| Subject: cystic encephalomalacia, dystrophic calcifications and more |
Author:
Gebre's MOM
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Date Posted: 10:51:04 08/17/05 Wed
Has anyone had a baby with cystic encephalomalacia, dystrophic calcification, seizures, microencephalopathy and “mild background suppression” results on an EEG.?
I know this forum is more for the prenatal period, but some ot these conditions are detected in the womb. I am hoping someone can give me real –world advice. We’ve seen over a dozen DR.s both in Jamaica and the US and EVERYONE is giving different opinions and prognosis, but few seem to have a comparable example to point to. Below is the summary of my son’s illness- originally typed up to be submitted to neurologists, but PLEASE read and maybe you can shed light or link me with someone who can.
If you have had a child with similar conditions, what has been your experience, with feeding, with motor developement, speech development etc?????
THANK YOU!
My 4 month old son was hospitalized for 10 days at 3 weeks of age with suspected bacterial meningitis. He was born and subsequently hospitalized with the meningitis in Jamaica, where I was living at the time. He was treated with antibiotics, though the CSF culture never grew, it appeared that he responded to the treatment and was sent home at the end of the course of antibiotics.
Post hospitalization his appetite was fine but I had several concerns- mainly he had lost his ability to track my face, and never seemed to look at me. The DRs. Advised me this was normal at his age (he is my 4th child and I KNEW something was wrong). Also, he was ALWAYS fussy- needed to be held every waking moment to be soothed. Other disturbing symptoms were a rhythmic jerking of his hands and feet (in unison) whenever he was asleep in the car (the roads in Jamaica are very bumpy- I felt the sleep and the bumps combined were causing some type of reaction). To this concern I was advised he probably had sleep myclonis.
3 weeks ago his private pediatrician on the island told me his soft spot was gone and she ordered skull x-rays. They revealed cranial synostosis. I then flew him to the States to our local children’s hospital. They did a CT scan and the DR. came in to advise me of the results with a very grim face. He basically gave my son a death sentence. When I told him I didn’t want my son dying in a hospital hooked up to feeding tubes and breathing machines, he said “You will have to make decisions like these in the very near future” also when I asked if he would ever walk or talk “I can say categorically without a doubt, NO”
This ER DR. prescribed Valproic Acid and referred me to a nuerologist. Within a day of starting on the med. My son’s fussiness literally disappeared. The neurologist apt. was a stark contrast to the ER visit. The neuro. Advised us that he saw no breathing machines or feeding tubes in my son’s future. Said the important thing was to keep him on med. And to start physical therapy. Said that no one should say he will never walk or talk. He ordered an EEG, which has been done, but I don’t yet have the results of it.
A few days ago he started with a pediatrician- she said, based upon the CT results she had received ahead of our visit, she expected to see a child who was not even moving any limbs. He exceeded her expectations – however she said based on the CT she didn’t think he would ever be able to walk or talk.
On the positive side, his previous noises were only the tell-tale high pitched scream, and regular crying. Two days ago he began to laugh and attempt to coo. He has also began smiling on a more regular basis, especially when I hold him and do deeper up and down type motion with him.
My concerns at present are this- at 4 months of age he is 14lbs and 11oz- his appetite is healthy however there are times where he wants to eat (he is strictly breastfed) and he seems unable to. There are also times when he is eating and all of the sudden he will begin to choke(aprox. Every other day this occurs). How is this related to his condition, and could this get worse?
He is currently on 1.8cc of valproic acid, every 12 hours. Could this be altered? He often seems fussy two hours before his next dose is due.
My other concern is general lack of information on his prognosis. Where can I find information on similar cases?
I have included the CT results below.
UNENHANCED HEAD CT
HISTORY: Microcephaly, abnormal neurologic exam. Past history of meningitis.
TECHINIQUE: Axial images are available from the base fo the skull to the vertex without contrast and are reviewed on bone and soft tissue window settings.
There are no prior studies for comparison.
FINDINGS: There is marked bilateral cystic encephalomalacia of both cerebral hemispheres. There are also extensive dystrophic calcifications in areas of residual cortex and in the thalami bilaterally. There is relative sparring of the brainstem and posterior fossa. There are also cystic changes in the region of the external capsule. There is secondary cranial synostosis of the sagittal suture with ridging and overlapping. The remaining sutures are also small and ridged with sclerotic margins.
CONCLUSIONS: There is severe cystic encephalomalacia involving both cerebral hemispheres with dystrophic areas of calcification, mild ventriculomegaly, and secondary suture closure due to lack of brain growth. The changes are most likely secondary to a perinatal infection.
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