Thursday, September 29, 2016

3 Day EEG

Last year (in 2015), Chelsea did a short sleep-deprivation EEG. EEGs scan the brain for seizure activity. It turned out that Chelsea had been having complex partial seizures every 20-30 seconds. Now, it has been nearly a year with Chelsea on medication, and we wanted to see how she is doing now. Our insurance would only cover a 3 day EEG, which worked for us- I was so excited to have an opportunity to see what Chelsea's brain is doing on a typical day.

Miss Chels all hooked up and signing "kitty"

The Set-Up
Our set-up for the EEG was pretty easy:

1. No caffeine/ stimulants for 24 hours before

2. Shampoo hair the night before (no conditioner) and dry. You need very clean, dry hair so the electrodes will stick right

3. Clean the house (pretend like we are nice and tidy people all the time, ya know- since we will be under 72 hours of surveillance)

4. Put Chelsea in a button-up shirt, since she won't be able to put anything over her head because of the hookup. (Dirty secret- we kept her in the same shirt all 3 days)

Chelsea with her hookup technician

Visit #1
The technician came and hooked up Chelsea to her electrodes, and the wires went into a little backpack that she had to carry around for 3 days. I saved up Chelsea's TV time, so she was glued to "The Little Mermaid" during the hookup, which took nearly three hours! I highly recommend that- the second the movie turned off, she started kicking and screaming and it took all my strength to hold her steady!

The nurse also set up a video camera and laptop that was controlled by a remote technician, to monitor Chelsea's brain activity, sharpen image if needed, etc. Our camera went inexplicably fuzzy one night, and the technician was able to fix it.

The laptop with video feed

We did all sorts of activities, avoiding roughhouse/ outside play, since she wasn't allowed to sweat or leave the house for these 3 days. Some of the things we did:

1. Legos

2. Read books!!! Lots and lots and LOTS of books!

3. Freeze dance with ribbons

4. Puzzles

5. Blocks- cardboard building blocks, wooden blocks, Lincoln logs, etc.

6. Draw pictures/ do coloring books

7. Play with stuffed animals in a parachute

8. Have a tea party!

9. Watch a favorite movie together (but no snacks! Don't eat unless it is strictly mealtime!)

10. Have a puppet show!

11. Build a Mr. Potato Head

12. Board Games

13. Do learning time (work on letters, counting)

14. Pop bubbles together

15. Stickers

Journal/ Gelling

In addition to keeping Chelsea in one room, we needed to keep track of anytime Chelsea had something that looked like a seizure, when she woke up, ate, and went to sleep. We timed them, so we would be able to go back through and check what she looked like when the seizure was happening.

When the seizure (or what you suspect is a seizure) happens, there is a little button you push on the backpack. Doing it creates a digital "bookmark" so the technician can review the brain activity at that point.

One version of the monitor in the backpack

I also filled the electrode gel twice a day, once in the morning, and once at night, about 12 hours apart. It was super nerve-wracking the first time, and it must have taken me 30 minutes! But I got more and more confident each time, so by the end, it only took me 5 minutes to get all 23 electrodes.

Visit #2
The take off wire visit was really quick, maybe 20-30 minutes. The technician came back, collected the journal information, packed up the laptop and camera, then used a solution to take off the electrodes. Chelsea did NOT like that part, but no hair was pulled out, so I'm assuming it wasn't super painful, just unpleasant to be pinned down and nasty smelling stuff doused in your hair! 

This part deserves it's own sections- the glue removal from hair!!! Goodness to Betsy, this stuff was IMPOSSIBLE to get out!!!! They said to use conditioner, and I went through an entire bottle of conditioner trying to get it to soften and get out. When I tried a fine tooth comb, Chelsea screamed so loudly I was shocked that the neighbors didn't call the police- it sounded like a murder!

Not even a tenth of the amount of conditioner used!!!

SO- forget the conditioner! I asked what solution they used, and they said acetone. I then remembered- acetone is NAIL POLISH REMOVER!!! Boom, I used cotton balls doused in nail polish remover, and it worked like a dream! So my tip is to get nail polish remover and go to town with it!

Good luck with your child's EEG!!!!

Monday, September 19, 2016

Saving Your Sanity

I am a very Type A personality- I want things done, and I want them done NOW. In a lot of ways, that is an awesome thing! But as a parent, especially as a parent of a special needs child, that can be extremely frustrating! Chelsea thinks and moves slowly, which works for her- she takes time to smell the roses, and that is also wonderful!

BUT- on the days where we have a ton to get done and I feel stressed if I DON'T get things done, I have a few tricks that I use to lower my stress and still get things done.

Freezer Meals
About once a week, or once every other week, I make an extra casserole or soup and freeze it. That way, I have a meal to pull out and heat up on the days that I am getting overwhelmed.

Aluminum pans ROCK for less dishes!

Have a Candy Stash
My husband and I jokingly call this our "Crime Prevention" category when we do our budget. On the days when I feel my blood pressure skyrocketing, I tell myself that if I can control my temper, I get some chocolate! Good deal to me!

Hoard Kids' TV Time
Everyone who knows me knows that I am NOT a fan of TV all the time. My kids are limited to 30-60 minutes of educational DVDs daily (no commercials!). They like Signing Time and Super Why best. BUT- on days when we are sick, or hooked up to an EEG machine (like today), or whatever, I feel okay cheating up to 2 Disney movies without thinking their brains are rotten.

Have a Support Network
Easier said than done, I know!!! No one wants to watch your kid because they are "too difficult", your friends don't "get it", and a plethora of other things. BUT I love, love, love the network I have! I have an aunt that has 2 autistic kids and she knows exactly what I am going through and has saved me many times! My sister and dad are phenomenal to call when I need to hear "you are still a great mom", love my church, and I have a babysitter that I think is an alien because she is just THAT good with my kids.

Pre-Prep Snacks
One of the days when Chelsea is at school, I go grocery shopping with my little man, and then try and prep as many snacks as I can right when we get home. Baggies of veggies with mini cups of hummus, cut up fruit, make meat rollups, whatever. That way, we avoid the hungry meltdowns by having snacks that are ready and available.

Exercise (in spurts)
I have a degree in Exercise Physiology. 15 years of gymnastics competition/ coaching experience, nutrition courses... I STILL cannot find a couple hours daily to go to the gym with a SATB2 kiddo at home. So, I do mini workouts throughout the day. I usually run it like this- do something with the kids (speech practice, play dinosaurs), then do 100 crunches, or 40 pushups. PLUS, when you exercise in small doses throughout the day, your metabolism stays up!

Have Routines
This saves me on a daily basis. We have routines for many reasons, like Chelsea knowing what to expect. That makes her feel very smart, like she can tell Mommy what I "forgot" when I ask what next. Also, it helps me remember things. Same thing with To-Do Lists

Organize, Organize, Organize!!!
With this one, it is really, really difficult at the time- it is freaking hard to get all your child's insurance, school, therapy, and medical papers in order. BUT it is sooooo worth it! When I go to doctor appointments and they ask for the contact information of all doctors who have worked with her, boom- it's ready! Here was the blog on Organizing and Navigating Specialists

Have an "Escape"
Everyone needs breaks, and how you use those breaks depends solely on you! For me, I like watching an episode of Star Trek before bed with my husband (yeah, yeah, we are big time nerds), or any comedy- never depressing things. I'd rather laugh than cry.

Wednesday, September 7, 2016


Frequently Asked Questions about SATB2

1. Is there a support group for this?
Yes, yes, yes!!! We have an incredible facebook support group! It is a closed group- only parents (and involved extended family members) of an SATB2 child are allowed in, because we do discuss all sorts of issues that come up with our SATB2 cuties.

We share all sorts of happy success stories, questions, experiences, AND are even planning a big get-together in the summer of 2017!!! Here is the link- SATB2 Syndrome and Glass Syndrome

2. Will my child ever talk or communicate with me?
Honestly, it could go either way. There are kids who have no speech, sign, or communication. BUT, there are also kids who can use iPads to communicate, use sign language, and some do have some functional speech!!!

In my opinion, early intervention is crucial, and sticking to speech therapy (or signing, or using a communication device) is CRITICAL! Even when you feel like there have been zero results! My SATB2 sweetie didn't say her first word- "Mama" until about 18 months of speech therapy. $10,000 is a hefty price tag to pay for 5 words. But it gets so much easier as they go along!

An example of an iPad communication app

3. What is the normal life expectancy for this syndrome?
As far as we can tell, these children will have just as long a life as anyone else. There haven't been many people diagnosed that are older than 20-30, so it is very difficult to tell.

4. What medical problems are associated with this syndrome?
Seizures (see Silent Seizures- kids won't always convulse!), osteopenia (low bone density), dental problems- missing teeth, crowded teeth, poor tooth quality, etc, high or cleft palate (roof of the mouth), intellectual impairment (low IQ). I explain them in more depth HERE.

Most SATB2 kids have a deletion at 2q33.1

5. Will my child EVER be potty trained?
Hopefully so!!! I have been surprised at how many kids are successfully using the potty since I joined the facebook group! Before, I feel so much despair- I had a 2 year old son that I trained in a weekend, but months and months did nothing for Chelsea.

Fortunately, I didn't give up and she is now in big girl underwear all the time!!! I did a series on how I potty trained her- the preparation, activities for the potty, first 3 days, and the conclusion. Prepare yourself now- it will be a long haul, but SOOOOO worth it!!! I also recommend a secret chocolate stash (since I don't drink) for those hard days!

6. My kid eats ALL the time, but is super skinny! Is that normal?
Yep, very normal for SATB2!!! My little girl is teeny tiny, but eats almost non-stop. Healthy otherwise, but it wouldn't matter if I fed her cheesecake wrapped in bacon with chocolate milkshakes every day- that girl won't gain weight!!!

Not my picture- Chelsea's feet are skin and bone

7. What sort of behavior issues should we expect as my SATB2 child ages?

Prepare yourself for tantrums, screaming, sensory meltdowns, hysterics, oh the joy!!! Most of the parents I hear talking about this say it really kicks in around 6-8 years old, and that they recommend a behavior consult. We have done some ABA with our little girl, and she is usually very well behaved in public, but has horrific meltdowns at home.

Thursday, September 1, 2016

Neurologist Visit

I already blogged about Silent Seizures, and was talking to some people about what to prepare for when they go to a neurologist visit. Here are a couple ideas!

To Bring to the Visit:
  • A list of all medications, supplements, and vitamins
  • A list of all symptoms, no matter if they seem related to seizures or not. Difficulty gaining weight? Too much sleep? Too little? Irritability? Write them all down!
  • Your list of questions

Tracking Chart:
  • For a tracking chart, I tried to track symptoms for about a week (and sent the paper with her to school and therapy)
  • See how often seizure symptoms occur
  • Describe each seizure (hard blinking, vacancy in eyes, blank stare, "zoning out", disorientation, etc)
  • How long did each episode last? (It may just be a few seconds)
  • Is your child aware of the seizures? (as far as you can tell)
This if for a grand mal seizure

Sample Questions:
  • What is the most likely cause of these symptoms/ seizures? What are other possibilities?
  • Can you explain to me, simply, what is going on?
  • Is an MRI recommended? Genetic testing?
  • Is this temporary, or long-lasting? What is the likelihood that these seizures will be "outgrown"?
  • What treatments are available, and what do you recommend?
  • Are there alternatives to this treatment? Is there a generic brand that is cheaper and just as effective for medication?
  • How long will the medication need to be taken? (frequency, dosage, etc)
  • How will we know if the treatment is working if I can't always tell seizures are happening?
  • What are the side effects from this medication?
  • Could my child develop grand mal (convulsive) seizures?
  • Are there any activity restrictions?
  • Do you have a brochure/ printed material I could have?
  • What websites do you recommend for me to do more research?