|Topic Review (Newest First)|
|12-22-2008 03:35 PM|
|2bluefish||Sort of the same issue - Juju was diagnosed with a brain injury at birth. He has secondary microcephaly. It's really hard to know anything with the new ones. Juju didn't seem that bad at first - other than screaming all day long. But as time when on, the extent of his delay became more apparent. At 1 year he has just about reached the level of a 5 month old in gross motor skills, he has neurological vision impairment and isn't able to reciprocate visual cues (smiling, etc.), he coos, but it is always the same sounds so I think there is a delay there, he started having seizures recently, he's bottlefed - he's been hard to feed, and he has chronic constipation.... I know with secondary micro (micro caused by brain injury) and CP, there is an increased risk of congitive impairment - but there is a % that are of average intelligence. I've also read that quality of the caregiving environment has more influence over outcome than the extent of the injury. Some severely injured people do better than some with milder injuries. Rehabilitation is a hard journey. We see steady progress with Juju, and he is responding hyperbaric oxygen therapy which be are blessed to be able to do at home every night. I try to stay positive. It's hard to think that there may come a time when his needs could be greater than what I can provide. We feel like we are in a battle - a fight to give him the best quality of life possible - no just for Juju's sake but for our whole family. He's an absolute doll. I can't imagine my life without him. But this is also the hardest thing I have ever delt with.|
|12-22-2008 12:35 PM|
|mama kate||HIs stroke was in his right frontal lobe. His next MRI is on Feb 2nd.|
|12-22-2008 03:39 AM|
There is such a huge variation, it's really hard to say. I work in a field where I look at exactly this kind of stuff all day. I would say most kids are fine to moderately delayed and there are those who are more severely affected.
My dd has what we believe could have been intrauterine strokes, or infections or possibly demyelination (hopefully not this one); ie, we're not really sure. Basically she has a multitude of T2 hyperintense lesions on the right hemisphere of her brain, mainly spread throughout the frontal lobe. She has moderate, but well controlled now, partial complex epilepsy and some behavioral issues, but at age 4, is doing excellent with no physical or cognitive delays.
What does his MRI report say? How he does really depends on where and how much damage there is. And even then, there's really not much you can do but wait, and be proactive with therapy.
|12-21-2008 05:14 PM|
|mamajody||I have no experience with the IU strokes, but is there anyway at his age to tell how much is due to the strokes, and what may be due to the drug exposure. I have worked with many kiddos that have been drug or alcohol affected IU, and their delays were sometimes many and quite varied. Best of luck to you with your foster son.|
|12-21-2008 04:55 PM|
I've never met another kid with the same issues as my own son!
He had IU Stroke(s), with resulting damage in right front parietal lobe. (I am not a drug user, btw. I had 2 serious illnesses w/in the first 14 weeks of pregnancy, and that *may* have been the cause of his strokes, but we'll never know ). He also has Microcephaly.
Here's what I can tell you. ...
we didnt discover the strokes til we had an MRI done of his brain at 2.5 yrs. Suddenly we find out he has a hole in his brain. Our neuro was shocked. The type of injury we have in the R.P lobe deals with vision, not motor skills. So we're watching his vision. When he's older, a neuropsychologist will test his vision with a special program to see if there's any deep problem like depth perception, etc. Until then, he wears glasses witha bit of farsightedness correction.
As for delays, he was VERY delayed as a baby. He has major GI issues that dont seem to be related to the Micro/strokes, and he also has a chromosomal abnormality.
He's still considered "undiagnosed", because we just haven't been able to find the syndrome or disorder that encompasses all his problems. we've even stumped doctors at Kennedy Krieger at Johns Hopkins in Baltimore.
So, as for his delays, it will really depend. My ds is considered high functioning. That could change if his darn head doesnt start to grow. But until then, he gets a few hrs of therapy a week, and goes to SN preschool 3 mornings a week. He gets therapy there as well as private therapy.
He is a fairly normal kid. At 3.5 he can walk, run, jump, play, talk, try to sing, interact, be sociable (almost too sociable!), and has zero social qualms (which is fairly dangerous., he'd go with strangers!)
So its not ALL doom and gloom. If you didnt know his history and see his feeding tube, small head, you'd really think he's totally typical.
I'd say do some therapy, and get that MRI done, and then go from there. It sounds like he's doing much better than my DS did as an infant, and there is no way to make a totally accurate prediction on the future.
I do know that in reality, microcephaly can really cause things to deteriorate later on, but I'm living in a fairly happy bubble right now with my ds. He is doing REALLY well.
Hugs to you, and for loving that sweet boy! PM me or email me if you like.
|12-21-2008 03:40 PM|
Kudos to your mom for parenting so many children with special needs, and to you for being responsible for them if something happens to her!
I don't know anything about microcephaly, I just wanted to say that.
|12-21-2008 03:54 AM|
|mama kate||Thanks Mama! I appreciate the kindness for him. He is such a sweet baby boy.|
|12-21-2008 02:57 AM|
Awww. I just read your post to my dh. We both said, "That poor little bear!" (Our youngest is 13 mos.) Strokes at such a young age... I can't even imagine.
I couldn't read and not respond.
I wish I knew.
If it's any consolation (it may not be, I know), I was dx'd at 14 yrs old w/ cortical and central atrophy of the brain. I'm doing ok, save for some migraines. My brain is smaller than "normal." (Should add that I need follow-up MRI's, but there it is.)
|12-21-2008 01:20 AM|
|mama kate||Thanks Satori - The microcephaly has been more of a concern to me already since I seem to have had a hard time locating any info on children being "normal" (whatever that is ) functioning with it. I just am trying to keep it all in prospective and unfortunately this is a decision that while it requires both head & heart - I need to let my head lead the way............. Hopefully cps will let us get closer to his first birthday to make the adoption decision since legally he is free for us to finalize his adoption the first of march since he has been with us so long....|
|12-21-2008 01:09 AM|
|Satori||Honestly its just to early to tell. The MRI might give you an idea of how much brain damage occurred but these little guys can really rebound. It sounds like he's got mild CP which while requires some help isn't that big of a deal imo, I would be more worried about the microcephaly to be honest since that's usually associated with significant mental delays which could mean a lot of work for you in later years.|
|12-21-2008 12:56 AM|
Any Mamas have experiences with one or both of these?? Our littlest foster babe had 2 strokes in utero thanks to bio moms drug habits. Both in his frontal lobe. He was born @6.5 weeks early as well & has a dx of microcephaly (though he "looks" proportionate) - He's bitty but all measurements - height , weight, head - have steadily grown.
He is a little tight on his left side - mainly his arm/hand and slightly in his leg.
He starts PT/OT next week (2x each 30 min each session)
He seems to be hitting age appropriate milestones - "talking to us" reaching & now grabbing ahold of toys, looking at himself in the mirror, great eye contact.
He sees neuro again in Feb and as well as he will be having an mri to evaluate the strokes.
Not sure what I'm looking for.......... probably just hope for him that there is a possibility that we are just looking some issues with his hand. Maybe a reality check that he may need life long care that DH & I cant provide him.
we are STRONGLY considering adopting him but due to the fact that we are already going to be responsible for my 7 special needs siblings when something happens to my mom we dont feel we can fairly commit if there are life long major needs......... but at the same ime I dont know if I;ll be able to let him go even if there are going to be major issues........