More MJ News....

[MommytoMJM]

Today was MJ's Neuro appt...

When she was born she had this funky patch of hair on her lower back
and a huge indent at the base of her spine....I asked them about
Spina Bifida, but they and every other doctor blew me off....so today
while he was looking at her scoliosis (did I mention that she has
that already?) he sees the patch and dent and says...well, that looks
just like Spina Bifida. ARGH!!!!! for 5 years I have been asking
doctors to assess that..... So now she needs to go for an Xray, so we
have to knock her out for that....

I didn't tell anyone because I wasn't sure yet, but I aksed the doc
about these new things she is having that look like seizures...and
they are. 3 new types to be specific...he is taking her Trileptal up
*a lot* now we'll have to carry it with us all the time since she has
to have it 3x a day. The Keppra had awful side effects, so at least
he isn't making her stay on that.

She also most likely has Auditory Processing Disorder......

Also, he talked to me more about her PMG, it turns out that she also
has another type of brain damage there, it's called Pachgyria. More
research to do.

Because of her CP her left leg is now a lot shorter than the right,
we are getting close to needing special shoes with lifts......we're
also concerned because she is now experiencing cramps in BOTH feet
and her left hand, it used to be only her left foot...She apparently
has complex tone, because in some places she's low tone and others
high tone...

The scoliosis could have profound effects when she reaches puberty

 

[Forevryoung]

I don't know what else to say.

 

[HappyDznyCamper]

 

[Karalynn]

Thoughts and prayers with you girls!!

 

[Michigan]

On the bright side that is spina bifida occulta which a large population has and doesn't even know it. Rarely there are bowel and bladder issues and those are only caused when the spinal cord teathers which it may never do. If it does a release of the cord is done and the issues go away.

 

[SueM in MN]

On the bright side that is spina bifida occulta which a large population has and doesn't even know it. Rarely there are bowel and bladder issues and those are only caused when the spinal cord teathers which it may never do. If it does a release of the cord is done and the issues go away.

That's what I was thinking too.

Hopefully everything will get sorted out and MJ will end with what she needs to do well. My DD has mixed cerebral palsy (low tone in the upper trunk and neck, high tone in the arms, legs and hips). She had a lot of muscle cramps when she was in a growth spurt; bones grow first and then the tendons and muscles grow to keep up. That causes a lot of stretching of the muscles before they grow - which makes muscle cramps. Hopefully, that is part of what is happening.

 

[WaltzingMatilda]

&

 

[dclfun]

I have a good friend who's daughter had the same thing...patch of hair that was SB occulta. They didn't know about it until her daughter was about 6-7 and started to grow taller. Then she had the cramping also and kept complaining that her "legs hurt". A cord release was done and she's just fine...now a teenager that you'd never know had such an issue. Also, I know you mentioned before that MJ spent alot of time in her chair due to needing to be on her feeding pump. They have the smaller pumps that fit in a backpack and can be laid down, etc. Don't know if she'd wear a backpack but it could be carried, thus allowing her to be ambulatory more often. Since she can walk, it seems a shame to confine her to a chair unless she's needing a rest. It also would seem best for her to have the exercise at her young age. Just a thought....---Kathy

 

[Joanna71985]

I am so sorry Bonny.