Special Needs
tiffany0727
member
Mother of An Angel - 11/12/09
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External Hydrocephalus
tiffany0727
member
Hello! My son had a MRI that determined he has external hydrocephalus. He has developmental delays in gross motor skills (he is not walking and his balance is very poor), speech, and fine motor skills. He also has hypotonia. His ankles might also need braces because they turn in towards each other, which also effects his balance. His balance and tone are bad enough that his legs shake when he stands on them. He does get PT once a week, right now. I have so many questions. Will he need a helmet to protect his brain, due to the increase risk of brain bleeds that comes with external hydro? When will the developmental delays catch up to "normal" range? Will he always be behind once the fluid drains to normal levels? I was wondering if anyone had any similar stories to share or words of comfort/advice?? Thanks so much!
Mother of An Angel - 11/12/09
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Re: External Hydrocephalus
I think we have spoke before? But it's been awhile, so maybe I will be more of a help this time. My son has benign extra axial fluid collection of infancy, or the perdiatric nuerosurgeon has wrote benign macrocrania. His head produces cranial fluid faster than his brain absorbes it. I don't know if this is similar to external hydrocephalus, but my quick google research said they were similar. Maybe diffferent doctors use different terminalogy? Anywho- my DS has a gross motor delay (he is 15 months currently and started crawling a month ago with no signs on walking), as well as a speech delay (he evaluated at a 4 month old level expressively). He also has hypotonia.
My son does not wear a helmet and a helmet was never mentioned to us for future use. We are closely monitered by a pediatric neurosurgeon and are aware off the signs that something may be wrong neuroglogically, (vomiting, lethargy, irritability, seizures). On top of that, when something has been going on and we have had to go to the pediatrician, they always evaluate cautiously and am always seen, even for minor concerns.
I was told that this condition is one he will grow out of, typically around the 12 month range the head growth begins to level out. My sons head growth is now almost completely hovering over the growth chart. He is fifteen months old and has an appr. 53 cm size head.
Unfortunately, no one can tell us when our children will catch up. We are doing everything we can as parents possible. Therapy is in place and we work with our son everyday. The rest is out of our hands.
The only other advice I could possibly give would be seeing a geneticist? We were referred and are currently testing for a multitude of genetic conditions. Does your son have any other anomolies? My son had a undecended testicle (repaired now) and a supernumerary nipple (a third nipple). Just food for thought??
I am so bad at the advice thing- I guess I would just say take it a day at a time? And if that is too much take it an hour at a time. Things will work out and if you ever need to talk to something, or just complain about how they make head holes way to small, feel free to message me!
Sorry for typos- nap time is ending soon and typing fast!
Thanks for the reply!
It does sound a lot like what my son has. He has always been behind gross motor wise. Now that he's gotten older, his other delays are more noticeable. He is finally saying "mama" and "dada" appropriately and has started saying "car." PT has been amazing. We have seen a lot of improvement in him in just a few weeks. We had to get him basketball shoes and that has done wonders. He is still really shaky on his legs when he stands, so I'm afraid we will have to brace him. He is smart and a good problem solver and super social. Huge flirt. 
We have had testing on his genes done, and they also ruled out CP and MD. Thankfully, all his testing is normal. It's just the external hydro and hypotonia it seems. He doesn't have anything else going on, everything seems find. He does have the bigger forehead and back of the head, but I'm sure he will grow into it. The nero dr did tell us the condition he has is genetic from the father's side. My husband's head size is on the bigger in. We could tell on ultrasound when I was pregnant that he had his head shape. I know that sounds strange, but his dad's head shape is pretty unique. My husband had gross motor delays as a baby, but they weren't as bad as our son's. He didn't walk until he was 13 or 14 months. Our son is also 18 months. My husband is starting to think that he maybe did have what our son has since his fine motor and gross motor skills are not the strongest. He has never been good at sports and his balance isn't that good, but he is super smart. I think therapy has been the best thing we decided on. So I recommend it to anyone who's child is delayed in gross motor. We're still not walking and probably are not close to walking yet, but we are taking it one day at a time.
Good luck with everything!!! Keep me posted! BTW, I do think we've have posted on topics together before.
Mother of An Angel - 11/12/09