I have a 9 mo old son who was diagnosed at 2 mos of age with,spastic quad cp,ftt,ge reflux,microcephaly, and a seizure disorder. His inury was caused during my pregnancy at around 24 wks, at which time I had sepsis, and pneumonia, with premature labor, which was stopped. He had an intracranial hemorrhage, causing severe damage.
He recently had a ct to rule out optic dysplasia, the ct showed more brain atrophy. Apparently his skull has grown, but the space in between the skull and brain is larger. His prognosis was not good from the beginning, and he is currently only at a 1 mo old level.
I am wondering if this changes anything, as far as his prognosis. Is there anything else to be expected? His neuro has not really said anything, just that his brain is smaller now, which happens sometimes.
If anyone can help, has been through a similar situation, or any words of advice, would be appreciated. Becky
I am sorry to her of your son. I suspect that what you are seeing is that the brain just isn't growing rapidly as a brain without the insult that occurred with your son. Your son's skull would not grow unless his brain is growing, unless he has hydrocephalus that is worsening, which from what you say in your note doesn't seem to be the case. The brain drives the skull size, so if there is brain growth, then the skull will enlarge. That is why we pediatric neurologist always measure the head circumference of a child at each office visit. I really don't think that this changes the prognosis of your son. The job for you and the healthcare team is to maximize your son's development. That includes early intervention education, OT, PT, cognitive stimulation of all sorts, seizure control, and plenty of tender loving care. Of all the things that we do as healthcare providers, it is the last thing I mentioned that is likely the most valuable in determining the potential reached, by your son. Hang-in there and do your best. Find a support group in your area and get involved. If you have other children, get them involved. We find that siblings are often so great with their challenged brother or sister. Also, it is likely that you will have to find a good pediatric orthopedic surgeon down the line. It is likely that constrictures will develop and will need to be taken care of surgically. Optimize the OT and PT now, and this might be lessened. Currently, all you know is that your son has some problems. What his potential will be is unkown. Do the best you can and I pray that you will be surprised on the outcome. Good luck with your son. Let us know if we can do anything to help.
CCF Neuro:Pediatrics MD, RPS
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