Gah!

>> Wednesday, June 27, 2012

It's always tough to witness a seizure. So many things go through your brain, not the least of which is: Am I watching him/her die? Odds are, no, but still...you think it. Can't help it, they are frightening as hell.

Bugster had two T/C this morning. Both sucked. The one at 5am was worse. Luckily, he went right back to sleep like nothing had happened, and for him, nothing had. For his brain, well, it may just be continuing to entrench itself in the pattern of seizing. And THAT is NOT acceptable.

With the Clonazepam back on the morning routine, he snapped out of it and hasn't had one since 8:15am. Hooray. This morning he started the 25mg in the AM and 25mg in PM of the Leucovorin. Now, I KNOW that we aren't supposed to see a difference yet, but MAN is he more verbal and watching SpongeBob a lot (don't pooh pooh Da Sponge to me, EVER, when he watches THAT, I KNOW he is doing well, Da Sponge is a great baseline). He is chirping while spinning wheels. It's totally cool.

Now...on to finding him a great Immunologist.

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Never fails

>> Tuesday, June 26, 2012

I always jinx it. Always.

When we went to pick up the monkey boy from school for his Doctor appt, both Glenn and I commented that we thought he looked like he was going to seize. These are the times we wish we were wrong. But we weren't.

Starting at about 1:30 he seized. By 3:30:pm he had 4 under his belt. 4. In 2 hours. This is how you piss me off.

I have been weening the Clonazapam, but that is out the window now. Gave him half a tab 40 minutes ago and haven't seen one since. He is still being pretty vocal, so that's good. And watching TV. Also good.

Got the thumbs up for increasing the Leucovorin. Just have to pick it up. Hooray. Way hooray.

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A good day

>> Monday, June 25, 2012

The days have been getting better for Bug. He has more energy (uh oh), he is making more sounds (mostly the humming he used to do when he was a toddler) and his seizures are much shorter or non existent. When he does have one that is apparent, it's a doozy. Not happy about that but I'll take one big one every few days as opposed to lots of little ones.

Curiously, last night, he woke up crying about 3am. He was pretty upset and I began to get up to check on him. I saw Tay comforting him and he went back to sleep gently. I surmise he had a bad dream. A BAD DREAM. Cool. The child never slept longer than 2 hours without Melatonin, so he probably never, or very seldom, dreamed. We can safely say this, because his EEG, while sleeping, showed almost NO REM (Rapid Eye Movement) state. Safe to say: Not dreaming. He did have about a 10 second T/C around 7:00am, but that was the largest one. He had one instant myoclonic in the car about 1:30pm. So, he is making progress on that front as well.

We go to see Dr. Spencer in the AM. Gotta talk about treatment options, including IVIg and what not. I literally, can not wrap my head around the possible treatments that might help, it's not too much, it's just...what if it helps? I suppose, we will just have to wait and see.

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Hello 2 year old Bug!

>> Sunday, June 24, 2012

Bug did something a little while ago that I haven't seen in, oh, 7 years. I tried to film it but he stopped doing it before I started recording.

He was sitting on the couch and began shaking his head back and forth. It mimics the 'no' action but with more forceful and purposeful movements. He used to do it a lot and then stop to smile, only to start back up again. We saw this last when he was 2.

Now, THAT, is not wishful thinking.

I am NOT as excited about the running from room to room. Although...that too, is pretty exciting, and not as destructive as it was back then. He is making a lot of noises as well. Doing the Bug 'hum' that everyone who knew him then was familiar with. Each day, each week, gets more interesting. Still seeing those stupid seizures though. But...we are working on it.

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All sorts of tears.

Yesterday saw only a few small issues, some quick myoclonic stuff, nothing major. But this morning we woke up to Taylor screaming SEIZURE!

When we got up there, he was in full T/C. Another bad one. We waited it out and I carried him downstairs. He received his medication, upped by one Leucovorin, taking the total to 15mg 3x a day. He slept for 4 hours.

Was it the seizure that made him tired? Maybe. And maybe it was the up in the Leucovorin. The last few times we have increased his medication, he has slept. Could be a good thing. Let's hope it's a good thing.

Another good thing: He has been crying when he gets hurt. Like most kids do. Crying. Not whining, not holding his hurt body part, but real tears. It's kinda cool. Although he is HURT when he does so, boo for being hurt, hooray for being bothered by it.

He cried more about hitting his head on the kitchen counter than he did when he had stitches in his eyelid. Maybe it's just me, but doesn't that say: Hi, I am more aware and THIS FREAKING HURTS. ?

A not so good thing: Taylor is acting like she is having problems. She is twitching a fair amount, and stuttering when she talks. Jury is out if she is exaggerating or if there is something actually going on. We will talk to the Doctor about it on Tuesday. Sigh.

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The Research Continues

>> Tuesday, June 19, 2012

Wow. Just wow. This was published in 2007. I would think that with results such as these, EVERY Doctor with an Autism Diagnosis and ALL mainstream media outlets would have been screaming: TEST YOUR CHILD. I wonder why not?

This is Bug. He has all of these markers and conditions: His Serum Levels are normal, his 5-MTHF is low and he is positive for Folate Receptor Autoantibodies. Looks like the next year, will be very telling.

http://ultimateautismguide.com/2011/08/autism-research-folate-receptor-autoimmunity-lack-of-cerbral-folate/

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Thud.

That was the other shoe dropping.

I called Arkansas Children's Hospital to get an appointment with the good Dr. Frye. He doesn't have a schedule yet and they have no idea when they will have one. How's that work for ya? They took all of our information and will call when they get his schedule set up and start making appointments.

Shades of UCLA all over again. Don't call us...we'll call you. Maybe. And if you haven't heard from us in, oh let's say, 2 months, then feel free to give us a call back and we'll see where we are. At least Arkansas didn't even get our hopes up by saying THAT. They said: Talk to you whenever. Sorry. The term for my new emotional state: demoralized. Damn it.

Still, there are ways around this bureaucratic bull, and those ways are MD to MD. So, when Spencer gets back, and we get in to see him next week, we will see if he is inclined to call Frye himself and we can tailor Bug's medical plan over the phone, remotely, with no co pay. :)

So let's catch up on Bug this morning. He's at school! On the van! He made it. But not without amusement.

Monkey boy needed a quick shower. He hasn't been eating breakfast until about 11:30 so I didn't worry too much about trying to get him to eat, I medicated him and put him in the shower. He was grooving on it, and I liked seeing him smile. Then...he got a little less animated and looked like he was peeing. He wasn't. Then I heard: Plop. Well, at least he didn't soil the diaper.

Everything, and everyone, got cleaned off again and he got dressed. He walked, fairly calmly, out to the van and seemed pretty cool with going. He wasn't jumping for joy, but he was helping get into his seat, so that's a good thing. I told Shari to let them know they will probably see a seizure and he MAY start scrounging for food around 9:30 or 10:00, depending on if lowering the Dilantin a tad helps his appetite. It helped him walk. Last night, no toe walking. NO TOE WALKING. Cool. Oh, and no seizures. :)

Now, I just wait for him to come home and for Arkansas to call...or not.

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God Bless Alexander Graham Bell

>> Monday, June 18, 2012

Because of the Bugster's BAD days...I got on the phone. Well, on the Internet and THEN the phone.

First, I searched for Specialists in CFD and FRa and all those new TLA's (Three Letter Acronyms) we use in our house. Time and again I saw the same few names. The one that JUMPED at me was Dr. Stephen Frye. So I set out to find a contact email/phone/Ouija board for him.

I found a phone number and I called.

HE answered. The Doctor HIMSELF answered. Buggar me again! I stammered and then I picked myself up and talked about Bug. I told him what we have found that is new, and what is not so new. What we were trying to understand and then: Can we come see you?

He validated our research and thought we could come see him or we could try another Doc at UofU. I called Glenn after I hung up the phone, IMMEDIATELY called Glenn after I hung up the phone, and he agreed: Let's got to Little Rock!

The appointment desk is closed at the moment so a very nice lady, Sharon, with a beautiful accent gave me the correct numbers and tomorrow..I call.

So, let's detail his suggestions. Suggestions, he was careful to say he was not advocating OVER THE PHONE. It really was everything we had been reading about and then some.

1. Take him to 25mg of Leucovorin 2 times a day (he is doing 10mg 3 times a day now). 30mg is too low. It needs to flood the blood stream to get through the blood/brain barrier and he doubts that enough, if any if getting through. Although SOME has to..he is just too happy.

2. Discontinue the Dilantin and try Keppra IN THE PROPER DOSAGE. He said that 5ml twice a day was too low. (jury is out on this one since we tried it before with no luck...although...if the dosage was too low...)

3. Talk to an Immunologist and see if he needs IVIg to suppress his obviously overactive immune system.

And that's where we start. We can make some of the changes immediately and the others will have to wait for Dr. Spencer. Who, I will be giving Frye's phone number to. He will get a big kick out of it. I think.

We have only seen two seizures so far today...but he is VERY jittery and having a tough time walking. Could be the sickness. He has been tugging his ear as well. Hello, Otoscope...where are you?

Again, we wait. Ugh. But...HOORAY! What a cool day!

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Not sure what's worse...

As if yesterday wasn't bad enough with the, more than a handle seizures, but today...he is asleep and will not wake up. He has done this before. He sleeps this much when he is:

1. Sick.

2. Modifying seizure types

3. In Status

He IS sick. I gave him his meds this morning and saw his nose had been bleeding and is very runny. Hoping that is all. But, really, what are the odds?

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Fluck.

>> Sunday, June 17, 2012

7 seizures, including 2 full T/C's and some mild paralysis after the last one. He better be sick. All I can say. He sure as hell better be sick.

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The post we knew was positive.

>> Friday, June 15, 2012

Received word a few hours back....Bug has Folate Receptor Antibodies.

What does that mean? It means that he does not bind folate properly. I will try, with Glenn's assistance, to detail this later but for now...we know.

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Weeee....it's a Roller Coaster

The constant up and down of life with Epilepsy is tough enough but then add a new medication with a lot of promise and each seizure is a stunning rush of emotion.

Bug has been doing fairly well, his eye contact is still good and improving, he isn't following direction as much BUT he has been sick AND he is stubborn. But is it the sickness that is messing with our 'one a day run' of seizures? Two days in a row, only one event each day until this morning....

He has been sleeping in, mostly because he is staying up until 11. I know...bad parenting on an epic scale but we are trying to limit the use of Melatonin and he puts himself to sleep between 11 and 11:30. If we give him Melatonin at 9, it's a battle for almost an hour. And why put him, and us, through that? He KNOWS he has to stay in bed, he just is so excited about the world around him. We know this is the case because his variety of toys has increased. His spinning has decreased. Let me say that once again: HIS SPINNING HAS DECREASED.

Bug is a spinning machine. He can spin anything on his finger. Even a burrito. Thank heavens I have witnesses to THAT one or no one would believe me. He got two full rotations of a burrito before it started to fall apart. Classic. He still likes to SEE things spin but he hasn't been picking up things and spinning them on his finger. Holy shite.

So, today he slept in past his medication schedule. Damn. So at 9am he had his meds in him but not soon enough (he got them at 8:30) and he seized. Then at about 9:20 he had another. The first was the longest at about 20 seconds, fully Tonic and somewhat aware. He blinked in the middle of it. Locked up, blinked. Broke my heart. The next one was a very quick tonic. Less than 5 seconds. Still hate those, but a far cry from how my little man started this journey.

After two days of watching him play, and not spin as much, watching him smile randomly and investigate more things, watching him look at Ava and GRIN, two seizures, really blows. Gale force. It's next to impossible to maintain composure and grace at these times. Thank heavens I've never had neither of those traits.

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Ugh...sickness still sucks.

>> Sunday, June 10, 2012

The newest Maughan has been sick for a few days. 48 hours of fever and grumpiness with some vomit and more than an average amount of poopy pants. Still have no clue what it really was but she is a bunch better today.

But....

She is a sweetheart who gives kisses already and shared whatever shite she had with her big brother. And because of it...no less than 5 seizures today. How much does that blow? My heart is broken. And he sleeps peacefully at the moment. No real fever but gave him ibuprofen because he felt a little warm. Luckily he ate a decent lunch because breakfast and dinner did not appeal to my little monkey man. Hopefully, it will only last as long as baby sister's did...because more than two days of this and my heart might explode.

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Update

>> Friday, June 8, 2012

Still having one to two seizures a day. Less intense, and usually right before his medication. This tells us he is still burning through his meds too fast.

He is now taking 7.5 Leucovorin 3 times a day. A far cry from the maximum dose but Dr. thinks he is middle of the road. ? But that didn't stop me...

It didn't stop me from talking to Spencer. And the good Doctor agreed that he could be upped a little sooner than 3 weeks. So...tomorrow he will get 10mg 3 times a day.

He is more on today, more aware, more interactive and less seizural. It's kinda awesome. Still...not believing that anything can bring him back and keep him back. It's all too 'Flowers For Algernon' for me. I know I should equate it more to insulin for a Diabetic but I still can not. Not yet. Even though he is doing better and he makes fantastic eye contact, there is too much a history of medicinal failure to fight. So, realistically, he is making intentional eye contact, even seeking it out, and smiling a lot more. He is toe walking more, although I caught him walking flat footed a few minutes ago and is doing it even now, he pathological need to spin things is still strong. Maybe even more intense. I will take more video. It will be good to compare.

On to tomorrow, a dose increase and the addition of B Vitamins. Wish us luck.

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A part of Bug resides in New York

>> Wednesday, June 6, 2012


Yesterday was a busy day. Running, running, eating, running and telling Bugs story no less than three times.

Once, when I got the pre paid envelope to ship his serum in.
Twice, when the phlebotomist at AMFO HO did his courtesy draw of blood.
And the third, when I picked it up from the lab after its journey through the centrifuge.

I sealed it in the envelope, along with the 125.00 check and handed it over in the FED Ex package that said: do not use this envelop to ship blood, liquids or chemicals. Whatever.

So, as of 10:23 this morning (guaranteed delivery by 10:30 after all) his serum is in the lab in Buffalo. Hoorah.

And..we wait.

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For once: The right choice

>> Tuesday, June 5, 2012

When we found out about Bug's low levels of 5-MTHF, we did the research and then made an appointment with his primary care physician.

When we handed Dr. Spencer the 2, only 2, printouts we had brought with us, he READ THEM and then he asked if we wanted the blood test. Just to be sure?!

Yes please. Although I believe I said...well hell ya.

So, Spencer arranged it.

With the ONLY lab IN THE WORLD that does it. It took him two hours. WITH THE ONLY LAB IN THE WORLD. How cool is he?

It didn't take him long at all...because he is smart...and because he cares...and because he is a GREAT Doctor. And I am NOT over exaggerating this time. He literally looked up the study author(s), found the one that he was sure could do the test or point us in the right direction, and he CALLED HIM. Novel idea huh? Dr.Edward Quadros answered his own phone and walked Spencer through what needed to happen. ANSWERED his OWN phone...at 5:30 at night. I like him. Haven't met him, but I like him.

Spencer sent an email and less than 10 minutes later, Dr. Quadros sent back the instructions on collecting the blood and sending the sample to his lab. A 100$ donation is requested. Ok. We can do that.

And today, I am off to pick up the pre-paid FedEx envelope, take it over the AMFO HO lab and then send it directly to Dr. Quadros for evaluation. Gotta say, this is one of the simplest things ever that may have the BIGGEST impact on my little family. Especially the Bug.

Quadros said that since the publication of the research paper, they have had INTERNATIONAL response and requests for testing. He stated that they were almost overwhelmed. And that made me smile. I have such little respect left for the medical community that it makes me extremely happy to hear about so many proactive Doctors and Medical Centers.

I will stress again: ANYONE with an Autism Spectrum Disorder, with or without seizures, should get this test. It's less invasive than the lumbar puncture and has about a 50% chance of being positive for FRa. If not, talk to your Doctor about trying Leucovorin for about a year, just to see if it helps. It can't hurt. It really can't. And the best that can happen: You can get your child, your self, or someone you love the opportunity to improve their situation. And that can't be bad can it?

And about Bug: He is doing well. Really well. We took it upon ourselves to up his med by 5mg a day and he has had 2 seizures in 48 hours, and one had Tay as a witness only so...might go with just one. It was less than 5 seconds and only his arms were involved. He came out of it immediately and has been very happy all morning. The eye contact continues and he is animated and interested in other things, not the standard play toys. So...we will see what comes next. Will the shoe drop? or will he put it on his foot? Only time, and a med increase, can tell.

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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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