A new direction

>> Thursday, November 29, 2012

Bug's seizures have been lessened as of late. He is still having them though, with some large ones here and there, but for the most part, they are short. His most frequent, and new seizures, are very quick tonic where he looks up and his head throws back and his arms goes stiff. They last about 5 seconds. Next to impossible to video, darn it.

He is home sick today. He slept for almost 13 hours and once he ate a little breakfast, went back to sleep for another hour. So, I kept him home. He has been playing quietly, and not being very active. Every so often he comes over to me and cuddles up. It's adorable. So maybe, I kept him home for me, more than for him. :)

With what we found out about Lamictal and Phenytoin I researched more, and we got lucky. I sent a friend request to the woman that talked about Lamictal and she added me to an Autism Group. I was stunned with the threads in the group. So high level, and almost EVERY one of them mentioned one of three doctors that developed the FRa Test. These women...they will be the ones to really help Bug. I found a lot of good, practical information from other parents who have children that are FRa positive and have CFD. Very exciting.

It doesn't seem that it should be this difficult to find a Doctor in Utah that has experience with these but it is. And really, why? There are an amazing amount of children in Utah and a fair share have an Autism diagnosis...so where are the specialists? Are they in hiding or is this another typical Utah thing? We just don't talk about it? Either way, it's very frustrating.

I never thought I would have to become an expert on Autism, but it seems, that in order to get the treatment he needs, I need to walk the walk and talk the talk and heaven forbid they should NOT know anything about Epilepsy. THAT could get ugly.

I have spoken with Autism Specialists in California in the past and that left a very unpleasant taste in my mouth. The two struck me as greedy and arrogant. One, wanted 750$ just to talk to him and then each appointment would be a minimum of 500$ and he did not deal with Insurance so any of the testing he wanted to do would be above and beyond the appointment cost. He recommended that we meet every month, maybe twice a month, just to begin.

The second, wanted me to 'understand' that there was no miracle cure and that Jenny McCarthy was an idiot. THIS offended me to no end. Idiot or not, her son improved and if that means she sacrificed a chicken every day for 30 days, I don't care. She saw results. You can not argue with that. Placebo or not...if it works...shut up.

So, our new direction is Autism. Should be interesting. Wish us luck.

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One step forward.

>> Tuesday, November 27, 2012

And two back.

Just found out, that the test we are waiting for, the one that will tell us if the Prednisone helped lower his autoantibody might never be sent.

The ONLY Lab in the WORLD that does this test is in New York, and they have a spiffy Compliance Officer that has shut it down until he does an audit.

Pissed off is not the right phrase. More silly bureaucratic bullshit. Seems like common sense and helping people are contrary to University Rules. I guess it makes sense: They never took a hippocratic oath.

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What the...????

Glenn has often wondered why I frequent Facebook. He no longer wonders.

In the course of reading through posts in Kids With Epilepsy I came across a fact that I had not heard before:

Lamictal can inhibit Folate.

What? It's an Na Blocker...SODIUM...not Folate. But, oh, how it is. I researched and sure enough, on GSK's own .PDF about Lamictal we find this:

"Folate concentrations were also reduced in male rats given repeated oral doses of lamotrigine. Reduced concentrations were partially returned to normal when supplemented with folinic acid."

Knowing that Lamictal and Phenytoin have a similar mechanism of action I decided to look into that as well and what did I find?

"Serum folate decreases when phenytoin therapy is initiated alone with no folate supplementation. Folic acid supplementation in folate-deficient patients with epilepsy changes the pharmacokinetics of phenytoin, usually leading to lower serum phenytoin concentrations and possible seizure breakthrough. Folate is hypothesized to be a cofactor in phenytoin metabolism and may be responsible for the "pseudo-steady-state," which is a concentration where phenytoin appears to be at steady-state, but in reality, is not. Phenytoin and folic acid therapy initiated concomitantly prevents decreased folate and phenytoin obtains steady-state concentrations sooner." - 1995 Jul-Aug;29(7-8):726-35.
Phenytoin-folic acid interaction.
Lewis DP, Van Dyke DC, Willhite LA, Stumbo PJ, Berg MJ.
Source
College of Pharmacy, University of Iowa, Iowa City 52242, USA.


Why is this important? Because Bug has folate issues anyway, his body fights it and his brain is starved of it and we are inhibiting that. Oh goodie. Now, we are supplementing him with Folinic Acid but...we are also fighting ourselves. Making it worse, while trying to help.

I also found that there are additional Genetic tests that can be performed to see if he has a mutation.

I could cry.

Bug had a bad seizure at school yesterday. They had never seen such a dramatic Tonic Clonic before. From the description, it sounds like he had some Todd's Paralysis after as well. Damn. So, I am in research mode and not very happy. BUT, that is how things get done, and how we find answers and how we help our little man. He has an appointment in March to discuss this with his Neuro. What are the odds I will wait that long?

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A new baseline

>> Monday, November 19, 2012

It seems that Bug MUST have 2 seizures a day. One in the morning (after he has burned through his meds) and one in the evening (once he burns through his meds).

I called the Doc, who told me to call after a few weeks on the new level of Lamictal and left a message that he was doing better but can we up it again. Upping the level was suggested by the Doc so, I thought, no biggie.

BUT, true to form, left a message, and have heard NOTHING for two weeks. NOTHING. Again.

If the Doc says: Call me with an update, shouldn't you think that someone would answer the damn phone?

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The stunning statistic

>> Friday, November 16, 2012

I feel the need to stress one particular statistic today.

1 in 10 people will have a seizure in their lifetime.


This is more powerful than actually being diagnosed with Epilepsy for ONE reason: More than twice the people diagnosed know what a seizure is like. And it came out of the blue.

With Bug, he was a healthy, happy, although non verbal, beautiful child one day and then next...he had a Epilepsy.

We awoke one morning in our routine, two happy babies, one tired Mommy and a busy Daddy getting ready for work. Two diapers were changed, one Daddy left for work, two children were fed and happy and we all sat down to play. And we played. Two naps were taken (Mommy tried but it didn't work) and then we all took a shower. Then Bug fell. Suddenly, with impact, on the shower floor. I took care of the baby, and moved him, once he responded, to my bedroom, put a diaper on him, wrapped him in a blanket and fetched the baby, who was wiggling on the floor in bathroom, happily cooing.

When I came back into my bedroom, he was asleep. I let him sleep. And he did, for three hours!

When he awoke from that nap, he came downstairs and promptly had a massive Tonic/Clonic seizure. We were in the Hospital for three hours, running tests and hearing: Normal. Normal. Normal. All test were normal. His seizure may have been normal. Nothing to do but wait and see.

The rest is history.

That's how quickly he became a statistic to the medical community. He was treated like a statistic for a lot of years, but we always treated him like a little boy. A warrior, a child with strength beyond that of Hercules. Because he always lifts himself up and he always goes on. That's a statistic they don't track: How many persevere?

1 in 10 people will have a seizure in their lifetime. Do you know what to do?

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I really hate waiting

>> Wednesday, November 14, 2012

I have mentioned before that it will take about a year to know if the Leucovorin is helping Bug. A year.

I ruminated on this today a little. It was a simple statement I made that brought it home with a vengeance: I HATE waiting.

For 6 years we had no diagnosis. We heard idiopathic so much that I started getting pissy with any Doctor that said it. Yes, me, pissy. Who knew? My standard answer was: I don't believe that. It's a cop out. What you mean is: We DON'T KNOW. It's OK not to know, just don't give up trying to find out. Don't hide behind that easy term.

So, for 6 years, we threw every idea we had at them. Here's a little list of things they had to tolerate:

Benign Rolandic Epilepsy
Landau Kleffner
Lennox Gestaut
Angleman's Syndrome
West's Syndrome
Dravet variant
Diabetes (that was an easy one to rule out)
Low Glucose in CSF (Cerebral Spinal Fluid)
High Protein in CSF
Auto Immune Disease
Hypothalamic Tumor

And of all of those they tested for everything BUT the CSF levels and Auto Immune.

If they had, we would have had a diagnosis when he was 4. That's right, 4. So many years wasted because of arrogance or ignorance, and I can't decide which is worse.

We waited, and we never gave up trying to find that answer. Idiopathic was not allowed.

Then we found it. And now, we wait again.

Wait, wait, wait.

I waited for him to be born, I looked forward to waiting for him to grow up, then I had to wait to see if he would have another seizure or was that first one a fluke? We waited to see Doctors, we waited for test results, we waited to even have the tests performed (6 months for an MRI in California), then we waited, holding our breath for his first medication to kick in. That took 3 months to reach the therapeutic dosage, all the while, waiting to see if he would have a life threatening reaction (Truly, the medication could have killed him. Aren't AED's lovely?). We waited to have the genetics test to see if he had any of the 'Big Ones'. We heard: We need to wait for Genetics to catch up to him, we KNOW he has something genetic but we can't yet identify it. And once, in the hospital, we waited to see if he would recover or if he would crash and die. It was after that time that we got the test he needed and then we were told it was normal. When it wasn't.

A year later, we had the results and now, we wait another year. We are 6 months into treatment and it still may take longer to know.

I really hate waiting.


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What a Seizure looks like (Graphic Content Included)

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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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