Special Needs

Grasping at straws...

Hi everyone,

I have posted a few times in the past - and you all have been so helpful and kind. Thank you.

I am the first to admit that I'm grasping at straws with this question, so please bear with me...as I've been searching for answers for my son since he was 3 days old.  He is now almost 4 years old.  He has a long history of GI and Neurological issues and is considered 'chronically ill' and a 'complex case'.  

My question is: is there a link between a sleep disorder and a metabolic disease?  All doctors are now telling me that my son has some sort of undiagnosed metabolic disease; but they can't figure out which - as all metabolic/genetic/Mito testing has come back normal (for which I'm very grateful). 

I've been telling anyone who will listen to me that I think my son has some sort of sleep disorder, because he looks completely exhausted all day and looks to be restless at night & during naps. He also is an extremely light sleeper; to the point where I question whether he actually sleeps soundly. I can go into his room, silently, and he will sit up and ask me a question and not sound tired at all.  I know that's an odd way to describe it.

He also has mild hypotonia - and I am in the process of googling to see if that can tie into a sleep disorder. 

Just wanted to pick your brains, as you all seem way more helpful than any medical professional that I've met :)  Thank you for any input you may have!

Re: Grasping at straws...

  • I'm sure this is something you've already done, but have you ruled out celiac by attempting to go gluten free? Gi issues, neurological issues and hypotonia are all symptoms of the disease. 
    Baby Birthday Ticker Ticker Baby Birthday Ticker Ticker
  • Have you had a sleep study done? That would be the only piece of advice i'd have to offer you, often neuro issues are linked to sleep issues.  We started 3mg of chewable melatonin (walmart) 3ish months ago now after being hesitant for years and dd1 actually FINALLY sleeps.  She wants to go to bed and rests more than before and isn't constantly tired all day.
    DD1(4):VSD & PFO (Closed!), Prenatal stroke, Mild CP, Delayed pyloric opening/reflux, Brachycephaly & Plagiocephaly, Sacral lipoma, Tethered spinal cord, Compound heterozygous MTHFR, Neurogenic bladder, Urinary retention & dyssynergia, incomplete emptying, enlarged Bladder with Poor Muscle Tone, EDS-Type 3. Mito-Disorder has been mentioned

    DD2(2.5): Late term premie due to PTL, low fluid & IUGR, Reflux, delayed visual maturation, compound heteroygous MTHFR, PFAPA, Bilateral kidney reflux, Transient hypogammaglobulinemia, EDS-Type 3

This discussion has been closed.
Choose Another Board
Search Boards