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It seems like its just a waiting game with everything. He has been up and around more today. Which means he will probably sleep all day tomorrow. I have asked him if his tummy feels any different since we have cut back on the 6mp and cut out the Pentasa. He says no it doesnt feel any different...

I want to say welcome to the forum. There are so many wonderful people here. I am sorry I am not of any help. My son was dx with Crohns also in Feb of this year. I know what you are going through. I would love for Kota to feel better and be able to run and play like he is use to doing. You and...

Poor Little guy and Poor Mommy :( You are in my thoughts and prayers.

Well we finally got okay from Nephro to start Allopurinol. I asked GI about this medicine because I was told it went through the kidneys. Gi said not to give it until I got okay from Nephro since Ko does have kidney disease. So we will start that today. We are still off of the Pentasa. Heart...

Just got this online Mesalamine can cause a severe reaction that is easily confused with a flare-up of ulcerative colitis. Symptoms include abdominal pain, cramping and bloody diarrhea. Fever, headache and rash also might occur. Uncommon Side Effects Many other side effects are possible...

We are back to weekly labs? Only went one week without it being weekly that was this week but had them twice last week :( Is there a certain lab test they should be doing weekly? Said we would have TMPT done again in 6 weeks. Thanks

Kotas Meds have been changed.. Whats your inputs :)updated Okay here goes. The last few weeks his ALT and AST have been above normal. They rechecked his TMPT enzymes and and we got the results back today. Not good said it showed he wasnt able to metabolize the 6mp. Afraid of it attacking his...

Thanks everyone.I could not believe that she called and told me all this over the phone. So much for a nice lunch with Ko and friend. After that I couldnt eat and wasnt sure if I was mad, sad or wanting to throw up. You are all right I do know Kota better than anyone else. I know he can do...

My daddy always told me God will never put more on you than you can handle. Well God my shoulders and getting real heavy and I dont feel to strong right now. I pray everyday for God to give me the strength that I need to make it through everything. I also ask him to guide me in the direction...

Dont have any advice but wanted to say Welcome to the board. You and your daughtre are in my thoughts

I am sorry you are going through this with your son. I know how hard it is. My DS is 12 and also on 6mp. Liver counts have been high the last couple of times. Waiting on labs we had done yesterday. Thinking of you and your little guy

Okay thats exactly what I was thinking. They finally got him in to pain management yesterday and I wish we would have never went :ymad: First off they were getting his medical history. Why when they are looking at it on the computer. I let them know of his kidney disease of Hypercalcuira. I...

Okay I have a question Update added I have a question and I am afraid it is going to sound really stupid but here goes. Can you have a HIGH heart rate because you are not active? I have never heard that before but I am not sure. But was told that yesterday about Kota. I was told his heart rate...

I am sorry she is isnt feeling any better. I also hate to see other kids go through all this pain but I am also glad others here are able to understand what we are going through. Because alot of times it seems no one understands or even wants to understand. Ko has lots of headaches also. He...

:thumright::ybiggrin:Yes we sure do

I dont have alot of advice. I do know that the steriods will cause joint aches. Ko took his last does of steriods yesterday. He had started on them the 17th of Feb and had 5 days through IV and then oral. I dont want to say he is any worse but its hard to really say he is any better either. He...

A friend told me she heard about this book on the view. I was wondering if anyone has read it No guts, no glory

Ko took his last does of steriods this morning :). He has been feeling a little better the last few days. Well at least until he eats. If he didnt have to eat he would be okay. When he doesnt eat he says he feels like he needs to poop but cant. Then when he does he has diarrhea bad. Went and...

Thank you Dusty that sounds great :)

I never eat much of anything but can never seem to loose weight :( Since Ko has been sick I have managed to gain about 15 pounds and let me just say I didnt need to gain anything. I am hoping once he feels better we can start walking and being more active. HE doesnt feel like doing alot and he...