Jack is still limping on the left side. It is worse depending on activity and how much walking he does. He has had a few really bad nights. He has been crying with leg pain. He asks for his legs to be rubbed and usually falls back to sleep. His reflux has been bothering him more lately also.
I talked with his specialist in Cleveland. He gave a list of things he wanted done. I told the specialist here and he ordered the labs. He refereed us to an orthopedic surgeon for the x-rays and said we would come see him in 2 weeks. We would after having the results from the labs and the ortho appointment done go from there with referrals. He made the prescription changes that the Doctor from Cleveland wanted also.
We went Thursday for Jacks 3 year old check up. His regular pediatrician doesn't deal much with the disease stuff. He said if we need any help with referrals let him know. Jack was due for a shot which he did.
Then we went Friday to the orthopedic surgeon. She talked with us and examined Jack. She had him walk up and down the hall to watch him. She said she has never seen a gate or walking pattern such as his. She was also concerned about the limping. I talked with her about the left side issue and the new limping. I also talked with her about these periods were he cant walk at all and the difference with the episodes. She did x-rays after the exam. The x-rays showed that YES there is something going on with Jacks left side. Jacks hip is not sitting in the socket correctly. His knees and ankles look good. She said the reason his knees look bad when he walks is due to the hip. He doesn't need and she doesn't want to do a surgery at this point. Regarding him complaining of the foot she said maybe there was a hair line fracture or just a sprain. She said regarding the episodes were he cant walk at all that she agrees with the other doctors that it is nerve related. She is going to refer him out to a rehabilitation specialist regarding the nerve problems and not being able to walk at all. She ordered a bunch of labs. He had 10 viales drawn. She said depending on how they came back it wouldn't hurt to refer him to a rheumatologist also. Regarding the hip she is going to see him every 4 month to monitor the hip and legs. We will watch it and he is a definite person who will have hip issues. Surgery we will do when it is totally necessary due to his age. She said if he is not totally done limping in two weeks to call her and she will order a MRI which he will be put under for. She also said that the left side hip issue is definitely due to the mitochondrial disease. She wrote that on the report as the diagnosis and cause of the hip problem. So more appointments coming up. We will see the specialist here in a week and a half. At that time he will do more of the referrals. They are all in agreement that both issues are mitochondrial disease related.
Just pray that Jack starts feeling better. We pray this down turn is temporary and he will bounce back and feel better for a while. We realize that down turns will happen many times in Jacks life. It is hard because him doing better is still having issues. This down turn has been very scary. You cant help but to think of the future and sometimes be upset. We have to just look at Jack and his attitude and it helps us. Jack has a great spirit and attitude no matter how he feels. He inspires many people around him. How can I complain or be down with him so happy. Even limping around he is happy. When he is in pain in crying that is the hardest. He still in the middle of the night, in pain asking for his legs to be rubbed is so sweet." Mommy please rub my legs" he says as the tears run down his face. I rub his legs and with his eyes closed, tears on his cheeks he says in the silence "mommy I love you"! What a little gem he is!
Monday, June 18, 2007
Monday, June 11, 2007
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.
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.
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