We're starting to hate the roller coaster

>> Tuesday, July 30, 2013

In 4 days, Bug had only 3 seizures...less than one a day.

Then the shoe dropped and he had 4. In one day. 4.

So, we start over. We write it off to something, anything, to help us feel a bit better and we move on.

This morning, I was up at 6:00am feeding Aiden and at 6:45am I heard: THUD! Bug had fallen out of bed. I played back the video to make sure it wasn't seizure related (it wasn't), got dressed, grabbed his helmet and set out to find him.

I didn't have to go far. He was in the living room, on the couch. He smiled at me and I crawled in behind him. He placed his head on my chest and went back to sleep. It was lovely. Until 7:17.

That was his first seizure.

I can't explain to anyone how it feels to be completely relaxed, cuddling, and then feel that tension of the muscles tightening up. Of feeling that any control you had in your happiness of the calm, almost normal moment, of cuddling with your child, was taken away. He seized for only a few seconds and then tried to go back to sleep. By this time, Ava was awake and downstairs and there was a flurry of activity.

Which lead to another, much larger seizure, 15 minutes later. A 90 second Tonic/Clonic. And there was another THUD: my heart hitting the floor. One would think I would be used to it, but I am not. I don't know that I ever will be and that may be a good thing. It means I will continue to battle this, to not accept that this is 'as good as it gets', that I will get my smiling, happy boy back. Someday. Not today. But someday.

No more seizures today Buddy. No more.


What's that you say? Abnormal?

>> Wednesday, July 24, 2013

I'm taking a shower, minding my own business and the phone rings.

Let's go back to Arkansas first.

After we got settled into the EEG at Arkansas Children's Hospital, and we started the IVIg, life seemed pretty surreal.

Here we were, south of the Mason Dixon getting the treatment, that for over a year, I had been trying to secure for Bug. It didn't seem to be real. Not sure why, I always get what I want. Phhfft.

The first night was uneventful and the second was as well but the third...sucked. Turns out Bug was constipated. I had realized it the evening of the second infusion and made the comment that we MIGHT want to help him out in that department. I didn't follow it up though and so on the third day he ate a HUGE breakfast and no lunch. He slept.  Uh oh. That evening he didn't touch his dinner and I started to worry it was the IVIg. Then, he puked. A lot. It was his breakfast. I didn't worry about the IVIg when I saw it was mostly his breakfast. He was NOT digesting it because he was 'full up'.

So we tried to give him Miralax. I told Glenn: You might not want to give him so much so fast, I am not sure he is done. Glenn looked at me and gave him another syringe. It came back to haunt him. Not that I am happy about that but...giggle.

The next two days were pretty mellow only Bug started almost saying things. We thought it was our imagination at first but then he kept doing it...of course he kept seizing too. That part I wish we had left in Arkansas but we can be patient for a few more months.

We left it with: They will set up the IVIg with PCMC and call us about the test results (hint, hint), then we may arrange to come back in two months or so. Thanks all around and two days home.

Driving through Colorado all I kept thinking was: Cannabis. I wonder.

That was over two weeks ago. We have heard nothing since then.

Until today.

I got out of the shower and answered the phone, it was Meg from Arkansas Children's Hospital. She was letting me know that his labs were abnormal. What was that you said? Abnormal? NOTHING has ever been abnormal before. Hooray!

SO, with these abnormal values, Dr. Frye likes to verify them with another test. OK. We can do that. More blood coming right up! Well, not immediately. They will fax the test to AMFOHO and then we will go give them another sample (please don't be urine, please don't be urine).

I asked about the IVIg while I had her and she said she would find out and get back to me. She thought they had faxed it, and I am sure they probably did, PCMC is just that way sometimes. Sad to say: we are used to it. But, get back to me, she did. The email asked me where we wanted the IVIg done. Oh hooray! And yet...poor Bug a boo.

Can't wait for the re-do and the results! A few more weeks! Eeek.


But wait...there's more

>> Thursday, July 4, 2013

John, the research assistant called a little shy of 8am.

I was not happy. We had been told to be there at 10:30 but John changed that. He wanted us there...oh at 8am. Not...going...to...happen.

And didn't.

Surprisingly, Glenn was able to collect the urine specimen. Shocking, I know but an entire specimen cup full was achieved. Well done! And it was a good thing too. We got to the hospital at 9:20am and John met us in the lobby. He escorted us to the lab and looked over the blood work request.

I wonder if Dr. Frye wants to have more tests...this looks a little weak. So, John called. Which was a bummer for Bug because then they had to secure 40ml of blood.

Once that was done we went to breakfast (which was over and had to settle for lunch) and then to John's research office. It was a very humble room. That means small.

John explained the reason for the study and the, almost excitement, to get Bug signed up. He said: Dr, Frye called him at 5:15 and told him he had to get Bug signed up immediately. That's why they added more blood work.  He told us that they are recruiting 400 children, 50 with ASD and Mito, 50 with just ASD, 50 with Mito, 50 with Mito symptoms but no Mito...etc...then, they were securing urine and blood in the hopes of developing a urine test to identify ASD. Wow. Cool. I told him I could get all 400 participants for him in a matter of a week. He laughed. We didn't and explained that Utah has a much higher incidence of Autism than the national average, and that I know a few people. This part interested him greatly. We will see where that goes.

After the explanation and the paperwork signing, we went into another room and they filmed Bug while we were asked questions. This part was supposed to take several hours...it took us less than an hour. This is simply because Bug has such poor communication skills <read NO communication skills> and because his behavior is really mild. He is not aggressive or moody, he just is.

Once that was done, we proceeded to admitting. They did not have him listed. Uh oh. So we waited about 30 minutes and then we got our little bar code (no kidding a kid card with a bar code on it) and where heading up to the 4th floor. They have escorts. We were escorted to our room and then the nurse came in, then the tech, then the Neuro and the Assistants. We were over run with people. It was kinda cool. NO waiting.

Bug was hooked up to the EEG using GLUE, cooled and set with air. This did not make him happy. She took a half inch square of gauze, dipped it in glue, set it over the lead and injected air into the lead until the gauze and glue were dry. It was interesting, he hated it.

He was on EEG for a few hours when he had his first seizure. A few hours after that, Glenn accidentally pulled a lead off and, very quickly, put it back on. He was so fast, the EEG techs didn't see it as an anomaly. Very funny.

At 7:30 he was supposed to get Benadryl and Ibuprofen and then at 8:00 the IVIg. That didn't happen. He got the Benadryl and Motrin at 8:30 with his regular medications and the IVIg was started at 9:00.

He did really well with it, no reactions, and it was infused and complete about 11:00.

Since that time, he has had 4 seizures. The Neuro suggested he has Lennox Gestaut Syndrome. When Glenn told her that Dr. Charlotte Dravet didn't hink so, she backed off a little. :) Still..it's out there. It's something we have heard before, LGS and West's Syndrome, also BRE (Benign Rolandic Epilepsy) Angelman's Syndrome, Juvenile Myoclonic Epilepsy, Fragile X Syndrome and a few others. We will have to wait until tomorrow for the EEG to be read by the Neurologist that usually reads those things, but she was leaning toward LGS. She wasn't sure how LGS worked with CFD - his official diagnosis- and FRa, so it's up in the air.

Meanwhile, Bug is a little tired today, but after not sleeping well, that's not surprising. He is hanging in there, a little twitchy and drooling but...hanging in there.



>> Tuesday, July 2, 2013

This day we have waited for, when it finally arrived, made us late. BUT we still checked in right on time. I would be lying if I didn't say I was relieved to find his name on the books when we checked in. I was thrilled! Especially because I didn't have any of his ACH (Arkansas Children's Hospital) paperwork and had to call the hospital to find out where the good Dr saw his patients. Did NOT bode well.

We checked in at 10:00, were called to registration at 10:05 and were in the room at 10:25am.
I should add a few impressive things:

First: They weighed him accurately. That's right, accurately. Accurate because they have a really spiffy chair that the children sit in that weighs them.

Second: They got an accurate blood pressure. That's because while he was sitting in the weigh-in chair, she wrapped the BP cuff around his leg. Within moments, the machine beeped and we had his, rather high, blood pressure.

Third: They measured his height in less than 10 minutes. In fact, it took less than 15 seconds. Their height measuring stick is digital. DIGITAL.

His total check in time was a little over two minutes and it was all accurate. Cool.

So, we went to The Room. For 5 hours. For....5....hours. Of course, we would have waited 5 days but still...it was a new record. If it had been in the ER it would have been a new record as well: Shortest time to treatment but we weren't in the ER.

In that time, we talked with Keira, and two dietitians, who decided he probably needed a calcium supplement, if it didn't cause him great constipation. They also decided he was exceptional in his eating habits. I had brought what medical records we had for him, and they made copies.

We heard children crying, we heard parents singing and we heard Bug humming and chirping while he played.

After 5 hours, the Doctor came in. We exchanged pleasantries and he asked about Bug's history. Now, he had his records so we didn't have to talk too much, just about what mattered to the Doc the most.

Then, he said: I don't suppose you did a follow up LP.

To which I responded: Yes we did (BIG SMILE).


Two months ago and I STILL am waiting to hear the results.

He said: That seems a little excessive.

Tell me about it.

We all agreed that having those results was important so I called Bug's pediatrician's office. True to form, they came through. They pulled up his results and faxed them over.

If only it was that simple.

What was faxed, did not have the values, it was only the paper that stated the test had been performed.
So I called back. 20 minutes later the results were being faxed. Only they didn't receive them. So I called back and THEN we had them.

The good news: His 5-MTHF level went from 27 (range is 36-100) to 73! Oh hooray!

Doc then brought in a Neurologist. While talking, he mentioned:

So he hasn't had the antibody test.

I smiled: Yes he has.

I fetched the results on my phone and handed it over. His response did not shock me and it made me smile. He said:

Wow! That's the highest I've seen. His blocking number is very high.

And then:

He has the double whammy. Blocking is really high and binding is about medium but...has he had any IvIG?

Not just no but I've asked and they looked at me like I was asking them to split an atom with a spoon.

So, Doc wrote up a protocol for PCMC for IvIG and also wanted to do some mitochondrial testing. He asked if any of his mito testing had been performed after fasting. Nope. And has he had any other autoantibody testing, because with ONE autoantibody there is more. Nope.

So we left with two tests and one protocol.

We went to have pizza, Bug seized at the table :( and Kiera called.

She said: We were brainstorming after you left. How would you feel about US doing his initial IvIG? It's a 5 day course, are you OK with that?

Hell yes.

We arranged for him to get his fasting blood work tomorrow and then be admitted for an EEG and IvIG. Cool.

But wait...there's more.

We got another call. This time they asked us if Bug could participate in yet another research study (when we got into the room we signed a release for his info to be used in a study). This time, they would draw more blood tomorrow and we will collect first morning urine. Good freaking luck with that, Daddy...that's all on you big guy.

So, not only did we get the testing I wanted but we are also getting first level treatment! Excited is not the word, especially since he has had yet another seizure in the hotel room. This sucks, but hopefully, it won't suck for much longer. Fingers, toes, eyes, arms and legs crossed.

What a day.


The big deal

>> Monday, July 1, 2013

In 12 hours we will be sitting in a room at Arkansas Childrens Hospital. We will have a black book filled with papers detailing the last 7 years of our oldest child's life. We will be waiting to discuss what his new genetic tests mean. I will be nice and timid and very polite. Unless Doctor Popular blows us off like almost every other doctor has. We will be with our two beautiful sons, both silent, both with a bright future ahead of them. No matter how mean their Mommy has to get or how many hats she has to hold in hand. We will learn more tomorrow than any other day in our lives. Bar none.

And 14 hours from now...one of us will be crying. And one of us will be spinning and smiling and being an amazing person.

And hopefully all these things will follow a solid nights sleep.

What are the odds?


What a Seizure looks like (Graphic Content Included)


Seizure Tracker.com

Seizure Tracker.com
Free online tools to provide people living with epilepsy and their doctors with a better understanding of the relationship between seizure activity and anti-epileptic medication dosages. Reports generated on SeizureTracker.com include detail graphing capabilities and are easily sharable with caregivers.

Diamond Potential Awareness Award

Diamond Potential Awareness Award
Thank you Holly at Diamond Potential for this award. Awareness leads to understanding and acceptance. And let's face it, we all need to feel accepted for who we are. The battle has just begun!

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