Video EEG Monitoring

Yesterday, after coming home to an obviously stressed and concerned respite worker, I called Raquel's neurologist again to get some much needed input.

Because the concerns I have now are pretty much the same prior to the weaning process, he is not linking the two together. I asked him if he thought she could possibly be having true seizures now and he said that was highly unlikely, that he feels she is just reacting to something when she has these seizure like episodes. I will be emailing him a picture of her rash as well as a video of her having one of her "things." Again, just love her neurologist. He makes himself so readily available and definitely takes my concerns very seriously. He always acts like he has all the time in the world to talk, and makes sure he's answered all my questions before we get off the phone. That means a lot.

Dr. Mower did put in a request for Raquel to have a Video EEG Monitoring done. This is a 24-hour inpatient test that will be done at Children's Hospital. She will once again become my little Smurf, but this time she will stay at the hospital and be video taped at the same time. I will, of course, be there with her during this process. The test will allow the doctor to see how she is acting and then compare it to what is going on in her brain at the same time. Unfortunately, we are on a waiting list and probably won't be able to have this done for a couple of months.

In the meantime, he's wants to eliminate the Depakote and replace it with something called Lamictal. At this point, I don't care what we use to wean her off - I just want her off of the meds. It breaks my heart to see her suffer and I am constantly asking myself how much more she must endure.

Glad we've made it to Friday. This morning, she woke up with a little bit of a sparkle in her eyes. Let's see what today brings...

In-Home Behavior Therapy Resumed

Today we met with Mike, our new in-home behavior therapist. I think he's going to be really great. He came a noon today, and Raquel was overly tired and wanting to nap so he was able to observe a lot of the behaviors that are to be addressed. Each week, Mike will be giving us certain procedures that we will need to be consistent with throughout the week.

This week, my homework assignment is to implement a "Reward System" of sorts. The starting reinforcers are going to be: (1) Moose & Zee on Nick Jr (since they are one of her favorite things), (2) the swing, (3) the car, and (4) water. We will obviously be adding additional items as we develop the system. Mike wants me to take pictures of each of these items - similar to the PECS we were using - but to cut each picture in half like a puzzle. When Raquel does a behavior that she should be rewarded for, such as playing quietly, picking up toys, tapping my leg for attention, etc., I will give her one piece of the puzzle based on the activity I feel like doing, NOT what I think Raquel wants to do. When she is rewarded with the second piece for good behavior, we watch tv, play on the swing, go for a ride, or splash in the water. Mike specifically did not want "water" to be taking a bath and instead wants to keep that as part of our morning or bedtime routine. Again, whatever is the most convenient for ME.

This reward system is supposed to help Raquel learn what behaviors are acceptable and which ones aren't. And we are very soon only going to be acknowledging good behaviors. As Mike was observing me interact with Raquel during one of her episodes, I was saying, "Gentle hands" when she was hitting herself in the head. He said to no longer do that and instead to simply hold her hands preventing her from doing it, and to not make eye contact or use any vocal cues. By acknowledging what she was doing was reinforcing her to do it because she had what she wanted - all of my attention.

It's nice having some in-home help again and I look forward to meeting with him again next week and getting more input and ideas.

Back To The Herbalist

As some of you know, I am a huge advocate for herbal medicine. I personally see my herbalist/iridologist if I have a concern before seeing my regular doctor. Herbal therapy has helped me through some really difficult times - miscarriages, carpel tunnel syndrome, depression, and anxiety attacks just to name a few.

At the very beginning of this process with Raquel, I did go with my gut and see my herbalist. I was told that Raquel was "switched", meaning she had a reversed polarity. As someone who was treated for this 15 years ago, I was not surprised, especially considering that I was switched when I gave birth to Raquel due to a stressful pregnancy (Mom being terminally ill and passing away shortly thereafter). And if you're switched during pregnancy, you typically pass this on to your unborn child.

What is reversed polarity? It's a disease of the physical electrical system. It effects the way your body deals with mentality, immunity, and just basically your overall general health. Keith Smith - my herbalist/iridologist says that: "A shift in the polarity of the body changes the way electrical conduction flows through the cells. Our body has a North and South Pole, just as the Earth. When something causes a shift in our system, our axis also changes, thus your poles have reversed, and your body cannot operate in the most perfect way."

Last Saturday morning - after dealing with a pretty horrific day on Friday - I decided to take Raquel to the herbalist to hopefully get something that would calm her down and help her deal with the Depakote withdrawals. The very first thing Keith asked me was if she was having problems with her bowels. I found that odd, but told him, yes, ever since the start of the medication nearly a year ago, Raquel has been plagued by chronic constipation. He said that the bumps around her mouth and on her lower cheeks tell him that her bowels are trying to self-regulate.

He then tested her and I was told, again, almost two years later, that she is switched. Talk about going full circle. How does the saying go? Hindsight is 20/20? I will not beat myself up for going the route I did. I am definitely relieved to have had the tests done and so many things ruled out. But I am going to keep her on the herbal program, have started a journal to document changes/patterns in behavior, and Keith will be monitoring her every 5 weeks. We don't see her neurologist again until July.

Keith did give me an herb for calming and I have to say, since giving it to Raquel, she is not suffering as much. The weekend was much better than last Friday, although she is still not sleeping like she should be. Last night I was up with her from 12:30am - 4:45am. That makes for very long days!

Tomorrow her new behavior therapist comes. That should be interesting...

Very Aggitated

I have to say that so far this weaning process really sucks. And today is only the 3rd day. It is very apparent that she is experiencing withdrawals of sorts and it is extremely difficult to watch. It kind of brings me back to the very beginning of therapy when I had the most behavior hours because she was so hard to manage. At least now I have learned specific techniques to help her, but her "tantrums" for lack of a better word, are clearly not behavioral this time and instead appear to be reactions. She is very uncomfortable and requires constant attention. It is extremely hard to console her - and I'm pretty much the only one she wants during these trying times.

Here is a picture I took early this morning at Petco.



If you look closely, you can see spots on her face. She has broken out in a funky rash from her nose down. She doesn't appear to be bothered by them, but it certainly bothers me. I don't know exactly what is causing them but this morning when I was giving her the medicine, she kept spitting it out and I kept scooping it up and putting it back in her mouth. It is extremely important that we make sure she gets all of her medicine, even though we are tapering off. A sudden deprivation of it can cause full blown seizures, something I certainly don't want to provoke. When I was done, I noticed that she had white granules on her chin and around her lips. I'm wondering if the skin contact could be creating these bumps. It's quite possible because I know the medicine needs to be in food items that Raquel swallows and not chews. If she chews the granules, it can cause an irritation in her mouth and on her tongue.

On the positive side - the cup is half full, remember - I heard from a behavior therapist and he is coming on Tuesday at noon to meet Raquel and discuss the type of in-home program I'd like to get started. It sounds like very good timing...

Weaning Off The Depakote

After speaking with Raquel's neurologist last night, he recommended that we start to slowly wean her off of the Depakote. We will give her 1/2 of her nightly dose for two weeks, then eliminate her morning dose for two weeks, and then remove her final nighttime dose altogether.

Even though I thought my lists of questions and concerns were pretty substantial, he didn't seem to feel anything was particularly alarming, and simply recommended weaning her off of the medication so we monitor changes in behavior. He didn't feel changing to a generic form of the drug would make that big of a difference because she isn't having true seizures. He said the doses weren't too close together like I thought they might be, but did say that very well could be why her sleep patterns have changed. My other concerns could certainly be side effects from the medication, but we won't know for sure until the meds are removed from her system.

Although I thought Raquel showed progress at the start of taking it almost a year ago, I've honestly felt recently that the vast majority of changes we were noticing were contributed to her maturing in age. And from day one I have been extremely concerned about side effects of the Depakote - both short and long term - especially considering the fact that she can't tell me what she is physically or mentally experiencing. And giving her the medicine has become very difficult. She looks intensely at what I'm feeding her to see if she can spot the white granules in her food, and if she does see them, she pierces her lips tightly together and shakes her head no. I guess that is her way of telling me she doesn't like how she feels once she takes it.

I kind of feel like we have come full circle with this and now are back to square one - with the exception of having more answers. I'm grateful tests are done, as difficult as they were, and am grateful that so many conditions have been ruled out based on her normal MRI and blood screens. All we know right now is that she has an abnormal EEG for some reason, which resembles a rare neurological disorder that can possibly be outgrown.

The weaning process began last night, so now we have to take things one day at a time. I'm planning on having her back in school on Monday.

Hi-Ho, Hi-Ho, Back To The Neurologist We Go

For these last few weeks, Raquel has been a bit out of sorts. She was on Spring Break for two weeks and was supposed to go back to school today, but Mike and I decided last night to keep her out until we can at least talk to Dr. Mower, her neurologist, about the changes we are noticing. A lot of these things tend to happen when she is tired or upset, and since she spends a good portion of her time at school upset, we didn't feel it was in her best interest to be there right now.

I guess about 2 or 3 weeks ago, I began noticing big changes in her sleeping patterns. One night she woke up at 1am, bright eyed and bushy tailed, ready to start her day, which was very annoying since I had no plans of starting my day that early! Instead of going to bed at her usual 8 - 8:30pm time slot, she's been staying up until 9:30 - 10:00pm and then sleeping in much, much later. But even though she is sleeping in, she continues to nap at her regular time and sleep just as long as she normally does. Naptimes are still a really good thing!

Then last Friday, we were at the mall and I feel she got over stimulated by some rowdy kids in the play area. Typically when this happens, she will immediately sit down and act scared. This time, she walked over to me and when I picked her up and put her on my lap, she started throwing herself back, doing weird things with her mouth and jaw, and closing her eyes. It lasted very briefly and once we left the play area, she had some snacks and was back to her regular self. But she has continued to do this sporatically since Friday, and I would be lying if I said I wasn't freaked out by it.

This morning, we took her to see her regular pediatrician to rule out a cold. She's had a low grade fever and her throat sounds very raspy, so I wanted to make sure antibiotics weren't needed. Her doctor thinks she may have some kind of virus because of the gurgling sounds but said her throat isn't inflamed, her ears look perfect, and her lungs sound clear. She didn't think a sinus infection was going on because she doesn't have a runny nose, but admitted that she looked like she didn't feel 100% and to give her plenty of fluids and treat the fever with Tylenol.

Last night, I wrote out some questions/concerns for Dr. Mower so I wouldn't forget them when he called. The concerns are:

• Depakote dosage times. I've changed it from giving her morning dose before school at 7:30am to once she gets home around 11:30am because of the medication giving her a headache. But by doing so, this means her nightly double dose is only 8 hours later, and something in the back of my head says that Dr. Mower wanted the morning and evening doses 12 hours apart.
• For the past 1 1/2 months, the pharmacy has been substituting Depakote with a generic brand. When I asked my previous insurance why I had to pay $97 per month for her medication - instead of my $15 copay - they told me that Dr. Mower instructed them not to substitute Depakote for the generic form. I need to confirm this.
• Sleep changes are a concern. She doesn't appear to get into a deep sleep at night anymore.
• Twitching - restlessness. When I hug her, I often feel her shaking on the inside. She has a very hard time sitting still, even when eating. She seems very stressed and aggitated.
• Balance issues. She's very unstable on her feet and clumbsy. She no longer tries to climb into the bathtub or on the couch. It appears that her depth perception is off.
• Obviously, the mouth, jaw, eye thing is a huge concern.
• She seems pale. I don't like her coloring at all.
• I need to verify what pain medications are okay to give her with Depakote.

It's really hard because I don't know what side effects she is experiencing. I know that on the bottle it says it can cause drowsiness and dizziness, but Raquel can't tell me what is happening to her and as a mother, it is an overwhelmingly helpless feeling having to play the guessing game when so much is at stake.

But again, I continue to look at the cup as being half full and know that she was put here in my life to teach me something valuable and important. And I also know that I'm a stronger person because of this.

I'm hoping to hear from Dr. Mower very soon and get some much needed answers so my girl can continue making progress.