to contact you. She is the IGF director for MAGIC and has a great deal of experience. If you need more help, I am here for you as well. My name is Jamie Harvey (different Jamie) and I am a co-founder. My email is jamie@magicfoundation.org- we are just parents who have all gathered via MAGIC to help each other. We have all lived this nightmare! You are not alone! We can help! We also have a very active and easier to use Yahoo listser Jamie S can hook you up with. We have about 80 IGF families who constantly post messages for help and ideas.

On May 30 2008, anonymous Wrote:
Hello;
I am grateful to have found this site as we have just recently found that there are medical reasons as to my son's slow growth. My husband and son both want to keep this very private so I have not been able to talk to anyone about it and am going crazy!
My son will be 13 in Sep. He is 54 inches tall and weighs 58 pounds. He is the 2nd of our 5 children and all of our other kids are growing normally. We always just attributed his small size to the fact that some of the boys on both sides of the family grew very late, sprouting up in the later high school years. He was born at 7 1/2 pounds but quickly fell off the bottom of the growth chart by 3 months. His pediatrician advised me to stop breastfeeding so I could give him formula with cereal in the bottles etc. He has always had a great appetite, has been a star athlete in baseball and football. His growth curve was always slow, but consistent, even though it technically wasn't even on the chart, so his Dr. never seemed overly concerned. At his last physical about a month ago we found he had grown 1 3/4 inches in 1 3/4 years and his Dr. suggested we visit a pediatric endocrinologist just to rule anything out. We did and found out his bone age is almost 12, and his levels to be normal except for a very low level of IGF-1. He went in this morning for his growth hormone test (3 hours with blood draws every 15 minutes). We will meet again with the Ped. Endo in 3 weeks to go over the results. I am relieved to see that there are options if he has primary IGFD or growth hormone defiency, but am still feeling a bit overwhelmed taking this all in. He seems to be almost relieved that there is a reason he is so much smaller than all his friends and is anxious to get any treatment started.
That's my story. Hoping to hear back from some of you who have gone through this. Thanks!

On May 10 2008, anonymous Wrote:
Hi Jamie and all,

I first want to Thank you Jamie for taking the time to talk to me on the phone about six weeks ago.
I called you when we got diagnosis of Primary IGF-1 for my son and you were a wealth of information for a newbie to this.
My son is 12 1/2 and was just tested in January.
He always "hovered" on the 5% end of the growth chart for height but last year he fell off it and has consistently stayed below the norm since then.
Once we had the diagnosis we started the battle with the insurance company to cover the cost of Increlex.
I am happy to report that even though it took a few months we have started Increlex this week.
So far so good. Although I am not afraid to admit that I am still very nervous with each injection I have to give him.
I have always had a needle phobia myself so I find it ironic that now I have to give them.
Thankfully my son handles it MUCH better than I would and so far hasn't asked for a new "nurse".
I have requested membership to the Yahoo message board and look forward to meeting you all there.

On May 05 2008, Jamie S. IGFD message board moderator for MAGIC Wrote:
Margie,

Welcome to the MAGIC message boards! You have come to the right place to get support from other parents who really know what you are going through. There is a listserv on Yahoo Groups that is devoted to IGFD. There is much more activity on that board. If you go to yahoo groups and search for IGFD you will find it. It has been a wonderful support for all of us! I would also be happy to talk to you anytime. My phone number is 952-442-5668. I have a daughter with IGFD and she is 7. She has been on Increlex for a little over a year now.

On May 02 2008, Margie from Claremont ,California Wrote:
Hi Everyone,
My son is 7yrs and 10 months. He is 38lbs and 42 inches tall.Bone age of 4yrs 6 months. He has IGFD and high levels of growth hormone. We just started increlex on Monday. So far so good, no reactions. I would be interested in hearing from other moms. It'a all very scary!

On Apr 30 2008, clare,england Wrote:
my son has had the results of his 3rd IGF1 reading and its nearing the normal level now. Most strange, its been very low for 2 readings and now nearing normal,although still a bit low.

On Apr 26 2008, anonymous Wrote:
Hi Shelley,my son is 3.5 years old and is 37" tall, he has measured low on IGF twice now.

He hasnt had the growth hormone testing yet as he has other pituitary problems.

So am i understanding from your message that even if the child does indeed produce growth hormone, that there is a drug specifically for IGF1 deficiency.

Im in england by the way

On Apr 09 2008, Shelley in Idaho Wrote:
On Tuesday, April 8, 2008 we receive the diagnosis that our daughter has IGF-1 deficiency.

Jenna, age 3, was born small (4# 14 oz and 18.75")and has always been small. She stands 34" and weighs 23 pounds. She is otherwise developmently right on target and verbally way ahead of her age. (She gets that from her mama who could be called 'chatty'!)

When she was 18 month old, I asked our doctor if we should 'do something' about her size. I was always getting comments like "your baby can sure hold her head up well!" She was 18 months old, I would hope she could hold her head up!

This lead us to a pediatric endocrinologist when she was 2.5 years old. He told us to wait until she was three. He tested for IGF and it was very low. Then the end of March, we did the 'four hour growth hormone test' that is actually 7 hours and not very fun. Turns out she produces plenty of growth hormone. It is the IGF that is at issue.

So, we are very new to this process. The doctor is filling out the paper work for our insurance to seek approval for the medication. I am a bit nervous about giving my child medication so recently approved by the FDA and whose long-term effect do not seem to me to be really known.

Just thought I would sign on here and say if anyone out there is reading and could offer me advice, I would appreciate any insight!

Thanks.

On Dec 30 2007, Sherri Wrote:
Hi fellow Increlex parents.
My name is Sherri. Im a mom of an 11 year old son who is 49 lbs. and sits about 3 foot 9. He is and always has been the smallest kid in his class. As my husband and I are not very tall me at 5'3'' and hubby at about 5'6'',my 15 year old daughter is 5'3 already. Blake
has been seeing an endocrunologist for almost 5 years now, and we started the IGF1 (Increlex) twice a day in November 2007. We are part
of a clinical trial based at Childrens' hospital in Phialdelphia.
So far .. so good !! We go to CHOP every 3 months, and at this time Blake has had NO side effects and seems to be going great !
Its too early to tell at this point but, in the 1st month be did grow
an 8th of an inch. Be time for a kid who as been wearing the same size 6 jeans for years.
I too have had a hard time deciding to go forward with this or not, It is a very scary thing.. not knowing if you are helping or hurting your child. But I am sure We made the right decision. I just cant wait to see my son achieve all he dreams of!!
Also, he has been drinking Ensure everyday, it really helps put soe weight on!
So look forward to hearing from parents who have children that are my son Blake's age (11 yrs 4 mons), that have been taking Increlex.
Thanks .. take care
Sherri

On Dec 21 2007, anonymous Wrote:
Just come back today from my sons hospital stay and he is now going to be called back in for a glucagon test as his IGF1 levels are very low. The doc said that even though his growth has been ok that now we could see him fall off the charts and for his lack of height and small frame to be more noticeble. Does this mean that he could actually stop growing altogether at somepoint and is this why hes having the glucagon test? another mother at the hospital told me that her daughter was fine till the age of 5 and then stopped growing altogether and was then put on treatment.

thanks for any replies.clare,england

On Dec 19 2007, Jamie S., moderator of the IGFD message board for MAGIC Wrote:
Revonda,

I would be happy to talk to you about your concerns with Increlex. We faced the very same concerns when we made the decision to put our daughter on it. I have talked with people whose children were in the very first trial study and who took it for 10 years or more and grew to normal height. Our daughter who is 7 has been on it since April. She is doing very well and has had a great response. Please feel free to email me your phone number at IGFD@magicfoundation.org and I will give you a call and we can talk about it if you want. I hope to hear from you!

On Dec 19 2007, Revonda Wrote:
My son is 17 months old and is panhypopit and we just found out he has no IGF1 levels at all. My son's doctor wants to start him on increlex but we are all scared to start him on it because of the low blood sugar levels and because the drug is pretty new. The drug has not been tested for children under 2. I am also worried that years down the line they're going to find out the drug has some bad effects after people have been taking it for years. We dont know what to do. Has anyone's doctor told them what will happen if they don't treat their child with increlex?

On Dec 15 2007, anonymous Wrote:
hi there, my son is 3.2 years old and has diabetes insipidus and 6months ago was tested for low IGF1. We are back into hospital on Monday 17th december for a week for more tests and to check his IGF levels again. His paediatrician is pleased with his growth at the moment. He is very very skinny and measures 37" in height. I have been injecting him twice a day for his diabetes insipidus and hopefully while we are in the hospital he will be tried on a tablet form of his drug. Im presuming this is because if he is still low IGF it would mean daily injections, so 3 injections a day would be pretty unpleasant.

Its so good to find a site particularly for IGF deficiences.

Im in England and from what ive read on here im very fortunate that i dont have to worry about Insurance and paying for treatment. Ive moaned endlessly over the last 3 years about our National Health System and now i think myself fortunate that we have it.

On Dec 02 2007, Patty Wrote:
Brandi,
Normal IGF1 range depends on the age of your child. You can request a copy of your childs labwork or ask your endo's office for where s/he falls in the range

On Nov 26 2007, Jamie S. moderator for the IGF-1 message board for MAGIC Wrote:
Pam,

Hi, I am glad that you found MAGIC too! It has been a great source of support for our family!
As for the testing they are going to do it can be scary at first. The hardest part truly is getting the IV started. I assume we are talking about a growth hormone stimulation test right? Once the IV is in then it is mostly just sit around and wait. They gave our daughter some medication that is supposed to stimulate the growth hormone and then they took blood every 15 to 30 minutes but they got it all right from the IV so they DID NOT have to prick her again. I think a DS would be a great thing to help pass the time! Our daughter was younger so she just colored and watched movies. It really is not that bad it just takes a lot of time.

I wish your family luck, I hope you have a great holiday season and keep us posted!

On Nov 26 2007, Pam Wrote:
I have a 6 1/2 year old who is only 39 inches tall (2 percentile) He's been seeing an endocrinologist for 2 years now, who has been monitoring his growth. He's had 2 bone age xrays, and his chronological age matches his bone age. He's had a second round of blood tests done a few weeks ago, and his endocrinologist called and told us that he'd like us to do formal growth hormone testing b/c the single draw showed that his growth hormone levels looked a bit low. I was hoping some of you could give me some advice of how to prepare him for this test. I was thinking about buying him a nintendo ds to play with at the hospital (he's been begging us for one and we havn't even considered buying one until now, but I was thinking it may take his mind off of the testing - what do you think?) I also wanted to chat with Ruthann and find out who her endocrinologist is at CHOP. We live in the philadelphia area, and would love to find a doctor who is really good. Thanks so much. I'm so happy to find a place where we may be able to get some support.

On Nov 15 2007, Monica Wrote:
My 13 month old daughter has been diagnosed with IGF-1 deficiency. She is around or slightly under the 5th percentile for height and weight. She had normal growth hormone levels. She has been recommended to start on Increlex, but we are unsure of what to do, as the studies that have been done have all been for children over the age of 2. We are concerned about side effects and long term effects, as the druge is so new. Does anyone have a child that started on the drug this young? If so, how did they respond?
Also, she was diagnosed with hypothryoidism at about 9.5 months while her newborn screeing for that was normal. Also curious if any others with IGFD also have hypothyroidism.

On Nov 13 2007, brandi Wrote:
can anyone tell me what the normal range is for IGF 1 is

On Oct 22 2007, Jennifer Wrote:
Jamie S. Thanks for your response. I have just tried to join the Yahoo group. I live in Houston. The endocrinologist is not suggesting any therapy right now for my 6 year old because she has had a normal growth rate now for 4 years and has no other symptoms. He says we would probably qualify though because she is more than 2 standard deviations below the chart. We are not exploring nutritional issues such as Celiac which we do have in our extended families on both sides. Thanks again for your response. Our endocrinologist wants to do some follow up tests on our 20 month old within 3 weeks.

On Oct 19 2007, Jamie Sorensen, moderater of the IGFD message board Wrote:
Hello Jennifer!

I also have a 6 1/2 year old daughter with IGFD. She has not been on the growth chart for probably 5 years now.

IGFD can be from a nutrition deficeincy but if you have shorter people in your family I would think that is not what is going on here. Especially if you have two children with low IGF-1 levels. Have they talked to you about trying some Growth Hormone or Increlex (the IGF-1 replacement)?

It is hard to see your kids have to go through all these tests. Michelle (my daughter) had to go through the same thing. The only thing other than low IGF-1 that they could find was kidney reflux which they say can not cause the low IGF-1. Where do you live if you do not mind me asking?

As for the liver all I know is that IGF-1 in made in the liver. I am not familiar with the other thing that he had high levels of at all. When are they going ot start doing the other tests?

To join the yahoo group find the link that is in the July 6 posting from Jamie H. That will take you there!

Good luck and keep us posted on how things are going for your family!

On Oct 18 2007, Jennifer Wrote:
My daughter is 6 1/2 and has low IGF1. She passed a GH stimulation test with flying colors. She is more than 2 standard deviations below the norm. (i.e. not even on the charts and hasn't been since she was 2) We've been referred to a gastro doctor, a kidney doctor, and endocrine doctor and gone to them all and they don't seem to know if anything is wrong with her or if "she's just going to be short". We have shortness (but not official dwarfism in our family - 5 ft women) Lots of tests have been "equivocal" for kidney and gastro issues and she literally has no other symptoms.

Now, my 20 month old has stopped growing ( about 6 months ago - exactly when my daughter stopped growing) and found out yesterday that he has low IGF 1 AND high alkaline-phosphatase (created by the liver) Also, IGF1 is produced by the liver. Anyone have any insight into low IGF1 and any connections to liver or bone problems?

They both are very healthy and bright otherwise.

The docs are telling us that kids can have low IGF- 1 because of nutritional deficiencies. Again, a referral to a GI doctor.

It seems as though we are going to be facing a battery of tests for my 20 month old and probably again for my six year old.

I would love some advice and to join the yahoo group.

On Oct 09 2007, Nancy Wrote:
Hi Ruthann and Shallon and all,

I also have two children with IGF-1 deficiency. I have a 13 year old who has been on Increlex for 6 months and a 10 yr. 10 mos. daughter who haqs been on Increlex for almost 3 mos. The insurance co. agreed to cover my sons treatment after one appeal and have since denied my daughters 1st appeal. They require a -3 sd and she is not quite there. My son has grown about 1.5 inches in the last 6 mos (He started at 56" about 2 mos. before his 13th b-day. My daughter has not yet been re-measured, but I'll keep you posted. The drug company that supplies Increlex has been very helpful with the appeal process and told me they have a generous patient assistance plan for those who cannot get coverage. It's worth looking in to for those who are using Increlex. It is all overwhelming at first, but you get into a routine. My husband sits down every Sunday night and draws up about 28 syringes for the week ahead and I make sure they get the injections. My son does his own half the time, but my daughter is to scared. She still complains about almost every shot hurting. He never does. I too wonder if we are doing the right thing. How can you know. I am considering getting me and my husband tested just to see if we are IGF-1 deficient. Keep in touch and let me know if you want to talk!

On Oct 05 2007, Ruthann Wrote:
Anonymous- thanks for replying to my email. I took my son for a second opinion at the Children's Hospital in Philadelphia. There was a wonderful pediatric endronologist that validated my belief that we should go ahead and start HGH treatments.

We started my son last Wednesday on 2 mg per day. He has been giving himself the shot and I have been very pleased with his effort. It took him some time to get used to the idea, but after seeing the video and seeing the size of the needle, he was ok with it. I emphasized the fact that HIS needle was MUCH smaller than the one in the video. :)
It seemed to work.

We are waiting for the insurance company at this point to decide whetehr they will approve the genotropin or not... we'll see. I'm afraid to say that if they don't, we'll be hard pressed to find the $3k per month to continue the treatments. Pziser has sent us the medication (thankfully!!) and are attempting to get us approved througb the appeal process. We'll see. I sent them a letter (a long one) and photos of him with his peers.

Yes, let's stay in touch. Feel free to call me if you would like (717) 274-8504. :)

On Oct 04 2007, anonymous Wrote:
Hello Ruthann,

We have similar situation w/ our kids. My Son is 12 year and 9 months old. He is 55" tall. His growth rate had decline in the past 5 years (dropped from the 20% chart to below the 3% chart). His bone age is like 11 years old. His IGF-1 is 199 which is at the low normal rang. I am also considering GH treatments and plan to have 2nd opinion from Ped Endo. My son is also athletic and bright. Lets touch base and share more information after the appointments w/ the endo.

Any other parents with kids with similar situation (not a clear cut GHD or IGHD) who went through this? Would be very helpful if you can share with us how you made your decisions.

On Oct 04 2007, Kathy Speer - Ojai, California - speerwalker@sbcglobal.net Wrote:
REPLY TO Shallon Miller 9/22/07 message:

Hi Shallon - I'm new to the whole IGF-1 diagnosis. My daughter, 2.5, was diagnosed last week. Fortunately, I've already spoken with Jamie, which was a tremendous help.

I'm responding to you in particular because of what you wrote at the end of your email; whether any states test for this disorder at birth. My thought is that it's too rare; it wouldn't be cost effective, I'm sure, for the hospital/doctors/patients. And aren't we all the ones who are especially aware about how our health care system REALLY performs.

I would like to see such testing done if the child is small for gestational age. I had so much trouble with my pregnancy. I was sick all the time and just couldn't gain much weight. The doctors were very concerned about my daughter's size, and finally put me on bedrest the last month to conserve calories, for her sake. While they expected a 5lb or under baby, she was 6.2. But then she went downhill after getting RSV at 14 days of age, and never made it back to "normal" growth rates. I think when you have kids that in gestation, are showing signs of what doctors like to call "FTT", they should consider this test.

On Sep 22 2007, Jamie Sorensen, moderator of the IGFD message board Wrote:
Shallon,

I am glad that the insurance company agreed to pay if it proved to be effective. That will help for sure.
As for the required testing I do not believe that any state requires it. It is a very rare disorder.
IGF levels vary greatly depending on age. I am not sure what the average range is for every age but it is possible that having a 52 at your daughters age could be just as below normal as 31 for your sons age is. It is hard to say.
I will be thinking about you this week. Please keep me posted on how things go at the appointment this week. I can imagine this is probably overwhelming dealing with 2 children being affected. I have heard of other families that have dealt with the same thing. Hopefully they read this and they can get in touch with you.
If you need anything please do not hesitate to call me!

On Sep 22 2007, Shallon Miller Wrote:
Wednesday evening my little girl Brookelynn age 2 was confirmed to be IGFd. Her pediatrician had suggested we wait until Christmas and remeasure her because she felt like the likelihood of BOTH of my children having the same disorder although she acknowledged it looked as though she may. I agreed but then when I came home that afternoon I thought about it and I knew in my heart I couldn't wait so I called back and asked her nurse to have her go ahead and order the somatamedin-c (aka IGF1) bloodwork on Both of my children. I wanted both because it has been 6 months since we checked Grayson (age 4). His Igf level was 31. Her Igf1 level was 52. Both were extremely low, but I just can't figure out why her's would be higher than his.
Regardless their pediatrician called me from her home on wednesday afternoon (she doesn't work on wednesday's) almost in tears....she took the news much harder than I did. She told me she was so glad I had asked her not to wait because that would have only delayed a diagnosis and treatment. By the way, our Insurance company isn't paying for it but we did speak with them about that and they told us that if we paid for it long enough to prove it effective they would cover the costs from there on through the completion of the treatment. My parents jumped on this opportunity to help offset the cost for those months. So we will see their endocrinologist at the children's hospital in Chattanooga this Thursday again and will begin treatment for both although I'm not sure Brookelynn will qualify since her IGF1 level is 57, I don't know what constitutes Severe IGF1 deficiency.

On closing though, I have a question that probably can't be answered. Are there any states that require testing for this disorder at birth? I think that this should be a test that is required for every child at their 1 or 2 year well child check.

On Sep 15 2007, Ruthann Wrote:
My 13 year old son is 54" tall and weighs 78 lbs. He has not grown much at all in the last year or so. He still wears the same shorts that he did in the beginning of last summer. He was tested and the results showed 11.4 GH and 162 IGF-1. So far the insurance has denied his supplies and we plan to appeal it. I am still a little nervous to start him on GH only because his levels do not fall outside of the normal range. Both are on the low end though and considering his small stature, I am inclined to go ahead. I have a second opinion scheduled for October just to be sure. It's hard when we have to gamble with our children's health. Otherwise, my son is very healthy and bright-- I would hate to change that. I'm just unsure!

Does anyone else have a child that falls within the normal range for both??

On Sep 11 2007, Meredith in Colorado Wrote:
Dear Shallon,

I completely feel your pain. Your story sounds EXACTLY like mine...I have a 5 year old with no IGF-1 and way too much growth hormone. We have not tried to start treatment because the doctors are still running more tests. We also had an idiot pediatrician who said the same things to me as yours did - then when my son turned 4 it was finally time to "do something". Needless to say, I no longer see that pediatrician. We've run across the same issues with sports, etc. It's so very hard...I'm speechless sometimes. Just yesterday when my son lined up with his Kindergarten class (we've been in school for a month now) another mom said "Is he in this class?" "Really?" Then she said directly to him "You're five?" My son is 38" tall and weighs about 33 pounds at age 5 1/2. It broke my heart because people should really be more sensitive!!! I would love to e-mail you directly or talk on the phone and give each other support. Hopefully the moderator for this board will help us do that. In the meantime, please know I am going through the exact same ordeal. Maybe together we can figure out how to help our children. turefugu@comcast.net
Sincerely, Meredith

On Sep 10 2007, Shallon Miller Wrote:
My name is Shallon and I am a mom of a child with igfd. he started his life at 7# and was 19.5 inches long. When he was 9 months old he started to cross percentiles and look much younger than other children his age....and I feel so completely stupid because month after month he didn't grow and he was dropping percentiles and i would question his then pediatrician, and he would look at me like I was a blithering idiot and say "Shallon, has he grown since he was born?" and I would of course say yes because he obviously had, and then he would say "Don't worry about it, he'll grow when he is ready". I wish now I had throttled him when I felt like it. I let that happen for 2 long years to my little man, for 2 years I let that idiot doctor tell me that 'he'll grow when he's ready' bull. Now he is 4 years and 3 months old. He is 37 inches, and weighs 29 pounds. Not even on the growth chart. And over and over I run it through my head, why didn't I do something sooner? Why did I let him fall ALL the way off before I told that doctor where to stick it? It took one visit, and one little blood test to tell the truth of it all. He had IGFD without any gh deficiency. Our insurance won't pay for it. We can't afford to pay for it, and now today 9/10/07 I was told at my little girl Brookelynn's 2 year well baby check that she has fallen from the 80th percentile to the 20th. Her pediatrician says lets watch her for a month or two and remeasure but she also told me that I should go ahead and brace myself because more than likely given her brother's history she will continue on this downward trend and will prove to be IGFD as well. So what on earth am I going to do? I can't afford to pay for ONE of my childrens IGF therapy, how on earth will I ever find a way to pay for BOTH of them? It's so hard. Our insurance says no way, that while Grayson's disorder is tragic it is in no way life threatening and therefore doesn't require treatment. I would sure like to know who gets to make the decision that children should have to suffer with a highly treatable disorder? And what can I do? Nothing, but wait and try to explain to them when they ask why everyone else is bigger, why they're holding them back in soccer, etc. Grayson can't even play with his age group in soccer b/c theyre afraid he will get hurt, so he is stuck playing with toddlers. It's really difficult...I am just lost as to what to do. I've tried getting "free trials" etc, but the doctor didnt "check the box" that would allow them to get the free trials. It is ridiculous. I hate it. I wish it were me and they were normal.

On Sep 05 2007, Jamie Wrote:
Valerie, have you tried changing the injection area to one more comfortable? My daughter hated the idea but tried her lower stomach and found it MUCH less painful.

On Aug 19 2007, Valerie N Wrote:
My son's dosage was recently increased to 16 units per injection. This seems to be causing him pain during the injection. Does anyone have any suggestions as to how to administer the injection without causing so much discomfort?

On Aug 12 2007, Patty Wrote:
My son has low IGF, but is being treated with GH initially to see if that will raise his IGF levels. He is 4 yrs old and started injections about 1 1/2 months ago. As would be expected, the shots were scary for him at first, but then we seemed to get passed the big hurdle and he was doing well. Suddenly, he seems to have regressed back to not wanting them, and wants to put up a struggle. I did try doing it while he was asleep, but he woke up and that didn't turn out any better. Does anyone have any suggestions as to what worked well for them? I was also wondering if anyone's child experienced bouts of fatigue or fussiness when they first started the injections? It seems like his tiredness could be related to the shots if his body is responding and is growing more than it has in the passed few years.

On Aug 06 2007, Jamie S. Moderator of the IGFD message board Wrote:
A TV Company based in the UK has approached the foundation to help them find two families with young adults with Primordial Dwarfism that would be willing to particpate in a documentary about the life of a 25 year old with PD. They are particulary interested in people between the ages of 18 and 25. If you are interested please contact the MAGIC office at 1800 3 MAGIC 3 or email sue@magicfoundation.org

On Jul 22 2007, Jamie S. moderator of the IGFD message board Wrote:
Hello again it is just me! I wanted to say that we just got back from the annual MAGIC convention. WOW what a fantastic time! I could have never have imagined just how wonderful this was going to be for my family. I was so nice to talk to other families that truely "get it" and to get all the information the experts had to say during the educational segments. We learned a lot and met so many wonderful people. I highly recommend this for next year! Truely amazing! I hope everyone had a great weekend.

On Jul 17 2007, anonymous Wrote:
URGENT- if you are planning on attending the convention- please call the hotel to make sure your reservations are in tact. Call: Malia at 847-777-6500 (unless you have spoken with her in the past 3 days) to confirm: refrigerators, roll-a-ways and cribs!

On Jul 10 2007, Jamie H Wrote:
To: Lora-Joy
We have put out messages to the Panhypopituitary group as well. Seems like this is going to be a tough one to match...we are working on it-keep your fingers crossed!

On Jul 09 2007, anonymous Wrote:
Hi!

I thought I would post on this board also-see if I can get any help.

My 7 year old son was diagnosed with GHD last June. He has been on GHT for 1 year with only 1 inch of growth. He also has adrenal insufficiency. We were sent to a geneticist who ran a slew of tests with everything returning normal. The ped endo did an gh antibodies test which came back normal. My questions is: If a ghd child does not respond to ght is igf-1 therapy an option. My endo did mention it as a possibility. I am so confused and worried. My son is 40 lbs and 42 inches and going into the 2nd grade. His height is really starting to affect him psychologically.

Thanks for any input, help, adice.

Lora-Joy

On Jul 06 2007, anonymous Wrote:
From Jamie H
Hi Everybody- we are starting a Yahoo Listserv (very similar to this Message Board but it is private-the whole world cannot see it). You have to sign up through Yahoo but it is easily searchable etc. Jamie S will be moderating it. Please sign up in this area for frequent converations and additional help. If you are on a computer frequently and would like to help Jamie with this project- please email her at IGFD@magicfoundation.org
Here is the link to the Listserv http://health.groups.yahoo.com/group/insulin-like_growth_factor/?yguid=316385676

On Jul 04 2007, Tabitha Wrote:
RE: Meredith
I know that the hormones do affect how bones grow strength wise, so if he is deficient I guess that could explain some of the problems. But have they ruled out other disorders? I saw some things on this website about the cafe o lait in the Russell Silver Syndrome and McCane Albright Syndrome areas. Have you seen them?

On Jun 27 2007, Nancy Wrote:
Hi,
Just wanted to write and tell everyone that my 13 yr old son had his first check-up since starting Increlex 3 months ago. He only grew 1 cm, which was a bit disappointing to all of us. The Nurse practioner thought he would grow more also. She mentioned to really try to keep the injections 12 hours apart, plus we did miss about 4-5 over the span of the 3 months. They may also adjust the dose. From what I read, I still expected more. One inch would have made me happy. He is a perfectly healthy and athletic kid, and I am thankful for that, so I know I shouldn't be whinning. Anyone have any insight for me? He's already 13, I feel like that window of oppurtunity is closing.

On Jun 27 2007, Meredith Wrote:
Thanks for the response to my post, however, I am looking for more specific information. Our nephrologist and endocrinologist have explained about the connection with kidney issues and IGF-1. I am interested in speaking with other parents whose child has multiple symptoms, like my son. I've only seen posts from people who mention IGFD as a "stand alone" condition which makes me curious about whether the child has other symptoms/conditions. A brief about my son...at 3 days of age he presented with symptoms of severe food allergy, at age one he was not growing, losing weight and had severe, chronic diarrhea. He had allergy testing - anaphylaxis to peanut, tree nuts, dairy and egg. Negative for Celiac disease. Also noticed two Cafe-au-lait spot (on his left shoulder/shoulder blade and one at the small of his back - both respecting the midline). At age 2 1/2 he had a golf ball size lump on his lower left back next to the spine - x-rays for that found nothing about the lump but avascular necrosis of the right femoral head. Within 2 weeks of that he fractured his left femur by slipping on our patio. 9 months later he fractured the same leg in a different place and those x-rays revealed avascular necrosis of the left femoral head. (He constantly complains of pain and doesn't like to use that leg.) During all of this time he has consistently dropped on the growth chart (below 3rd percentile). Finally at his 4 yr check up the pediatrician recommended we see an endocrinologist to find out why he wasn't growing. We did extensive blood work, growth hormone stimulation tests and kidney function tests. He was igfd and has renal tubular acidosis which we've been treating for a year and a half. If he doesn't respond well/begin growing in the next 4 months we will begin GH therapy and possibly IGF therapy. Six weeks ago he fractured his femur for the third time! We're spending the summer in a body cast and still trying to figure all of this out. Any help would be very appreciated - I think now you can see why I am curious!

On Jun 27 2007, Jamie S. Wrote:
Hello everyone! I am going to try to answer both Janice and Patty's questions here. First the blood sugar issues with the IGF medication is easy to control with a proper diet. In fact we have been on the road traveling this week and even when we are not eating the best it has not been an issue. you quickly learn what you need to eat and the glucose monitor helps alot. Secondly the diagnosis of IGFD is a diagnosis as far as I know. They did start my daughter on GH for 2 months. Their explanation was that they could tell how much GH she was making but not the QUALITY of it. Maybe she was making defective GH. So they gave her a perfect form of GH and her IGF levels actually went down. Then she was started on Increlex. Our insurance company did not pay for the trial of GH therapy but they are paying for the Increlex. MAGIC just started a new message board regarding insurance issues. Maybe you can get some valuable information there. Insurance can get to be a pain I know! I wish you both luck and if you ever have questions you can email me directly at IGFD@magicfoundation.org and I can give you a call. I am more than happy to talk to everyone!

On Jun 26 2007, Patty Wrote:
My son is IGF1 deficient, but the Dr. is going to start him on GH for the first year. His "official" diagnosis is ISS. Am I understanding it correctly that IGF1 deficiency isn't a diagnosis yet except under studies/trials, and that is why those with IGFD but normal GH levels are considered ISS? Has anyone had experience with how this affects ins. coverage or how GH worked for an IGFD child?

On Jun 26 2007, Janice C. Wrote:
My daughter is 3 years old and has been on GH for about 1 year. Her endo is now wanting us to start IGF-1 in addition to the GH. Does anyone have a child on IGF-1 that is as young as mine? Has there been blood sugar level issues? How does your child tell you that she feels "shaky" or low? I am really hesitant aobut the IGF because of the hypoglycemic stuff. She's a Turners girl and the doc has already tested her once for diabetes (it came out negative). If anyone has any inisght, this is all so new, any information would be great! Thanks!

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 20 2007, Jamie S. Wrote:
Hi Donna,
Our insurance company would not pay for the GH therapy trial either. We did have to pay for it out of our own pocket. It was only for 2 months so that was not that bad. If the trial did work then we would have something to show the insurance company and they would have started paying for it and even reimbursed what we had already paid. Our doctor just thought it was worth a try.
I am glad that your daughter is tolerating the IGF well. Has she had any problems with her blood sugar? Our daughter has gotten hypoglycemic a couple of times but with better monitoring of her nutrition that has been way better. Well I am glad you found the group as well, welcome!

On Jun 20 2007, anonymous Wrote:
Hi!
My name is Donna and my daughter Lindsay is on Increlex for IGF1 deficiency. It sounds like she is an *old timer* because she has been on Increlex since Aug '06. She has grown about 3/4" every 3 months. A huge improvement for a kid who grew about an inch in the 15 months previous. She started out at 40" and 42 pounds at 7y10m. Three inches is not a whole lot, but amazing the difference it makes! She has lost some of that baby look as well.
Lindsay has had no problems on the Increlex and tolerates the shots very well. I had never heard of doing a round of gh first. Our insurance would not approve gh because Lindsay's gh level was fine. But she easily qualified for IGF1 therapy on every measure. Glad I found this group!

On Jun 20 2007, Jamie S. Wrote:
Let me first say that I am NOT a doctor but this is what my doctor told me when they put my daughter who is IGFD on a trial of growth hormone. When they do the growth hormone stimulation test they can test the quanitiy of of growth hormone that is being produced but not the quality of it. There could me a defect in the growth hormone that is being made that is making it not stimulate the body to make IGF-1. If they give the body a growth hormone that they know is perfect and the body does still does not produce IGF-1 then they know the problem is truely IGFD. My daughter was put on growth hormone for two months and her IGF levels actually dropped while she was on it. Now she is taking Increlex. I hope this answered your question. It can be so confusing I know. If you have any further questions feel free to contact me and I woule be happy to speak with you. My email address is IGFD@magicfoundation.org

On Jun 20 2007, anonymous Wrote:
RE: Question to Everybody
My son has been diagnosed IGF deficient. I heard all of the "be safe" stuff but I don't understand the real reason he has to take growth hormone shots for 6 months before getting the IGF drug that it seems he needs. Can somebody tell me what is really going on? If he has normal levels of growth hormone why are they giving him more? This does not make any sense to me. Thanks in advance.

On Jun 13 2007, anonymous Wrote:
RESPONSE TO PENNY
Have you looked at the RSS division area of the website? If you are a member of MAGIC they also have incredible information for getting weight on kids. Their kids have extremem appetite etc. problems and don't gain weight. Perhaps some of their information could help your son gain a bit and make the process less painful for him. Or you may want to pose a question to the RSS message board- I am sure they have great help...but you may already be aware of all the tricks out there. Just trying to help.

My daughter used ice before her injections for 11 years and she would only use her thighs. She did have some minor scarring from all of the ice-but no other problems were ever evident. I wish you luck!

On Jun 11 2007, Penny Wrote:
My son has been on injections for 5 years. When he started he was 11 with bones of a 6 year old. The only place we have been giving him shots are in his "back" side. He sits on the brick (the frozen block that you put in your coolers to keep things cold). He does not have enough body fat to take a show any where else on his body. Even his arms look like he is anorexic. It is tough for a 16 year old and the questions at school continue.

On Jun 07 2007, anonymous Wrote:
Rachel,

Hi this is Jamie S. I am planning to be there with my husband and my daughter who is IGFD. She is 6 1/2 years old. So it will be nice for Michelle to have another girl about her age to talk to. Is she on Increlex right now? How tall is she? We have been on the Increlex since April and Michelle has grown an inch so we are very excited! I look forward to meeting you this summer!
Jamie

On Jun 07 2007, Rachel Wrote:
Educational Information:
Hi Everybody-I am new here and my daughter (age 7) is IGFD. This all has me nervous. I am hoping to go to the Magic program and learn more about all of this. I was just wondering if anyone else is planning to go. I would like to meet other families going through this too.

On Jun 07 2007, Jamie Harvey Wrote:
RE: Kidney's and IGFD
Hi Meredith-I am a co-founder of MAGIC (also a Jamie). I was curious as to the question you put on this message board and contacted our Medical Education,Endocrine Nurse for information. She said that it has long been realized by physicians that there is a correlation between kidney function and IGFD. Which came/comes first-the chicken or the egg-is not known. But each child with kidney problems exhibits IGF issues. However, not all IGFD kids have known kidney problems. It is very technical (above my head) but basically as I "got it" ...if the kidney's (for any number of reasons) aren't functioning to capacity and acidosis occurs, the IGF is surpressed. Therefore, the kid's IGF levels and thus growth...begin to falter. It is important therefore, to always keep an eye on their growth and kidney functions. This is just my laymans version of a very medical explanation. Always check with your child's nephrologist and endocrinologist for "proper" explanations! But I hope this helps.

On Jun 06 2007, anonymous Wrote:
Hello Meredith,

My daughter has IGFD and she also has kidney reflux. I have talked to other families as well with this condition along with IGFD. I am not sure about the one you mentioned specifically. i am unfamiliar with it. Hopefully someone else reading will know more.

Jamie

On Jun 05 2007, Meredith in Colorado Wrote:
Hi, My name is Meredith and my 5 1/2 year old son is IGF-1 deficient, with a high level of growth hormone. He has also been diagnosed with renal tubular acidosis. I was curious if any other IGF-1 deficient children have other medical issues. Any info would be much appreciated!

On Jun 05 2007, anonymous Wrote:
Hey all,

I just wanted to share our good news with you all. It is cold here today and the kids had to wear jeans to school. DJ's were too short, AND he hit the 40 pound mark today, just past his 7th birthday.

On Jun 01 2007, anonymous Wrote:
Beth,
No, I'm not sure what that is, but I did get a list of e-mail addresses from the Magic Foundation for IGFD Networking. Not too many on it yet though. Most of the kids are a few years younger.

On May 30 2007, anonymous Wrote:
Nancy, He is 11, will be 12 in October. Are you a member of the Yahoo Magic list?
beth

On May 30 2007, Nancy Wrote:
Hi Beth,

My son has a fear of the injections in the stomach so that is the one place we haven't tried. (can't really blame him). It's hard to see the brusies, I feel bad!
How old is your son?

On May 29 2007, beth Wrote:
My son is 55lbs and 52 inchs tall. Emla cream is a numbing cream that the doctors office gave us for the testing we did. they said we could use it for his injections too. He does not like to take the injections in the rear, but we are making him try it just for extras places.

On May 29 2007, Nancy Wrote:
Starting out in early April my son was 4'8" (54 ")and about 87 lbs. He just turned 13 this week-end. I am a little concerned that we got started too late in the game, but we just attributed his size to genetics. His pediatrician was the one to suggest we see the endocrinologist, and I'm really glad. He's happier now. He too though was a big chicken at first. What is emlacream? What are the stats on you son? my 10 year old daughter is being tested now for IGF-1 deficiency. We did not get those results yet.

On May 29 2007, anonymous Wrote:
Nancy, Was just wondering stats on your son (height, weight). We just started the increlex this weekend. My son is a big chicken and we are using the emlacream. My insurance seems to be okay so far. thanks

On May 27 2007, Nancy Wrote:
Hi again,

I did initially have problems with my insurance, but the Dr and Increlex handled the appeal and it only took about 6 weeks for my insurance to approve it. I don't know if I am saying this right, but it was something about my son only being -2.7 below the standard dieviations, and the insurance required -3.0.

He is really good about the shots so far. He didn't like the idea at first, but now is givng himself the shots. I haven't measured him, but after 2 months, peaple have commented that he looks like he has grown. We have our first follow up next month, so we will see and I will report back! Thanks!

On May 23 2007, beth Wrote:
Wow, I am soo happy there is a message board now. We are getting ready to start increlex, has anyone had problems with there insurance.

On May 22 2007, anonymous Wrote:
Hi Nancy! My daughter age 6 1/2, has been on Increlex for about 3 months, so not much longer but she has grown almost an inch. How is your child handling the shots? Does he ever get hypoglycemic?

On May 22 2007, Nancy Wrote:
My 12 year old son has been using Increlex twice daily for IGF-1 deficiency for about 2 months. Is there anyone who's child has been one the drug longer who can tell me about thier childs progression. I have read study information, but would like to here from an actual patient.

On May 19 2007, Jamie Sorensen Wrote:
Sally I am glad it was helpful to you!It can be confusing and scary trying to figure out what is wrong and how we can help our kids! Let me know if there is anything I can do to help you and your family!

On May 18 2007, Jamie Wrote:
Hi Everybody!
I am a mom of an IGFD child. Michelle was born December 18, 2000. She was a healthy 7lbs 8oz and 19 inches long, the perfect 50th percentile. Immediately though her percentiles started to drop and have never stopped. Her first year was filled with worry about why she was not growing.

We affectionately referred to Michelle as out little magic trick because everywhere we went she would amaze people. Michelle was a very early talker and quite articulate. She looked like she was 6 months old and was talking like she was 3. People would get such a kick out of her.

At 14 months there was no denying there was a real problem. Finding the answer though took us 4 years, countless tests and 2 different endocrinologists! To read our long story go here: http://www.magicfoundation.org/www/docs/108.1516/igfd-personal-story.html

If you want to see an incredible video which explains all of this in easy to "get" language- go to: http://www.magicfoundation.org/www/docs/983/igf1_insulin_like_growth_factor.html

Please post your questions or stories so that we can all learn from each other. Thanks!

On May 18 2007, Sally M. Wrote:
I just wanted to send a comment. My son's doctor told us last week that his IGF-1 levels are low. We were kind of relieved to finally have an answer why he wasn't growing right but scared about the shots. So before we made our decision, we both started searching the Internet for information. Your site and the video about this is the best thing out there anywhere! Thanks for helping parents like me figure this out!

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