It has been a little while since we have added a drug to the allergy list for Casey. Sadly, we now have one to add. Back in August we started a new medication that was supposed to help with tone. Casey is so stiff. We started with her hips dislocating due to stiffness, then knees, now her elbows are also dislocated. There have been a few different drugs (including Botox injections) that we have tried over the years. Some just never worked so we stopped using them. Some caused muscles to relax in the wrong way and lead to breathing issues. The latest on our list of ineffective tone medications is Dantrium.
We had to build up to a full dose. This took all of August. We noticed right away that Casey’s wet diapers were much less frequent. We decided we could deal with that, at least she was still going. Then around the time we got to full dose we noticed we were suctioning a LOT more than usual. After a couple weeks of increased suctioning we noticed her gtube was leaking more than usual as well. This let us know that reflux was most likely the cause of both. We tried to give her more breaks in feeding, but it did not help at all.
About 3 weeks ago we noticed the gtube drainage was looking dark (coffee grounds). This indicates a GI bleed. We learned all about GI bleeds almost 2 years ago exactly when we were last in the hospital. Luckily since we knew what it was, we were able to act on it. We have a medication for Casey to help counter act the bleed. It coats her stomach and also helps reduce reflux and nausea from the blood. We started this as soon as we noticed the drainage.
After about a week of dealing with the bloody drainage, we noticed Casey’s heart rate was getting higher and higher. This indicates a couple of things, pain, fever, or dehydration. Her fever was never high enough to cause the elevated heart rate. We tried giving her fluids, but they did not help at all. Finally about a week ago we realized we were not making it any better and it was time to call the doctors.
As it turns out, the dantrium has a list of side affects that include- GI bleeding, urinary retention, and abdominal pains. The next step was to get her off the medication. Dantrium has withdrawal issues, so we have to ween her off. If we just stopped it could add even more problems. Casey’s neuro is helping us ween her off. While we are weening her Casey’s GI doctor has increaded the medicine used to counter act the bleed. And Casey’s palliative doctor is giving us some strong pain medication to help keep Casey comfortable and get the heart rate back down.
It has been a long few weeks. The bleed does seem to be a little better, and we are getting some wet diapers again. Casey’s last dose of Dantrium will be on Wednesday. We are still having some trouble with her heart rate, but the doctors are helping us.
Casey has missed a lot of school and therapy since she has been feeling so bad. I was hoping to get her back on schedule this week. It is looking like it may be another week before we are back to normal. I will post more when we get her off this drug and hopefully back to her usual routine. Until then, we hope everyone is doing well.
Be sure to check out CLU if you have not already. There is still time to participate in the Trick-or-Treat Project 🙂