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-   -   CP, Tethered Cord and other rare things too (https://www.healthboards.com/boards/cerebral-palsy/27651-cp-tethered-cord-other-rare-things-too.html)

Wisecam 05-24-2002 08:05 PM

CP, Tethered Cord and other rare things too
 
My 2 1/2 yr old just had an mri done because he has mild cerebral palsy and was having deterioration in his extremities especially his legs and the neurologist said the report showed a tethered cord. She had not seen the films and had very little information for me. She is referring us to a neurosurgeon (just a general one). But we won't be seen until after the holiday weekend and even then we don't know when. I have been researching this and the best information I found at the neurosurgery.org site. Great information but very scarry. How much time do we have before too much damage has occurred? My son isn't potty trained so we don't know if the bowels or bladder are affected. Should we seek out a pediatric neurosurgeon? Has anyone had this with their child and with CP? He has some other rare medical undiagnosed condition ( his face and neck swell when his body seems stressed..immune system type of stuff, colds, teething, and now this). Has anyone else ever had anything like this? Our visiting nursing (every week) was a NIC nurse for 35 years and never saw anything like the edema. But now this tethered cord thing is supposed to be rare too.
Any information and suggestions would be appreciated.
Thanks from a very worried mom

Ginya 05-29-2002 09:06 PM

Unfortunately I don't have any knowledge about what you have described, but I felt compelled to respond simply for the fact that I am frusterated with the non-responsiveness of folks on this board. I wish it were better(the board) but so far I am unimpressed :( I wish you the best.

Julie

crazycrow 06-01-2002 07:23 PM

I have Cp, had it sense birth. what you decribed about you child sounds alot like what I grow with. My mom told me when I was just a pup that I had trouble walking. This went on for a bit when she took me to the doctor, this was when she found out I had Cp, this was in the late 60's. I have a younger brother 13 mouths younger, my mom said that he was walking before I was. When I was in the early grades of school I had problem controlling my bowels or bladder which made me mess myself a few times. Did I ever pay for that, all the years I was in school I always heard the names that come from messing ones self. The thing that give me the most trouble are my legs. My leg has a servere limp and seems to be getting smaller then my left.I also have epalipsy. If you want to talk to me about any of this you can IM me or email me

crazycrow 06-01-2002 07:32 PM

I posted to this thread and connot found it

crazycrow 06-01-2002 08:16 PM

I have Cp, had it sense birth. what you decribed about you child sounds alot like what I grow with. My mom told me when I was just a pup that I had trouble walking. This went on for a bit when she took me to the doctor, this was when she found out I had Cp, this was in the late 60's. I have a younger brother 13 mouths younger, my mom said that he was walking before I was. When I was in the early grades of school I had problem controlling my bowels or bladder which made me mess myself a few times. Did I ever pay for that, all the years I was in school I always heard the names that come from messing ones self. The thing that give me the most trouble are my legs. My leg has a servere limp and seems to be getting smaller then my left.I also have epalipsy. If you want to talk to me about any of this you can IM me or email meIP: Logged

Wisecam 06-21-2002 02:21 AM

Thanks for those who replied. Son had release surgery on the 6th of June and is recovering use of legs and functioning well. There is all hope that he can regain most if not all of the functioning he lost. The CP really complicates things but he is quite the little trooper.
Thanks,
AMW

jerriel 06-22-2002 06:44 PM

I am replying here as I as well feel this board is not a very active board or should I say responsive, I have seen many questions and many viewings but very few or no replys can anyone tell me the reason for this?? My grandson has CP and this is the only board I can find and I have to say its very disappointing, the other sites here are great but this leaves a lot to be desired, maybe the moderator can answer as to what the problem is here??
Jerri


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