That point

>> Friday, October 26, 2012

There comes a point when, no matter what logic says, you will try almost anything. That is how it is with chronic conditions. It's not a breaking point, it's not really a turning point, in fact, it might be termed a desperation point.

And all one needs is a little positive reinforcement and they will become a true believer.

I have seen this for decades. It started with my OWN experiences: RA, 8 Knee Surgeries, Infertility, Secondary Infertility and then it culminated with Bug.

I have entertained all sorts of alternatives and I have thought about them more and more especially after his fall the other day. Have we done enough to help him?

Then I think: Good heavens, we have done more than his Doctor's have. We pushed and we begged and printed out numerous medical publications (not narrowed to OUR viewpoint but that fit his symptoms) with legitimate provence, and we have held him almost everyday, comforting him while he seizes. One can not comprehend the toll it takes until you have been there. Not that one can not imagine, but imagination is not reality is it?

So, I am back to wondering: What next?

I suppose that all depends on what his latest FRA level tells us. If his level was lowered by the Prednisone, then we will proceded full steam into repressing that Auto Antibody. No diet will effect that, no medication will cure it, all we can do is trick it into going away.

The next test on the list:

Lumbar Puncture

NOT looking forward to that, but how else will we know if the Leucovorin is helping?


Adding injury to insult

>> Thursday, October 25, 2012

After the day Bug had, I was looking forward to a quiet evening. He was feeling better, smiling and playing and the house was mess because of it. No biggie there, it will eventually be cleaned, but not last night.

I was feeding Ava in preparation for bedtime. Bug was walking around playing and spinning and then I heard the THUD behind me. I turned to see him face down on the floor, arms and legs out.


He was only inches from me and inches from the corner of the kitchen cabinets so I prepared for blood.

He whimpered and just laid there.

I rolled him over onto his side in case he was seizing. He wasn't so I pulled him further into the middle of the floor and sat him on me. I saw a considerable amount of blood from him mouth and then saw the tooth.


I quickly realized it was his baby tooth that had been holding firm for months. He has a permanent tooth behind it but it wasn't close enough to push the old tooth out. I reached toward the tooth it pull it from him mouth so he didn't choke on it and that's when he went into full, and ugly, T/C.

I will pause here to explain a little. With Bug's condition, and with a lot of people that have Epilepsy, any shock to the system can kick off a seizure. With Bug, it's a guarantee. His seizures are central nervous system related this...was bound to happen with an injury.

The seizure lasted about a minute and it hit him hard. We cleaned off as much blood as we could to see if he needed to go to the ER. Then, we saw the little gash on his bottom lip. It needed attention. And then we noticed that the bridge of his nose was a little blue...both Glenn and I decided, at that time, that a CT scan was needed. As we prepped the kids, Bug was very lethargic, more so than with his normal postictal state. And worry set in.

When one walks in carrying a child, bleeding from the mouth, they will walk you right back to the first open room. They know Bug by now, not all of them, but most. He was back in the room, the Doctor was in when I walked back (I dropped Glenn, Bug and Tay off and parked with Ava), which was all of 10 minutes.

Doc decided he might go with a spot of glue on the lip (not normally done but he wanted to avoid knocking the kid out) and a CT scan. Wouldn't you know the CT machine was available AT THAT MOMENT. So they hurried him over. He did superbly. Never before has he had a CT scan and NOT been tied down or sedated, until last night. Hooray! Of course, it was because he was injured and postictal but still...

The glue was placed, the CT scan was good and we went home with a tooth in my pocket.

Bug was miserable. We had to crush his meds up because his lip and tongue were so swollen and obviously hurting.

Now, these meds are NOT supposed to be crushed and now we know why.

Bug slept by me all night, and on me, and every hour he would have a seizure. A mild one, a Tonic for 5 or 10 seconds. It made for a long night, but again, it was to be expected really. His lip is pretty awful but no black eyes. I have a little bit of blood on my nightshirt from where he was laying on me, but it all comes out in the wash.

Now, if we can get him to stop playing with it with his tongue...


On days when all you can do is laugh

>> Wednesday, October 24, 2012

This morning started out particularly bad.

I woke up 6:30am and could not go back to sleep. I got the baby a bottle at 7:15 and just laid there, thinking.

At around 7:45 I heard gasping and choking. I wondered if it was Ava sucking on her bottle but I quickly realized that it was Bug: Seizing.

I ran upstairs. Usually, by the time one of us gets there he is done and recovering, not this morning. He was still in full T/C.

I made sure he could breathe, lifted his head off of the pillow (he was somewhat turned into it) and waited for it to stop. After about 30 seconds he started the deeper breathing and the convulsions lessened. Once he was done I picked him up and carried him downstairs where the Oxygen is. He cuddled and twitched for about 40 minutes and then he sat up, happy and smiling.

So, deep breath, here's where it starts getting 'fun'.

He was laying on the couch, while I was changing Ava's diaper, and I quickly 'realized' (the smell was overwhelming, it was impossible to ignore) that Bug needed to be changed as well. As I was finishing up with Ava, Bug started to sit up...this simple move was the beginning of the gross. What WAS in his diaper was now leaking onto the couch. Glenn grabbed him and held him in place. I cleaned him and the couch and then we got everyone ready for school. Bug didn't eat. This is not unusual after a T/C of that magnitude so I didn't think much of it. I figured he would just eat a large lunch.

Glenn headed to work and I loaded the threesome into the car and dropped Taylor at school.

Bug's school is less than 5 minutes from Tay's. He didn't make it that long. About a half of a block from his school I heard: gag and splat.

Yep, puked in my car. Now, this is the toughest part of a non verbal child. There is no: Mommy, I don't feel well. No warning whatsoever. There is just Gag and Splat. If one is a lucky Mom then she has the chance to notice 'the look' and try to intercept. But I was driving! Luckily it wasn't much. He had almost emptied himself into the diaper earlier. Thank heavens for small, and yet, disgusting things.

I turned around and took him home. I cried on the way. I know he has a metabolic issue and NO ONE will look into it. Even IF this is a stomach bug, which it probably is, it just brought home how much this child has problems with his stomach and his bowels. When we got home, I cleaned him up, put him on the couch and turned on the TV so he could watch cartoons. Adding to the morning: Rolie Polie Olie was on. I cried again. THIS was 3 year old Bug's favorite cartoon. He would dance and laugh and sit, transfixed, through the entire show. He had action figures and books with Rolie Polie Olie on it. He absolutely loved it. 9 year old Bug, didn't even look at it.

Two more seizures later, several poppy diapers and one more vomit (caught in time) and he was asleep.

By Noon I had the count down: 2 vomits, 7 poopy diapers (between Bug AND Ava), one load of laundry, one van clean out and a small breakfast for Bug. If there is a partridge anywhere in a pear tree I am sure it's gagging.

I can not smell anything but...well...not to be too indelicate...poop. AFTER noon, add 4 more poopy diapers to the count and I can tell (gag) that I need to go take care of one more.

Thank you Lindsey Palmer and Scentsy. Just thank you.


Where did THAT come from?

>> Monday, October 22, 2012

For the last 4 weeks, Bug has been taking Prednisone, just to see if we can mute the FRA (Folate Reductase Autoantibody).

For the first week he had a stomach illness and was seizing several times a day, and it took us over a week to calm that down and replace the natural flora and fauna in his system. Once we accomplished that, and he was feeling better, we noticed he was going a day or two here and there with NO seizures. I should clarify: with no APPARENT seizures.

The last three days have been, well, kinda fun, sorta interesting and a waiting game. His energy has been through the roof. He is smiling, he is playing and he has only had two seizures that were very mild. Because of his history, we aren't excited though, we are cautious. Hell of a way to live huh? Instead of jumping for joy, we are watching that other shoe.

Now that doesn't mean that we aren't grateful and happy, we just aren't thrilled. Not yet. Instead, we are trying to keep him fed, which is next to impossible since his appetite is back with a vengeance, and keeping an eye out.

The important thing is that he is happy. Very happy. And really, that is all that matters. I will be stealing some of his happiness later today though; he is having his blood drawn again for the FRA test that Quadros performs. We are anxious to see if the Prednisone lowered the titer. If it has, then we will order a CBC (Complete Blood Count) with ALL the bells and whistles just to see what his normal levels look like, because really, we never have seen that. The autoantibody can change A LOT of things and it will be interesting to see if that leads us to something else.

Sounds like fun doesn't it? I guess, for nerds, it is.


Um...eww and yet awww.

>> Wednesday, October 10, 2012

Poor Bug, poor ickie Bug.

Heck of a morning.

Here's the obligatory disclaimer:


Bug has been constipated for a little while. We gave him Miralax and it helped. A lot. He went 48 hours without a seizure once the Miralax worked, which was AWESOME. And then....

We thought that maybe it worked too well. He has been having runny diapers and seizing 5 times a day for the last 4 days. And then I got a call from his school nurse yesterday:

Glenn has diarrhea.

I explained that it might be an allergy but thank you for letting me know.

Boy, was I wrong. I changed a couple of water-like diapers last night, gave him some yogurt, held him through 4 seizures in an hour and prayed it would get better. It seemed to, for a few hours. He slept peacefully and quietly and then Taylor came downstairs at 6:20am.

What's up Tay? Everything OK?

Her response: I think Bug threw up.

I went upstairs and he was sitting in something alright. I touched his mouth; it was dry.

Uh oh.

I carried him out of the room and then he walked downstairs. Glenn cleaned him up while I cleaned up the bedsheets, and the blankets, one pillow and a stuffed dog. And then, I fully came online and the smell hit me. Dang. It was NOT vomit.

I went downstairs and Glenn said: I don't think it was vomit.

He washed Bug in the bath and I let him stay in the water (once he was clean) for a few minutes. Until he seized.

At that point, we got him out, wrapped him up and I took him into the family room and cuddled with him while he slept. One more seizure and the sun was up. I gave him his meds which made him he perk up but he is still staying home. Hopefully, the poop monster is gone.


What a handsome lad!

>> Friday, October 5, 2012

I realize, I don't post many pictures of my little prince. For many reasons actually and none that I will detail ;).

But he got his school pictures and well, I have to. He is so handsome. So...


What was that?

>> Wednesday, October 3, 2012

It certainly was not a pleasant night.

We upped his Lamictal last night.

Innocuous statement. Or at least it WOULD have been.

A few weeks ago, we accidentally double dosed the little man. It wasn't much of a concern because he has been on the higher doses before. With one exception: Lamictal.

And, on that higher dose he didn't seize. For two days. So, we asked Dr. F if we could up the level. His serum level of Lamictal was too low to be therapeutic so...why not? New script in hand and we left happy. ALL of us. Including Bug.

So last night, we gave him another 50mg. And he was giddy. I mean GIDDY. Laughing out loud, big belly's the problem: at inappropriate things.

He would NOT sleep. We broke out the Melatonin. It didn't work. OK, it was a low dose, so we gave him another shot of it. worky. Then one more, just in case. Bringing the total dose to 7.5mg. Completely OK and safe but still...nothing. He was laughing and wiggling and just way too happy.

So, I held onto him, watched some Soccer and prayed he would crash. He didn't. Of course he didn't, that would have been too easy. So, another Clonazepam was ingested and at 12:45am, he began to clam down a little. I was laying on his legs so he couldn't get up (it went Bug, pillow, Mom for the record) and I fell asleep. He was patting me on the back and petting my hair. At 1:15 I woke up and he was looking very worn out. So I laid back on my side and he put his legs over me and fell asleep.

And then I felt him tense up.

It was the first. It wasn't too bad. 10 seconds. I wondered if I dreamed it. And then, at 1:45, another, longer seizure. By 2:45 and the longest yet, I got the Diastat and the Oxygen. But the kid had been VERY smelly most of the night. So I hesitated. What's the point of giving him the Diastat if it will not stay in place? It was a good call, and bad call.

Good call, because the next seizure a few minutes later, and he had a VERY full, and kinda gross diaper. We debated giving him the Diastat at that point BUT....again, would not be too much of a benefit if he is going to clear everything out. 4, maybe 5 more seizures, two uses of Oxygen and it was morning.

Now, there is no giddiness. There is no energy. He is asleep on the couch. Beautifully asleep with no seizures in over an hour. I am sure he is exhausted. He ran a marathon last night. All I did was comfort him. Needless to say, I am extremely tired, very worried and sick to my stomach. Let's hope it was the sick tummy that was getting him, please let it be that. I can't bear the alternative.


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.

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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