[casper3665]

Hello Everyone,

I am in the begaining of adoption of a 19 month old baby boy with shaken baby syndrome.
We have a lot of concenes about this child for many reasons. They dropped him off with no information. Other than shaken baby syndrome, we had only met him once before.
So here goes 1. He seems to have C.P. but they tell me he hasn't seen an ortho doctor?
I know it's a nero thing but my other child with C.P sees an ortho doctor?
2. He is 30 Lb's which is to big, I think?
3. He talks some but not much, but he is only 19 months old.? 4. He doesn't walk yet and his hands and feet are like ice all the time. even with socks, on his feet?
I don't know but they say he is a leave one care and he is a lot more care then my downs baby or my children with other syndrome? I think they are leaving out a lot of stuff that I will be needing?
Any thoughts on any of this??

Joyce
casper3665@comcast.net

[leastofthese]

Hi, Joyce~

I have just completed the adoption of a 2 1/2 year old boy with shaken baby syndrome. He sees a neuro and an ortho. My little girl, who is also 2 1/2, has CP as a result of IVH bleeds as a 1 pound preemie. She and my son have very similar issues, but very different original problems.

They both wear AFO's (braces) on their legs, both wear glasses, both need one eye patched for a period of time each day. Both are very delayed, cognitively and physically. Neither walk. My girl crawls and is beginning to pull up on furniture, my boy is just beginning to be able to pull himself along with his arms, keeping his legs stiff behind him. My girl can sit up with no help, my boy is just beginning to be able to sit unsupported.

My kids both see a neurologist and an orthopedist. I would imagine the need for an orthopedist would depend on what you are seeing in your child. Is he weight bearing on his legs at all yet? Also, does he receive physical therapy? If you are concerned, you might suggest to the regular pediatrician that you'd like to consult an ortho and he/she might refer you.

Shaken baby syndrome is such an ugly thing!!! I guess it bothers me the most because it is so totally preventable. My son is such a miracle. My neuro told me he would never walk or talk. However he is yelling mommy and daddy at the top of his lungs. He said "drink" just this week. He answers "yes" to most questions and he sings along with whatever music is playing! (Okay, he doesn't actually say the right words, but he grunts in tune with the music and does say ending sounds!) Our physical therapist believes he will walk, even though it's going to be a while, yet. So, we are thrilled. He is such a blessing to our family.

Yes, 30 lbs does seem a bit big, but remember he probably gets little to no physical exercise. What does the pediatrician say?

My little boys feet stay cold often too. I don't know why, I just keep socks on him. He doesn't seem bothered by it.

I don't know what you do or don't know about SBS, but the not talking especially at this age is very common with SBS kids. You may want to request Speech therapy. My kids receive physical, speech and occupational therapies every week. Remember, this child has severe brain damage. It is possible that he could be completely non-verbal permanently depending on the severity of his shaking.

The best picture I have had of what shaken baby does to the brain is the example using an egg. You crack an egg into a tupperware bowl, leaving the yolk intact. Put the lid on the bowl and shake violently back and forth. Open the lid, the yolk is completely broken and running. That is what has happened to our son's brains. Any neurological pathways that had been formed at the time of the shaking are either broken or damaged. Those cannot be repaired. New ones can be established, but old ones won't come back. So who ever knows what a child with SBS will or won't be able to do? Some kids with SBS have very few after effects, but some become completely bed-ridden, vent-dependent, and in a coma like state for the rest of their lives, and some lose their lives. I think considering the odds, my son is doing fairly well.

My son is considered medically fragile by Kentucky's standards. I'm not sure what constitues level one care in your state, but you might question them.

I'd love to hear more about your son. Oh, also, another thing I thought of--my neuro was able to show me my sons brain scans that were taken at the time of the shaking. This was very helpful for me to know the extent of the damage. Also, he told me that the shaking was so violent as to cause a stroke in one area of my son's brain. This accounts for his "CP"-like symptoms. You might ask about that.

[casper3665]

Hi,

Well I do know that he is standing but holds on like he will die if he lets go, then his hands get so cold and grips so hard that his fingers turn white.
He eats and that is a good thing. He drinks by himself form cup and bottle.
He crawls with both legs now he didn't before. He has slow shakey movements, in his hands.
I don't yet have the insurance so I can't do anything until they fix that. But boy do I have question for my ped. doc when the time comes.
And leave 1 is only one step above normal, I think they need to rethink that one.
I would love to see his brain scan to see how bad it is. the report I got said he was shaken and then his head was smahed againest the wall. So I am thinking it couldn;t be good. I think they just thought I was clueless so they can get away with it. but I am not that dumb.
Thank you I will get back to you as soon as I get more information.

Joyce

[leastofthese]

Joyce, one other thing I thought to tell you...

You can call your early childhood intervention program to request an assessment (It's called First Steps here, I don't know about your state.) They can then decide which therapies he's in need of and they will bill his medical card. (I'm assuming that your state is providing you with a medical card--you're going to need it--for sure! )

First Steps has done wonders for my kids!

Good luck with your information search!

[casper3665]

Hello,

Yes they will but it will take 30 days.
I am so up set at how they are handleing this case I want to vomit. I don't think they get it this child needs stuff now not when they get around to it.
I think the longer it is delayed the less hope their will be.

Joyce

[leastofthese]

Unless he has just been removed from his birth family, the worker should have a copy of his medical card and they can use that to go ahead and get the ball rolling with the early intervention program.

If you are having trouble getting his immediate worker to respond to his needs, don't feel bad about contacting the worker's supervisor.

30 days is a while, but it probably won't make a measureable difference in the end. Hang in there and keep asking the hard questions!!!!

[rindava]

for families who do not have insurance...they are requried by federal law to provide early intervention from birth to 3...then special ed in public schools picks up.

The requirement for early intervention and special ed sets a higher delay limit it is about 60% around here......so if your child is only like 25% delayed they may not get services but would qualify medically for services so you could take them private if they get medicaid or you have really go insurance...

For example, my son more then qualifies for occupational therapy medically but the schools will not give it to him because his delay isn't great enough

I have had several pre-school foster children who qualified for speech therapy medically, but not through the school system or early intervention....if they are here long enough I would take them to speech therapy through the children's hospital

services for special ed are free also, but they can bill medcaid for them...they even bill medcaid at the school here for despensing meds....if the kid is on medcaid they can bill for the nurse giving the kid his adderall pill each day, or whatever....