Withdrawals and the attacks

Jude did not have an easy night yesterday. He had a very bad autonomic attack about 6pm. Mike's poor mom was here and she was very distressed over it. We got him calmed down and when we put him to bed I noticed his temp was elevated. It was 99.8 axillary which is nothing to be to concerned about but I still took a mental note. About 2:30am Jude woke me up moaning and when I touched his arm he was burning up. His axillary temp was 102.8 which means Jude was actually almost 104. I put a call into the on call doctor to see is that constituted an emergency. She said it did sound like Jude was going through Baclofen withdrawal and advised to bump the oral Baclofen up and keep it in him around the clock. She said it can be hard to gage when and how much Baclofen to give him. In addition to the Baclofen I gave him some Motrin to relieve pain and bring the fever down. This worked but his breathing becomes so erratic after the oral Baclofen because his respiratory gets so relaxed. I kept getting up and repositioning him so he would breathe easier.

Today Jude was spastic but the good news is his attacks looked........better. He still had them but he didn't get red in the face, his neck wasn't hyper extended, and he wasn't sweating. However the nurse still treated him around the clock with Baclofen and Valium due to his tone, heart rate, and pain.

Tonight Jude just started wailing and it was so sad. Jude is always a happy little boy. We believe this is either the Baclofen withdrawal or a uti/kindey issue. It could also be a combination of the two. His urine output is not the best and it's a bit dark. I increased his fluids again. My fear is all the medications are becoming to taxing on his kidneys.

Watching your child go through withdrawals from a drug is terrible. I just feel awful for him. The pump is programmed to go down again tomorrow but I am wondering if it already went down today which created his symptoms. The doctor seemed a bit unsure when he was programming it. I hope that's not the case because that means on Monday it will go right back to what it was when it was flowing. We are going to set our alarms and stay on top of the baclofen. It really worries me that this can cause organ failure and other serious issues. Hopefully Jude can get through this.