update

What appeared to be a stomach bug possibly was not. I am not sure at this point. If it was a little bug it aggravated whatever else stomach issues Jack is having. He has been gaging , dry heaving, throwing up, and/or diarrhea. He is complaining every day of stomach pain and having one or more, or all of the things going on I just stated. Needless to say we are very frustrated.

He had a period Saturday night/Sunday morning (1:00 AM or so) were he woke up crying with leg pain. This is the worse I had ever seen him. He was hysterically crying and saying they hurt. We gave him pain medication and I rubbed his legs continuously for 45 minutes to an hour before he stopped crying and fell back a sleep. My hand was numb by the time he finally fell a sleep. He had to go to the bathroom when he first woke up with the leg pain and when we put him on the ground he did the spaghetti legs and went straight to the floor. He was unable to stand or walk. It must have been due to the muscle or nerve pain. When he got up in the morning he could walk and bare weight. He was very unsteady and you could tell favoring his legs. He would not walk much at all till about 10 AM.

Tonight he started with his gaging and dry heaving. He had seemed clear for the last few days from a cold and he started with a runny nose from out of know were. He started coughing and has a temp of 99.9 so hopefully nothing else is brewing.

We had a appointment with Jack's specialist here this past week. This appointment was during the high light of what has continuously been going on, but aggravated this past week (or should I say is at a all time high this week ). This was before the leg issue last night.
I went over with the specialist everything that had been going on. I updated him on are Cleveland trip and the ENT visit.
As far as the ENT wanting to take out the adenoids and possible tonsils Jacks specialist here said we should go ahead with the surgery. He understands Jack is at a higher risk for some complications, but thinks for snoring purposes alone we should do the surgery. He said as most anyone knows snoring strains on many muscle's of the body. One main one being the heart that gets strained. He said in Jacks case due to the disease and the fact that his muscles are being impacted greatly he said Jack doesn't need any added stress on his muscles. He also said his heart checks out fine at this time and we shouldn't put any added stress on it or any other muscles. He said if it helps with colds that would be good, but the snoring alone and the fact that Jack doesn't need any added stress on his muscle is enough of a reason to do it. I Called and they had already scheduled him for this month to have it done. I rescheduled it due to other appointments Jack has this month. I told them to schedule something for the end of November beginning of December so I should be getting a conformation in the mail. I also went over the Cleveland trip and medication increases with the doctor.
Then the big thing was the stomach issues. I told him Jack was not any better if anything worse. He had asked me questions that I couldn't answer regarding the stomach biopsy. He is requesting a fax of the report form the gastric doctor and the biopsy results. Kids with mitochondrial disease can have stomach problems. There are specific things he is going to look for. I told him I had talked that morning with the gastric doctors nurse. I told her he had not responded to the treatment and was getting worse. Basically the doctor relayed through her that Jack has chronic gastritis and had/has some type of bacteria in the stomach. He said it could be due to many of his different issues and thinks it is a combination. They mentioned the ENT issues, reflux, his choking and swallowing stuff ect.. What I got was he really didn't know why Jack is getting worse and didn't know what to tell me. The nurse told me that if the specialist called him he would get farther then I or her would. I told Jacks specialist here that something is not settling with me correctly. This has been progressing and has been a growing issue since this past March. He agreed with me and said he wants to see the biopsy. Depending on what he saw we could possibly try some steroid treatments. That is if he saw one of the things he was thinking on the biopsy. If not and Jack is staying the same or getting worse then he would refer us to a Pediatric GI Doctor who knows a lot and deals a lot with Jacks disease. He is located in Boston, Massachusetts.
His specialist here said that Jacks sedimentation levels are always high and that he has many area's of inflammation . He said this he can link to the disease. The gastritis and its symptoms are not fitting.
He also wants me to get some labs done ASAP and try some drug changes soon. He wants to get the labs together for Jacks upcoming rhuemotologist appointment. We might get some possible help with the leg area with that appointment.

I am going to call him tomorrow and see if he has gotten to look at the biopsy results and what he thinks. I am also going to tell him how bad Jack has been since we saw him last Tuesday. He had said once he looks at the biopsy we would schedule the Boston appointment if needed because it could possibly take a while to get in.
I also want to tell him about the leg issue due to noticing some things that during these leg issues they have told me to look for. I will see tomorrow what he says.

I would just ask for prayer for Jacks doctors this week. Pray that God gives them wisdom in dealing with all of this. Help each doctor he comes in contact with to see the seriousness of all this and try there best to get to the bottom of some of this. His specialist here is excellent. He is the main one pointing us in directions and helping us make decisions. Pray for wisdom and understanding for him with all his patience. I pray that God blesses him.

Please pray we get to the bottom of these stomach problems. Please pray that Jack's cold gets better and stays just a cold and nothing more.

We would just like to again thank everyone for there prayers. Knowing that people are praying for us and Jack gives us hope and peace.