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XP: hydrocephalus

jdiaz79jdiaz79
in Preemies
I also posted this on the SN board... Hello! My son just received a "preliminary" diagnosis of hydrocephalus. I say "preliminary" b/c we have only had 2 u/s. He was born at 35.5 / 36 weeks due to pre-e/HELLP. U/s show mild dilation of ventricles with 9-10 mls of fluid; no focal abnormality / mass. Is there anyone out there dealing with this? I am overwhelmed to say the least. We have had many, many issues to date, but this is the scariest dx yet...
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Re: XP: hydrocephalus

  • pmkmppmkmp
    Yes, my dd had hydrocephalus and had a shunt system placed shortly after she was born.  It seemed so crazy to me and really stressed me out, but now that I know much more about it, I realize just how common this procedure is.  Here we are almost a year later and it rarely crosses my mind.  Feel free to ask me any questions that you may have.  I'm an open book!
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  • jdiaz79jdiaz79
    Thanks so much for responding. I do have some questions...How quickly after making the dx did your dd have surgery? Did they do a lot of imaging before deciding on surgery? Dr. wants to do another cranial u/s, then a MRI on ds. I worry that the longer we wait for surgery, the more damage could be done...
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  • pmkmppmkmp
    DD was VERY small when she was born, so they wanted to wait until she was at a certain weight and had enough fat before they performed surgery.  I think she had to be like 4lbs or so.  DD wasn't born with the hydrocephalus - it's a result of a brain bleed that caused some blockage. So it came on over time. Does the neurologist/neurosurgeon you're seeing specialize in pediatrics?  I would highly suggest you go with a specialized neurologist/neurosurgeon.  If they are specialized, then I would trust their judgment on whether to wait or not.  If it's just a regular doctor, then I would be looking for other opinions - fast.
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  • jdiaz79jdiaz79
    I just heard from our neonatologist, who consulted with the reg. pedi. on this one. They believe it is most likely benign external hydrocephalus of infancy. They want to follow up w/another u/s in 3 weeks to see how much additional fluid is buildng up. That seems like such a long wait to me...
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  • pmkmppmkmp
    I really don't feel comfortable saying one way or the other if 3 weeks is too long to wait.  Is you son showing any signs that the fluid pressure is affecting him... downward gazing eyes, loss of appetite, tightening of the muscles, sleepy, etc.?  I highly encourage you to get a neurologist involved, preferably one that specializes in pediatrics.  Our neonatologist may have let things go too long if the neurologist hadn't been involved.
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  • lemen99lemen99 member
    We were warned that DS could get it due to his brain bleed, but, thankfully he did not.  ((HUGS)) and prayers to you and your baby.  What a stressful and scary thing to deal with!
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  • jdiaz79jdiaz79
    Thank you both. I am following up with a neurologist tomorrow and we will take it from there.
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  • sarahkatherine8sarahkatherine8

    Sorry I am late in seeing this post! My DS was diagnosed shortly after his 4 month appointment. It was suspected due to a sudden and rapid increase in his head circumference (5 centimeters in 2 months). He was never diagnosed with IVH at birth, but we now know a small one was the cause - it just took a long time to suddenly cause a problem. And it happened pretty quick once it did. We had an u/s done on a Tuesday and on a Thursday we met with a neurosurgeon and DS had an MRI done and was officially diagnosed with hydrocephalus. In the meantime his head circ had grown another 2 centimeters in ONE WEEK. SO he had surgery and his shunt placed the next day!!

    I am not trying to scare you because for us it really did happen all of a sudden and we had no idea what s/s we should have been looking for that would indicate an increase in intracranial pressure. But since you know that this is a possibility, you have someone following your LO and looking out for it and that is a really good thing. We were VERY lucky that it happened to be caught at just the right time, when our DS's head was still able to expand to adjust for the swelling and no brain damage was done. Just so so lucky.

    If you have any questions please PM me or page me here. Like signs & symptoms to watch for increased intracranial pressure. My DH and I didn't know it then, but DS was having headaches and other symptoms and we had no idea. I hope everything turns out ok and it resolves on it's own! GL to you and your LO :) 

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