Backing off the Baclofen

This week is almost over and I haven't even updated!

I think it's because I've told the story over and over again so I'm sick of myself telling it at this point, but it is an important update.

Last weekend the pharmacy royally screwed up Christian's meds. This particular pharmacy (where I won't name names but it rhymes with Balbreens) has never given me a problem. Ever. Recently they've gone to a call center system where you aren't actually talking to a pharmacist in the store. It's all an answering service.

I'll try and make this short...my pediatrician called in Christian's prescriptions, it never was entered so no renewed prescriptions for Christian. By the time I figured this out, we had nothing left. We got one emergency prescription for one med but they refused an emergency scrip for the other. It's Baclofen. This is a heavy muscle relaxant. He's been on it since the hospital because of the tightness of his body, also referred to as tone.

After hassle after hassle, three wasted trips to the said store in question, a changed prescription, changing pharmacies, and 36 hours off the drug, we finally got him back on Baclofen.

The part that pissed me off was that the pharmacy in question was so difficult to deal with even knowing the situation. Even knowing my pediatrician called in. With Baclofen you can't go cold turkey because it's addictive. So there could be real withdrawal side effects including seizures. It was getting kind of serious and when I was told the prescription would be ready, I show up, and the pharmacy tech said it would be another 48 hours to compound! I said, "No. You don't understand, he can't go anymore time without a dose." And they really didn't care. They told me my pediatrician could call in another scrip. Just like last time, right? I was done.

I changed pharmacies and was able to get the prescription within 2 hours. Why was that so hard for the other pharmacy?

Anyway, even though the whole situation was frustrating, it was kind of a blessing in disguise. I saw Christian without Baclofen and he was...different. His movements were more deliberate, his neck was stronger, his arms moved more, and he was more present. In other words, not so drugged. But I knew he had to go back on it or there might be serious drawbacks. So we put him on his regular dosage for a few days and now we're reducing it, observing, reducing, observing, until hopefully one day he'll be off.

After this ordeal and doing more research I found that Baclofen actually lowers the threshold for seizures, especially in children with brain injury.

Not everyone will be supportive of this but I really don't care. I know my child. I know what he needs and if he needs more, I'll give him more. If we can do less, that's where we're going. When I told one of my OT's today she looked a little worried but we're not reducing drastically...right now. And we have the blessing of our neuro.

We also had our 3rd cranial sacral appointment today. It was intense for Christian. He cried...hard. But, honestly, it was the weirdest thing. He cried and cried, Dr. Peters must have hit something, and then he stopped. I carried Christian out to the car where he almost fell asleep in my arms. He slept a good while and when he woke up, he was...again, different. He was bending his knees with no effort, he was looking around instead of staring off to the right. It was like something gave way in him. Something switched on. I don't know if it was the cranial sacral, the reduction of Baclofen, hyperbarics, or the combination of all three. But we had OT afterward and the OT was so excited about his knees being able to make 90 degree angles. This morning and for the past few day or so I've had a hard time getting his legs to bend at all.

It's a funny thing when new developments happen or things like medication mix ups occur. All of the sudden capping trials and trach removal have become less important at the present time because I'm now on this "Let's get rid of Baclofen" mission. But I have to get back on track - I need to be more aggressive with splinting and capping. Splinting is sometimes hard because when he has PT/OT, they ask to take off the splints anyway so they can work with his hands and feet. So I've gotten in the habit of not putting them on in the first place. And then all of the sudden our day is done and he hasn't worn any splints. Bad. Bad. Bad.

And capping is not something we can just do. I can't just put a cap on his trach and go on about our day because his breathing has to be observed and carefully monitored so I know if he's in distress. And it's hard to find an hour or two out of the day where we aren't doing something.

I have to get it together and do these things for him because it's really important, especially the splinting.

And to ALL of you that prayed for Christian's cry a while back...boy, did those prayers work. I think he cries for every prayer sent because this boy cries all the time! How amazing the power of prayer! And now we pray for smiles. :)

Speaking of prayer, at church on Sunday a woman came over to meet Christian that had led a prayer circle for Christian while he was in the hospital those first few days. It was the first time she met him and she was overcome with emotion looking at this face that she had prayed for. She didn't know English very fluently but she put her hand on Christian's chest and said, "I just...feel...peace."