by hipmummyk » Sat Mar 01, 2008 3:58 pm
Hi all
I am new to the pediatrics side of things, but have been on ASAP for a couple of months now. I have CM (and not sure what else yet- I am going to TCI in a couple of weeks). I have some questions about one of my kids and need some help with what direction to take with this.
Ok, some background info first: My son will be 11 at the end of the month. He was born at 42 weeks by emergency c-section (according to the doc he was presenting face-first because he had a big lump on his forehead that went away fairly quickly, and my pelvic opening was too small).
This child had incredible head control from birth, and his gross motor skills developed rapidly. he was a colicky infant and hated being held sideways and hated being laid on his back or stomach. He was happiest when he was upright so he could look around. He became quite a headbanger and would frequently headbang against my chest or face, and eventually against the wall or the refrigerator. He was quite healthy, apart from the usual kiddie runny nose.
He had night terrors, or so we thought, because he would wake up screaming at night. This lasted for a number of years. He always seemed agitated by something. He also wet the bed until he was in 2nd grade, and he still "dribbles" on occasion and will have a wet spot the size of a nickel, sometimes a quarter, on the front of his underpants.
He has always been quite hyper, but when he isn't hyper he can be quite lethargic. He was diagnosed with PDD-NOS at the end of second grade, having been dx'ed with ADHD the year before.
He sleeps in a fetal position most of the time (makes me wonder about tethered cord).
When he was in 2nd grade he was at a friend's house and he ran to the bathroom to pee, but he ended up wetting his pants because he said he couldn't remember what he was supposed to do when he got to the toilet. A few months later, he spilled milk all over the floor and he said "sometimes when I get the shakes, my hands don't feel like they can hold things very well". I questioned him about this because he had never mentioned it before and it freaked me out. He told me that it had happened a few times. I took him to the pediatrician, who sent him for an EEG to check for seizures, but that came back normal. He mentioned that he had headaches sometimes, too. I found a neurologist and the neuro had him do a 24 hour EEG and that came back normal also. The neurologist diagnosed him with migraines.
Fast-forward to last year: the neuro had an MRI done because my son mentioned that he still had some problems with feeling funny around strobe lights (he had been bowling at one of those places where they have black lights and strobes). We also noticed that if he played video games, he would get really aggressive and out of sorts, so we stopped letting him do that (we didn't have any at home, but he would play them at friend's houses). The neuro told us that the MRI didn't show anything, but that he is photosensitive and has migraines. We went back to the neuro in November and the neuro "released" him from his care, saying that it appeared everything was fine so he saw no need to continue to see him.
I had just found out about my chiari, so I asked the neuro if his MRI showed chiari and he gave it a quick glance (I never saw it) and he said "no".
Well, now I am really beginning to wonder about my son. He is having more behavioral issues/aggression/anger and he is more lethargic at times. He has also discovered that he can contort his body into all sorts of weird positions (EDS perhaps? I suspect I have it) and I never knew he could do that because he has always been so uptight. He can't sit in a chair well (always pulls his knees up to his chin when he sits) and he would prefer to lie down. Just last night he asked me and my husband about sperm (because he is hitting puberty) and if it is sticky. We asked him why, and he said that he thought he was peeing it because when he pees, it is sticky. Hubby asked him questions and it doesn't sound like he was masturbating. I googled sticky urine and came up with info on the wrong diagnosis website that mentioned it could be connected to chiari (something about increased intracranial pressure causing this- I don't remember exactly what it said right now).
So, I want to take him to the pediatrician and ask him to check for chiari, but I don't know how to go about being sure that everything gets checked out. I am stressed enough as it is with all the stuff I am finding out about my own CM, and am busy trying to get organized for my trip to NY to TCI. The kids will be staying at home with my mom. I don't know that we can afford another trip back up there for my son, especially just based on my suspicion.
What exactly should I say to the pediatrician to get him to check everything out? Or should I bypass him and contact Dr.Oakes (a pediatric chiari NS who is here in my city, but I don't know if he is any good)? I am annoyed by the NL that I used to take my son to...it is nearly impossible to get in to see him, and I feel as if my concerns were brushed aside, so I don't want to go back and see him.
Help! Does any of this with my son sound familiar to anyone?
Katie
CM1/Classical vs Hypermobilty Type EDS/many messed up discs in my back/no surgery for any of this...yet