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Slow growth and delayed puberty

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Replied by carolk on topic Slow growth and delayed puberty

Hi Kel,
You are welcome! I'm glad you have found a specialist you have confidence in. That is so important. In my daughter's case, she has not started GH therapy. We changed doctors in the middle of the diagnosis process because I lost confidence in the first doctor. I have full confidence in her new doctor. He is monitoring her at this point. The cause of my daughter's growth issue was unknown, there was no physical issue with her pituitary. Her IGF-1 was low normal, but she did fail her stim test. After we changed doctors, she began to grow so the doctor is monitoring her for now. In your son's case with the RCC, it's possible that it has caused the pituitary to stop producing the proper amount of any of the pituitary hormones. They should check all his hormone levels. If he is growth hormone deficient, it isn't just about his height. Growth hormone affects muscle tone and cardiac function and more. I joined a Facebook GHD/Growth Hormone deficient Parent Support Group and it helped me immensely because all those parents knew exactly what I was going through, and walked me through it every step of the way. They even sometimes post their little ones giving themselves their own injections. The idea of your child having to be on injections long-term is daunting, but there are many people that are living it and it has worked wonders for their child. Having said that, not all children respond to GH therapy either. It depends on the individual child. Hopefully, you will have answers soon!
6 months 2 weeks ago #10790

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Replied by Kelmum78 on topic Slow growth and delayed puberty

Thanks so much Carol, appreciate everything you've written.
I was at our local pediatrician's today who wanted to discuss everything before we see the pediatric endocrinologist this Friday - he's of the option they won't remove it, but I'll ask the specialist this week. 
We're seeing a Professor of pediatric endocrinology who specialises in this at the children's hospital, I'm feeling confident we're in good hands here.
Can I ask though, with the growth hormone, did they give your daughter the growth hormone therapy?  I believe it's a very strict program and the governement needs to approve it with strict criteria.  If you're daughter had the therapy - did it help with growth hugely? 
Thanks!!
6 months 2 weeks ago #10789

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Replied by carolk on topic Slow growth and delayed puberty

Also, PNA moderates a closed Facebook support group for pituitary patients. In Facebook, search for Pituitary Network Support Group. You request to join, and once approved you will begin seeing the group's posts. Only members of the group will see your posts. It a great space to find other people who are going through similar experiences. Best wishes on your journey!
6 months 2 weeks ago #10788

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Replied by carolk on topic Slow growth and delayed puberty

Hi Kel, I am not a medical professional, but what I do know about the pituitary is that when there are growths like a Rathke's Cleft Cyst it can absolutely affect the pituitary's function which can cause a variety of symptoms such as the ones you've detailed. Make sure the endocrinologist is a pituitary specialist. Ask how many pituitary patients they treat, it should be many. If not, I would suggest finding another peds endo. Children's Hospitals would be a good place to start to find a specialist. Write down all of your questions and concerns prior to your visit and make sure you cover each one during your visit. Keep a journal of your son's symptoms with dates and times he is experiencing them and bring the journal with you to the doctor visits so your doctor understands what is really going on. They should be running tests to check your son's pituitary hormones and function. The pituitary secretes several different hormones so they should all be checked. PNA'S website has a list of the pituitary hormones if you click on the Symptoms and Diagnosis tab. Since you mentioned growth delay, research growth hormone deficiency in children to better understand the process of diagnosis before your visit. It will help you ask informed questions and better understand the answers. Have they discussed removing the cyst? If they do, be sure you have an experienced neurosurgeon with pituitary experience. It is so important as he/she will try to preserve as much of the pituitary/function as possible. When you have a consultation, ask how many pituitary surgeries they have performed. Having been through the diagnosis process for GHD with my daughter, I understand how worried you and your husband must be. Stay strong!  
6 months 2 weeks ago #10787

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Slow growth and delayed puberty was created by Kelmum78

Hi there,

I was hoping for any help advice!  We're seeing an endocronologist for the first time this Friday, but still going out of my mind with worry.

My son is 13.5 and in the 3-5 percentile for his age, his 11yr old brother towers over him (my husband and I aren't small).  We've been seeing the pediatrician for this who has referred us on to the endocronologist, but in the meantime he's had a bone age test which shows he's over 12 months delayed in growth and he just had an MRI which is why I'm worried.

He is a 6mm cleft like focus on the anterior and posterior pituitary gland which could be calcification/haemosiderin or proteinaceous fluid.  His pituitary gland is mildly heterogeneous (is this normal)?

He got sick/tired for a few months 2yrs ago which is when all our problems started - there is extreme anxiety, crying, being mean to us all.  It's really unusual behaviour which he doesn't seem to be able to control.

Can this thing near his pituitary gland cause these issues including slow growth and anxiety?  Or does it mean nothing??

Any help would be awesome, thanks in advance!
Kel
6 months 3 weeks ago #10782

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