PLEASE HELP!!!! My 5 month old son
Cecilia - posted on 11/10/2013
My son was born a week late. So that part does not match. He did actually get worse after this shots at 6 months. After that it pretty much leveled off and has stayed the same pretty much. Mind you he's turning 14 on Friday, so a pretty long time of little change. To note my daughter did not get a full dose of DTP shot. It was broken into smaller doses of each one. She did not have the increase at 6 months like my son did.
He wasn't much of a crier either. The sleeping I was told is just part of it. A typical baby learns to grab and hold things about this age. Although it does use energy to learn it, not nearly as much as a child who has a problem controlling muscles that others don't need to. When he was beginning to crawl he would sleep 20 hours a day.
I do finding the rocking and such to sleep a little funny. I never really thought of my sons thing as part of it, but it could be. Every night, even now he basically bangs his head on his pillow over and over to fall asleep. When watching TV or anything that requires sitting for awhile he rocks. I was TOLD he is doing it to stimulate the vision, which never made sense for bed time. Then I was told it was ADHD, then autism. I've accepted they just don't know what it is.
I was not on any of that medication. I was in face on demo when I got pregnant, and was given another shot while pregnant because I went to a clinic and told them I felt pregnant. They told me I was on time with all my shots so it was not possible. So, they gave me the next shot. Although in my case I do know it is genetic. My ex now has more children with the same issue.
The first thing I had noticed with mine was the eyes. The next was the head twitches right as they were falling to sleep (many times it would startle my son and wake him again) Then around 4 months i noticed the hands and feet. He did not crawl until 10 months. He walked about 18 months. We started PT and OT at 4 months. The sooner the better in my opinion.
Now he is a normal kid. No one can tell there is a problem ( besides the moving eyes which is very noticeable) Both of mine are legally blind but get by as normal every day children with a few pieces of equipment to help them see smaller print in school. I know your son does not have the moving eyes, so if he gets some help with motor skills he should have no problem living a normal life.
Elizabeth - posted on 11/10/2013
Thanks Cecilia! I have a couple questions. First, does your son still have the same problems with trembling hands and shaky head? and if so, has it gotten worse? i looked up opsoclonus-myoclous and just myoclonus. I dont think he shows the symptoms the opsosclonus at all! thank God! Let me give you a couple other pieces of information about my son, and you can tell me if any of them are at all similar to yours....Myelz was born premature they said between 35 and 36 weeks! so, he is approximately 4 months gestational! He came home 5lbs 4oz and 18.5 inches long after staying in the hospital for 7 days! At his 4 month appointment he was 15lbs 8oz and 26 inches long!!! He's my little chunky monkey!! :) He also has been an excellent baby, rarely crying at all!! He has actually had me worried about how often he likes to sleep! (Something else I've continuously brought up to my dr and they've said not to worry about it!) Approximately 16 hours a day! He sleeps through out the night, and usually takes a nap in between each of his daily feedings every 4 hours! One thing that has me very worried is, I didn't find out i was pregnant until approximately 3 months along! I have severe ADD/ADHD and bi-polar and had been taking vyvance for the attention deficit and depakote for the bi-polar! The second i began to even to suspect being pregnant I quit the depakote and the day i found out, i quit the vyvanse! The depakote is the one that i am fearful may have affected him! :/ Also, ive read about how babies don't know how to quite regulate their emotions and with their not completely developed nervous systems they may shake! .....So, not only am I ADD/ADHD, but my entire family is, as well as my baby's dad and his entire family are as well! I can't keep from wondering if this may add to why he may shake like he does. Unfortunately chances are, he will definitely have ADD/ADHD as well! Another thing I've realized he does is, he gets very hot!! His head being the hottest and breaks out into a sweat! He especially gets like this when he's upset because it's bedtime! Which is weird, because he is ready to sleep all day long, but when it comes time to go to bed and he knows it, because we do the same bedtime routine every night, he throws a fit and does everything to fight it!! even if he's exhausted!! I have to literally hold him tight against my chest, and do a rhythmic bounce while sshhhing him! He has always done this at night! It's like he cant find a comfortable place for his head, turning it from left to right over and over until i can hold him close enough and tight enough for him to fall asleep and he is usually out in 10-20 seconds!!! His Help Me Grow therapist said, he is probably trying to let out all of his energy before bed!? and finally, im not sure if this matters or not, but he didn't start the head tremors with his hands until he was actually beginning to teeth and feel bad pain from it!??...... I'm pretty sure thats everything I've thought to be out of the norm!! Does your son or daughter have any similarities??
Cecilia - posted on 11/09/2013
I'm going to tell you the honest answer. He needs to see a neurologist.
There are many many things that can cause it to happen. My son had the same issue and was originally diagnosed with opsoclonus-myoclonus (just hands is myoclonus). He needed extensive PT, and OT. He also stayed aware while it was happening. I was told that is because it's just the neurons reacting.
The diagnosis I was given was removed when he was 2 because my daughter was born and had it too. It is not genetic, and really rare to have opsoclonus-myoclonus without a tumor ( myoclonus is not caused by tumors though). So two related children with no tumor meant they got it wrong.
In no way am I saying he has myoclonus, it is one of MANY possibilities.
Fast forward 12 years, he still doesn't have a diagnosis. Be prepared to be told they don't have an answer. The reason you may still need them is to give referrals for physical and occupational therapy.
Elizabeth - posted on 11/09/2013
Oh yes!!! lol all the time!!! Probably too often!!! I'm a first time mom, so I call or go whenever I feel nervous, which is quite often, since I'm a first time mom! lol Beginning of sept was the first time I took him in, specifically about his hands trembling! They said it was probably nothing, just a cork that babies have, and for me to record it, if I could catch it on camera! so, me and my bf always have the camera next to us, but it's like the second i pull out the camera, he stops! I took him back in oct for his 4 month appointment, and told them once again, how i was worried! they told me not to be! and to try and record it! On Oct 31 my parents were visiting and my mom was holding him and he did this teeny tiny head shake, like up and down 3 times each, lasting only a couple seconds! I looked at my Mom and said what was that? I thought it could be him catching his balance, like he does, and said I'd wait to call the dr, if he did it again. He didnt do it again until, 2 days ago. I called the drs, they said not to worry, just to try and record it! So, yesterday he did it once right after his bottle was gone! He was drifting off asleep, and I pulled out the bottle and brought him up to burp him and he began to cry and then shake his head with his arms!! I quickly, pulled him off my shoulder to look at him while saying Myelz, and he stopped by the time i made eye contact with him! He then did it again today twice! Once again after a bottle while falling asleep and then again later while he was asleep on my chest, he woke up and looked at me and his head was shaking! He smiled and looked me straight in the eyes, and stopped as soon as i started to pick him up!! It doesn't seem to be a seizure since he is totally with it and he can be stopped by grabbing him, but it is still scaring me!!! it started with just his hands from birth and now its escalating to his hands and head!! Have you ever heard of such a thing?
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