I saw a post while searching the web by Ohio Mom 87 or something on here? Anyway my daughter is almost 14 months old and is having an MRI done in the next few weeks because her CT scan showed that there was a decreased amount of "white matter" in the brain and that atrophy cannot be excluded. She has gross motor delays and the neurologist who we just met last week says she is "globally delayed" although I beg to differ. I just want to know if anyone has been down this road w/ developmental delays, MRI's of the BRAIN, if anyone knows anything about brain atrophy or ventriculomegaly?
My daughter has also been diagnosed with "benign external hydrocephalus and vetriculomegaly.
But she is not expected to need a shunt.
These things are not "common" things you hear about w/ kids where we live so I feel so isolated and worried and the doctors seem to think this is all over our heads to explain it but I'd love to know what is going on. Any info anyone can give me I'd so greatly appreciate. Thank you so very much!
Kelly aka "Sadie 07".
hi kelly,
sorry i cant give you any advice but i do hope you get some answers...i also has hydrocephalus as a baby - born at 24 weeks and im ok...i know bout the worry you must be going through..mum did with me.
good luck huni
take care rach xxx
Wow, your story sounds so similar to mine. I just posted a new thread yesterday about my son. He turns two this week and was diagnosed with cerebral palsy at the start of this year. It took a long time for me to get answers about my sons condition, and he was also classified at the start as globally delayed as well. When i was pregnant i had a scan at 33 weeks and the doctor said she noticed that he had some enlarged water pockets (i can't remember what the medical term was) at the base of his brain and she got another doctor to come in and have a look. Of course i was worried, but the doctor said to me 'Oh it should be fine and it is more common in the sex of the baby you're having'. So once i had my son and everything was fine at the beginning and he was breastfeeding, i never gave it another thought. But at about three months i noticed his arms and legs seemed so stiff and he couldn't hold his neck up very well. I brought this up with the MCH nurse and she referred me to a children's physio. I thought maybe i was just being paranoid, but when the physio checked out my son she said he was going to need a lot of thearapy. My son had his first MRI when he was about 11 months old. The neurologist said the results showed that he had a static white matter insult and it was not a degenerative process. He said this can occur in normal kids too, so another sort of dead end! From about five months to fifteen months my son continued with his physio and it that time he learned to hold his head well, use his hands to shake rattles and press buttons etc, and roll. From the age of sixteen months my son has been attending an early intervention centre where he is with other kids who have all different ranges of learning difficulties. The centre has a physio and speech pathologist as well as specialist teachers. He's been doing really well there and can now sit and commando crawl and can stand holding onto something while he's wearing his orthotics. My son had his second MRI when he was 20 months and the results came back showing some thinning of white matter at the back of the brain, but this hadn't changed since his last MRI and so it doesn't look like he has a degenerative condition. He has also had many blood tests and urine tests that have all come back normal. All the doctors etc just say 'it's one of those things' which is really annoying, but what can they do. I just have to keep persisting with physio and helping my son with his development. I hoped my story has helped a bit, and post back if i can help with anything else. I find lots of hugs and play time with my son helps, just finding the best out of any situation.
I'm new and worried please help
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