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ALD and growth issues

connorsmom
0 Recommendations

Hello- I'm new to this group, but am excited to hear from other parents of ALD children!Our son was transplanted in 2005, and is doing well now. He does,however, have growth issues. He has grown only an inch or 2 since the transplant, and his weight is very low. He is adrenally insufficient and on hydrocortisone to increase his levels. Has anyone had a similar situation? Our Doctors (neurologist, endocrinologist, and hematologist) are all stumped. Thanks!

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Celiac disease Depression

7 replies

blissboys

Most boys with X-ALD have an adrenal insufficiency, and have to take hydrocortisone. When my 3 year old wasn't growing like he should, the endrocrinologyst lessened his dose of hydrocortisone. Does your child have any other symptoms of ALD? How old is he? I'm glad to hear the transplant went well.

connorsmom

Thanks for reponding blissboys! Connor is 13 now, and has some neurologic defecits. He's done remarkably well post-transplant with very little decline. Our endocrinologist has adjusted the hydrocortisone about every 3 months, but doesn't think that's the reason for growth delay. We live in Rochester,NY and there is really no one we can find locally with any experience with ALD. Our team at the University of Rochester is great, and has worked with those in Minnesota when possible. This area is one we can't figure out. Growth hormone levels are good, no malabsorption, no celiac disease, etc. He's had a lot of tests, but they still don't know what's up. All in all, we're blessed with Connor and know God has a plan in all this! By the way- your boys are beautiful!

Quiller

My son was transplanted 18 years ago in MN and grew some after transplant and it was made clear to us at the time he may not reach his expected height. There was talk of growth hormone for him and the window until his growth plate closed was still open for that option but we along with his doctors decided against that as his body had been through enough and we were grateful he was alive. He was 9 when he was tranplanted and also has Addison's. I am shocked the doctors are confused about this as it was know way back that it is an issue with transplant. I think you may have to have them contact the Minnesota group again.

bnkg

Quiller,
Do you mind if I ask you how your son is doing? It's been 18 years since his transplant? How is he?
Thanks.

Quiller

My son is wonderful. He takes meds for Addison's and depression as well as attention meds. He sees dr. Echlier at MA General in Boston . he lives with his partner to whom he will marry in August. He is independent and happy and a miracle.

connorsmom

Quiller,
Do you remember if it was a transplant issue with growth or something related to ALD? The transplant Drs don't think it's related to the transplant process, but they also hadn't done any on ALD children before Connor. Thanks for sharing and glad to hear your son is doing so well!

Quiller

Growth was transplant related. Your doctors should touch base with The Univ of MN as they have done ALD transplants for a long time-if your son was their 1st they need to inform themselves. Or perhaps you can contact the Univ team and ask for their input will be thinking of you

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