Sorry I didnt update yesterday, I spent half the day running around between Alis therapy and other things. This is going to be a long post as I update about what the doctors said. Also part of this will be semi graphic (feminine stuff) so be forewarned. We did address Alis not eating anything except Pizza and hamburgers, and salad on Wednesday nights at church. Ali has lost over 6 pounds since July, most of which has been in the last month. They did not seem to concerned with that right now but she did bring up a g-tube. She said if Ali continues to not eat and losing weight then we may want to think about the feeding tube. Ali would still be allowed to eat whatever she wants during the day but we would give her formula at night to make sure she is getting the nutrition she needs. She said the eating may be due to the OCD or the autistic features. She said a lot of people with OCD will only eat one food at a time for a couple months and then it could change. She did suggest trying to separate the foods on the plate so the different types of food are not touching, an example she gave is if we cook roast to put the meat in one spot and the carrots on another, etc. Second we addressed Alis having trouble going to therapy and how it is affecting her. They said of course she needs to go but to try to keep it the same day of the week at the same time. This is where we had issues adding a second day, of course sometimes it doesnt always work to keep it the same day but we are going to do our best. We are just going to leave it at one day a week right now until after Christmas break. We do not want to add too much stress on Ali and right now with us hopefully moving in a few weeks, plus Alis getting a new wheelchair and a hospital bed, etc thats a lot of changes to bring on her at once and will probably overload her and it will cause her Anxiety to get a lot worse. The wheelchair will obviously be changed as soon as we get it but we may hold off on the hospital bed, we will see how the move goes first. We are going to be changing things when we move and they said a good time to change rules (like Ali wanting to have the TV all the time) would be as soon as we move. Just tell her new house means new rules so we will see how well that works because I would love to see her come out of her room more, this is of course why we have worked so hard on getting the house. Third, we addressed Alis puberty. She said it isnt too early for Ali to be going through puberty but she agreed with my concerns on it causing her disease to progress faster. Therefore she sent a second referral to an endocrinologist so we can discuss Lupron with them. It is an implant that goes in her arm that would stop her puberty for 2 years. She said there are of course ethical debates about this because some people believe you shouldnt stop puberty because it can slow/stop their growth, I would rather have her growth slowed/stopped over having the disease progress super fast causing major regressions. Depro-vero is an option to stop periods, because I know Ali cant handle those, but it doesnt address the disease progression issue. Plus there is also the issue of hair growing, this is a minor issue but could be a big issue for Ali. She does not allow me to touch her under her arms, therefore I would not be able to shave it and I am not sure how shell feel about me having to shave her legs, washing her body is something she wants to do herself and she only wants my help drying it, with the exception of under her arms and between her legs. Last major thing we discussed was Alis medicine. They said they dont know why she is on two medicines to control spasticity (Baclofen and Chlonazapaem) because from what they see she doesnt have spasticity, just dysonia. They said spasticity doesnt change except to make her legs tighter, whereas dystonia does change like what we see in Ali. They had us reduce the Chlonazapaem by 1/2 a pill in the morning and evenings, until we meet with the movement disorder neurologist this Thursday. They also agreed with us on not doing the Baclofen pump, but we did not discuss DBS much except me telling them that we have left it open as an option. As for the rest of Alis medicine they said they dont like the fact that she is on medicine to counter act side effects of other medicines. I told them I want to do a complete reset on her medicine, it is something I mentioned to Bobby a month ago but we couldnt do anything until we saw the neurologist. They agreed with me and told me to discuss it with her psychiatrist and the movement disorder neurologist when we go this week. If they both agree then we will slowly take her off all of her medicine until she no longer takes anything. Then we will see where she is at and what she actually needs and doesnt need. Of course this is going to require close supervision by all of her doctors, and we will be looking for a new pediatrician/ nurse practitioner who will be able to help us handle this and stay in communication with her other doctors. It is very hard finding someone willing to handle it that is in Jasper or within 30 minutes of here. A lot going on here as you can see and a lot of changes getting ready to happen. I will keep yall update as much as possible, of course things are crazy here and going to be that way for awhile. We are getting the home inspected Monday. Have a good evening and God Bless everyone!
Posted on: Sun, 16 Nov 2014 00:50:56 +0000
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