Re: tremors/Darla

[Guest guest]

Darla, I will try to answer your ?'s as thouroughly as I can. Chelsea's tremor is due to her low tone and the fact that it is caused by CNS dysfunction. I have seen older adults with similar tremors, that I think was related to Parkinson's disease. While Chelsea's is quite noticable at times, mostly when she is sitting upright with no back support, it is not uncontrollable. It is definatly worse after a cluster of seizures or if she is down awhile with an illness. I recently added biotin to her cocktail and *I think* I have seen some improvement in this area. As far as I can remember, I started noticing her left limbs weakening around 2 yrs of age. At first, it was not known why, but an EEG revealed she had epilepsy, with most of the activity originating from the right side of her brain. I recently read the actual EEG report and Chelsea has diffuse slowing of brain waves in the right posterior region of the brain with multiple spikes (tendencies for the neurons to misfire). Around the time she turned 3, she became very ill twice with aspiration pneu. and ended up with the gtube. After she recovered, it was apparent she lost all use of her left arm and most of her leg (mind you, there was not much to lose in the first place). Her left hand became stuck in the palm up position, due to muscle tightening. Chelsea is also a combo of hypo and hypertonia. She started developing tightness around the same time as her epilepsy was dx'd and subsequent illnesses. It is partially due to seizures and partially due to nonuse of her muscles. She cannot bear weight on her legs on her own, so her heel chords and hamstrings have gotten pretty tight (interestingly, her lft heel chord is tighter than the rt, but the rt hamstring is tighter than the lft). The rest of her body is pretty tight, particularly her left shoulder and arm. As of yet, she has not lost any range of motion, which is awesome, considering she will be 7 soon. I have done infant massage with her almost daily, since she was about 1 1/2 -2 yrs. I really feel this has helped a ton in retaining her range. I also learned stretching techniques to help keep her tightest muscles as limber as possible. I try to stretch her legs daily unless she is too sick or spends a good amount of time in her stander frame. We also have had a wonderful OT who has stuck by Chelsea thru thick and thin and has done everthing possible to help Chelsea. She is very innovative and has taught me a lot. Ask Porrah's OT about Kineseo Tape. It is a special therapy tape made to go on the skin and to stimulate muscle movement. We have used this off and on and I have definatly seen it work! With a lot of diligence, CHelsea is slowly gaining function of her left limbs. While her hand is still stuck palm up, she is lifting it, waving it, moving the fingers (instead of just fisting), and getting the hand to her mouth.( Oh, her OT made special braces for her hands at nite, and they are DEFINATLY haelping). I almost passed out last week when I saw her PLAYING with a toy with her left hand! She can now reach it up a bit against gravity and whack at an animal on her VTech toys! On her back, she can now hold her knees up and feet flat on the floor for a good period of time, instead of just flopping into the frog leg position.

I hope this is answering your ?'s. I would be more than happy to give more info. I was going to describe Chelsea's seizures a bit, but I hear her "singing", so it is time to get her up from her nap! Let me knoe if you are interested. I have been praying for your whole family, it seems that you are all going thru quite a difficult time. But I can tell you are a strong woman and a great mom, don't doubt yourself!

e, Chlesea's mom(nonspecific mito)