9 months on Apriso

Yesterday we went to Liam's GI doctor for a check up. It has been 9 months since Liam started taking Apriso. Lots of things have changed. We no longer have to break the capsule apart and get him to swallow the medicine in one big gulp with juice. He has learned how to swallow the pills. He has also not had any huge flare ups. He has had the occasional stomach pains followed with a day or two of diarrhea but then he gets back to normal. We are learning that certain foods will cause him great pain. He cannot eat any french fries from restaurants. Its not the potato that is the problem but the oil they fry it in. I often will bring fruit and some veggies with us when we go out to eat. We order him a protein like hamburger without the bun, grilled chicken, ribs, or steak to go along with the food I brought.

He has developed a dry cough. Its going on 4 months, but she said we need to just ride it out. I asked if it could be a side effect from the Apriso. She at first said " no I do not believe its from the medicine". But then later said "well I suppose anything can happen from taking a medicine everyday, but its a low percentage." I wonder if it could be a sign of Acid Reflux, but the benefits out way the cough. It also could just be something new he is dealing with since people with Autoimmune diseases often deal with more than just the initial disease itself. So for now we will ride it out and hope his body fights it.

She was very happy with his weight gain and growth. She said he has finally caught up from all the weight he loss over the years. He has also had a huge growth spurt. This says that he is absorbing nutrients and is becoming healthy. Fingers cross this just continues.

We are going to run a few labs and make sure everything looks good. Our goal is for continual good health and flare up free. If we can maintain he will go in for a scope during the Summer of 2014. This made Mike and I very happy. We have a follow up appointment in 3-4 months as long as he continues to do well on the Apriso. So far this mama is happy that her boy is doing so well.

Apriso

So today we are starting a new medicine. Its called Apriso. He is to take two capsules a day. You may be wondering how is a 5 year old going to swallow two capsules like that. Well he isn't. I have to break them open and dump the little granules on a spoon and pour a little amount of juice on the spoon. He then takes the spoonful and chases it with water to prevent biting the granules. The granules need to stay intact because they are slow release and if he chews on them he will ruin the time release thus not allowing the medication to lubricate his colon. Wish us luck I am sure it will take some practice. Maybe one day he will learn how to swallow or they will make a kids version. 

The reason for starting this medication is because Liam has been on Prednisone since September 3rd, 2012. He started on 20 mg, and although we have gotten him down to 10 mg, we just can't seem to wean him off. He is getting wicked headaches from being on it for so long, along with other side effects. After talking with his doctor we agreed to give this a try. Many adults that I have talked to said it worked well for them. They were able to go into remission while on it. Its a medicine that you stay on even if in remission. Like his doctor said "we start this then we need to continue even if all symptoms go away." At this point I feel like its a good choice, because prednisone is so dangerous for little guys to be on. The one thing that worries me about Apriso is there is very little information on how it affects children short term and long term. Adults who take this are already developed and can chance taking it. I just pray this medicine does not affect Liam's growth, weight gain, puberty, eye sight etc. Lets hope it does what its suppose to do and allows us to wean him completely off the prednisone. My goal is January 1st 2013 for Liam to be prednisone free. I think that would be the best gift to start the new year.  I would love to hear from anyone and everyone who has been on this medication.