Something is up with Megan's legs

Megan had a rough night last night.  She woke up and kept trying to go back to sleep and it looked like she would be almost asleep and then she would throw herself and cry for 3 or 4 minutes and then try again.  She did this for 1.5 hours while I was watching her and then Will took over and it was another 2.5 hours before she finally fell asleep; and then she woke up early, very early so she got about 7 hours of sleep maybe.  It was so sad to see her trying so hard to go back to sleep and not be able to help her.  We really need to figure out what is causing her issues this time so we can help her.

I had decided I was keeping her home because of the sleep thing and then when I went to get her it went downhill from there.  Last night we were playing in the backyard and Megan was struggling to walk in the grass; she used to struggle in the grass but on Sunday had been everywhere like a champ never once needing assistance.  We figured she was just tired and didn't think about it again.   This morning when I got her out of bed she stood but was leaning back on me completely.  I tried to get her to stand up on her own and she couldn't; she was very unsteady.  By the time breakfast was over she couldn't keep her legs straight at all - her knees just stayed bent and she would fall down when trying to stand or walk.

What I initially thought might be some sort of fluid in her ears causing balance issues quickly became WAY more.  Megan couldn't stand, she couldn't walk, she couldn't use her legs to climb up onto the couch or my lap.  After some research Will said to give her the l-carnitine again - I was planning on giving her both of her supplements again during lunch but immediately gave her the l-carnitine.

The other thing that was obvious was that her legs were bothering her - maybe in pain, or aching or weak or something because she kept hitting them.  I rubbed them a few times when she would let me and that seemed to help a little.  About 1.5 hours after giving her the l-carnitine she stopped hitting her legs but no other symptoms went away.

She was sitting in my lap on the couch and tried to get down and as soon as her feet hit the floor she would collapse under her own weight and the frightened look on her face was horrible.  She didn't understand what was going on - I just kept telling her that we would fix it - we would figure it out and her legs would be okay again.

The other thing we did was start her on the protein enzyme - this goes along with the research but hopefully it will help as well.

As of right now (she is in the bath) she still cannot walk on her own.  She can take 2-3 steps with me holding her hips tightly and taking most of her weight and twice has done it with me holding both of her hands.  She did stand up at the couch and take a couple of steps holding onto it as well.  We are still waiting to hear back from the neurologist (obviously not happening tonight). Her other doctors all feel that based on what I described he is the best one to help.

Based on everything Will read this is reversible, just not sure how many doses of supplements it will take to get her there.

Sadly I got to hear Sam say "Mommy, Megan's legs not working".  I told him they were very tired and he said he would do a good job being quiet so they could rest.  :-(  Love that boy's heart.

NOTES: restarted l-carnitine and iron and 1/2 AFP enzyme with dinner.

This has definitely enlightened us that her body is in desperate need of the supplements and we can't just stop them like other people can.