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Panhypopituitarism
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Due to high demand- we have closed this board for new postings. Instead we offer a searchable (easier to use) Yahoo Listserv for messages. You need a Yahoo Id and apply for membership to the Pan / Tumor Listserv. (This to protect families and keep out "junk"). To find our Pan / Tumor Yahoo Listserv- go to: http://health.groups.yahoo.com/group/panhypopituitarism/?yguid=316385676
Feel free to read the past posts so that you have a small idea of how the larger Listserv can help you.
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On May 15 2008, Kathy from Seattle Wrote:
Hi, my name is Kathy. I have a beautiful and happy daughter, Karlie (now 9 1/2 years old +developmental delays) diagnosed with panhypopituitarism when she was almost 2 weeks old. She "crashed" six days after birth, we were just outside of the ER and they revived her then rushed her to Children's Hospital. We have a wonderful pediatric Endocrine doctor. She's been taking growth hormone (Nutropin AQ), cortef, levothyroxine since being diagnosed. She started having seizures at the age of 4 and had a surgical resection of her brain for seizure control (summer 06') she no longer needs DDAVP since her surgery and seizures have drastically reduced.
Karlie's favorite activities are swinging, playing basketball in our driveway, abstract coloring and walking our dog (with assistance).
I'd love to meet and chat with other families dealing with similar situations. I have yet to meet another kid/family in our area (Seattle, WA) so hope to make friends and support eachother.
On May 02 2008, Jelle Kouwenhoven Wrote:
Hi Everyone,
After reading some posts about concerns and help, I decided to write a bit from a patients' point of view.
I am about to turn 20 years old, and it was discovered that I had Panhypopit when I was about 4 months old (I was born 9 weeks early, so I was put in the hospital right away, so they found it fast). my parents gave me GH till I was 4 years old, and then I started doing it myself. (Who else can do it when I am having a sleepover at my grandparents). Testosterone started at my 13th birthday. I am also taking the usual cortisone and thyroxine.
So far everything has been going great. I am currently in my second year at university, doing a double degree.
School has not been a problem at all. The teachers knew what I had, and there was always a steroid injection somewhere in the class if needed (never used it so far). Almost everyone in the class knew what I had (I even did a presentation on it) and everyone just accepted me as who I was. Personally, I do not see me different at all to everyone else, and I guess that radiates out or something...
Then when I moved to college/high school, the only thing that changed that just my friends knew what I had (no point in shouting it out in the auditorium). Everyone was cool with it, and we actually never mentioned it, just the usual joke that I miss a part of my brain, and then I reply that even then I’m still smarter than the rest of them. Being able to turn the disorder in something to laugh about really helps.
Outside school, panhypopit has not been a problem either. I have been involved in rock climbing, swimming, scuba diving, baseball and martial arts. I have bungy-jumped, white –and black water rafted and been on 5 day hikes in the mountains. As long as you take proper preparations with the medication (e.g. have multiple places where you keep the medication, keep the GH cooled) nothing should be a problem. When I travel overseas I keep my needles + GH in my hand luggage, and so far there have been no issues at customs anywhere.
I can imagine that for parents it may be scary to have a child that has panhypopit, but the important thing is that you tread your child the same as every other kid. Let them play outside, let them have sleepovers at friends. Just establish some simple rules and explain why they are there. In due course taking the medication will be the same as brushing your teeth (although I still sometimes forget to take my medication on time at lunch, even after 19 years!).
Hope this story gives everyone some hope, and feel free to email me about this or anything else relating panhypopit.
Regards,
Jelle Kouwenhoven
basekid@gmail.com
On Apr 14 2008, Naomi Trumper Wrote:
Hi all,
I just got another call from my son's school about his inability to concentrate. He is 15 years old, started taking HGH when he was 9 months old, he now takes throxine, HGH, cortisol and testosterone shots. I scanned over the program for the convention and I noticed that inability to concentrate was listed in the description. I had asked for years about this aspect of the syndrome without any results. I am so grateful to see that it is there. I would really appreciate any suggestions or tips or anything to keep me grounded and not to lose my temper with the school etc. naomi_8892@yahoo.ca
THANKS
On Mar 06 2008, Colleen Wrote:
Hi, I'm Colleen from Australia. I have a 6.5 year old son with panpit.
To anyone worried about the new bill that will restrict growth hormone - over here we live with that all the time. GH is a restricted substance across the board (as some of you may remember when Sylvester Stallone was arrested trying to bring some into this country). This does not stop those who medically need it from getting it from the government, all properly regulated and accounted for. Every dose is calculated and each person receives exactly the right amount and has to account for any extra required(to stop unscrupulous parents selling it at the local gym or using it on themselves.)We get supplies 4 times a year. It seriously isn't any issue here and it does make drug cheating and steriod abuse harder to do. When a child has finished growing (currently at 16yrs but this may be extended in the future), parents have to then pay for the GH but the amount required by the child at that time isn't huge and amounts to maybe $10-$20 per week. Australians are trying to have the law adjusted to let those who need GH get it free for life but this will require a government of a particular conscience and hopes aren't high about that. Still, don't panic. The USA is one of the most insanely lax countries in the world and I doubt you will have to go through much effort to keep your children medicated. Rejoice that you've had to so good for so long - my local doctor is only permitted to dispense 50 tablets of Hydrocortisone at a time and my specialist has to make a phone call every time she wants to write a prescription for 200!
On Mar 04 2008, Cindy Wrote:
Hi, I am Cindy and my daughter Has panhypopit since birth. So difficult to find any answers...I read Misha's note from august. my daughter is in kindergarten now, would love to share with you or anyone else who can relate. We've been dealing with a lot of illness since school started.
On Mar 03 2008, Janet, Board Moderator Wrote:
Stephanie, the reason that a lot of these children are on cortisol also is that those 3 hormones are often the 3 that are missing when there is congenital panpit and that part of the pituitary stalk is damaged or missing. Stim tests need to be done to determine whether cortisol replacement is needed. Because it's essential for life, I'd encourage you to get your doctor to thoroughly test for cortisol deficiencies if you think it's a possibility.
On Mar 03 2008, Stephanie Wrote:
Hello, I was just reading through this board again and I have seen a lot of babies and toddlers on Cortisol along with GH and Synthroid. I was wondering if it is based on their lab results or another reason. My endocrinologist has never mentioned it. Thanks
Stephanie
On Feb 08 2008, Jenna Wrote:
Hello,
My name is Jenna and I have a 3 year old daughter Miriam who has SOD & congenital panhypopituitarism. At first we were told she has ONH and then we were hit with this once we saw her endocrinologist for the first time. She used to see Dr. Adhikari at the childrens medical center in Dallas. We just recently moved to the Austin area and she is seeing someone else, we are not happy with her and might be going back to Adhikari who was amazing.
I am here in hopes to find other parents for support and also maybe find some people in our neck of the woods with children who have this illness. It is very lonely because nobody understands. If anyone wants to email me my email is jennared77@yahoo.com
Nice to meet you all!
On Dec 21 2007, Hope Wrote:
Hi everyone,
My name is Hope Dixon and I'm 16. I have acquired panpit and was have had so for 6 and a half years. If there is anyone out their who is intersted in talking or have any questions about the long term affects, the promblems that will come, or anything else I would love to help. I am trying to jump back on board with being a healthy person with panpit because I got really mad at life and myself for awhile and had some severe issues with wanting or not wanting to take my meds. Having panpit is diffcult. It's put many walls in my way but I'm just now beginningto climb over them so if anyone wants to talk I love to listen.
kattlvr11@aol.com
On Dec 09 2007, Janet Meehan, Moderator Wrote:
Please note that Jamie Harvey of MAGIC is calling for families to send her their doctor recommendations (name/city/ and phone numbers) if you feel you have one worthy of recommending. Email her at jamie@magicfoundation.org with the information about your ped endo. She will then compile a list for all families to use for reference. Thanks!
On Nov 25 2007, Kim Wrote:
Mike, on behalf of all of use at MAGIC, THANKS! Please email with pictures and details. You can reach me at pan-tumor@magicfoundation.org.
Again thanks and hope to talk soon!
KIM LOCKWOOD, Elena's Dad, C-PAN
MAGIC Division Consultant - PAN
On Nov 20 2007, Janet Meehan, Moderator Wrote:
Hi Gayle, I don't know where you live, but wanted to make you aware that there will be a conference for adults with panpit in Feb 2008 in Tampa, FL. More information will be posted in the near future on the MAGIC website. It sounds like that might be worthwhile for your family if you are able to make it.
On Nov 19 2007, Gayle Wrote:
Hi, I'm Gayle and my daughter is 34 and has panpit as you say. We have been looking for help w/her for over 5yrs. She has been to Mayo,and to Boston and now we found OSHU in Portland, Or., she has appt. on Dec. 4th. to see what else she could be taking to be normal feeling. She is on GH but maybe not enough, and Levothyroxine,hydrocortisone and about 20 other pills per day. She has the start of Cushings now as she is on too much steroids and can't seem to come down on them without feeling like she will die. She can lose 20lbs. one week and gain it the next. She has two young boys,14,8, she cannot take care of so they are living w/grandparents now. She is in such pain especially her feet and no energy at all. Her pan was caused by having the blood supply cutoff during an anyurism surgery about 6yrs. ago and it took over a year to diagnose it. She also had a hysterectomy and then burned her tummy so bad w/heating pad that she had to have tummy tuck surgery it was so bad before they did diagnose it. We would love to hear from adults w/the same or close to it. Thanks, Gayle
On Nov 11 2007, Sincerely, Mike Wrote:
Hi. Our daughter Luciana was diagnosed with panhypopituitarism at 5 weeks of age. She is now 15 months old and doing great. She is currently on growth hormone, thyroid medication and cortisol. This past weekend my wife Jolie and I hosted a "Walk for Luci" benefiting the Magic Foundation in our neighborhood. We wanted to raise awareness and help educate our family and friends about our daughter's condition. It seems to me that nobody really understands or they are affraid to ask the tough questions when it comes to our daughters medication and panhypopit. So we decided it was in everyone's best interest to take the bull by the horns. The turnout was fantastic and our friends and family showed great interest in learning more and try to gain an understanding of what our day to day is like trying to raise a child with panhypopit. It nice to know that there is a place like the Magic Foundation where we can go and communicate with parents who are going through similar struggles.
On Oct 27 2007, Janet Meehan, Moderator Wrote:
If you have a child who is currently under evaluation or has been diagnosed with growth hormone deficiency, or is using this medical treatment due to a syndrome - and you live in or near Tampa, Florida- MAGIC is offering an FREE educational program November 3rd.
The MAGIC Foundation in conjunction with Pediatric Endocrinologists Dr. Barry Bercu (University of South Florida, All Children's Hospital) and Dr. Terry DeClue (St. Joseph's Children's Hospital) are offering a free a mini-education support program in your area for families of children on growth hormone therapy.
Here is a link that will provide you with more information. If you have difficulties with the link, feel free to email me at jmm0721@verizon.net. I'll be at the meeting and I hope to see you there!
http://www.magicfoundation.org/www/docs/2
On Oct 11 2007, Twila Wrote:
I would love to talk to Sarah, my daughter is 19 and has had panhypo since birth, she just moved out and attends college I worry all the time
On Oct 11 2007, Twila Wrote:
Hi,
My name is Twila I have a 19 year old with panhypopituitarism, she just moved out and attends college. I worry and would like to talk to a adult with the same condition. We went thru alot when she was young but have a GREAT dr. that helped us along the way, If a parent has questions I would be more than happy to give them tips, I worried about my daughter 24 hours a aday it does get easier but I would like to know how adults are dealing with this.
Thank you
On Oct 04 2007, sarah Wrote:
hi, im sarah. i am 20 and was diagnosed with panhypopituitarism /hypothyroidism at the age of 2. I also have a immune defficincy and osteopenia .im taking a hydrocortisone, cytomel, synthroid,and birth control for my bones.i was taking predisone but recently switched and highly recommend hydrocortisone for long term reasons.I was taking growth hormone shots at the age of 2 and was giving them to myself at the age of 5. the positive side to growth hormone shots is it makes you look very young, something i will be thankful for.I am hoping in the years to come i have a good outcome with fertility drugs. Im hoping i can talk to someone who is in the same boat im in and share stories.
On Sep 05 2007, Jamie Wrote:
For new Mom's wanting to talk-
Please call the MAGIC office (708) 383-0808 and ask for the "Networking Form". It is free from the foundation. Once you sign and return it (or apply online) we will send you the names and phone numbers of other parents who want to talk. You do not have to join to use this service, but any donations or memberships .... they help us keep going. We are made up of parents and none of us has the last name of Rockefeller! ;-)
Thanks!
On Aug 21 2007, Misha Wrote:
Does anyone have any helpful hints for pan kids who will be starting school for the first time? I am new to this and worried that I may not have thought of something. Thanks in advance.
On Aug 03 2007, Janet Meehan, Moderator 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 Aug 02 2007, anonymous Wrote:
HI I'm Christina, I'm 22 and my son was diagnosed with panhypo when he was a month old. He was born and 7lbs 11oz and by the time we left the hospitalk he was 6 lbs 5oz. It was and still sometimes can be very scary!!!. I would love to talk to other parents!!!!!!!!! Andrew takes synthroid ddavp and cortef and they are thinking about the growth hormone.........Christina_2706@yahoo.com
On Jul 20 2007, Becca Wrote:
Hi My name is Becca and I have a son who was born with panhypopit He is 4 and doing great. he is on growth hormone, cortef, synthroid, and had testerone shots for a bit earlier on. Would love to chat with other parents! Thanks! becble123@yahoo.com
On Jul 10 2007, Gloria Wrote:
acquired pan
anyone going to the magic convention so we can meet, so exciting to be going again. My son is 9 years old and can't wait. Hope to connect with other acquired pan familys. See you soon. Gloria mom to Caiden
On Jul 03 2007, Julee McLean Wrote:
Hi Janet, this is Julee McLean, I posted up above, my daughter has Panpit. and is only a year younger than your son. I am looking to talk to anyone who's child is close to Kaylee's age and learn the pro's and con's of panpit.
If anyone at all would like to contact me, please email me at www.yeeehaa@verizon.net and we can compare notes and stories.
Thank you for letting me post on your message board.
On Jul 02 2007, Jolie Wrote:
Julee & Jelle: Having a little girl with panpit, I have so many questions for you! Thanks for giving out your emails. You may be hearing from me from time to time as things come up. Right now my head is swirling with uncertainties. If you have any words of advice, or just things to consider and keep in mind as she grows, I'd love to hear from your voices of experience. Thank you again. My email is joliehorvath@yahoo.com.
On Jun 29 2007, Stephanie Wrote:
Hi, I wrote a couple of days ago and would love to list my email address for anyone. Thanks
s.duttonrn@insightbb.com
On Jun 29 2007, Tabetha Wrote:
Hello! My name is Tabetha. My son is 26 months and has panpit. His endocrinologist is amazed with how well he is doing. He is walking and talking and knows sign language, he will be starting growth hormone mid-july, right now he is about the size of a seven month old I believe, 27 inches and 22 lbs. We live in So cal and I would love to meet up with other parents and children with his disorder if possible to build friendships and have support!
On Jun 28 2007, Jelle Wrote:
Hi, I'm Jelle. I was born with panhypoptuitarism 19 years ago. I am taking growth hormone, cortisone, thyroxine and testosterone. I am at my first year at university at the moment (in New Zealand) and life is going great. If anyone has questions or want to share ideas, please feel free to contact me at basekid@gmail.com
On Jun 27 2007, Janet Wrote:
Julee, your experience sounds a lot like ours - Shea was also 3 months old when diagnosed in 1997, and we almost lost him as well. His sugar dropped to 22 and he also had to be revived and was then placed on life support for 2 weeks. I think a lot of us have been through similar experiences.
On Jun 27 2007, anonymous Wrote:
Hi, my name is Jolie. I have a 10 month old girl who has congenital panpit. She is on growth hormone shots, thyroid meds, and cortisol. We are still learning so much every day about her condition, and often feel really overwhelmed. I think it will really help us to feel like we can handle things through hearing about other people's experiences. Thank you, Magic.
On Jun 26 2007, Stephanie Wrote:
Hi, My name is Stephanie and I feel like I am by myself all the time and my baby is the only one that has this, I am not sure if he has panhypop but I think they call his diagnosis "ectopic pituitary", He was diagnoses at 12 months and was immediately put on Nutropin(growth Hormones). He is now 18 months old and doing great, but very small, he is easy on my back to carry around, that is the plus side. He also takes Synthroid every night also. I really commend my pediatrition for his early findings, I was really in denial and maybe still am. I would love to talk to other moms that are in the same boat as us.
On Jun 26 2007, Julee McLean Wrote:
Hi, my name is Julee and I have a beautiful daughter who was diagnosed with panhypopituitarism when she was 3 months old. We almost lost her 3 times before they discovered what was wrong with her. Her blood sugars dropped to a 4 and she had to be revived and transported to a hospital an hour away by helicoper. She is now 8 years old and is doing great. She takes growth hormone shots (Nutropin AQ), thyroid medication, and hydrocortisone(cortisol) to keep her alive. If anyone has any questions about panpit, please feel free to email me at yeeehaa@verizon.net and I'd be more than happy to answer any questions that I can.
Thanks you for letting me post my message.
Julee McLean
Millinocket, Maine
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, Jamie with MAGIC Wrote:
RE: Hi Janet!
Janet thanks for helping to get this Message Board going! Posts about Acquired or Congenital Panhypopituitarism will be great! If it gets too complicated defining the differences between the 2 types of Panpit-posts, we will try to split this Message Board into 2 groups. But we need to see how this goes first.
On Jun 20 2007, Heather Czosnek Wrote:
Hi, I'm Heather. My son is 2 1/2 and diagnosed with congenital panpit. I am anxious to talk with other people dealing with some of the same issues we are and learning as much as I can.
On Jun 20 2007, Janet Wrote:
Hi, my name is Janet and I'm the moderator of this board. I have a 9 year old son who has congenital panhypopituitarism, or panpit as we call it. He was diagnosed at 12 weeks of age and is currently on growth hormone shots, thyroid medication, and cortisol. Welcome!
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