"Mom. She Talks To Us. Isn't That All That Really Matters?"

I am very happy to report that two of our annual meetings are behind us for another year.

First, last Wednesday we had our annual IPP (Individual Program Plan) with my Regional Center rep, Heather. This is where we basically discuss where she's at developmentally and behaviorally, how school is going, changes in services & medications, health issues, etc. I actually look forward to this one. Heather is a huge support, and jumps through hoops to make sure I continue getting the services I'm entitled to while dealing with forever changing budget cuts. Not an easy task. The main change in services that goes into effect next month is a decrease in my respite hours. Instead of 16 hours per month, I now only have 10 hours. Bummer. But what can you do? Nothing but be thankful that I still have 10 hours.

Since I'm the one taking care of Raquel on a daily basis, it's sometimes hard for me to notice the gradual changes. But once I sat down with Heather and we started comparing last year at this time to the present, it seemed like night and day at times. Last year we had a behavior plan in place, the goal was to keep tantrums and self-injurious behaviors to a minimum of 3-4 per week. This year, we don't have any behavior goals because she doesn't have the outbursts - unless caused by her seizures or being sick. And there is nothing self-injurious at all. Those days are long gone. I remember being told way back by my ABA Team that there would be a light at the end of the tunnel in this respect. Now we are actually out of the tunnel and living in the light.

One thing we did discuss was my ongoing concern regarding safety issues. I'm not any more comfortable in this area now than I was a year ago. Because of this, Heather has recommended in-home behavior therapy again, to help me learn how to teach Raquel these things. Since Raqi has been around so many people due to all of her therapies, hospital visits, respite workers, etc., she really doesn't know what a "stranger" is. In this day and age, it is very important that she learns this. She has never just walked up to someone but I feel she would be trusting of too many people should a certain situation arise. We will also be working on street safety in regards to cars, animals, etc. This won't be happening anytime soon - we're at least 2-3 months out - but I'll take it. And it looks like our last behavior therapist, Mike, will be assigned to us. Yay! I really like him, and he was able to talk to my Mike guy-to-guy, which was a good thing. I'll just need to remember to add him in my phone with his full last name. I've answered my cell phone, "Hey Babe!" a few times, and sent text messages by mistake, once asking him to bring home dinner. He didn't. :)

The following Thursday, I had my annual IEP with the school district. This is the one meeting that I absolutely dread - where everyone basically doesn't believe me and thinks Raquel can't do any of the things I say (or previous therapists have said) that she can do. It's quite annoying. I've posted before about how I don't get along with a couple district reps, have had them replaced, etc. Sadly, the vast majority of times, the people sitting in front of me don't really feel Mother-Knows-Best. That bothers me so much, not because I buy into it - which I never will - but because I think about all the other families that DO. As a parent of a special one, all you have is hope, and I absolutely REFUSE to let anyone, no matter what their job title, take that away from me.

The IEP actually went pretty well. It was nice seeing the APE & OT therapists that I haven't seen since her kindergarten transition meeting over 6 months ago. The general education teacher was dismissed almost immediately because I didn't have any questions, and the behavior therapist attended but wasn't really needed because we no longer have a behavior support plan in place.

The one person I had the most questions for and looked forward to getting the most input from was Jane, her speech therapist. I have met Jane on several occasions when dropping Raquel off at school. She's extremely knowlegable and spoke to me in length about why not to pursue sign-language, the positive effects of PECS, etc. She's even taught to some degree at Gabby's school. Unfortunately, Jane had some kind of scheduling conflict and could only stay 30 minutes. She started the IEP without everyone in attendance, was obviously very rushed, and actually - after working with Raquel less than a handful of times in probably not the best conditions - started out by telling me, flat out, that she never thought Raquel would ever be able to verbally communicate. When I told her I completely disagreed, she said I was entitled to feeling that, but that was her professional opinion - and then just went on about starting up a PECS program. Got to say, I wasn't expecting that one. And I was pretty disappointed. Not disappointed because I couldn't take what she was saying. I just thought that it came from left field, considering she doesn't even know her. She doesn't know how stubborn Raquel is, and that if Raquel doesn't know someone, she tends to be a bit shy and takes awhile to open up. But maybe she doesn't have the ability to be "shy" in her professional opinion, either. The rest of the IEP was implementing new goals, discussing her in-home schooling, and signing paperwork. Nothing major at all.

That night, after I put Raquel down to bed, Gabby asked how the meeting went. She's gone with me to them before and knows the drill. If you say the word "IEP", she typically rolls her eyes. When I told her what Jane said about Raquel never talking, she got a little quiet and sat there for a minute thinking. Then she said, "Mom. She talks to us. Isn't that all that really matters?"

Yes, Gabby, it is. And thank you for reminding me of that.

And Then - A Shellfish Allergic Reaction

Overall, Raquel has been doing really well since my last post over a month ago. I am going to stop posting about how seizures are reducing because everytime I do, they return. They have definitely improved since taking her out of school but are still very much a part of our reality. Fortunately for her (us), they are manageable right now. I hear from parents all the time that have kids who experience 10, 20, 50+ seizures a day. I cannot imagine what that might be like. Actually, I think I can, and that's why it is so humbling. Who am I to complain? I can't and don't. I just roll with it.

Before I update what has happened since my last post - a lot of good things! - I just want to back up a couple days...

Sunday morning, Raquel had one of the worst seizures in a LONG time. She started to turn blue (yes, I freaked out), and Mike told me to call 911. This seizure lasted probably 3-4 minutes. As soon as I grabbed the phone to dial, she came out of it and her coloring got better. I then gave her all of her regular meds along with 1/2 extra Keppra pill. The previous night I don't think I got all of the meds in her, so her medication levels were probably off. That's why I think it was so bad. Besides being very tired, she had a pretty good day.

Then on Monday night, Mike BBQ'd some lobster & steak (thank you, Mom & Dad!). I never give Raquel any shellfish, mangos, honey, nuts, etc. - any possible allergic reaction triggers - so I made sure not to give her any lobster. After dinner, she had her bath and I noticed that her eyes became very watery, itchy, and bloodshot. I immediately took her out of the bath and got her dressed. Then her face started to swell up. Apparently what happened was when Mike took the lobster off of the BBQ, he set it on top of the steak. Although the amount of "drippings" she must have consumed from that was very slight, she obviously cannot tolerate it. I am so thankful that I didn't give her a little piece to taste like I wanted to. That would have easily required the use of her Epi-Pen, or put her back into Children's Hospital, a place I love but don't wish her to be admitted to again any time soon. Sometimes you just find out things the hard way.

So, after Monday night's events, I've promised myself to be a lot more diligent about making sure I have a "safety pack" for Raquel - and all of us for that matter. I have to make sure I have the Epi-Pen, the Benadryl, the Valium if cluster seizures happen, not to mention a supply of meds. It's so easy to get in the car and run down the street to the grocery store and not think another thing about it. But a lot can happen when you are outside of your home, even if it's just a mile.

As far as the Keto Diet goes, we've pretty much implemented it, however, I've been unable to reach our nutritionist since she gave me the week 1 meal plan in November. Don't know what the deal is - she couldn't have stressed more about communication being key - but maybe the holidays just got in the way. I'll try again come January and really want to move forward with this. She still has applesauce to take her meds, and I'm still letting her have a bit of juice, but besides that, she has the allowed low-carb breads, shirataki noodles instead of pasta, cauliflower mashed potatoes, etc. She doesn't seem to be deprived or missing all the carbs she was previously consuming. And we are just keeping favorite items - like the sweet potatoes - out of the house. I would feel really bad making them for the rest of us and then simply not giving any to my rock star.

It is still very much a learning curve, and to cook things is a real adjustment. The weighing, measuring, calculating makes my head spin at times. Math was never my favorite subject in school, so that's not helping matters any. It is making Gabby want to study harder in math. She always says that she'll take care of her sister if something happens to me, and I don't doubt that for a second.

I am very happy to report that her in-home schooling has started. I'm even happier to report that her teacher is Miss Crystal - her actual kindergarten teacher!! Having her here working with her is a dream come true. It is so nice to see Raquel respond to her in a positive way and for Crystal to see a whole different side of Raquel. We've already re-defined the IEP goals, and I'm actually looking forward to the annual IEP on January 5th because Crystal will be there and will be able to provide input that the district will listen to.

Crystal in the house daily is so much different than in-home therapy was. I don't have to sit in with her unless I want to, and she works with her on academic skills and doesn't try to get her aggitated to provoke behaviors. :) We've discussed implementing a PECS program as well as a transition station, so that will be something to work on come January. Besides the academic skills, Crystal also works on speech and occupational therapy, and I just got a mini-trampoline for them to use during music time, which will help strengthen her leg muscles. But shhhh, it's from Santa. :)

We are also checking into the iPad program that has been very successful with some Autistic kids as well as those that are lacking communication skills for other reasons. It's been shown that it allows kids to effectively express their needs/emotions by touching a button. I would love to have Crystal be able to incorporate this in with her teaching.

Overall, I'm very pleased with how things are going. It's still a day to day thing, but I'm happy to say that we are experiencing more positive days than negative ones.

Keto Diet Still Pending

I really had every intention of starting Raquel on the Ketogenic Diet on November 1st as planned. But I can honestly say that gearing up for this thing is taking a little bit more work than I anticipated. Yes, I've got the scale, the books, the list of foods - and meal plans for the initial week, which are kinda hard to decipher. But oh my gosh!! There's just so much to take in and change. I'm very overwhelmed right now about how to deal with the process because the household is going to be turned upside down once this goes into effect.

So, let me just back up a bit and post a couple Halloween pictures. This year, I took the girls to the local mall for trick-or-treating and have to say that it was a great experience. Safety wasn't an issue, the weather wasn't a factor, and we could've really made a night out of it by going out to dinner or bowling or something once they stopped handing out candy.

Here's my happy little pirate. Arrr!!!



And her big sister, the genie.

Good times. We continue to make the best of things because, to quote a special friend, "that's how we roll."

Okay, back to the diet situation. For starters:

• The meal proportions are large and she has to eat everything. Raquel likes to eat small frequent meals, not so much 3 big ones plus 2 snacks. She can eat here and there all day long. Not on this diet. Everything is weighed, calculated, and measured.
  


• She loves her juice. I dilute it with water, but this is no longer a consumable item. Water is the preference, but who seriously wants to drink nothing but water all day? - and I'm a huge water fan. And water is critical in this diet to help prevent the development of kidney stones.
  


• I'm having issues with using artificial sweeteners. She can have a Diet Sprite but no apple juice? I get the idea behind it, but don't particularly agree with that being a beverage of choice. She can have some sugar free flavored water, but again, we're going back to the artificial sweeteners. I think the carb-free Stevia is going to be my new friend. I just need to figure out how to use it.
  


• The medications in pill form are a challenge. I'm used to squirting the liquid meds in her mouth with a syringe type thing. The pills taste bitter and the only thing I can do to get them in her is to hide them in applesauce or yogurt - which are, of course, two more items she can no longer have. Fortunately, I'm getting some good feedback from my Keto support group on ways to do this. It'll just be a work in progress. If I keep her on liquid meds, that does something to her carbohydrate load and more calculations are required and blah, blah, blah - I'm going to make the pill thing work at this point.
  


• I still need to get the sugar free multi-vitamins, shampoo, lotions, toothpaste. I never realized sugar was in all this stuff until I started looking for sugar-free brands. Sugar needs to be in shampoo why?
  


• Just got the urine sample testers today. But there was no need for them before because there's really no reason to test her since we haven't implemented the diet.

On the positive side, she has suddenly started liking eggs. Fried, scrambled, poached, you name it. She never would touch those things before. I've started to reduce the amount of "bad" carbs she is consuming and replace them with more preferred ones. I've located steel-cut oatmeal and have an idea of how to cook them. She continues to enjoy the tofu Shirataki noodles, which she'll now eat for spaghetti - as soon as I figure out how to make the keto friendly tomato sauce. :)

Now that she is on pill forms of her meds, it really is nice. I only have to give them to her twice a day instead of 4 times. There's been an adjustment period - she gets tired earlier than usual because she's getting a full dose in the morning and it's not split up - but once I give it to her at breakfast, I don't have to worry about it until bedtime, which is a really great thing. I started her on the pill format on Monday - and we've had 3 seizure free days. I'll take it. I'll take any day without a seizure. Any afternoon for that matter because they've been pretty frequent these days.

Hoping to start in-home academics/therapy during the intial diet phase very soon. That's a paperwork thing at this point but am pretty sure it'll happen. Raquel has her next follow-up with her neurologist on January 23rd.

Thanks go out to the best friends and family in the world for your constant love, support, and encouragement. It means the world knowing you are there for me, give me strength, and don't judge. You all know who you are, and you rock. xoxo

Keto Diet Starts November 1st

We met with the Ketogenic Nutritionist this last Wednesday to discuss the diet specifics in more detail. Vanessa still recommends the Low Glycemic Index Treatment (LGIT) part of it, but it is definitely a lot more restrictive than I originally thought it would be. Raquel fortunately won't have to be admitted to the hospital for the supervised fasting in order to get the ketones in her optimal state. Instead, this will be done at home, and there is no true fast - we simply begin removing (A LOT) of certain foods from her diet and replacing them with new ones. I'll need to test her urine twice per day, weigh and measure food, monitor her weight, and keep very diligent records of everything.

The reason we aren't starting the diet before November 1st is because there are things that need to be put in place before then. For starters, I need to get food scales, measuring cups, books, urine testers, etc. I also need to take her back to the hospital for another full bloodwork panel, and Vanessa needs to discuss everything with Dr. Mower. The nutritionist and neurologist work side-by-side with this. I also need to get all of Raquel's medications in pill form. She can no longer take liquid meds of any kind due to the glucose content in them. I will need to purchase "keto friendly" toothpaste, soap, lotion, shampoo, conditioner, detergent, etc. I can honestly say that I pretty much thought I would leave the consultation with a list of foods she could and couldn't have, how much of what, and be done with it. So not the case. This is definitely a HUGE commitment. But, if she responds well to it and seizures decrease and medications can be removed, it will be well worth the effort.

And then we discussed some of her favorite food items that must be entirely removed: pasta, sweet potatoes, baked potatoes, corn, bananas, cantalope, kiwi, pineapple, and, gulp ... her beloved watermelon. And no fruit juices at all. Thankfully, she can still have milk, yogurt, cheese, beans, pears, grapes, and most vegetables. And, she can have pretty much all meats. She does like the tofu shirataki noodles so I can always make spaghetti for her with that. And there is something called "miracle noodles" that I'm told makes a really good macaroni-n-cheese. Basically any carbohydrate she consumes must have a glycemic index of less than 50. And I'm discovering that most of what she east is well above this.

Vanessa says that it typically takes about 3 weeks on the diet before before you are able to detect ketones in the blood and urine, which is why I will be testing her daily. Until Raquel reaches her state of ketosis, Vanessa will be sending me meal plans and snacks that she wants me to consistently use for this initial phase. Once in ketosis, we can begin adding more foods to the mix and we'll have a bit more flexibility. She will have 3 meals per day, including 2 snacks. These need to be given on a routine schedule with not much fluctuation in the times. She will also need to take vitamins and supplements to keep her healthy and strong.

There's a lot to learn, a lot to take in, and a lot to gear up for. My biggest concern is Mike. Raquel always wants to eat what her dad is eating, so a little nibble here and there from his sandwich or plate like he's used to giving her will no longer work when the food scale comes into play. I have to monitor every morsel she eats and drinks and not stray from that. One little piece can throw off her ketosis. This basically means I will need to meal plan, meal plan, meal plan - and have everything measured in its containers and once they are empty, she's done for that particular meal. And then make sure Gabby & Mike get the importance of that.

I will pretty much be dealing with Vanessa on a regular basis. I see her again in mid-December, which she is predicting will be about six weeks into the diet - and three weeks after she has reached ketosis. More blood work will be done for evaluation at this time. I have committed to try this diet for a 3 month initial period. We should be able to notice changes by this time. If she appears to be responding in a positive way, we will keep her on the diet for two years. After the two years, the diet is weaned slowly.

On then Banzel side, Raquel seems to be responding pretty well. No seizures since I started gearing up to Dr. Mower's requested doseage. That's only been a few days, but I'll take it. It does appear to throw her sleep off - if she naps at all, it's very brief, maybe 20 minutes. But I'll take that as well. And she's staying up a bit later than she usually does. Hopefully this is only an adjustment period. She also has developed a rash, which I'm told is okay for this med. As long as she doesn't end up for a week in ER, I'm happy with it at this point. :)

As far as her school goes, I have decided to keep her out and plan on doing so until after the first of the year. Now that this new diet is starting up, and the holidays are approaching, I feel it is in her best interest to stay out of school until we can tell how she responds. If she gets sick, ketosis can also be thrown off, so that is another concern I have with the school - not to mention her getting a cookie here and there, which would inevitably happen in her class.

I'm happy as I can be right now. And I plan on cooking all of Raquel's favorite foods this week. November 1st will be her very soon. We'll see where our journey takes us after that. But I'm thinking it's going to be onwards and upwards. Again, I have big hopes for my girl!

The Oak Tree

This was shared by another Mom going down a similar path as me, and many, many others. Thought it was worth posting.

The Oak Tree
by Johnny Ray Ryder Jr

A mighty wind blew night and day
It stole the oak tree's leaves away
Then snapped its boughs and pulled its bark
Until the oak was tired and stark

But still the oak tree held its ground
While other trees fell all around
The weary wind gave up and spoke
How can you still be standing, Oak?

The oak tree said, I know that you
Can break each branch of mine in two
Carry every leaf away
Shake my limbs and make me sway

But I have roots stretched in the Earth
Growing stronger since my birth
You'll never touch them, for you see
They are the deepest part of me

Until today, I wasn't sure
Of just how much I could endure
But now I've found, with thanks to you
I'm stronger than I ever knew

And Then There Is Banzel

It took over a week to get the medication since Dr. Mower added Banzel to Raquel's anti-convulsant schedule. After we spoke the last time I posted, he immediately called the prescription in. I was told by the pharmacy the next day that I was denied the medication, and it went back and forth, and back and forth between my health insurance company and Dr. Mower's office for about a week. My insurance wanted Dr. Mower to substitute Banzel with a less expensive medication. Remember, they start with the cheapest drug possible and then add more expensive, more appropriate drugs in the mix after unsuccessful trials of the cheap one are determined to be ineffective. Yes, just my opinion but I've been dealing with this nonsense for several years now. Dr. Mower said that if he wanted Raquel on a different medication, he would have prescribed that. Just more pharmaceutical/insurance drama. But Dr. Mower holds his own. My kind of doctor.

I got a letter in the mail yesterday from my health insurance that stated the reason for them denying Raquel the Banzel: "After an evaluation for medical necessity, your request for Banzel cannot be approved due to an inadequate trial of Lamotrigine (Lamictal)."

Really?? I thought 2+ weeks on Lamictal was pretty significant - especially considering she ended up in ER and at Children's Hospital for a week due to the life threatening allergic side effect called Stephen Johnson's Syndrome. I guess they had no problem paying the hospital bill and want to do it again. Where's the logic here?

Today, I picked up the Banzel and am hoping and praying she responds well to it. It's one of the newer, more expensive mediciations out there. I have a journal and am documenting everything - all behaviors, eating changes, mood changes, etc. She had her first dose this morning at 11am, and I did notice she got really tired about 30 minutes later, and her walking became very unstable. I'm sure there will be an adjustment period. She is still on her regular Keppra schedule, the Banzel is in addition to this, so it's typical for her to experience different side effects until her body adjusts. At this point, I'm just hoping for the best. She really is such a trooper.

Unfortunately, due to the increase in seizure activity, particularly happening at school, I've chosen to pull her out of kindergarten until she is more stable. I spoke with her teacher yesterday and, if all goes well Banzel wise, will try to start her back up in class this coming Monday, October 10th. I'll just have to see how the rest of the week goes. But I've got high hopes for my Rock Star. :)

More Medication Changes

I spoke with Raquel's neurologist this afternoon. He obviously wasn't happy with what I was reporting, and feels that Keppra is no longer working at its full effect due to the increase in Raquel's seizure activity in such a short amount of time. Because of this, Dr. Mower put in the order for another anti-convulsant called Banzel. Side effects are like Keppra - on the light side - and nothing that should put her back in the emergency room for a week like we experienced with Lamictal a few months back.

The reason he wants to add this new medication instead of waiting until after the Ketogenic Diet is implemented next month, is because he says that the diet can take several weeks before changes are noticeable, and he did not feel, because of such an increase and them occuring out of nowhere (not just when she's stressed or overly tired anymore), this was the route to go. If we feel she is responding well to the diet, Banzel will be the first drug to be removed.

I was also instructed by Dr. Mower that if more head drop seizures occur, and are frequent like they were in the car the other day, I need to immediately give her the high dose of valium and to treat these exactly like I would if she was having "cluster" seizures.

In the meantime, since she'll be on the Low Glycemic Index Treatment diet to start with, I'm going to start removing the bad carbs she's been consuming, and replace them with gluten free comparable items. There are so many more products readily available now than when Raquel was previously on the GFCF diet, this will be much easier to do.