Update on Kota and Byopsy

[LittlebitsMommy]

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 other spots looked good. We are starting him on Entocort today. He will be on a higher dose of that for 2 months and then we will start to wean over 2 more months. Hoping that this will put him into remission. He will have to go in 8 weeks for another upper GI. After he is weaned off the Entocort he will be put on Methotrexate to try and keep him in remission. I have only heard bad things about the Methotrexate. I know the dose will be low but the 6mp was a low dose and still made his body toxic and started to attack his bone marrow. If this doesnt work then we will go to Remicade. If anyone has experience with Methotrexate please let me know. I know God is watching over us.

Nurse today did kind of piss me off but its okay. Kotas heart rate was lower then usual when they checked it today and blood presure was up. I asked Dr at end of visit if we could recheck. Because my machine at home was reading completely different then theirs was. He said yes off course. We started talking again and both forgot until we went to checkout. Of course then I remembered and said something to checkout lady. She was very nice and said she would get the nurse. Nurse comes out with an attitude. She says there is no reason to recheck his blood pressure or heart rate. Nurse says what are you not happy with what it said the first time. I said its not that I am not happy with it at all. Because I would be happy with a heart rate thats 102 if I thought it was really right. Rechecked and of course it wasnt right it was higher. Nurse says well maybe itshigher becasue he has been up walking.

His doctor has a camp every summer for kids with Crohns,and UC. He told Ko that he would love to see him there next year. Kota didnt like that idea much. Guess I have a year to try and convince him to go. Right now he doesnt want to go very far away from me in case he starts to feel bad. It doesnt matter to him that there are doctors and nurses at this camp.
We will just have to take it one day at a time. He has felt pretty good today. I love to see him smiling and feeling like doing things.

I hope everyone had a great day.

 

[my little penguin]

Glad you have a plan in place.
DS did methotrexate for 8 weeks . He had fatigue the day after the shot. It didn't really work for us but he has a lot of EIMs sO maybe that's why.
Good luck.

 

[Johnnysmom]

Keep pushing Momma, no matter how cranky those nurses are! I can tell you feel there is something more going on with Kota's heart rate and these meds. Praying you find some answers. I am glad you like the new G.I. he sounds like a keeper!!!

 

[Tesscorm]

Glad you had some luck with this GI! Sending wishes that the entocort and, eventually, metho will get Kota feeling well for a long time. And, if he's feeling well, he may want to get to that camp next summer!

It's always hard to accept these meds! :ghug: Have no experience with it but it will possibly be Stephen's next step as well.

 

[S mom]

Hope everything goes will with your treatment plan.
I just wanted to say something positive about Methotrexate (maybe it will offset some of the negatives you have heard ). My son has been on it for a year now (started just after diagnosis last fall) and so far (fingers crossed), it has been successful in maintaining remission (EN put him into remission). He injects himself once a week and usually says it's no big deal... no great pain or anything. As long as he takes his folic acid regularly, he has no side effects to speak of (he lost hair initially but it grew back after a few months)... no fatigue, no nausea. So, even though it's a really scary drug, it has worked so far for him... he says he now remembers what it is like to feel 'normal'. I hope you have the same result!!

 

[AZMOM]

I understand your frustration. After a successful couple of years on 6MP, Claire's liver decided to revolt as well. She's being doing well overall on methotrexate since June of last year (2011). Her only symptom is a little tired and occasional headache the day following the injection. We do it on the weekend for that reason. Also, she's 9 and injects herself.....has been for about 6 months now.

I hope it works well for y'all!

J.

 

[kimmidwife]

Glad the new GI is better. sorry about the nurse may be she was having a bad day. Caitlyn did great on the methotrexate for almost two years. She had no side effects to speak of. Keep us posted on how he is doing!

 

[jmckinley]

Yay for the great new GI! Gotta love a Dr willing to listen and answer questions! I hope things continue to go well.

Ryan is on methotrexate injections and remicade now. Ryan is generally tired the day after the shot. We give it on Saturday, he sleeps about 3 hours Sunday afternoon, then all's good. He has some hair loss also, but the kid's got enough for 2 people, so it really hasn't been an issue. He has finally achieved some 'normal' bloodwork with the combination, so that's the great part. Hate the meds, love the results....

 

[LittlebitsMommy]

Thanks everyone. Its great to hear positive things about Methotrexate. I was so scared when he mentioned that medication. All I had heard was bad things. ANd I am a little scared of any medicine after taking 6mp.

Another good day. He has been laughing and playing all day. Thanks everyone for always being so encouraging.

 

[Farmwife]

I hope all goes well for your little man.
Hugs to you both.:hug:

 

[DustyKat]

Thanks for the update LbM. :hug:

I so hope the Entocort does put your boy into remission and the Methotrexate carries on from there, bless him.

Good luck! and sending you loads and loads of love, luck and well wishes.

Dusty. :heart: