Re: cystic encephalomalacia, dystrophic calcifications and more -- Poor Prenatal Diagnosis-Advice And Support

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Subject:

Re: cystic encephalomalacia, dystrophic calcifications and more

Author:
Charmayne Lincoln

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Date Posted: 14:14:09 11/05/08 Wed
In reply to: Gebre's MOM 's message, "cystic encephalomalacia, dystrophic calcifications and more" on 10:51:04 08/17/05 Wed

MY son was born at 26 weeks. He is now 3 months. But 3 wks his corrected age. He has grade IV Intrraventicular Hemorrhage with subsepuent development of Cystic Encephalomalacia. He has already started developmental classes at childrens hospital. Its unbelievable but my son smiles... tries to crawl.. Cooes... puts his hand to his mouth to let me know he is hungry and has great eye sight and hearing.

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[> Subject: Re: cystic encephalomalacia, dystrophic calcifications and more

Author:
Tommy's Mom
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Date Posted: 00:54:06 05/26/09 Tue

Gebre's Mom,

The symtoms of your child are very similar to my son's.

I have a three 1/2 month old son. He loss oxygen during birth and was in the NICU for 22 days. He's returned to the hopsital twice since we got him home. He was diagnosed with severe cystic encephelomalacia throughout his entire brain and complex partial seizure disorder (because of his brain condition).

Feeding has been a constant struggle. I believe this is for two reasons. The first being that there is a neurological problem which cause the baby to become "unorginized". This means their brain is not functioning properly and they can't read the signals so they can't suck. My son usually get frustrated an crys. You really need to be seeing a physical and occupational therapist. I have learned so much. For example, wrapping the baby really tight and holding them tight while feeding helps greatly! Also, using chin support is neccessary at times.

I have a lot more to add, but it is 3:50 a.m. I need sleep. I'll comment more later.