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  1. LittlebitsMommy

    I am so confused. Please help me Understand!! Posted report

    I am so confused and really don't know what to think right now. I am happy for the results if they are right but confused at the sametime. Ko was weaned off the steroids. He took his last dose of the Entocort on the 20th of November. Dr wanted him weaned off steroids before he had a MRE. We had...
  2. LittlebitsMommy

    Lets talk poop

    I know this is the right place to come to talk about poop lol. As you know Ko went and had the MRE today and it wasn't successful at all. He has had a MRE in the past but right after he had it done they decided to do a colonoscopy. So they started the clean out process. Well tonight he cant...
  3. LittlebitsMommy

    Momma bears patients are being pushed UPDATED

    Ko is here having Mre. We have never been to this specialty clinic before. Dr.P wanted this done Asap so this place could get us in the soonest. It seems Moms and patients know nothing here. They had to start an iv. Couldnt listen to us that Ko usually has to have iv team start it. He only has...
  4. LittlebitsMommy

    Havent been here in a while

    Just wanted to pop in and say hi to everyone and give a little update on Kota. I am not sure where to start. Today is 2 weeks since his last dose of Entocort. This is the longest he has been off steroids in 22 months. We went last week to see Crohn's specialist. Let me just say I still totally...
  5. LittlebitsMommy

    Update on Kota

    I am sorry I havent been able to come here and update like I want to. It seems everything is always so crazy lol. Last year was a bad year all around. Not only did we make it through crohns dx with several hospital stays, broken wrist, malformation on the brain, horrible learning delays...
  6. LittlebitsMommy

    Anyone heard of Pro Graf?

    We took Ko back today for his checkup with GI. Let me just add we love him more with each visit:thumright: Kotas heart rate was good 93. Way down from being close to 200. All his labs look good. His weight was up even more. He has gained 40 pounds since Feb 2012. Dr said he thought alot of it...
  7. LittlebitsMommy

    Update on Kota

    I know its been a while since I have been on and gave an update. I am not even sure the last time I came and what the last update was. I believe last update was that we had just went and seen new doctor and we totally loved him. Well that part is still true. A couple of weeks after we seen new...
  8. LittlebitsMommy

    Update on Kota and Byopsy

    Update on Koko..I will start by saying we really like his new doctor. He sits and explains everything to you and if you have questions he doesnt act like you are stupid. He for sure doesnt say I dont know like last GI did. We got results from byopies.Kotas Crohns is in the Terminal Ileum all...
  9. LittlebitsMommy

    We go to see Dr tomorrow

    Kota goes back to see the GI tomorrow. We will talk about byopsy reports and what kind of treatment needs to be done. He has been off all medicine besides Nexium and Amitriptyline for 3 weeks. The last week he has felt better than he has since he was DX in February. He ever rode his dirtbike...
  10. LittlebitsMommy

    Ko was in hospital all last week

    I know I havent posted in quite sometime, but I thought it was time to give an update. We started seeing the new GI (the one thats apart of Inprove care now) We love him. You can tell he loves his job and helping kids with Crohns or UC is his number 1 priority. We learned more from him then we...
  11. LittlebitsMommy

    What is Vitamin A

    What does it mean to be high on Vitamin A? How do you get high on Vitamin A? Just got result of last weeks labs. I was told by GI yes the old Gi ordered these. I was told everything was normal once again. I got results and everything isnt normal.It shows his vitamin A is high should be between...
  12. LittlebitsMommy

    Final Appointment with Gi Sorry its Long

    I was going to update last night when I got home but I was so mad. We were told to wait Kotas weekly labs until after he seen Gi yesterday in case he wanted to add more on top of weekly ones and magnesuim. Gi was seeing both boys yesterday Sky at 3:15 and Ko at 3:30. So we get there about 3. I...
  13. LittlebitsMommy

    So glad we are going to be seeing New Gi

    Ugh I am so glad that we are going to be seeing a New Gi. Hope I am able to contain myself tomorrow when we see the old GI. Everything that I have read in Kotas records are not right or what he told us. First we were told that it was a very mild case of crohns. I read in records its severe...
  14. LittlebitsMommy

    Questions about 6mp and Metabolite test TMPT

    Well Gi called me back today. The labs from Monday are back. Said his regular weekly labs came back normal. But the TMPT was abnormal again. This is the second time. The forst time we cut back to 25mg. Well now we are cutting back to 12.5mg I am not sure what all this test for. When it came...
  15. LittlebitsMommy

    Wondering about Magnesium levels

    Is Magnesium usually checked when labs are done? If so do they have an intial or will it say magnesium? I maybe fishing and be totally loosing my mind because I so badly want to figure this out with Kota. But I have been reading about magnesium today. So any input you have would be totally...
  16. LittlebitsMommy

    Wanted to pop in and say Hi and give a bit of an update on Kota

    Hi everyone. I hope you and your littleones are all doing well. I have learned with Crohns you maybe doing well one minute but in the drop of a hat you may not being doing well the next minute. Kota has his good moments and his not so good. He is at least laughing more. So thats great. I love...
  17. LittlebitsMommy

    Fever question

    Fever question Update after trip to ER Updated AGAIN :( Kota hasnt real good today. He cried and whined alot in his sleep last night and when I would ask what was wrong he would say his tummy hurt real bad but never really woke completely up. The only thing that he did different or ate diffrent...
  18. LittlebitsMommy

    I really dont think Poor Kota will ever catch a break!

    Kota with his new cast. God I love this boy so much
  19. LittlebitsMommy

    I really dont think Poor Kota will ever catch a break!

    They are still trying to adjust Kotas medicine. Still no Pentasa.. His tummy seems to fell better being off the Pentasa but it hasn't really made a difference in his heart rate :( I thought for sure it would. Still gotta figure this out. But I am sure we will. We have been trying to get ready...
  20. LittlebitsMommy

    Kotas Meds have been changed.. Whats your inputs :)

    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...
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