Medical issues

We are really struggling with some things medically with Oksana lately. 

To start, I think I have mentioned on this blog before that Oksana does not poop on the potty.  Have I mentioned that?  Well anyway she doesn't.  Don't bother leaving me comments on what we should do because you can trust me that we have done it ALL and then some.  This is entirely psych related and so severe that our GI said she had not seen anything this bad.  So basically she only poops in her pants and if you don't act perfectly content with the fact that she does that, or if you even mention the fact that it might be a good idea for her to go on the potty, she holds it.  And she holds it for a long, long time.  When we told her psychiatrist this she told us we would need to see a GI and start a bowl regimen with her so that she can't control it like that.  I asked her if eventually she would poop on the potty.  Her response was "Do you think she will?"  Well sadly we both knew the answer to that.  She told me that if we didn't do it now we'd be doing it when she was 15.  So today was the GI appointment.  In true Oksana fashion she was well prepared for it since she had been holding it for one week prior to this because I made her put her underwear on by herself after she pooped in them and I wouldn't do it for her.  Yeah, she has some issues.  I was almost to the point of giving her an enema and then I decided it was best for the doctor to get the full effect of what we are dealing with.  Well she got it all right.  Turns out, after an xray, that Oksana is quite literally full of poop.  So much so that she is being admitted to the hosptial on Tuesday.  They are going to sedate her, clean her out manually, do a rectal exam just to be 100% sure there is nothing physcial going on, place an NG tube, and then keep her overnight to continue giving her meds through the tube to clean her out.  Once she is completely empty we will start a bowl regimen using medications to keep her moving her bowls and unable to hold them in.  It's hard to believe it has come to this.  Don't even get me started on how hard it was to look at that xray.  It was physical evidence of what trauma does to a child and it wasn't pretty.

Next on my list is Risperdal.  We have a problem.  The last increase....the one that finally gave us peace....the one that finally had her functioning in school and enjoying life....well it has also caused a significant side effect.  Drooling.  And lest you think that is no big deal let me tell you that this was no ordinary drooling.  I've never seen anything like it.  There was literally a river coming from her mouth.  Her skin was constantly went and despite our best efforts she had a rash climbing up her face that we could not stop.  Well guess what?  Low and behold they have a medication to battle the side effects of the medication.  We started it and within 12 hours her face was dry again.  It was amazing.  Her rash was gone and all was well.  Then we started to get side effects from the medication that takes care of side effects.  She had extreme heat sensitivity (and it's only 80 degrees out) and she was struggling to urinate.  Now she always has that problem, mostly because her colon is so full that it is putting pressure on her bladder but this was worse than ever.  When we looked it up, sure enough it is a side effect of the new med.  Sigh....  That's not even the bad news though.  The bad news is that the doctor on call (her psychiatrist is out until Tuesday) had us wean her off of the new med and asked us to reduce the Risperdal to see if we can still maintain behaviors but reduce drooling.  If this doesn't work (and it won't) we may have to wean off of Risperdal and try a new med all together.  That alone makes me want to crawl into the fetal position.  That was Monday....the drool started back today.  I'm so frustrated.  We talk to her psychiatrist on Tuesday to get instructions from there.

Ahhh but that's not it.  Oksana recently got Botox in her calves.  The last time she had botox they did not sedate her and it was very painful.  This time we took a day off of school, had her sedated, and she got botox.  It was a much more pleasant experience except for the extra time it took and the time off of school.  Well it looks like it isn't working.  I kept thinking maybe it was my imagination but no...her PT did measurements today on her range of motion and we've seen 0 change....0.  Now there are different types of botox and different dosages so we can do it different next time, but goodness this is frustrating.  Considering that the GI appointment was today, the drooling started back today, and we've learned that the botox may have been a complete bust today I'm just DONE! 

The good news is summer vacation is here and we won't need to deal with all of this while school is in session which is a huge relief.  Tomorrow is a new day and we are going to enjoy it!