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SaraC628

Has Anyone Had A Baby With Developmental Delays?

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So this is probably really far fetched, but we have been looking for answers for a while. My 20 month old son started to show severe deveopmental delays at 4 months. He ended up being diagnosed with low muscle tone and hyperflexibility in the joints. He has a slightly sunken chest and some barely there facial characteristics that are different. He is not walking, he will take 4-5 steps on occassion. He his mentally about 8-10 months. He does not talk, he babbles. The genetics doctor was certain that there is an abnormaility, but has not been able to find it. Most recently they completed a 90 gene x-linked mental retardation panel which was normal. All of the doctors at the genetics office were certain that was where we would find the abnormality.

I had a difficult pregnancy, 2 vessel cord, gestational diabetes, and was literally in labor for one month. He was born at 37 weeks and 2 days. I am starting to wonder if there is a possibility that his issues are linked to my orthostatic intolerance. I was never myself again after the pregnancy, but did not get significantly ill until he was three months old. I am just wondering if anyone out there has had this happen to them. I really wonder if he just didn't get enough blood while in the womb. I have asked the genetics doctor about EDS due to the hypermobility of his joints, but because there is not really a test to confirm it and it would not explain the delays he is not ready to say that is it. I have nothing to suggest that I have EDS. I find this part interesting because I know that several people with POTS/OI have EDS.

He has had a MRI of the brain without contrast and that appeared normal. I just want to figure out what is wrong so that we knwo how to help him. He is already in PT, OT and speech therapy.

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yeah the first thing I thought was EDS....... hum

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This sounds very challenging and stressful. Very hard to not have answers for yourself, but even more so for your child.

I had severe POTS in last trimester (and after). My daughter did not have any delays, however she was a late walker. Did not walk until 18 months. This is not really considered a delay, as it is considered within the normal age range, but it is at the very end of the range. I always wondered how it might relate to POTS. Neither of us seem to have EDS but we have not been evaluated either.

I do think that I may not have given her enough tummy and floor time, partly b/c I was so unwell for the first 10 months of her life. I interacted with her a lot but I didn't move her around as much as a well mother probably. She never really enjoyed crawling, she scooted and went from scooting to finally walking. I think this also affected her upper body strength as she struggled a great deal initially with learning to write and do other tasks requiring hand, wrist and arm strength.

So I don't know how helpful this is. I hope you find good answers soon along w appropriate therapy.

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I belong to an EDS forum and I know there is quite a bit of talk on there about children with EDS having developmental issues and autism. I don't have children, so I haven't researched this part of the disease but I think if you ask this question on that forum, you would receive a ton of information. The site is ednf.org and the forum is called Inspire. Best of luck to your family. Once you sign up, you can just copy and paste the body of your thread from here to a post there so you don't have to re-type everything.

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Yes. Oh my! You are describing parts of my experience with Ronny- my 4th child (who is now 9 and is doing great now after a really difficult first 3 yrs of life.). I have suspected there is a connection to my last pregnancy, my son, and my Dysautonomia but this is the first time I've heard of anyone else have a similar problem.

At 20 weeks during my pregnancy I started contracting. ( this is long before I became ill w Dysautonomia. I was very healthy prior to these contractions although I was at high risk for pre term labor bc my 3rd child was 6 wks early.). I spent the next 18 weeks in a deep fog, and deep depression and had severe Orthostatic intolerance (although back then I didn't know to call it that- I just couldn't stand for any length of time bc of the overwhelming pain and contractions. The only thing that stopped the contractions was lying down. The doc said they were not productive contractions (like braxton hicks) but they were painful not just in my belly but also down my legs and I couldn't do anything upright. So I was not on medical bed rest but I was on bed rest because I was in too much pain to stand or do anything. With 3 other little ones in the house I had to have help every day. It was a horrible situation. I spent most of that time in tears- hormones flying.

Ronny was born healthy at 38 wks. And I felt so much better. I was slower in recovering from that birth than the others but was happy to have a healthy baby.

At about 6 mos we noticed there was something wrong because we had already seen his 3 siblings at this age. At 6 m the others were sitting up. But at 6m Ronny was flopping over like a rag doll. Very low tone. I mean scary low. He wasn't really even holding his head up that well. So the quest began to figure out what was wrong with this kid. Oh my- this led us on an enormous wild goose chase. We visited almost every pediatric specialist and did testing and poking and prodding on this poor child trying to figure out what was wrong. Meanwhile he missed all his developmental marks. Crawling, standing, talking, walking- I think the only thing that happened "on time" was his first tooth. We kept coming back to our pediatrician saying, "there is still something wrong, help us find it" and she just said without any clinical evidence of a problem she can't give a diagnosis. We were in the process of ruling out autism, muscular dystrophy, deafness, brain tumors, and on and on. Thank goodness she recognized early on that we needed therapy so she started at 6 mos by writing a script for physical therapy- then a few mos later speech therapy- and eventually at about age 2, occupational therapy.

We had heard great things about this occupational therapist. And during that first visit, before we even made it back to her room she said, "Oh, this guy clearly has sensory integration disorder.". And so began the quest to understand, learn and treat this condition which our pediatrician only anecdotally recognized. (I think it is better recognized in the medical community now.). Ronny actually had a severe case of Sensory Integration Disorder (SID.). If my hands were wet and I touched him, he would scream in pain. If we tried to cut his hair he would freak out as if I was cutting his fingers off. He couldn't walk over cracks, or flat footed. He had a hard time with balance and eating a green bean to him was like eating a piece of glass. Our local news station actually came out and did a story on him because it was such an interesting case.

Here's the thing: SID is a dysfunction of the autonomic nervous system.

Essentially the sympathetic and parasympathetic nervous systems are not balanced correctly so they dont process incoming sensory data properly. Hmmmmm - as a side note this is one of my biggest symptoms- hypersensitivity and inappropriate processing of incoming sensory data.

So in the case of Ronny, he couldn't learn how to sit up at 6m and had low tone bc he was not learning. For instance, most kids at that point have spent lots of time on their tummy, rolling over and learning balance. Well for Ronny all that incoming sensory data (the feel of the carpet on his skin, the sound of his brother in the room, the lights from the window were overwhelming his senses and he couldn't move forward in his development. He was super low tone but it wasn't an EDS situation it was an autonomic nervous system processing problem.

I could go on and on about this- we have loads of records and documentation on it. Which I'd be happy to share in more detail- just PM me. But in the end two things helped:

1- early intervention of all 3 therapies (PT, OT and speech)

2- changing his diet. (we found several food sensitivities and once we changed his diet- I made almost all his food from scratch during those early years)

Today you would never believe there was ever a problem with Ronny - unless you were very close to him. Today the only thing that is still difficult is a classroom, lunchroom or any room full of noisy kids/ people- too much sensory stimulation. But now he knows how to handle it and adapt.

I will pray for you and your situation. Yours may or may not be SID but it would definitely be worth ruling out with your doctor. And I'd love to stay updated on your situation.

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Kelly,

I think is part of the issue with our son. His OT has discussed sensory issues with us. Aaron is the opposite of Ronny though, Aaron seems to have a lack of sensation. We have continued to tell his doctors that he has a super high pain tolerance. In fact Aaron never cries. His OT discussed that he possibly did not know where he was/is in space. I don't think that this part of our son's issues made sense to my husband and I until your post. Aaron does not like commotion and he gets easily overwhemed. I realized that the times I have gotten him to repeat something, which is really rare, it has been just him and I in a quiet room. Did your son seem to learn a new skill and then forget it? Aaron for instance learned how to clap and did it for about a month consistently and then he just stopped and even now at 20 months very rarely will clap. The same thing happened with waving and several other tasks. I have said several times that I feel like he is trappd in his mind. Aaron does not display the classc signs of Autism. I did read up on sensory integration disorder and it appears that it can be part of something bigger.

Katie,

Thanks for the info, I am going to look into that board. We have an appointment on Tuesday with the genetics doctor and I really like to go in there with some ideas.

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Yes. Learning something and then forgetting was with us every step of the way. He would learn, then forget and have to relearn. And if you've already read about SID you may know that each kid can present a little differently either "hypo" or "hyper" in each of the sensory areas. Ronny had a lot of issues with proprioception - where he was in space. For example- Once he was walking he would come to a crack in the sidewalk and have to crawl over it because he was afraid it would cause him to fall.

It is like they are trapped in their mind. I remember many a nights looking in on Ronny in his crib praying for him because I knew he knew something was different about him and he didn't feel good about himself. I prayed for his esteem. Today Ronny is one of the most self assured kids I know. He is also very bright and is at the top of his class. Cool huh? Also, today Ronny has no recollection of his difficult start.

You may already know about it but the "Out of Sync Child" is a great resource. Glad Aaron is not showing signs of autism but it is good you are taking time to rule out other conditions that can coexist w SID. Based on what you've said it sounds like Aaron and Ronny are a lot alike.

If you want to PM me with more details about Aarons history and things you've been concerned about I can tell you which of those are similar to what we experienced and which are different.

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