What Christmas?

>> Sunday, December 30, 2012

The house, was sick.

Not THE HOUSE, the people in our house. This means ONE thing to us (since we are used to boogers) Bug will seize like crazy and then...a few days of NO seizures.

Yep, it's part of the Folate Autoantibody. When he is getting sick, his immune system ramps up and BAM! more seizures. When he has a fever, he has absolutely NO seizures. NONE. This time he had the fever for only 12 hours. He was miserable, but he was seizure free for 3 days. Now, he is feeling better, he is averaging one (1) a day. ONE. He had two the other day, but for the last 4 days...one a day. Hooray. Very much hooray.

And to top it off, I possibly found a Doctor that is familiar enough with MTHFR that he MAY be familiar with FRa and CFD and Epilepsy. Good Christmas...a little gross and a lot of Ibuprofen gifts but all in all...good Christmas.


A pleasant and unpleasant day

>> Tuesday, December 11, 2012

An eventful day.

And I mean that in a couple of ways.

We made it to our appointment with the NP at PCMC Riverton, a few minutes late, because the Bugster had a seizure as we were getting in the car. We waited for him to recover, dropped off Tay and got on the freeway.

The wait for the NP wasn't long. When he entered, he noted that we had seen a different Neuro yesterday and asked why we were even there with him. Valid question.

We explained: We had thought we might wait to treat the FRa and we will, change one variable at a time you see, but that doesn't mean we shouldn't TALK to an Immunologist about the FRa and FORMULATE a treatment plan once he is weaned. Especially since NO Immunologist has treated this before. He/She will need time to learn about it and HOPEFULLY, they will learn about it. The NP agreed and he wrote a referral.

Glenn updated him on the plan to wean the Phenytoin and he asked: Where were you doing the EEG?

Provo, I said.

Oh, well, let me see if you can do it here, today. Would that be OK?

Would it? You betcha.

30 minutes later they were hooking him up. How cool is that?

The EEG looked pretty good, in fact, it looked really good, better than it has in years. Oh goodie! So that makes the rest of the day surprising.

Glenn had an emergency crown repair on his tooth which was worse than anyone thought. While he was in with the Dentist, I took the Bugster to school. As we pulled up to the doors, he seized. It was a full 60 second Tonic and took him almost 20 minutes to recover. So, I turned right around and took him back to wait for Daddy. An hour and 20 minutes later, he seized AGAIN. And he hasn't been right since. He has had quite a few quick myoclonic seizures, I have seen 3 in the hour I have been home. Nothing major but WTH?

So tomorrow, I start the wean. Nervous is an understatement. Couple that with excitement at possibly making progress and I might throw up before the week is out.


The New Plan

>> Monday, December 10, 2012

The new plan is both exciting and scary as hell.

We know that the two AED's (Anti Epilepsy Drugs) that help our little prince the most, also make his Folate condition worse. At least in theory. Knowing this, we have no choice but to take him off them and hope for the best. Only then can we see if the Leucovorin is being successful, because right now, the medications could be negating the treatment. In essence, we are taking him back to ground zero. Starting at scratch. Zero.

So, the plan:

1. Have an EEG.

2. Reduce the Phenytoin by .25ml a dose daily (that's a little tricky, I will give him 1.25, 1.5 and 1.5 the first day, then I will give him 1.25, 1.25 and 1.5 the second day and so on until we are down to 1ml 3x daily)

3. Have another EEG when new target is reached and determine if we will continue or modify the wean.

It should take a few weeks but we have to do it slowly for a few reasons. First, we don't want withdrawals. Second, we don't want to shock his system into seizing. Third, we don't want to send him into Status, we want to give him enough time to process the changes.

Glenn and I agreed that the EEG was key in determining whether or not we were harming or helping, and the Doc agreed. Hooray!

Arranging the EEG immediately. Wahoo.

We are NOT treating the Auto Antibody at the moment. I am very uncomfortable about this but we have to to one thing at a time. Change one variable and his folate issues are fairly complex and it is not known if the meds are making it worse, or creating it. Doc said:

No one in Utah will treat him for this. I guarantee it.

It's nothing I haven't already heard, but it is still shocking. NO ONE CAN or NO ONE WILL? It unsettles me. There are other children in the State with this condition, albeit, not as bad as Bug has it, but don't they deserve treatment as well? And who will champion that? Why isn't there ANY Doctor in this state that wants to help these children?

With no recourse, we help him ourselves, as best we can and then we take him to Arkansas in July.


Well Wahoo! Happy Birthday Bug!

>> Wednesday, December 5, 2012

Venting sometimes is very fruitful. Then again, so is asking someone for help. Who knew?

I asked and I received. A very sweet lady gave me the name of a Pediatric Neurologist outside of PCMC. Oh, hooray!

Bug had two seizures that were ugly yesterday and a few minor ones, today...I haven't seen any. It's a little Birthday present maybe.

My little warrior is 10 years old today. An entire decade has gone by with his sweet smile enlightening everyone he meets. A decade of chirping and humming and spinning and cuddles. He is all the is happy and all that is challenging in this world. And I wouldn't want to have missed one minute of it.

He is beautiful and he may have a new hope. Another new hope. We will find out on Monday...yep...called today...got an appointment MONDAY! Take that PCMC! Apparently, a few Mothers have received their child's diagnosis from HIM. Looking forward to this conversation with and actually diagnostician and not just a Doctor.

It was the BEST birthday present ever. Or, at least I hope so.

Now, fingers crossed for no seizures tonight...or tomorrow...or the next day. How awesome would that be? Too much to ask?


Despair amongst the hope

>> Tuesday, December 4, 2012

There are only so many negative statements one can hear before they give in. Before he or she says: OK, you win.

That breaking point is different for every person. For some, they claim they never entertain the idea of throwing in the towel. For others they avoid the situation altogether so they never hit a giving up point, they simply never engage. And then, there are those that fight and fight and finally say, after a very long and particularly bad set of circumstances, I give up. How many times can one hear: ' this may be as good as it gets', or 'it may be case of bad brain and you need to get used to it', and my favorite to date is 'what more do you think we should do?'

What more? Everything. Everything you haven't tried, everything that might not make sense but you should try.

Bug has been having more seizures lately. The one I just saw, has him almost vegetative. Apparently, I am the only one that wants to so something about this immediately.

3 ER trips in 5 weeks and we still don't get stepped up in the queue. Still Primary Children's Neurology says we have to wait 5 months. What good is that to Bug? That's over 400 seizures. So I did what I never do....I settled for a Nurse Practitioner. The reason I don't usually sign up for an appointment with the NP is simple: to get anything approved you still have to wait for the Doctor. And with Bugs diagnosis...I will have to explain it, yet again, and fight the fight and then settle on waiting because the NP has no clue what to do. Seriously? And this is not socialized medicine yet. How much worse can it be? Their waiting to test Bug may be the reason he is lost to us, probably forever.

Because I have heard twice: it may be too late.

So, I sit here deciding where to go and how to digest this. Meantime, I feel like I am watching him die. Merry Christmas.


A few days

>> Sunday, December 2, 2012

A few remarkable and craptastic days. Let's recap shall we?

First: Friday. We headed to Ogden after school to celebrate Lil Miss' 1st birthday and Papa and Nana's 49th wedding anniversary. It was a hoot. He had a few minor seizures, including one at the Olive Garden as I was ordering his food, but nothing too big. Kind of lethargic all evening and fell asleep on me immediately following a few bites of food.

Next: Saturday morning I took Daddy to the airport to fly across the pond. While I was gone, Papa saw a T/C that lasted about a minute. Damn.

Several more smaller ones throughout the day. And then that evening...

Papa is a member of a model train club. One of the largest and most active ones in the Country and we LOVE the things they do. Every year, they have a Christmas Party. They buy all the children toys (the members fill out cards about ages, gender, etc...) and Santa Visits. It doubles as their membership meeting. They do it right.

We have been attending for 6 years now and until last night, Bug had sat on Santa's lap ONCE. Glenn took him, he didn't care, he only wanted off. But last night, Bug had a seizure as Santa was entering. It wasn't too substantial, but I thought it might have been big enough that he would sleep. He was looking sleepy, but he just sat there.

A few minutes into it, Taylor went over with her cards to talk to Santa and to get a present for herself and for Ava. Ava, wanted NOTHING to do with the Jolly Old Elf and Papa ended up holding her because I was busy with Bug.

I go it in my head that I would at least take him over to watch the kids. How can he learn to be a consumerist if we never let him embrace it? :) Actually, I had been crying and I needed to feel that he was a part of something that almost every other child on the planet cared a great deal about. So, I wheeled him over (he was in his new ride) and we sat there watching, holding hands, with me choking back the tears.

And then something wonderful happened. He stood up, took me by the hand, walked in circles and then headed toward Santa. It took us a few minutes to get through all the children and their parents but when we got there, I sat down and Bug sat on my lap. We waited our turn. When it was just Bug and another little girl, her Mother told us to go first. I said: Are you sure? He may take awhile. She smiled. I'm sure, she said. She had been watching him.

I stood him up and steadied him while he walked to Santa. He climbed on his lap, with a little help from Santa, and buried his head in his chest, grabbed onto his coat and then looked him in the eye.

Let me say that again: He LOOKED HIM IN THE EYES. I was standing less than 12 inches away and he paid no attention to me. I explained that Bug would not tell him what he wanted for Christmas because he is non verbal and has a severe Epilepsy, but anything that spins would be awesome. Santa looked at me an smiled and said: What a beautiful and very special little boy. He did this with the look of a loving Grandpa. I have always enjoyed this man, he is amazing, but this, sealed the deal: He is the real Santa to me. He was kind and he held Bug gently and talked to him with sweet words and reassured him. And he saw I was almost crying as did the lovely lady that had purchased and was handing out the presents. She asked about him and I found out that she is a Special Needs Bus Driver in Davis County who used to drive for Dan Peterson School.

We took the present, said thank you and Merry Christmas about 4 times, all the while with Santa reassuring that it would all be OK, and then we went back to the table to open his present. And Bug almost opened the present! He pulled at the paper twice and then was done. This is what he has been doing off and on for a week...he's there and then...he isn't. It's scary and concerning and I hate it. But when he saw that toy...he perked up and was all smiles and happy the rest of the night. It was a good evening with no more seizures.

Today was something else. 4 seizures, two fairly large. Then, I found out he was constipated. Hopefully, he is feeling a bit better but he didn't look like it when he went to sleep. The last two nights, he has been having a seizure around 4 am. I was sleeping by him at Papa and Nana's or I would not have known. At least they don't wake him up. He seizes and then goes right back to sleep. Let's hope he doesn't have any, but if he does, let's hope he sleeps through it.

I can not detail the kind of frustrated and helpless I feel at the moment. I feel like I am watching him get worse and worse and I am just waiting. So, tomorrow, I will call Dr. Quadros and ask him what to do and see if I can find another Doctor that will NOT put us off for 5 months once I tell him that the medication is making him worse. Utah has me feeling like I am almost alone in this battle. But, I will change that.


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!

  © Blogger template Simple n' Sweet by Ourblogtemplates.com 2009

Back to TOP