I hope this is the appropriate place for me to post
My son was just diagnosed with hydrocephalus and will need to have a shunt placed. He will be having an MRI later in the week (just did an ultrasound today), and then we will establish some sort of plan. He has no signs/symptoms other than a rapid growth in head circumference. That was the only reason the pedi ordered the test. We are also meeting with pedi neurosurgeon this week.
Does anybody have a DC with this and any experience to share? I am a wreck but realize we are very lucky that it was caught so early and developmentally he is ahead for his adjusted age and showing no other signs. It is still hard not to feel a lot of sadness, anger, guilt, and tons of worry/anxiety.
I hope this was the appropriate place to post this...I am really scared and looking for some reassurance.
Re: I hope this is the appropriate place for me to post
Welcome. Very appropriate place to turn... what will the shunt do (for lack of knowledge in this)? How old is DS? What % of growth made the doctor worry?
I always worried about my DD - not because there was anything developmentally wrong with her - but because her head went OFF the charts around 6 mo to 15 mo. Then at 18 mo, it went back down to 98%. The doc measured all the heads in our family and I own a head in the 97%, so doc wasn't worried.
I hope the MRI and appointment will give you some reassurance! I know a family who has a child maybe 10 yrs old who was born with the same condition (i guess she was born with it). She had surgery when she was little and is doing great now, no complications.
Thank you your post is so reassuring, especially about the little girl. The shunt will literally shunt the excess cerebral spinal fluid away from the brain and (most likely) into the stomach-ish area, if my googling is correct. DS is 4 months and went from about 30% head to 90% I believe? Seems small in centimeters...from 40cm to 44. But I guess that is a huge leap. It was worrisome because of how fast it happened from the 2 month to 4 month appointments.
They say that since we caught it under 5-6 months his fontanels haven't sealed and his head size will likely go to a normal shape and size when the shunt is placed. But we have a long road ahead of us since some kids unfortunately need frequent shunt revisions. Just praying our DS isn't one of them.
My son had double VP shunts because he developed hydrocephalus after a brain tumor clogged his ventricles up.
The surgery will seem super crazy to you, but in fact, it actually takes less than an hour and a half and your son will be back to playing and back to normal (probably a whole new, happier normal) within a day or two. My son had to have his shunts replaced at 6 weeks because they got infected, but they've been great since then (last July).
The only suggestion I have is to be sure you have a pediatric neurosurgeon to do the shunts. I know in our area there are only adult neurosurgeons and they are probably capable of doing the surgery, but you want the best of the best when you're operating in the brain!!
Feel free to ask me any questions!
Thank you for the great response! We have an awesome pediatric neurosurgeon. My friend is a nurse and says he is the best in our area, and several of my other nurse friends that work at that hospital say the exact same thing. I think we are very blessed to have been referred to him. He is also very picky about who does the anesthesia and that part makes me nervous too. I really hope the recovery is quick, I hate to see him in pain or seem out of it. I feel like he is worse today than yesterday, his soft spot seems gone and a little out and he acts as though he has a headache (it is hard to tell though). We have our appointment at 9am and they will do scans in the office and then discuss them. I wonder if we will have surgery right away? Guess it depends on the true severity of it, since all we had was an ultrasound before.
I will probably have a ton of questions after tomorrow and I have about 25 written down for our doctor!!
May I be nosy for a second? I see he was early. Did he suffer an IVH at birth?
I ask, because my son had a grade 2-3 IVH and we've been monitoring him for this very reason. So far, we seem to have escaped further medical issues, but I constantly worry about him.
I am so sorry you are going through this. You might want to get this book from your local library if you don't already own it ... they talk in detail about VP shunts and it might help ease your anxiety a bit. Best of luck to you. I can't imagine all the emotions you are dealing with right now!