It has been a rough start to this week. I am feeling a little dazed and extremely tired tonight, so this post might be just a jumbled up mixture of information. I worked an 11 hour day yesterday. I am so thankful for the job and I have enjoyed working there so far. But I am definitely glad that I won't have to keep up this pace for more than a couple of weeks.
Yesterday started with a bang after I got to the office and read a post on fb from my sister that she was at the ER with my dad. My first thought was "REALLY, LORD?!?!?" Evidently He thinks that we still haven't reached the "more than you can bear" point in our lives. Thankfully all was well and it seems that it was just severe vertigo. But it was a tough few hours awaiting the final outcome of all the tests.
Mary continues to cycle rapidly going from giddy to angry to despondent in a matter of minutes. We have also noticed that lately she has been doing some strange things like lots of rocking or swaying back and forth. Usually it is short jerky movements, but sometimes it is dramatic swaying with her arms swinging wide and her eyes shut. She will stop when we ask her to, but it is happening more frequently.
We had a good visit with the pdoc this morning. We mentioned the movements and the pdoc was concerned about it. It could be a sign that Mary is moving into a catatonic state (which could involve psychosis), or it could just be something sensory. Once again we are on the hunt for a good medication to stabilize this precious child. The combination of invega and risperdal with lithium seems to be doing a pretty good job of controlling the rages. But she gained another 8 pounds in 2 months time. She can't continue to gain weight at this rate. There is concern with her developing diabetes and she is also starting to have some trouble with her feet hurting. The pdoc seems to think that might be caused or exacerbated by the weight gain. The options of medications to counteract the weight gain are not all that promising. One is a diabetes prevention medication that helps with weight gain in children. There are risks involved with it and it would require regular bloodwork. Mark that one off the list at least for now. The other one is topomax and the nick name for this is "dopomax" because it can cause such severe cognitive dulling. We already see that with the lithium. We certainly don't want to add to that unless it becomes a necessity. Sooooo we are going to try a new medication called Safris. It is in the same family as some of the other a-typical antipsychotics we have tried with disastrous results. Ultimately if it does not work we could be looking at another hospital stay, which is a high risk to take. But if it has the chance of helping her, we have to try it. We will be tapering off of the other meds and onto this one over the next 3 weeks.
The other major thing that happened today was a dentist visit. Since she is cycling, she is also much more anxious and was very on edge about it all day. She was afraid that there was going to be a shot involved. No matter how many times I told her it was just a cleaning she was worried. The pdoc said that if they did find any cavities to talk with them about conscious sedation and ask that while they had her under could they do a blood draw. I know that they have told us in the past that they would do conscious sedation on her just for the purpose of doing the blood draw, but our insurance won't cover that because it isn't a dental procedure. Of course she doesn't have any real cavities, just a small filling that could be replaced because it is loosening up a bit. They did not seem willing to put her under sedation to replace a filling. Mary was not happy about the prospect of having any dental work done without being sedated and she was on the verge of melting down right then and there since they were insisting that they could do it without novacaine and without sedation. UGGGHHH! I wasn't talking with the dentist about it, just the dental hygienist. I finally had to tell them I would call back to make an appointment after we had decided what to do.
Charlie has gone from a slim and slender 75 lbs to about 100 lbs in the past couple of months on risperdal. I'm sick about it. It's the last thing he needs is a weight problem now. But, the pdoc says we'll keep an eye on it and hope that the steady weight gain stops. The risperdal seems to be working (most of the time) but this side effect is just horrible. I feel like I'm at a total loss. I'll have to look into the AP you mentioned. It's kinda like you're darned if you do and darned if you don't. I pray that this new med will work well for Mary!
ReplyDeleteHope the new med helps! Thank for mentioning Topomax - my daughter is on it, and I've noticed the cognitive difficuty but didn't know which med was the culprit. We're still dealing with weight gain, in spite of the Topomax, because I haven't wanted to increase the dose. I have read that it can increase anxiety also - not very good for Lily.
ReplyDeleteWill keep your family in our prayers.
(((hugs)))
Lila- hope the cognitive dulling stops for your Lily. I have friends who have been on it for migraines and they said that eventually it does get better.
ReplyDeleteTerri- Geodon did not work for Mary... well it worked for a few weeks, but then she got very manic on it. She wanted to go camping in Africa... RIGHT NOW! She also wanted to sit on the roof and watch the birds fly all while asking why we can't fly. You are right, the cycling never stops for very long. It is like hitting a moving target trying to find the right combo all while taking into account growth spurts, hormones, med tolerance building up, etc. I hope the Geodon continues to work for you.