Rock Bottom

After the near drowning, Devin's therapist recommended we put her on Abilify.  This medication worked pretty well for her OCD, but made her gain a lot of weight--2-3 lbs a week.  After about 3 months, we decided that it was doing more harm than good, and we took her off in October.  This month, we began seeing the more serious OCD symptoms return.

Some of those things that became problematic were that she became more sensitive to sound.  This is not sound in general, but sound when she is trying to concentrate.  Think of it this way.  Some people, like me, get stressed a bit when they are driving and trying to find an address.  Sometimes I have to turn down the radio so I can concentrate.  This is kind of what it's like for her. Devin gets stressed when it comes to clothing due to her SPD (sensory processing disorder).  Clothes bother her big time.  So when she's concentrating on fixing an article of clothing, she needs quiet.  That means that no one in the house can talk, and we have to mute the TV.

Another thing is that she is sensitive around her ears.  While she is unable to describe the discomfort, I think it has something to do with her ears tickling them.  She has begun a routine of pulling her hair down by her ears.  As the days go by, it takes longer to calm herself.  Now, we have to stop talking while she does it and mute the TV.

Using the bathroom has become laborious in the sense that wiping takes time and TP.  It is common for her to use a whole roll of TP and either Darin or I have to use the plunger after she uses it.  It is also common for her to sit on the toilet for half an hour or more, and that is not because she is constipated or anything.  It's because her brain is stuck, and she can't get herself of the toilet.

The winter months have been especially stressful for me because all she will wear right now is dresses.  She stopped wearing undies back when she had an ultrasound (she was constipated and they were checking to make sure that's all it was) because the technician got some gel on them.  In her brain, she can't get past the thought that it was on there then, so it will still be there now.  She has some UGG boots, which are the third or forth boots we've bought her this year, but she won't wear them because they are "lumpy."  So, she goes barefoot.  Even in the snow.  She won't put her coat on because her sleeves bunch up.  So she just puts the hood on.  Or doesn't wear one at all.  People treat me like a bad mom everywhere I go these days.  

These are just a few of the things we've been dealing with the last few months.

Starting Thursday, she took off her dress and spent the day crying.  And then a miracle happened.  Darin texted me and said Devin's therapist had called him and said she thought she found a med that was weight neutral (meaning doesn't make you gain or lose weight) and wouldn't cause much problems with the heart.  She had talked to a psychiatrist and Devin's cardiologist, and they both thought this would be a good choice.  It couldn't have happened on a better day.  But we needed to get her to an EKG to get a baseline and make sure she was still ok.

We barely got through the weekend. She spent it naked.  We got the EKG in her bathrobe.

By some miracle, she got dressed so I could go to my doctor appointment.  Some worker there had a fit because she waited outside the bathroom while I went pee for 5 minutes.  But that's a whole other story.  She's 11 years old, and was perfectly fine.  Really, some people.

Tuesday, was rock bottom.  She spent the day bent over, holding her head.  She couldn't explain it to me, but something was bothering me.  She had an appointment with her therapist where we would find out how the EKG was and get the prescription.  Darin went alone because she was naked and suffering.

The therapist said she insurance wouldn't pay without Devin there, but she would do a quick 5 minute consult and Darin got the prescription.  The EKG was better than it has ever been.  The therapist said that if this didn't work, we would have to admit her.  We started it that night, and the next day she said, "I think I know how to fix the problem."  She did some flip of her hair and was ok.

Things aren't perfect, but she's functioning again.

The prescription called for one dose for 2 nights, then 2 doses a day.  We gave her 2 doses today.  Tonight, about an hour after her second dose, her jaw started locking up, then her knees buckled, and she put her head on my lap and fell asleep.  We looked it up, and she might need to just go with one dose.  Pretty scary.