Porencephalic Cyst and Eating Issues

[krketler]

Hi everyone. I'm new to BrainTalk and I'm in need of some help. My son, Austin, was born with a Porencephalic Cyst due to a stroke in utero, Hydrocephalus with VP shunt, CMV, Cerebral Palsy, Microcephaly, etc.

Austin is having major eating issues. He is going to be one on April 28th and he is the size of a 5 month old. The nutritionist is trying to concentrate his formula to see if that will help him grow the next two weeks.

I'm trying to figure out if the growth issue is common with children with Porencephalic Cysts. My son's is fairly large on the top Left Hemisphere of his brain. I'm wondering if his Hypothalamus may have been damaged due to the stroke.

I feel that something big is being missed by the specialists. Does anyone have any suggestions or have experienced the same issue with their child???? Any help would be GREATLY appreciated!!!! Thank you in advance!!

[alizesmom]

Is Austin's problem related to poor feeding or does he eat well and is not growing?
Karen

[krketler]

Austin is not interested in eating. He has no real desire to eat unless he is starving. He refuses food often and consumes mostly formula.

The nutritionist has recently taught me how to concentrate his formula to get him 24 calories per ounce instead of 20 calories. He weighs in tomorrow, so hopefully he gained some weight, but he's not growing in length at all.

What I have read about Porencephalic Cysts and Microcephaly is that those conditions can cause dwarfism and small stature.

Does anyone have children that are very small due to Porencephalic cysts??

[LIZARD]

My good friend, Gina, had a large porencephalic cyst. She didn't have eating issues (though wasn't anywhere near as overweight as some of us :rolleyes: ), but I'd investigate the possibility of hypothalamus/pituitary involvement. The hypothalamus controls things like appetite. I have simple partial seizures, and my hypothalamus is involved. I have almost no appetite for about 2-3 days after they stop.


LIZARD :)

[krketler]

Thank you so much for the quick replay. I have thought about the Hypothalamus and the Neurologist doesn't want to do an MRI until 16 months. She explained that the babies brain is like mush until then and only around 16 months can you really see the different parts of the brain with a MRI. I tried to push her for an earlier one because the Endocrinologist wanted to know if he has his entire pituitary gland, but the Neurologist said the Endocrinoligist would have to order it.

I'm so worried about him and I feel that there is a "window" we may miss in correcting this issues, if possible.

Thanks for letting me vent. I hope you and others may have some more insight on this issue. I've been searching the internet for a correlation between his medical conditions and eating issues but have not had much luck.

Thanks again!!!! Kim

[LIZARD]

Hey, Kim. :)

I'm glad I could help. I just wish answering a question like that didn't lead to 20 more. :rolleyes: That's what has always bugged me about my partials. Now I know the hypothalamus is a big part of the problem, but I can't do anything about it, and so I'm still stuck with nausea, lack of appetite, fever, and general "whippedness." Thank God they're just a few times a year (usually season change), and I'm sure they're due to birth injury from high forceps, but it doesn't change much after 42 years. :( :o I no longer think I'm a freak, but I still have to "just deal."

LIZARD :)