Developmental Delay

Carrie - posted on 07/07/2012 ( 3 moms have responded )

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Hello! I am new to this site and I just need some support of a mom who has a similar situation or some sort of advice or just peace of mind for me. I am a mother of a 20 month old. He is developmentally delayed. He does not walk or talk...no mama, dadda, etc. he does make noises and is vocal, but cannot put words together. He is currently learning signs and understands and responds to people but does not talk. He is in Early Intervention and has PT, OT, and DI once a week (for each...so therapy 3 times a week) He has seen a neurologist and even though he is delayed, she is happy with his progress and would like to see him when he turns two. when he started early intervention, he could not even sit up. he did not sit up until after he was a year old. he had really bad reflux and hypertonia in his arms and hypotonia in his torso. Cerebral Palsey was addressed, but the doctors do not seem to think that he has it because he has come such a long way. when he saw the neuro in november, he wasnt even sitting up or crawling on all fours, but with the help of early intervention (he started in late september), he was sitting up, crawling on all fours and cruising by January so the neuro wanted to let him continue with the early intervention for a while and see how he progresses. He has done so well and his therapists are amazing, but the not knowing is killing me. has anyone ever had a similar circumstance? all his therapists, family, friends, and doctors say i am doing everything right for him, but i just feel so lost! he has had testing done and everything comes back okay and please know that i am SO THANKFUL that they are good, but at the same time, not having any answers is killing me. especially since i am now 6 months pregnant with my next child so i cannot help but worry constantly about the both of them. aside from the fact that he is getting too heavy to carry. everyone says that he is on his way to walking and a lot of times, the other milestones come along with that. im wondering because of his reflux and lack of tummy time, if that has an influence on his delay? i dont even know what advice or anything i am looking for. i wish i had a crystal ball to see into his future lol! cognitively, i am really not worried because he does play and he does respond and he is picking up with signs and there has been no professional who thinks that he is lacking the cognitive skills. could he just be delayed and catch up? when do you stop looking for a red flag or a diagnosis? i can go on and on and on about this. i just want some comfort from someone who went through or is going through something similar. like i said, as much as i am blessed that he has not been diagnosed, sometimes it seems to make me even more crazy about it because i google everything and i compare him to everyone and i drive myself nuts! help! thank you so much...sorry for the book...i just want the best for my baby :-/

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Lgenn319 - posted on 07/13/2016

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I just came across your post and would love to know the progress of your child. I have someone close to me with a similar situation and i am looking for advice and thoughts, her situation sounds like yours and exactly how you are feeling....

Carrie - posted on 07/07/2012

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Thank you so so much for not only getting back to me and for your resources, but for your positive encouragement! every couple of weeks, i hit a wall and i get...i dont like to say "depressed"...but more like in a funk. i am sure you know what i mean when i say that you are strong strong strong around everyone else, then at night, when you are alone, that strength gets tiring and your heart starts to ache because you dont know what else to do and you are tired of answering the same questions over and over and feeling like you constantly have to defend your child. it gets pretty exhausting!
the neurologist was considering an MRI at his first appointment. she said that she wanted to see him in 3 months to see how he was doing with early intervention. when he first saw her, he wasnt even sitting up on his own. then, when he went back 3 months later, he was cruising! so she said that she wanted to hold off on the mri for right now. i have a feeling she will schedule one if he is not walking by 2. if she doesnt suggest it, i will push for it. she did suggest genetics, but since there are no "serious" issues (i say serious in quotes bc it IS serious to me, but i know what they mean) and since treatment would not change if something was found, they have a hard time getting my insurance to cover it. other than the reflux, which he is medicated for and does see a GI, he has no issues actually eating. never did. he chews his food and he eats everything (that he likes lol) i mentioned CP to both the neuro and the pediatrition and neither seemed to think that would apply to him.
when he started early intervention, he had clenched fists and toes, but they worked with him on that and he doesnt do it at all with his hands and only when he is uncomfortable/unstable with his toes, more in a habit/comfort kind of way now. that was what initially made me think CP because he always had his toes curled and his fists clenched and his tone was so off, but since then, he has overcome those. his legs and arms are much loser and he is able to sit on his knees and bend the ways he is "supposed to" and his hands are always open now. he claps and he waves hi on command and he signs "drink" and "more" and we are working on some more signs now. again, before intervention, he didnt put things in and out and didnt really play with toys the "right" way, but now he does. if you show him how to play with something (like put a car on a track or something like that, he will do it. the boy amazes me every day. if you asked me months ago if he would be here, i dont know if i'd say yes. his therapists all have said that he amazes them because he has progressed so well and they tell me now (since they couldnt "offically" label him with a diagnosis) that they really thought it was CP, but now they dont. he is a mystery. i really think that he was given to me because i have always been so particular and have to do everything by the book, but he is definately NOT by the book lol! and he does NOTHING the way he is supposed to!
i really really really appreciate you taking the time to talk to me. i found this site while i was googling things...lol, i will try to stop that! but i think this will be a lot of help for me. thank you so so much!!

Cherish - posted on 07/07/2012

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Carrie,
My youngest son who is 10 has developmental/medical issues.
I know how you feel about the not knowing.It is VERY frustrating to go to a million appointments and have all kinds of therapists,and nobody gives you any real answers.have you been to a geneticist?They are fun b/c they can do a simple blood test to rule out stuff.Did they do a MRI?I thought(and I could be wrong) that a MRI could r/o CP.
My son started "talking" after he was 4(tho he is 10 now and has the vocab of a 2 yr old),he uses a speech device.He did not chew food until he was 4.He has classic autism,hypotonia,dyspraxia,SPD,MR,type 1 diabetes,seizures,SIB..etc
He did not have the physical "problems" that your son has.It is fantastic that the professionals do not think there is a issue with him cognitively,and that he is making such gains physically :)
Our situations are similar but very different.I do not know of anyone who had a child that was delayed then just caught up,BUT I am sure there are people who do know of kids like your son.
What state are you in?Have you been to any local support groups?

When My son was younger I searched for things on the internet too,which was a BAD thing b/c I would always find stuff that matched his "symptoms" then I would freak out and get stressed b/c the prognosis was not good,stop looking up stuff...lol

I too needed to know WHAT was "wrong".But now that he is older I see now that it did not really matter what the cause was,as long as you are "treating",or working on the symptoms,like speech,PT,OT..etc
I see now it seriously does not matter what the cause is(unless it is a metabolic disorder that can be treated sometimes)

I felt bad too,wondering if I could have done something different,or better,or more...I still wonder if I could be or should have done something different...My was in early intervention,he had speech,OT,PT,hippo therapy,behavior therapy..etc from the time he was 2.He still has speech,OT and behavior therapy every week.

Not enough tummy time did NOT cause his delay.YOU did not do ANYTHING to cause the delay.There is probably nothing you could have done differently.
I am sure the tone issues caused the physical delay.
Does he have sensory issues at all?
Does he eat?

There is a group on circle of moms for kids w/DD,if you post what you wrote there,I bet there are alot of other moms with children like your son :)
Feel free to send me a message if you need to talk
(looks like I ended up writing a novel too...lol)

Here is a link to the community on COM for kids w/DD

http://www.circleofmoms.com/children-w-d...

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