Community› The Bump Message Boards› Special Needs
Special Needs
New Discussion

At my wit's end.

JBGirl_philly18JBGirl_philly18
in Special Needs

Hello,

I hope it's ok that I'm posting here.  I really have nowhere else to turn. My son (who is almost 3 1/2) has had GI issues since he was a newborn.  He's also developmentally delayed - and has seen an SLP, OT and PT for two years now, every week.   He has had every GI test (and loads of procedures) done - in addition to many neurological, genetic and allergy tests as well.   Everything is normal, for the most part, which I'm extremely grateful about...but there is still something wrong and I will do whatever I can to find an answer for him. 

He doesn't look well.  He is pale with dark circles under his eyes and is lethargic alot of the time.  Iron/celiac panel/thryoid all normal.  He is always, always backed up - since he's been a newborn - and we have tried everything under the sun to help him with that.  

Here is where I feel so helpless: he still can't pull his pants down (to go the bathroom) or alternate steps, or put his arms up in the air to put on a coat by himself.  And I know it's because it's due to issues in his abdomen or trunk or belly area....I just don't know how else to explain it.  He tries so hard to do these things - and his PT has worked endlessly with him on this - but he just doesn't have the strength to do them - or there is something wrong or off internally. 

All three therapists (whom I adore and they love my son) have made it clear that they've all hit a road block because of whatever is going on with the 'middle' (for lack of a better word) of his body.   Hypotonia has been ruled out (by two different Neurologists) and I have no reason to believe that he has issues with his spine.

I feel like I'm failing him because I don't know how to help him :(  If anyone has any insight, I'd be very grateful.  Thank you so, so much.

Report Reply to Post

Re: At my wit's end.

  • thefuturemrskudlathefuturemrskudla member
    Have you seen a geneticist?
    Report Reply
  • Loading the player...
  • Assembly_ReqdAssembly_Reqd member

    Have you checked for tethered cord or maybe some sort of pinched nerve? Are there any brain abnormalities? MRI?

    Are you sure he does not have sleep apnea? Maybe he is not getting enough oxygen at night and this is causing the tiredness......

    I am just brainstorming here.... 

    WAY 2 Cool 4 School


    image
    Report Reply
  • JustinloveJustinlove member
    I also wonder if he has seen a geneticist, had a brain MRI, swallow study and a sleep study.  I also am curious about the spine (AR's questions).  
    My Craft Blog: Sew Girly Studio
    Report Reply
  • smiling76smiling76 member

    Would you be open to seeing a chiropractor to see if that might help?? 

    I know how frustrating things like this can be--and feeling helpless.  ((hugs))


    My new "mom" blog: http://realityofamommy.blogspot.com

    image

    image


    [img]
    [url=    http://www.TickerFactory.com/]
    image




    Notes:
    Report Reply
  • WisteriacowWisteriacow member
    You mentioned that he has GI issues and that you've had allergy tests done. Have you tried eliminating certain food groups? My son is intolerant to diary and nuts but an intolerance won't show up during allergy testing. His intolerances affect not only his GI (stomachaches and diarrhea) but also his behavior. If he's had "bad food" he has trouble sleeping, is more disruptive and more hyper.
    Report Reply
  • JBGirl_philly18JBGirl_philly18

    Thank you all, so much, for your responses - and kindness.  I have felt so alone during this rough journey, so it's nice to know that you all care enough to respond to my post.  Thanks again.

    My son has had thorough genetic testing done, mostly normal - some "ambiguous". Because of this, we are seeing a metabolic Dr soon.

    We are on our 10th GI Specialist; we've been to three of the best Children's Hospitals on the East Coast.  None of them have mentioned a tethered cord.  Should I mention this to the GI dr?  

    As for sleep apnea: he has never been tested. He doesn't seem to sleep soundly...but I often wonder if that's because his belly hurts :(   He did have an MRI on his brain - which was normal. 

    I am not opposed to him seeing a Chiropractor; I just need to make sure he/she is a highly-referred one, as I know some aren't the best.  

    We have done elimination diets and nothing seems to change in my son's appearance/demeanor.  I do want to look into food intolerance testing for him though.

    My son recently had the stomach bug and, as odd as it sounds, he looked wonderful the day after all of the vomiting & diarrhea.   He looked vibrant and healthy and happy - and he spoke well and seemed to be better physically (as he is a bit awkward) and it was such a JOY to see that healthy little boy.  I tried explaining this to his doctors and they all looked at me as if I'm nuts.  I'm starting to lose hope :(

    Thank you again.  I wish you & your child(ren) the very best.

     

     

     

    Report Reply
  • light52light52 member
    Have you tested for leaky gut syndrome?  I don't know a lot about GI issues but Dr. Oz had a show about leaky gut syndrome this week and your post reminded me of that show. 
    Samuel  2.26.06 41w ASD/ADHD
    Eli  6.18.09 35.5w
    Silas  1.25.13 35.4w 10 days NICU, allergies/asthma, gluten intolerant

    image
    Report Reply
This discussion has been closed.
Choose Another Board
Search Boards
"
"