Continuing the Fight

Just when things seemed like they were at their worst last Saturday, things became worse. Elise spent all day Sunday & Monday behaving like a wild animal. She would stand in front of me screaming and lifting her arms up to me asking to be picked up. When I would pick her up, she'd stiffen her body, and arch her back to escape my touch. I'd have to put her down and she'd then begin pulling her hair and screaming "Maaamaaaa!" in this tortured sounding voice. She would get so out of control that I'd have to shut her in her room since she could accept no comfort from me and was physically attacking me. When I'd hear the awful screaming slow, I'd re-enter her room and find her naked with scratch marks all over her body from clawing herself. It was beyond horrible and I hope that never experience meltdowns like that ever again from her.

On Sunday, we took the kids to the beach. The beach is not a good place for a child who is going sensory crazy - lesson learned the hard way. She was unreachable at the beach. She ran back and forth, spinning and jumping constantly. She seemed completely unaware of the people around her. When it was time to leave, she threw a major tantrum. I had to squeeze her between my legs in order to put on my beach coverup and pack a bag to carry back to the car. She broke free once and ran straight back to the water. I had to chase her down and start the process over. I grabbed the cooler bag and Elise's shoes and carried her as she struggled and screamed all the way back to the parking lot and the car. No one offered any help, but before I had a child like Elise, I wouldn't have either. Now, I'd recognize a meltdown and take the person's bag for them. Life experience changes you. I honestly don't blame anyone for not helping, it just made me realize this change in understanding I now have. By the time I got to the car, I was physically exhausted. I had to sit on the door opening for probably 5 minutes just to gather myself. Elise settled as soon as she got in the car, instantaneously. The meltdown was complete and utter sensory overload.

On Monday, we had planned to go to the zoo. We decided that Elise couldn't handle that, an excellent decision since even at home she spent the day in several major meltdowns like what I described above. Hubby took the boys while I stayed home with Elise. Again, it was just an awful day. We did manage to get out long enough to buy her some new shoes since her old shoes barely would go on her feet. During one of the day's last meltdowns at bedtime, I was just wondering how I would ever manage to make it through another 40 hours until her psychiatrist's appointment, my hope for help.

On Wednesday afternoon, we met with the doctor. Fortunately her behavior had improved dramatically on Tuesday and Wednesday. Elise's doctor is one of the kindest people I know. She's seemingly an unlikely candidate on the surface for this designation, but thankfully it's true. When we described what we had been experiencing, we expected a medical assessment. We got that, but first we received a heartfelt, "That must have been horrible for all of you." Such a simple statement, but it means so much. She thinks that it could have been the B12 that was causing the extreme behavior as some children cannot handle the B vitamins. However, she admitted that, while definitely possible, this would be an EXTREME reaction to B12, especially considering the small dose Elise was taking. However, she did think this was possible and that we should definitely not include B12 supplements for Elise again. She also said that some children react to the removal of gluten initially, but again, she felt that Elise's reaction would also have been extreme for this too. She agreed that we should wait longer to remove gluten and do so very slowly. She also told us, unprompted by anything we had said, that "This is not a regression, Elise will come back." I can't even begin to explain how much that statement met to me and how much that statement is helping me continue to push forward. She provided Abilify for Elise. We are to try it for 7 days, 1/4 tablet in the morning. The tablets are tiny, so cutting up the tablet into quarters is a challenge, but can be done.

Our inclination was to wait until Elise stabilized for a period of time before trying the Abilify. After talking about it, we decided that we should try it this weekend because, if she had a bad reaction to it, our babysitter would be better equipped to identify it and handle her than her abuelos will be. We didn't want to experiment when we didn't have either hubby, myself or the sitter to handle Elise and observe her. She took her first pill Friday morning. We didn't notice much affect at all, although she had a good day. When I arrived home, the sitter told me that Elise was tired. In fact, Elise was so tired that she fell asleep in my arms by 7:15. She didn't awaken until after 8 this morning. A lot of sleep, but no alarm bells yet. I again gave her a dose this morning. She had therapy sessions from 11-2 & from 2-4. We planned to take her to an indoor playground for the latter half of the first session. She played there but was very lathargic and spacey. Earlier when her therapist brought her out for lunch, she mentioned that Elise seemed unusually tired. I thought it might be allergies since I'd heard her sniffle and we're all experiencing allergy issues right now. I gave her some Claritin and we left for the playground. When we returned home, I was shocked to see that Elise had dozed off in her carseat (it's a 3 minute drive). I brought her inside and she began her second session. This therapist noticed that Elise was very tired and spacey also, unusually so. Around 3, she came to find me and asked if I would sit and watch Elise work because she was concerned about her. Elise sat at her work table. When asked to perform a task, she acted very out of touch, leaned her head backward and nodded off to sleep. I put her to bed and she was out in less than a minute. Needless to say, her session ended there. I paged the doctor. While waiting for her return call, I began reading about side effects and found that sleepiness can be one. The doctor asked that we give her the medicine tomorrow night instead of the morning and call her on Monday to let her know how Elise was doing. I'm ready to give up this trial, but I want to give it a fair chance. I don't think this is going to work for her. I don't want a zombie, but I don't want a child raging uncontrollably either. I imagine that we'll end up pulling this medication. Hubby and I would like to remove almost everything and see what the real Elise is now like. We can then slowly start again. I hate "experimenting" on her little body, but as autism is so greatly varied, there is no other way to determine what will help your child. Obviously, Elise has an incredibly sensitive system. My poor angel baby.

Oh, I forgot to mention the moment of extreme panic I felt when I realized I had given her Claritin and didn't even think to verify that there is no drug interaction with the Abilify. I ran to the computer and fortunately, there is not. However, it was a terrifying moment to think that she could be harmed by my carelessness.

Another side effect of Abilify is constipation. Elise hasn't had a bowel movement since Wednesday. That's the worst she's ever been. You know, I'm starting to talk myself in to ending the Abilify experiment.

We also visited the chiropractor again today. Her adjustment is holding. She is no longer cooperative with the chiropractor, so I don't know how useful it'll be to continue the appointments. We cut a large chunk of hair (over 2 inches) from the underneath part of her hair to send into a lab that analyzes the hair. It's not a particularly accurate test, but it does help to point one in the direction of possible problems. I think it's possible that Elise has been exposed to too much mercury. I had a mouthful, literally, of silver amalgams when I was pregnant with the twins. Concurrently, I moved into our house when I was 17 weeks and began enjoying the lime/lemon tree in our backyard. Apparently lemon & limes can seep the mercury from the amalgams through my body. On top of this, I had frequent teeth cleanings while I was pregnant to help the risk of pre-term labor, as infection is the leading cause of that and many infections come from bacteria in the mouth. Cleanings also leach the mercury from the amalgams. In addition, I have had 4 or 5 MMR shots. My titter for this must be very high and this can also possibly be linked to increased chance of autism. In addition, at the time frame I had my last 2 or 3 (can't remember how many) MMR shots, thimersol would have been a component. Elise also received a flu vaccine when she was a bit over one and that still contains a small amount of mercury. With all of this little things, I want to verify that Elise's mercury levels are not elevated. It's just for information at this time. I'm skeptical of this as it's not scientifically proven and chelating can be very hard on a body. I don't know if that's a line I would ever cross with Elise. There would have to be a very strong case made for doing so and I'd only look into the mildest forms of it. That would be long ahead in the future. In the meantime, I need to get Elise a haircut to even her hair. I wanted to cut it shoulder length for the hot summer anyway.

I just want to thank all my friends and family who read this and have offered their support and kind words. It is so important to me and it means a lot.