>> Wednesday, August 29, 2012

Lately, Bug has been doing pretty well and so I have been ruminating on the last few years. I have come to one conclusion: people are dumb.


The Doctors that did not listen and would not test Bug. They cost us AT LEAST 4 years. I started asking for these tests when we moved back to Utah. I was told they would not tell us anything we didn't already know. Uh huh. How's that working out now?


Parents with healthy, perfect children like to give useless advice to Special Needs Parents as if they are incapable of parenting. News flash: What we know about parenting would make your head spin off your neck. Because until you clean up puke, then poop, then more poop and then brush his teeth 3 times because of the poop, well until then, I will NOT respect what you have to say. In fact, I will find it downright insulting when you tell me that I just need to be consistent. Ya, I didn't think of that...oh wait...I tried for over a year to get him to eat with a spoon again, and just when he did, he had 6 grand mals and lost the ability. Don't tell me how to raise my child. You don't know the first, or second thing about it. Keep it to yourself.


If your child has an unknown rash and he ISN'T taking Lamictal, put some Benadryl on it and give it a day. Because YOU are making ME look like an over reactive Mother and they trust me less when I bring my kid in because I think he is in Status. Relax people. Learn what an emergency REALLY is.

And Last:

I know you mean well, or at least I hope you do, but don't tell me that you don't know how I do it. That implies that my child is so bad you can not believe I don't institutionalize him. That last part was little exaggerated, but only a little. Because really, you do know, you would do it to if you weren't so hung up on the lice. Oh and nothing spreads like lice in a Special Needs school, so, sorry, I can't even give you that. Just realize that even though it's not a competition, you are making us feel like it is. And the one thing we special needs Mom's will win is the muted gag reflex of the year.

People, really are dumb. Because they don't know what to say or how to act, so they just spit things out. All you have to do is realize that every day with my child is a blessing, he may be gone tomorrow and what you say may be the last thing I remember you saying about him before he left. Do you want that to be the memory?


What you find when you aren't looking

>> Tuesday, August 21, 2012

You find that no one around these parts knows how to treat Folate Auto Antibodies. Huh, really?


So this is where it gets super cool and reaffirms that we finally have a great team for Bug. His Immunologist called the other day and left a message that, true to form, Vonage transcription service screwed up but the gist is this:

What dosage and of what medication will help him the most? I need help so I can help him.

Cool, right? Hearing a Doctor say: I dont know but I want to find out, can you help me?

Truly, I have NO idea. And after a morning (who are we kidding I have been looking this up for a few weeks/months) of searching, I found only anecdotal evidence of advanced therapy, meaning MORE than the folinic acid. Bummer.

So, I called Captain Doctor Cool's office and they said: Bring in what you want him to look over and we will give it to him. Great.

So I did that. And while I was there, himself walks out and says: Oh, there she is. Now THIS makes me nervous. I ended up giving some paperwork on Folate Auto Antibodies to Dr. Dan and then Spencer and I discussed the remaining stack of paperwork.

Back and forth, give and take, agreement and more agreement and a plan of action that was little more than: I'll email him and you call her and we will see what we can come up with.

Still hadn't given up, either of us, and I went to Bug's school, gave him his meds, marveled that he picked the Ear card when asked what we hear with (it was 50/50 so really, is it THAT impressive yet?) and then left for home. Trying to be tough. I ache to help this child. I really want my Bug back! I miss him a lot lately. It may be watching Ava develop and do the things he used to do that has me missing my first born. I try not to dwell, but for some reason, today was a tough day. Not all are like that, but this one...was.


The Captain Doctor Cool emails me and it says: "In addition to folinic acid therapy, a dairy free diet and 5-10mg prednisone per day could help bring down the titer. IVIg infusion has a transient dilution effect."

Well now, that was fast. Again. Wow. Ya see, the whole key here is getting the right people in the game. Methinks, Bug has an AWESOME team now.

Thanks Spencer! You are a King among men. But don't get cocky. I am pretty sure I can take ya.


The Amazing Dr. Dravet

>> Wednesday, August 15, 2012

Where to begin?

Oh yes, at the beginning.

A few months back, I got an excited call from Kris of the Epilepsy Association, she was excited because, even though Utah was NOT picked for the annual Dravet Conference, she had spoken with Dr. Dravet herself. The good Doctor agreed to visit Utah. And so she did.

Dr. Charlotte Dravet is a legend, no, not just a legend, a rockstar in the Epilepsy Community. To say we were excited she agreed to come, is the biggest understatement in the history of understatements. Even more unreal: I got to spend time with her.

And she is wonderful. She is bright, charming, humble, brilliant, compassionate, curious and a force of nature.

When she landed in Utah, after a direct flight from Paris, we found that Delta, had graciously lost her luggage. They found it, on the ground, in Paris. Auspicious beginning. They delivered it to her the next day, and it didn't phase her at all. She brushed it off as if it was a small fly. Most people I know would stroke out over it.

We thought she would want to rest, and she did, for about 2 hours and then they took her to Park City for the evening. Day 1. Complete.

The next day, Sunday, we took her to Temple Square to hear the Choir and take a tour. A special, insiders tour that Kris arranged. Before the performance, Spencer Kinard does a compulsory welcome to visiting dignitaries and various groups. When he welcomed Dr. Dravet, she gasped and grabbed my arm: Oh! That's me!

I had to giggle. This powerhouse of brilliance was giddy about her welcome. It set the tone for the trip. She was truly humbled that we made such a big deal out of her visit. The Choir, as always, gave a wonderful performance, a very moving and touching performance, and Dr. Dravet and I exchanged small talk every so often. Note to self: Learn more facts about some of the cooler things in Utah before the world class Doctor makes you feel like an idiot for not knowing that the Conference Center holds over 20,000 people. Never in my life, have I ever wished I could converse in French, until that moment. Still, her command of the language was excellent, even though she apologized often for not understanding, I always felt it was I who was missing something.

After the Performance, I went home to fetch Glenn and we picked up the rest of the gang and Dr. Dravet and headed west. To the Desert. Skirting the southern edge of the Great Salt Lake and onto the Bonneville Salt Flats.

I have never been to the Salt Flats, through, but never TO. Topping it off: There was a race that weekend. Glenn had a running commentary on how the lake and the surrounding mountains were made. Complete with nerdilcious Geology terms. Dr. Dravet enjoyed it. I believe, we all enjoyed it. Day 2 Complete

The next day we had our appointment. We were late, they were late, it was all good. We shared his history, she looked at his EEG and said:

He does not have Dravet Syndrome.

We agreed we knew this, and talked a little about his auto antibody. She smiled as we talked about it and went back to the EEG. She read it again and then said:

Have you tried Cortisone?

Glenn and I looked at each other and smiled. Glenn told her it was on the table. To which she replied:

It could be metabolic, or immunologic. Has he had his vaccines?

Yes, we said, he is current and he clusters after them. She said:

Ah, has he been tested for the antibodies against the vaccines?

LIGHTBULB! Well, no. No he has not. YET.

She explained: It would show if he has an immune problem.

We did the head slap and the: DOH! after we left the room (Then we flew into a long discussion about the implications of such an easy test. And I called and left a message with Bug's Immunologist).

She agreed that we are on the right path. That he would probably benefit from the steroids and immunoglobulin. Considering we didn't even mention that we were trying to get IVIG for him, this was validation in spades!

We left with renewed hope that those two things: Steroids and IVIG will help him. We left knowing that we are on the right track, and left knowing that one of the top minds has seen our boy and confirmed that he has hope.

Day 3 Complete.

We spent two more days with her, off and on. We toured the UofU research lab, had a lovely dinner and she gave a lecture to a roomful of Doctors, Parents and Research Assistants. She laughed with Glenn and I and we grew to understand that this woman is unique to this world. She graced us with her vibrance and her energy. It was a breathtaking experience, a truly wonderful time and I am VERY blessed to have had her attention for even a brief moment. And after a whirlwind visit, she is off to Minnesota. Amazing, just amazing.


One stupid thing

>> Sunday, August 5, 2012

And I can't shake the sadness. One seizure today. But it was a wild one.

We were just leaving the Evanston Train Show for our two hour ride home. Glenn, Bug and Uncle Scot where already in the car when I started walking toward them. Tay was running at me.

What's up?

"Bug is having a bad seizure."

I hurried as much as I could with a 20+ pound wiggling Ava strapped to me and by the time I got there, all that was left was the description and a VERY out of it little man. He was not back and he was wet. Uh oh. But, relax, it was water. Whew.

Glenn told me it was a Tonic/Clonic. A bad one. Not sure of the time. Which meant he didn't want to think about it because he ALWAYS knows how long they are. Must have been bad. Bug came around, a little, about 10 minutes later. I climbed in the car, holding him while he tried to shake it off and sleep. It took him another 5 minutes to get to the point I could give him his medicine since it was time. He took it, not easily and drifted to sleep.

For 10 minutes. And then he was back, although tired. Well, no kidding, the lactic acid buildup from that much muscle strain has GOT to be epic. Still, he ate well, more than I did actually, and we left.

He made it the rest of the day with no more, but it shook me. These highs and lows are destructive. They take so much effort to level out, to find a happy medium. To accept that it happened and it sucked, but that there was nothing to be done and one must move forward.

Uh, huh. Like that's gonna happen.

But, I will try. Tomorrow. Always tomorrow, because today, as fun as it was...sucked.



>> Friday, August 3, 2012

I have a picture of Bug, feeding 'his baby', Taylor. It's one of the most precious things I have. He did that a lot. He loved to help her, he would dance for her and make her laugh, he would comfort her when she would cry (he would pat her head, every so gently), unless she cried too much (we won't talk about what he would do then), and he would just like to sit by her, very closely. I loved it, it was the best. He was on track to be a GREAT big brother. Sigh.

And then, at about 3 1/2 years old, he stopped. I didn't notice it, at first, and then, by the age of 4, I realized he wasn't Bug anymore.

Until tonight.

I was snacking, because real food didn't sound good, and he was watching me. A couple of times, he reached into the Doritos bag, oh yeah, Doritos, and would hand me a few. I took them and ate them. This made me happy. I said "Thank You" each time and he would mumble something.

And then, out of the blue, he reached into the bag and brought the chips to my mouth until I opened up and he shoved them in. Bug, fed me. HE FED ME! I almost cried. Well, OK, I cried a little.

Those, were the sweetest Doritos I have ever had. Ever. Hi Bug, I missed you, will you be staying long?


And sadness sets in.

>> Wednesday, August 1, 2012

When Bug gets sick, his seizures do two things: they get worse and then get a little better. They get worse when he is getting sick, better when he has a fever and then, sometimes, they get worse again.

This pattern reinforces a possible immunological issue. When his immune system is on high alert it gets worse, when it is losing the battle it gets better and then when it goes back to high alert, his auto antibody keeps it at high alert and the seizures continue.

He had been having a great week and then he got sick. He is now cuddling after his second nasty Tonic/Clonic of the morning. He is quiet, he is twitchy and he is not smiling. Epilepsy has, once again, robbed me of my happy little mischief maker and left me with a vile hatred of this condition.

I can not begin to describe how this hurts. For him and for us. Just when we see a small ray of sunshine back from the depths of a deep, dark pit of regression, someone puts an umbrella over the sun and we are left in darkness once more.

His chubby little, simian lined, short curved little pinkies possessing hands, are touching me. On the leg, and on the arm I have around him, looking for comfort. I have kissed him no less than 10 times in the 20 minutes since the seizure. How many times have you kissed your child today? Well, go do it. Life turns on a dime.

- Posted using BlogPress from my iPad


What a Seizure looks like (Graphic Content Included)



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 include detail graphing capabilities and are easily sharable with caregivers.

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