I don't know where else to ask help from/opinions

jlh123

I haven't been here in several months but I hope everyone is doing well.  My twins are 22 months and doing over all very well (born 2 months premature).  Both are right on track except my daughter who is finally catching up with her speech.  My son is doing exceptional for being born early which is why no one seems to understand my problem with him or think much of it because he's exceeding developmentally beyond his age even.

Ever since he's come home from the NICU, he's been a very stiff boy and rigid.  In fact, he was in occupational therapy at 3 months old to help him poop of all things!  The GI prescribed it and it helped a great deal for the two months of treatment.  He was always a good baby, easy to soothe, good sleeper and to this day such a sweetheart.  So here's the "but".  He's the most tense and stressed boy I've ever seen.  I told my peditrician, the GI doctor in the past, even his urologist (kidney reflux finally resolved though) and everyone brushes me off because he's doing so well and they don't see it.  If anything, people say that it's because he is trying to express himself.  My husband is a physician and he now is admitting there's something more to it but he has no idea what to do.  We don't even know how to explain it.

He gets so worked up where he's all flushed and hot and a repetitious sounds of "hmm hmmm hmm".  I'm starting to get really frustrated at him because nothing works to soothe him anymore and i know me getting upset doesn't help.  He used to do a great job at self soothing but when it comes to this, he's not capable of it. 

I know I went on and on I just don't know how else to describe this.  I've never seen a child like this (I am a thearpist before having kids so I've seen quite a bit).  I don't know where to turn to get him help since it's not affecting his developmental milestones and it seems like it takes him not hitting his milestones to get some referrals. 

Any suggestions?  I'm at a loss here and in tears tonight.

dundasgirl

I don't know much about special needs, but everyone says there are some amazing people on the special needs board who might be able to help you out...or give you some kind of direction.

In my opinion, you are his mother, and you know something isn't right.  Don't stop until you get some answers.  You are a great Mom to keep advocating for him.

Hugs.

And I get frustrated with typical toddler frustration/tantrums, so I can understand it must be so much harder for you.  It is completely normal to feel frustrated when you can't get through to your kids or help them to calm down when they are freaking out.  The fact that you even acknowledge it shows that you don't let it get the best of you.

jlh123

Thank you for your support.  I may post later on the special needs boards.  They were really helpful in the past with his urology issues.  I know this isn't toddler frustrations/tantrums.  I wanted to write it off as that for a long time.  He has those too of course but this is different with his stress.  As I was rubbing his back tonight while he was laying in his crib, I promised him I will make it better and he won't have to go through this anymore.  I will fix it.  I'm his mother and I won't stop until I find out an answer to this.  He shouldn't have to feel this way.  I just pray he isn't in pain or discomfort of something serious that I'm missing.

DavezWife

This means very little because I don't have much to do with anything related to this, but as a nurse, the 1st thing that came to mind with your description was CP?????

But I second what Dundy said... if you think something is up. keep up the Mother Tiger stuff until it's proven or dispelled.  

(I think you're pretty awesome for reaching out for help/answers, by the way. I also say throw this by the Special Needs board. And more docs that pretend they'll listen.)

dundasgirl

jlh123:

Thank you for your support.  I may post later on the special needs boards.  They were really helpful in the past with his urology issues.  I know this isn't toddler frustrations/tantrums.  I wanted to write it off as that for a long time.  He has those too of course but this is different with his stress.  As I was rubbing his back tonight while he was laying in his crib, I promised him I will make it better and he won't have to go through this anymore.  I will fix it.  I'm his mother and I won't stop until I find out an answer to this.  He shouldn't have to feel this way.  I just pray he isn't in pain or discomfort of something serious that I'm missing.

Oh, I hope he's not in pain too!

Good luck with trying to get him some help.  Can your DH help you out with getting some referrals?  And just because one GI says it's not related means squat.  Two doctors can have VERY different perspectives in my experience.

Mr.&MrsS

DavezWife:

This means very little because I don't have much to do with anything related to this, but as a nurse, the 1st thing that came to mind with your description was CP?????

I also I dont know much about this (or anything about this, I am an accountant- so take my opinion with a grain of salt) but my first thought was CP as well. I know Francisca's daughter was recently diagnosed, you could try paging her for some information on how she went about getting referrals.

I also just wanted to tell you that you are a great Mother and doing everything you can for your children. I know how hard this all can be. Keep your head up. ((Hugs)).

jlh123

Thanks for the support. I am sorry but what does CP stand for?