Any hydro moms out there??

amother

Azure

Wed, Jul 03 2019, 1:51 am

amother [ OP ] wrote:

Cant PM cuz your amother. but did u have delays going back as a child? Went to a regular school. Marriage?
Also how many revisions since?

Right, I went anonymous 😂. I walked by age 2 and normally (they thought I would only ever waddle). My particular hydrocephalus was secondary to dandy walker malformation which can present as a syndrome (I mistakenly went through childhood saying I had the syndrome). This couldn’t have been further from the truth. I was always went to regular school and even took advanced and AP courses and was in National Honour society in high school so no it definitely didn’t effect me cognitively and for that I’m considered a nes. I did always receive supplementary special ed gym classes and in regular gym class had a note to be careful during contact sports in gym class. My family always treated me like breakable glass. Both of these things proved detrimental in many ways. It caused many phobias and self esteem problems which held me back from developing good coordination to my fullest ability and playing normal childhood games and later from getting my drivers license (my parents kept making take more and more drivers lessons and again treated me “special”). There is literally no physical reason I shouldn’t have a drivers license but the phobias they ingrained in me held me back. Ok I’m going off on a lot of tangents. I haven’t needed a revision since age 10 and my shunt is not programmable so never ever needs to be touched. As far as shidduchim and marriage I had a bigger issues then the hydrocephalus. I’m a BT out if towner so that already made things difficult at least for me. I was dating for 10 years before I was set up with my husband who is an angel. In my mid to late 20s I dated a guy who was the first to really make an issue of this and he was kind of a jerk about it but I’m actually forever grateful. It forced me to ask medical questions like how would this effect me ability to get pregnant, have a healthy and safe pregnancy and and healthy and safe delivery. If the child in question is a girl I could tell you more about that. But here is the thing, if you look at me and I don’t tell you all these things, you would never know. I don’t know if people on this sight know me in real life but I’m finished with people treating me “special” or worse like a pariah such as children when I was younger or that one guy I dated. Sooo I posted anonymously. Sorry for the Megillah, just felt there were details that could be relevant and helpful.

amother

Azure

Thu, Jul 04 2019, 4:57 am

You’re not alone and you got this. Im sorry about the malfunction cuz that can be very scary. My family (mom, dad, bubbie obm) let their fear get the better of them. As much as you can instill confidence in him, play ball and jump rope and when he’s a bit bigger biking and skating. Really encourage coordination building activities. And of course give him space to enjoy any other activities he enjoys. That can only build confidence. If you can, I would encourage the therapists in school to do tumbling activities with him. I know they warn about blows to the head, but they mean heavy blows which btw are dangerous for anybody. I was scared when I was a kid, I thought falling would knock my shunt out of place. It important for kids to fall and get back up. Of course always make his teachers aware to be careful and his condition, but I would seriously not make a big deal about it to your child himself or to other children he plays with. IMO this was a mistake that was made with me. Enjoy your little nes. He really is at the end of the day

amother

Azure

Tue, Jul 09 2019, 4:52 am

Nobody else jumped in? I forgot a couple things in my above post. Im sure you go in for yearly follow up. When I was a child this included CT scan on head, X-ray of torso and a neurological exam. I think MRIs are more common now and this is what I have had since age 10. I do credit my parents with trying to make these visits somewhat fun. Find out if you haven’t already when to expect a revision due to growth. With infant shunt placement they usually pack in a lot of extra tubing so it will grow with the child. I’m sure you already know what abnormal signs or symptoms to look for. In my case at age 9.5 years I started to have migraines in my sleep, double vision and was just generally abnormally irritable. The insurance gave my parents a run around because they didn’t want to cover the surgery at the original location we had used for years. Instead they sent us to every local neuro surgeon, eye drs etc all who told my parents I was “making it up”. BH my parents are fighters and by Purim that year I had my revision in hospital of choice covered by the insurance. Always remember, you are child’s best advocate medical or otherwise.

creditcards

Thu, Jul 18 2019, 12:50 am

My daughter was born with congenial hydrocephalus. She was shunted at birth.
She had a revision at 5 months old because the whole shunt area blew up and filled up with water. Now she is 6 years and her shunt is OK. She is autistic so I wouldn't know if she has any migraines or double vision. She wouldn't tell me that. She doesn't know that she has a shunt and plays normally like she would without it. The Neurosurgeon told me I should just treat her regular but I should look out for symptoms of shunt failure.