UPDATE

Since my last update Jack has had three more episodes of not being able to walk at all. I don't always say much on the blog regarding the day to day stuff. Jack has been doing worse in many areas lately. Fatiguing much easier, his endurance level is much lower, more tremors and more instability.

On Friday he had a different episode. He was unable to walk, but it was just one leg or side that was the problem. These other episodes he cant walk at all and if you try to make him stand up he looks like spaghetti legs and both legs go out and he cant walk at all. This on Friday was different. It was a Weight baring issue, like he had injured his left leg. His left side is his weaker side anyway. He was not able to walk and was complaining his foot or big toe hurt. The other episodes of not walking he is usually in tears saying his legs hurt. This was quite different. I put a call into the specialist here and he said to bring him to the pediatrician to check it out. The specialist here also had me put a call into the specialist in Cleveland to try to talk with him. Jack also had pink eye and was not responding to the medication he was given three days before. The pediatrician said it was perplexing and gave him new eye drops for the eyes. He said to put heat on the leg/foot and give him ibuprofen. If he wasn't better in 24 hours bring him to the ER. He wasn't better so we ended up in the ER. They x-rayed his foot and foot only. They did blood work because these kids can get blood and bone infections. They said everything in the blood looked well. They said if the leg/foot wasn't better in 48 hours to return. They did not know what was wrong with the leg/foot. There was no swelling or bruising.

Yesterday afternoon he started walking on it, but he was and is still limping. He is favoring the left leg big time. He is still having some pain and not getting around well. He is definitely on a slower mode with it. We have in the past and now been concerned with the left knee and hip but have been blown off when it comes up.

Finally today the specialist from Cleveland called. I explained the six episodes and what has been going on since Friday. He gave me a list of things he wants done. He wants the specialist here to refer Jack to a pediatric rheumatologist. He wants x-rays done of both hips, knee's, and ankles for comparison. He gave me a long list of blood test. If those blood tests come back normal then he said it was nerve related and gave me the name of a medication he wants Jack on. He wants his carnitine medication upped to 3 x a day. I also have to find out how much Q10 is in his vitamin cocktail. He wants that upped to 3 x a day and the milligrams upped.

He said they have been testing Jack for some other genetic diseases. The muscle has been sent out for testing also. The tests he has gotten back has been negative. He said in there rarer case they see mitochondrial disease is the primary disease. In those cases the kids are more like Jack were cognitively and developmentally they are fine. They are being effected nerve wise and muscle wise. He said these kids have down turns. He thinks that is what Jack is experiencing. Down turns can last 3, 6, 12 months and then all at once they start to improve. This could happen many times in Jack s life. He said this is what he would assume is happening. He said we just hope he comes out of it, and nothing else is going on . He said they usually do, but these periods may recur at any time.

We go in August to see him and at that time we will have the x-rays and other tests and hopefully have seen the rheumatologist. He will evaluate everything then and hopefully he will have more tests back. He also said we will talk at that time about other testing and things to do for Jack. He still would like some tests we talked about done , but due to cost and my insurance we haven't been able to do them.

The specialist here in Syracuse office is closed on Monday. I will call and talk with him tomorrow and hopefully get everything going. He will hopefully push to get things moving to make sure this is just a down turn and mitochondrial related and not something else. You never know and that is what is hard. We could go back to the ER to have all these things done, but at this time I prefer to go this route. I think it is best. I don't want to put Jack in the hospital if not absolutely necessary.

We will just wait and see how he does, if he gets worse and starts not walking at all the ER might be the only choice. He is walking right now , not well and is limping but we will see.

There is no cure and no prognosis so they just done know. That is exactly what the specialist from Cleveland said. They go by other cases they have seen and by what we are going through. It is a learning experience for everyone. Thank God the specialist we are seeing, he is the best of the best in the US! I thank God for that.

It is hard to not think negative or about wheel chairs for periods of time in the future. I am trying not to think like that. God holds the future and holds us all in his hands. Me stewing and thinking about things doesn't help anyone. It Especially doesn't help Jack. He needs me, all of me to be happy and optimistic.

Please keep Jack in your prayers. Pray we get answers if something else is going on. We also pray if this is just one of many down turns in Jack's life he gets through it with out much pain or frustration.