Neuro-motor planning dysfunction issues

[Guest guest]

Today Zipporrah had PT after missing last week due to the virus she is

battling. The therapist agreed that Zipporrah's worse than when she saw her

last and after watching her and discussing some issues with me she feels

that Zipporrah is dealing with neuro-motor planning problems. Does anyone

deal with this issue???

Several examples are:

1. She forgets over and over how to roll over-she will just lay on the

floor/bed and complain for several minutes not being able to roll over until

something clicks and she remembers how.

2. After her 4th month right-sided stroke she forgot how to reach out for

toys-she would see the toys fling her arms about but couldn't reach for

them; if she bumped into them she could grab them, but not purposely reach

out for them (This issue has resolved thankfully.)

3. When she first wakes up she seems to forget how to sit up and flops over

for a while or doesn't seem to know how to sit up for a while.

4. In the morning she seems to have much more difficulty in pulling to a

stand or crawling and then as the day progresses she gets better until after

a nap and the process starts again.

5. The newest issue since last week: She cannot move her right leg forward

to take a step-she will lift her foot some but not bring it to a full

forward swing. It will stop at most next to the left foot but never forward

more than the left one. This of course is affecting her ability to learn

how to walk. This issue combined with the sensory issues causing her to

grip the floor with her toes and walk on her knuckles (top of foot) are

causing her real trouble with being able to support her weight and get

around.

6. She fluxuates throughout the day with her abilities. The more she does

something the better she gets but then if she takes a break, it is as if she

has to begin again to relearn it.

Zipporrah has many sensory issues that have been affected and now we

believe that many motor planning issues are also being affected. Asenath

tends to be hit over and over in the same areas of her body and now

Zipporrah seems to be affected in the same places over and over again,

except that the girls are hit in different places from each other. Asenath

tends to be hit in her muscles mostly, while Zipporrah seems to get hit

mostly in her swallowing, sensory issues, and motor planning areas. I am

worried how Zipporrah will progress over the years if she continues to

follow this pattern.

Darla: mommy to

Asenath (4) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomy, SID, dev. delays, asthma, cyclic vomiting...

Zipporrah (11 mon.) Mito, strokes, SID, GERD, 100% G-tube fed, asthma, trach

issues, disautonomy, hypo & hypertonicity, migraines, possible seizures,

dumping syndrome, iron deficiency...

Luke (16), Leah (14), Rachael (12), Isaac (10), Tirzah (8), Kezia (3), &

Marquis (2) (some with Mito symptoms)

[Guest guest]

Darla, What you described sounds like apraxia/dyspraxia, which is the absence or loss of the ability to plan motor movements. I have just learned about this, it is one of the most prominent features of Rett Syndrome and is caused by immature brain function (but can also be caused by brain damage in other conditions). I think the cerebellum and basal ganglia are invoved in this situation, as they are responsible for complex motor planning.

Chelsea started reaching for toys, rolling to the side, and propping to sit at 4-6mos, but her developement never went beyond that and she stopped doing all of those things in the following years. While she has recently made some great gains in what she can do, she has great difficulty with complex motor movments and manipulating objects at midline. She is unable to transition herself from one position to another, and has fine/gross motor skills like an infant. This is also why she has breathing apnea while awake and is unable to say words. HTH, and praying for a speedy recovery for both your girls=)

e, Chelsea's mom, Atypical RS (FKA nonspecific mito)