Implementing Picture Rewards

Mike, our behavior therapist, came by today to explain how he wants me to begin implementing the picture rewards. The pictures we are starting with are Moose from Nick Jr, our dog Annie, the wading pool, and my car. Mike took all of these pictures and cut them in half. He then gave her 3 items and asked her to put each of them inside a bucket. When she did that, he gave her half of the Moose picture. He waited a few minutes and then had her do it again, praised her and then gave her the second half of the picture. Then we put Moose on tv so she could watch it. I can use these reinforcers however I want - in a therapy type setting like we did today with work, or I can give her the first half as a reward for any type of good behavior. I decide what the reinforcer is based on what I feel like doing, and I also control the time frame between her getting both pieces. It's all about Raquel associating good behaviors with getting preferred items, and me being the one in charge. Consistency is key, so Mike, Gabby & my respite worker will need to be on the same page.

What I can't do with this reward system is take away the first piece once it's been given to her if she starts to act up, and I can't give her a piece as a reward for following my directions if she was attempting a forbidden behavior. For example: her trying to turn on the stove and me telling her not to. I can't give her a piece for not doing it because then she'll know that all she has to do is go to the stove, wait for me to say no, and then not do it and get a piece. And trust me, Raquel is a smart, manipulative little girl. She would have that one down in NO time!!

Next week, we will review todays procedures, make changes if needed, and then he wants to start addressing the behavioral issues. Today, I had to give her the meds right when he got here and she unfortunately started having her reactions to them and got very tired and woozy. She did really seem to enjoy working again and I am so happy about that. I also think that her having a male therapist is going to be a great thing. She's so used to associating the work with the ABA Team of wonderful women we had on a daily basis. By coming weekly, it's like she has a new playmate. And although very familiar with ABA, he's trying to make it a bit different than that even though it will still be very structured. At one point today, we were sitting on the floor and he was explaining the reward procedures to me. Raquel came and sat right with us and watched us talk and had a big smile on her face. Typically during therapy, she would throw a fit when I would engage in a conversation with the therapist since she wasn't the focus of the attention. I was proud of her letting us talk today.

Raquel is still having these episodes. I know that Dr. Mower said I shouldn't freak out, but that's easy for him to say. It continues to be extremely difficult to watch - to the point where Mike told me I shouldn't take her inside stores anymore. And they are concerning. When complete strangers come up to me and ask if I need help, there is a concern. So, I called Rady Children's Hospital this morning and asked for us to be on the cancellation list for the 24-hour inpatient video EEG. The sooner this gets done, the better. I don't want to wait until August unless I absolutely have to. Plus, if Landau-Kleffner Syndrome is ruled out and she's given an Autism diagnosis, she qualifies for more services.

I also left a message for Dr. Mower to call me regarding the blood tests he has written up. He wants these taken before her second dose which is typically around 2pm. If you're familiar with the lab at Children's Hospital, you know that it's not a place that you can ever zip in and out of. Because her medication is an anti-convulsant that needs to be administered at a specific time, I called the lab to see if there was a way to get an appointment. No such luck. Instead, I was told that I needed to check in 2 hours before I would give her the meds - their typical lunch time waiting period - which puts me at the lab at noon!! Not a good thing, especially when you factor in the parking situation as well. I am hoping that I can do this test before her first dose. If so, I can be there when they open at 7:30am. If not, I am going to see if he can transfer the order up here to Palomar Hospital instead.

Last weekend, Mike and I attended a 100-mile car run that was put on by the San Diego Panteras Club. The proceeds this year went towards the Wounded Warriors Foundation. We overheard the main guy telling someone that next year, it looks like it will be about Autism. When we were leaving, we went up to his wife and told her about Raquel. She immediately introduced us to a member of the club that has a 13-year old Autistic son. We exchanged contact information and he said I definitely need to be in contact with his wife, that they've tried everything, almost had to put him in an institution because he was so difficult, but now he's doing much better. It's great when you are able to meet others that have gone through and overcome some of the challenges.

Here's a picture we took the night before the race when Mike took Gabby to Crusin' Grand.

Mike wanted boys at first but has seen first hand that girls enjoy to hike, fish - and love the hot rods, too!

Neuro Follow-Up Complete

This morning, we had a rather lengthly follow-up appointment with Dr. Mower. His first comment to me after greeting us was, "You've had a pretty difficult spring." Yes we have. But hopefully that just means we'll have a really great summer. The cup is still half full, remember?

There weren't any tests to review this time so we basically just talked after Raquel's initial exam. We stressed our concerns about these "episodes" going on, and then one happened while we were there. He watched intently and then told me not to be scared by them, that they resemble autistic like behaviors and he doesn't feel they are seizures. Even the staring spell that I thought she was having he said wasn't one because she was blinking and would easily redirect her focus. He said he thought she was just aggitated and reacting to that. She has lost weight so her meds may be off and her levels could now be too high, which could be the cause of this so tomorrow I have to take her back to Children's Hospital before I give her the second dose and have blood work done. Then I'll talk to him on Thursday and see if he wants to make any adjustments medication wise.

He was very happy to hear the positives that we are noticing: improved sleep, less frequent headaches, more vocals, better focus, etc. and doesn't want to change medications at this point.

He does want us to do the 24-hour inpatient video EEG monitoring, so that has been confirmed for August 16th at 9:30am at Children's Hospital. Dr. Mower or one of the other neurologists in his group will be administering the test. Once the test is done, he said we'll know if she has Landau-Kleffner Syndrome (LKS)/Epileptic Aphasia. He also requested that they do blood tests for a couple of very rare metabolic diseases. It sounds like if these tests come back negative and the video EEG shows she doesn't have LKS, then she may be given an Autism diagnosis.

Mike did mention that he's concerned about her having a bad reaction to the Depakote, that both his sister and aunt couldn't tolerate it. Dr. Mower said if the video EEG in August shows the abnormal brain discharges she was having are gone, then other anti-convulsant meds would do the same thing. At that point, if we are still having concerns and feel she is acting overly medicated, we can start trying to find a better fit medication wise. Again, the blood work tomorrow will tell if her levels are too high or not. It could be as simple as that.

I feel a bit relieved knowing that the episodes don't need to freak me out. Having Dr. Mower observe it and then look me straight in the eyes and tell me that I don't need to freak out was a very reassuring thing. He reminded me of all the tests that have been done and how so many things have been ruled out. And he stressed therapy, therapy, therapy. And the more the better. In-home behavior therapy will resume next week. Now I just have to work on getting speech and occupational going again.

Neuro Follow-Up Tomorrow

I normally get a bit nervous before going to see Dr. Mower. I don't exactly know why - he's an awesome doctor and we couldn't be more blessed to have him. I guess it's because he's a neurologist, and I don't like Raquel needing to have one of those. But, such is life.

Today, I'm feeling a bit different. I am looking forward to the appointment and hoping to get some answers. Although I continue to notice improvements in Raquel - she's talking more, sleeping better, is much calmer, and playing more functional - these "episodes" are continuing and still very much freaking me out. Mike actually filmed one occasion and I plan on bringing the camera to play it for Dr. Mower in the morning.

Since Mike is home a bit more these days, he's been observing the episodes and quite honestly, having a very difficult time with it all. He's very emotional when it comes to his girls, especially the one that can't tell him what's wrong so he can try to fix it. Last night, after a long drive home with Raquel from his parent's house, he got upset, stressed, concerned, and then just mad about the situation. He said that we've turned her in to a prescription drug baby, and that was hard to hear - especially considering that I'm the one administering the meds, or giving Gabby the stuff to give to her.

So I'm looking forward to tomorrow. I need to find out what is going on and what our options are because what is happening is clearly not working as it should be. We tried to wean her off the Depakote and she ended up in ER. Now she's back on it, with full doses in her, and I'm still not liking it what I'm seeing. She's not getting therapy, she had to be pulled from school. This is all getting very old. It's a good thing she is so cute. Every time I think I'm going to go off the deep end because of it all, she gives me a smile that melts my heart - and that gives me the strength to keep going. I love you, Raquel!!

Liquid Meds Are A Good Thing

After continuing to struggle getting full doses of the medication in Raquel, I, again, called the neurologist for some much needed support. Conversations with Dr. Mower seem to be on a weekly basis at this point. I'm very fortunate to have him so readily available.

I was actually nervous about having our most recent phone call because I've spoken with him so much since the ER visit and thought he would more than likely suggest changing the medication. Instead, he put in the order to try her on a liquid form of Depakote - something I didn't even know existed. I started giving her this last Friday and have to say that it is so much easier than the capsules. Even though it requires her to have one extra dose a day, each dose is only 1/2 of a teaspoon - something easily given by spoon in one gulp. I no longer question whether or not she's gotten her full dose. And the other day while shopping at Trader Joe's, one of their employees came up to me and commented on how great she looked. It's nice getting feedback from people that not only know what is going on for her but also see her on a somewhat regular basis and can notice the subtle changes.

Here are a couple pictures taken on Sunday. Mike thinks that every 4-year old girl needs to cruise around in a '56 Cadillac convertible.





She obviously agrees.

And here they are eating raspberries in our neighbor's yard. I swear we live next door to our very own farmer's market!

Next on the agenda is our neurology follow-up on the 21st. The 24-hour inpatient video EEG at Children's Hospital has been scheduled for August 16th, but at this point, I'm not sure Dr. Mower will want us to do this until her medication levels are stable for quite some time. I guess I'll find out next Tuesday.