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Sep 24, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
Keira Update
Keira is scheduled for a neurologist consult in November. That's the soonest we could get in to see one. The pedi is a little worried about her gross motor delays. They say she's "floppy" and hypotonic? (Low muscle tone I guess) She sees a neurosurgeon for her head issue but the pedi said the surgeon only treats brain abnormalities and not the whole nervous system. So I wondered if any of you have had to go this route or for those of you who's kids are hypotonic-did they say anything about what can cause that? He said the neurologist might want do run some metabolic blood work on Keira. For what? I have no idea. I'm really tired of seeing so many specialists and I know you all know how that feels! On the bright side-her head has not grown in three months so that means the ventricles in her brain might be maturing and working right finally. So it looks like we've avoided a shunt surgery but I'll know for sure in a couple weeks.
Sep 24, 2008
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
perhaps they are checking for metabolic disease, but not sure.

http://www.perkinelmergenetics.com/

Has anyone done Urine organic acids?

Sep 24, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
I can't believe it is taking that long to get in to see someone. We got in within a week. Maybe you should call around. I hear you on the specialists my friend. Gastroenterologist/Urologist/Neurologist/Cardiologist/Opthamalogist/Physical Therapist/ OY... the ists!

coy is hypertonic. That is the opposite of hypotonic. He has tight muscles. The neurologists diagnose these things. coy had to have a brain scan and then the guy manipulated his muscles and asked questions about development. We then went to PT from there.

have you done any research to see if hypotonic is common with hydrocephalus?

Not sure about the metabolic disorder..
Sep 25, 2008
katiesmommy
Tracey, mom to Katie. Diagnosed with reflux at 3 weeks and put on Zantac. At 8 months old she was removed from Zantac as it was giving her migraines, currently on Prevacid. Switched to Elecare since she is not gaining weight; trialing solids after being off for a month. Geneticist said reason she isn't gaining weight is she is stubborn. Upcoming appts.: Neurologist for developmental delay and EGD scheduled for September. She is one funny baby!
Our neurology and developmental delay appts. are in November too and they were scheduled in late August! Katie couldn't sit up until 8 months and only recently could push herself up into a sitting position. She still has to be strapped into shopping carts otherwise she falls over and she can't "sit" on my hip very well. How is Keira "floppy" and what are some of her delays? We may be in the same boat.
Sep 25, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
Keira can sit up but hasn't really figured out how to keep herself from falling over. She won't bear much weight on her legs-it's getting better than it was but she's regressing. So w/ that she won't pull to a stand. She also points her feet downward and tightens them which also causes issues with bearing weight on her feet. She isn't crawling but she can scoot faster than anyone I know-LOL. She's still sorta floppy w/ her head but I chalk that up to having a larger than average head. So....we'll see. She's had three CT scans for this fluid on the brain thing before. The radiologist said she needed an MRI but the neuroSURGEON said it wasn't needed. So the pedi thinks the neurologist WILL want it done which I hate to have her sedated but we need to know what is going on. :( Engin117-We're in metro atlanta-where are you? :) I wonder if we might be seeing the same doctors or are you going out of state for those appointments? This neuro we're to see use to work at Hopkins.
Sep 25, 2008
sadie
Our 1 year old daughter has silent reflux, hypotonia as well as benign external hydrocephalus. We are currently weaning onto whole milk (we'll see if it works) and she is also on Prevacid 15mg per day.
Ooops! Got ya confused w/ Katiesmommy! Sorry! Well still-it's nice to have a Georgia family on here too! :)
Check with your
doctor first!