Thursday, October 4, 2012

6 Months Remission

Well we had a great run for a while. Six months remission, I will take it any day. Liam was able to gain a healthy amount of weight keeping him at 50%.  His height went from 50% to 75% which we were thrilled about. We not only saw those improvements, but we saw him gaining muscle which helped him become more agile, coordinated and strong. Liam got three colds during this time and was able to fight off two of the three. It was amazing. The last cold he got, turned into bronchitis and he was put on Zithromax. His little gut surprised us and handled it great. He did not get a flare up like he normally does from antibiotics which Mike and I were thrilled about. I was so happy his UC was holding its own. 

Liam started transitional kindergarten this August at H.O. He is so happy to be at school with sissy. They love seeing each other in between recesses. He is thriving and loving Nikki his teacher. About three weeks into school Liam did start to have loose stools. I kept an eye on him, making sure we did not deviate from healthy eating. I thought maybe I could get him through with the diet, but no such luck. After two weeks I realized he was getting worse. I started him on 5 mg of prednisone, because usually a tiny dose can get him cleared up. Unfortunately it did not work and he got even worse. After talking with his doctor we bumped him up to 10 mg hoping that would do the trick and again he got worse. We bumped him up to 20 mg and did stool samples, blood work to see what was going on. Liam was such a trooper. He cried when they put the band around his arm and was very nervous. I asked him if he wanted me to cover his eyes. He said "yes". As soon as I did that I started talking in his ear telling him to take slow deep breaths. I did not know if it would work, but he went for it. Slowly he started to calm down and breathe through the whole blood test. We were so proud of him. Even the nurse taking his blood could not stop telling him how brave he was. She said "Liam I wish all kids were as brave as you". I think he was proud of himself. 
A week went by and the doctor called to tell me everything came back fine. I told her we had a new symptom that morning. Liam woke up at 5 am screaming in pain. He cried for about 45 minutes until he threw up about a cup of mucus. We did not know what to make of it. Liam looked at me and said I all better mom and curled up in my arms and fell back to sleep.  She suggested we start him on Flagyl and see if we can get him over the hump. She could not explain to me why Flagyl would work, nor why he threw up,which upset me a little. I hate giving my kids medicines without knowing why. 
We started Flagyl and within 24 hours Liam started having completely normal bowel movements. I am so happy for him, but worry we might be back to square one once he is off of it. By that time though we will be seeing his doctor for a check up, so we will go from there. She said he would have to be scoped for that visit. Not sure how that is going to go. When he got scoped last time he was put to sleep. This time she is doing it in her clinic. I hope he stays calm and we don't have to pin down a screaming child. I don't handle him screaming very well. 

I don't know how other parents give their kids medicine that is in pill form but here is how we do it:
I crushed the prednisone and now Flagyl with a Pestle and mortar. I then pour the medicine on a spoon. Then I pour a few drops of Orange Juice or Pineapple Juice and have him take the spoon full. He then chases it with a shot of juice. We try to make a game of it and see how fast he can do it. He is so brave and never gives me any grief. If you only knew what these medicines taste like, they are awful. I would love to know how others get their kids to take it, just in case he decides one day to refuse taking it. 

Some side effects he is having from prednisone are:
Moon face
Extremely hungry
At times does not want to be touched
Joint Pain in knees
Hairy back

1 comment:

  1. This sounds just miserable! I'm so sorry!!!! Thanks for sharing your medicine tricks!!!