I hope someone can help me. I have a 9 month old son who had a VP shunt placed when he was 2 months. He had no indications of hydrocephalous except that one day he stopped tracking and two days later he was sundowning. Thankfully, I live in MD and he was taken to Johns Hopkins for the surgery. Unfortuately, I cannot seem to get a straight anwser out of anyone. I have no idea how severe his problem is or what “classification” it falls under. I was simply told by the neurosurgeon that he had dws, but then the resident said it was dwm! I asked and they told me it was the same thing, just different medical terms. So, I went along with that. Ever since then, my son shows no “classic” signs he needs his shunt adjusted. He eats fine, sleeps fine, is on stage developmentally, but his soft spot bulges for more than 24 hours. Than I have to take him to the ER where we wait a minimum of eight hours for them to adjust it. The doctors always look at me like I have three heads when I tell them he hasnt been throwing up or cranking or refusing food but that I know he needs an adjustment. This tends to happen about every three months and I just wanted to know if anyone else has gone through this. Is it because he is growing and producing more csf? or am I just a crazy mom? The doctors are never forthcoming and I end up to frustrated to ask the right questions to get the anwsers I need. Please help and or share our experiences with me so I don’t think I am so crazy.
Thanks, Rebecca
My DD w/DW is almost 22, so we’ve been where you are at. Let me start at the beginning of your questions:
-
DWS/DWM - they really don’t know, especially if your son is otherwise normal. It doesn’t matter.
-
Going to ER - you need a neurologist also. Neurosurgeons cut - that’s all they are interested in. A neurologist maintains everything else. Is there a study of DW going on in your area or is there a doctor that specializes in it? This is your best bet - it took us about 15 years to find one, but we are not all that close to major hospitals.
-
No matter what they tell you, EVERYONE’S signs are different when there is a blockage. You know what your son’s signs are, and yes, sometimes you will misread them and be wrong. That’s the way it is. Our dd’s doesn’t show on CT scans - something about ventricles. Almost killed her learning that little fact.
-
Shunts clog because of positioning (some areas are harder to shunt) and because cerebral fluid isn’t just liquid. Apparently, it has little bits of ‘gunk’ in it once in a while.
-
Find a neurologist, preferably one who specials in DW and work with him on what type of shunt would be best for your son. The tubing will have to be replaced periodically for growth, etc. and the shunt may need replacement, also. The more you know, the better choice you can make.
Our DD shows no signs of DWS, normal intelligence, normal everything, except for severe headaches. Shunts CAN cause this, but not always.
Any way I can help, just write.