Sunday, January 24, 2010

Dear Son Medical Update~Scopolamine Gel

Dear Son has been using the Scopolamine gel since we received it on Friday afternoon. I had paged the neurologist on Friday afternoon due to Dear Son's crying. He suggested a small dose of Risperdal Friday afternoon and at midnight. Between the gel and the Risperdal, Dear Son slept great. Friday night could not have been better. I went to bed at 12:30 p.m. and he didn't wake up until 4:30 a.m. Sometimes he gets hungry and likes his food started early so I started it around 5 a.m. I was up on and off after that with him for food, meds and to turn him over but generally he woke up happy, with a smile on his face and things seemed great. As a matter of fact, it was one of the his best days yet. He seemed like his old self.
On Saturday morning, I sat him up in the recliner again and he cried. For some reason, he can't seem to sit up more than ten to fifteen minutes before he starts crying out in severe pain. This is concerning to me since it's been going on for quite some time and we don't know why. I try placing pillows behind him to position him differently but nothing seems to work. He cries so much that he has a seizure. I end up using his VNS a few times and putting him back to bed. He is happy to lie down again.
After he left the hospital, I felt confident that the urinary retention was the problem for his pain and still do. At the hospital however, he never got out of the bed. They don't have a hoyer lift there and it's impossible to sit him up in the chair so we had no way to know that sitting was still a problem. I am concerned at to what would still be causing the pain-is it the bladder or is it pain from the pneumatosis? They say there should not be pain from that but I wonder. When I take him out of the recliner and put him back in his bed, he's happy.
While the gel seems to allow Dear Son to be pain free, since it's not causing urinary retention, I don't believe the gel is working at all. Dear Son's secretions have increased and he is choking on them which means that the Scopolamine gel is not drying up secretions like the patch did. The pharmacist said I could use up to .4 ml/day which I did on Saturday but it doesn't seem to have much effect. I am worried he will choke to death. In the meantime, I am trying to give it a few days to see if it will work. I have also started to track how much I am giving him. I was using it whenever he choked on Saturday but tried to decrease the amount since then using it only at night. My fear is that he will choke on his secretions when I am not in the room or he will choke at night when I fall asleep. He choked on his secretions last night when I went to bed and had a few episodes of apnea after some of the choking. It wasn't a great feeling. I worry he'll choke or aspirate on his saliva. I was also up a fair amount, every 90 minutes or so, could be more, I can't be sure, so it wasn't as good as it was Friday night, although I had not given him anymore Risperdal.
The actual medication is more like a foam than a gel. It's almost as if it the medication were "whipped". It seems to be mostly air to me. When I attempt to administer .1ml and put it on my gloved finger, .2 ml comes out. It's extremely difficult to get the exact amount out of the syringe. Also, when I try to pull back on the syringe, to pull .1 ml back into the syringe, it seems like it might have worked and yet when I go to adminster the next dose, sometimes nothing comes out at all so I wonder if anything was retracted at all. I am rubbing it on both wrists and sometimes on one wrist so I probably need to make another call to the pharmacist to make certain I am administering it correctly. I wonder how much remains on the rubber glove.
So at this point, I need to give it a few days to see how it goes. As with most medications, you really need to give it a week or two. Also, because he can't swallow or clear his airways, I'll have to be pretty careful. I get an awful feeling however, that something isn't quite right with this sitting. I would have expected that to improve somewhat but things haven't changed much where that is concerned.
In terms of the big picture, I am beginning to think that we are entering a "no-win" situation. We have to keep his airways clear. If the gel doesn't work, then perhaps the only option is surgical removal of two of the saliva glands. If Dear Son's two greatest risks are sedation and aspiration, then surgery would present a risk with the sedation. I don't know what other options there are, but I'll have to leave that to the physicians.


ANewKindOfPerfect said...

I'm glad to read that you got a little bit of sleep! I'm sorry it didn't last longer. I hate reading how desperate it sounds. I hope the doctors, along with you, can come up with a solution!

deb said...

Continued thoughts and prayers for both you and Dear Son, Dream Mom.

All the best-


Donna said...

I hope that you can find a way to make the gel successful.
We face similar issues with my daughter and have not found a suitable solution with using medications alone.
Although meds help her secretions we still have to suction very frequently and catheterise 3 times a day.
Without the suctioning she is a mess and without the catheters her urine retention gets bad and she also cries a lot until it is relieved.
I really hope the scopolamine helps Dear Son. It is the only one we haven't tried, so I am very interested in how it works for him.

Kristin@Boulevard Interior Design said...

DM, I know you have great intuition, I hope you continue to listen to it and search for the answers. I pray you get those answers soon.

Michelle said...

crazy question here, it possible he possibly has a polynoidal cyst or something? I had one, and let me tell you, sitting up was agony. everytime you post, I think about it. Im sure you would notice as you change him, but sometimes you can see it easily, mine was right at the tailbone. It was worse than labor, frankly. Just a thought. I worry so much about his pain and about you needing a break. Think about you guys all the time.

Canucker said...

Dream Mom, my heart goes out to you because I spent a similar year with Joe... unexplained crying, trying to figure it out.

Did the doctors rule out pain from DS's scoliosis? Joe was also unable to sit for very long in his wheelchair and was much more comfortable in his bed from the age of 20+.

No easy solutions, that is for sure.


Dream Mom said...

Thanks, everyone. I appreciate your thoughtfulness.

Donna-I'd probably go the surgery route before I'd do suctioning or the catether. I'd never do the catheter because I feel it's too painful and I wouldn't do it for me. My rule of thumb is if I wouldn't do it, I won't do it for DS. As far as the suctioning, I have such a weak stomach I don't think I could do it. I can't stand the deep suctioning at the hospital at all. I really have a hard time with it so I can't imagine that ever happening at home.

Michelle-Thanks for all of your thoughts and input. No cysts of any kind.

Canucker-The Orth Surgeon hasn't assessed him any more, other than the office visit we had in December. My gut tells me that since he could sit in the recliner before he had the swine flu that it is most likely related to the bladder or the pneumatosis, although the GI surgeon does assure me there is no pain there. I just don't know. I had hoped everything would just go away and it's really hard that the gel didn't work. I had such high hopes for it.

Donna said...

Dream Mom, I am sorry. I hope you didn't think I was suggesting you suction or catheterise. I was just mentioning how we deal with similar issues,due to limited success with medications.
It is also different for my daughter as she doesn't really know any different. She has been suctioned constantly since a baby and was very young when we started with catheters (which no longer hurt her and are less painful than the infections she used to get).
We all need to make our own decisions regarding treatment. From reading your blog, you have advocated wonderfully for Dear Son for 18 years and I am sure you would make the decision that you feel best for him.
Just hope I didn't upset you at all.

Dream Mom said...

Donna, No you didn't upset me at all; I assume you were merely offering a suggestion. It's so hard on these comments because they are easily misunderstood. I respect decisions others make as well; I just know for my Dear Son there are things that I am not capable of doing and those are two of them. I know you were trying to help and that is how I understood your comment:)Peace my friend.

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