Last FULL Day of School!

>> Friday, May 28, 2010

No events. None. Hoorah.

He is asserting himself a lot today. Tay has been smacked a few times for trying to get him to do something he would rather have not done. I have to correct the behavior but I am glad to see him defending himself and forming an opinion about what HE wants to do.

Tay loves to grab him by the sleeve and drag him around the house. He usually goes along with it but not today. Maybe not anymore. We will see.

Because he was so sick all week his last day was only a few hours long. But he enjoyed it. We all did. Tay was entertained and we did a lot of talking about Epilepsy and writing Children's Books. Making video's too. Bug is very photogenic, although annoying about bath time.

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6 months later...May 2007

>> Thursday, May 27, 2010

6 months after the last video..so May 2007, we can see he has started crying more. In this video you can hear him whining and crying and just being upset every so often. He was also put in the stroller/cart because he was running away farther and farther. He could not be consoled and only constant movement made him happy. Again, you may say Autism BUT that doesn't change the fact that something happened to bring us to that diagnosis. Something, other than, or that caused the seizures.

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May 27, 2010

Happy Anniversary Daddy!

1 event last night and none today so far. He tossed and turned to get to sleep and about 30 minutes after the squirming settled down he had a T/C. I thought that meant we would be in for a night of seizing but he only had the one. Curious and entirely pleasant, for what it's worth.

We wondered out loud at lunch if he would be seizing off and on all day, every day without his meds and we resolved ourselves to Yes. he would.

He is feeling better today nose is running but PLENTY active. Might have to sell him.

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More proof

I do not believe that anyone just SUDDENLY, and with no trigger, forgets how to eat with a fork, there is a reason. Doctor's say: That's Autism. I say: That's an excuse, not a reason. FIND the REASON.

This video was taken a month before the IHOP one. He is acting like a normal little boy: Throwing money in the fountain, staying close, listening and responding to comments. Now, if you give him coins, he will eat them, or he will drop them, he will do a lot of things, but he will not throw them into the fountain.

video

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Regression Redux

I often talk about how Bug slipped from us so slowly that we didn't notice. It's not that we weren't paying attention, it's just that it was so gradual. I hear how I just haven't taught him, I hear how he just hasn't learned. And I scream: WE DID! HE DID! SOMETHING took him away!

It's a small video I came across. Those of you that have been at a table with Bug lately, know the mess he makes, and the food palpation that occurs. I say: It wasn't always this way and people just smile and nod. This video is of Taylor winking and at the end we see my little man, who was 4 at the time and had been having seizures for over a year (only about 10 at this point) eating his food. With a fork. And no coercion or assistance.

video

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May 25, 2010

>> Tuesday, May 25, 2010

1 event at 4AM...but nothing after that.

He has a low grade fever so he is staying home with me. I hate it when he is sick. He looks completely miserable.

he just had another event...darn it all. He was sleeping peacefully at my feet and then full T/C. Took him a bit to recover too. The T/C was less than 40 seconds but the it took him almost 2 minutes to completely recover. He is playing with the stacking tower but not wiggling at all.

I was hoping he would be able to go to school tomorrow but it isn't looking like it at the moment.

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May 24, 2010

>> Monday, May 24, 2010

4 events but you would never know it. The boy amazes me, he was a little low going in the AM but perked up and enjoyed school. We think. :)

He is not hungry. I even bought him his favorite: McD's cheeseburgers and he just picked at them and didn't actually at much.

He was such a cutie at the Epilepsy Association Meeting we went to. He played on my lap and only wiggled a little...which is a lot actually. He fell asleep fairly easily too. I hope he has a nice, relaxing sleep.

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Sunday!

>> Sunday, May 23, 2010

Busy few days and he has had 0 events in the last two. Glenn thinks he had a mild one at the Park Saturday morning. He said he just 'fell over' and was a limp. Could have been a drop attack like the last one I saw. I hate not knowing.

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Update - May 20

>> Thursday, May 20, 2010

He has had 2 events during the day today.

The first one was at school. He was at lunch and locked up and fell over. Sarah caught him before he hit the floor, thankfully. The nurses were there, everyone was there. It tough to watch him seize and I am sorry they had to see that.

The second was at 6:10PM.

He came home, I fed him, gave him the medication I FORGOT to give him and he played. I had been quilt ridden all day and then THIS made it worse.

We were sitting on the couch and he began to go rigid and stare. I helped lay him down but he was already going backward. He slowly began going Clonic and they were INTENSE. his face twitched, his eyes blinked and his whole body rhythmically contracted. It lasted a full minute. And it took him a good ten minutes to fully come out of it. It sucked.

He is sleeping now. Going in and out. Mostly, I think he is just exhausted.

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May 20, 2010

2 events and possible two small weirdnesses.

The first one last night was nasty. It was almost a full minute and he had a tough time recovering. Broke my heart to see him like that again. The meds...just aren't strong enough and either we up them and risk his organs or we actually start looking at VNS.

We had to wake him up to get him to school this morning. Maybe, NOW, for the first time in his life he will let us set a routine. Ya, I know, some parents are all about getting the kid to bed at a specific time, and getting a nap at a specific time and well, I have seen the tailspin that occurs when the child, and the parent, don't get the child to sleep at their appointed time. I didn't want a child that inflexible and he always just slept when he was tired, except for those few bad days and when he turned 3. And I wonder if people know how upsetting and rude it is to say: He just need more consistency. Yep, I am a bad Mother because I let my child self-soothe. And ya, Bug's epilepsy is just because I didn't have more of a routine. Some people, really do blame the Mother for the child having problems. You know, sometimes, it just IS what it IS and NOTHING could change it. But we can work to adapt to it.

So now, we will see if we can get him more into a routine.

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Forest Fires and Rattlesnakes

>> Monday, May 17, 2010

Happy Birthday NANA!

4 events all AM.

He went immediately back to sleep.

We had his ENT appointment and I was nervous how he would act since he had a bad morning but he was great! Tay was too! I got lucky or the complaining is finally paying off.

Turns out that Bug's left ear is clear now. Bummer, and yet, it explains why he has been responding better and being so verbal. He literally has a more comprehensive look in his eye and he is being coy too. Totally darling. Anyway, his right ear was still fluid filled so Dr. Munz sent him over for another hearing test.

His left ear passed, his right ear ALMOST passed and the eardrum is responding but not properly...so I thought he will advise the tubes. But he didn't. He said: Let's wait ANOTHER 2 months and see if the right one clears up. I wanted to scream and throw things but the only thing I was holding was Bug so THAT was a bad idea.

Instead I said: So at this point we are looking at brain stem processing issue (fighting back tears)?

Probably.

Knife plunge.

I just shook my head and said Ok, hugging Bug a little tighter and giving him a kiss on his head.

Dr. Munz was quick to follow up with: "BUT that doesn't mean that he won't be able to just one day start talking. I have patients that are 8 or 9 years old and they just spontaneously start saying things and he has a good chance of that since we can't really find anything wrong."

And there it is.

Can't find anything wrong.

That means that you are looking in the wrong place.

So we wait 2 more months and we enjoy the little Dada's and Mama's and DooDoo's we hear and we encourage it and we pray for that moment when he just says:

So what do you want to talk about? Forest fires or rattlesnakes?

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May 16, 2010

>> Sunday, May 16, 2010

No events.

Last night was blissful, I mean blissful. I can't say that about too may nights in the last 3 years, not since the nightly seizures started. The better thing about these is that although they are more frequent we are seeing less of an impact on him.

He took a nap and had two though. :( But after each one he smiled at me and held my hand and cuddled. I just adore this little boy, he is so resilient...and hyper at the moment.

He has his ENT appointment tomorrow at 9am. We will determine if he needs tubes in his ears. I am excited and nervous and all sorts of things. Mostly I am bummed that I have to take both the kids, by myself. Sigh.

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May 15, 2010

>> Saturday, May 15, 2010

1 event.

Hoorah for 1. It was in the AM and complete T/C. Which is the bummer. But he went back to sleep for 30 minutes or so and then climbed in bed with me. He cuddled and smiled.

He is getting uncomfortable sitting on me so that has slowed down. I figured it would. He seems to be able to ween himself of comforting things...thumb sucking for one. He did that all on his own when he was 4. We were amazed. And now, not sitting on me as much, but sitting near me. He also is not liking when I pet him or kiss him...typical 7 year old boy in that regard.

Can't wait for Monday. We will find out what we are doing about his ears. So off I go to ind the Otoscope just to see what Doc will see.

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May 14, 2010

>> Friday, May 14, 2010

5 events...all in the AM.

Recovered nicely and was 'normal' at school. They said there was no difference in him than any other good day. With the up in Zonegran, he seems to be more and more quick to recover. He is following directions better and will not push too much when told to stop.

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May 13, 2010

>> Thursday, May 13, 2010

7 events.

Ya it sucked. He had 4 Tonic after going to bed, all between 10pm and 12am, then he slept peacefully.

I held his hand all night just so I could feel if he had anymore but it appeared we were in the clear most of the night, until 5am at which point he had 3 more Tonic. All of the seizures last night and this morning were less than 20 seconds and he went back to sleep immediately.

He is tired this morning, or at least he appears to be, and he is acting like something hurts (furrowed brow). I was thinking he had a headache but after the amazing amount of gas he has been letting loose...pretty sure it's an intestinal issue. With all the milk and other food he ate yesterday it's not a surprise he got something that bothered him. Really would like someone to take his stomach issues into account.

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May 12, 2010

>> Wednesday, May 12, 2010

Evening went well, but meds wore off by 4AM.

He had 4 events, all Tonic, all less than 20 seconds. Was a little slow going when he woke up but still went to school and was pretty darn happy about it.

He got his Yearbook from school too. It's really cute.

I need to update with the pictures from the Field Trip to Salem Pond on Tuesday. We must have walked 2 miles that day, circling and circling. He caught a fish, we had it cleaned and gave it to someone that actually likes fish. Bug was mostly disinterested in the thing, but the water was great! It took all my effort to keep him out of it. And it rained off and on, but he didn't care.

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May 11, 2010

>> Tuesday, May 11, 2010

He is on a roll...4 nights no seizures.

BUT he did have two Absence. One this morning and one yesterday morning. Those don't appear to cause him as many problems so let's hope it's a new pattern. Heck of a thing to hope for ain't it?

He is fairly talkative lately, really cute.

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Salem Pond and The Fish That Never Was

It rained and continued to rain all day that day. No matter, I like the rain and Bug *is* seven and rain means: MUD! And PUDDLES. And WET STINKY SOCKS. It means pure joy.

It was Salem Pond's Annual Fishing Day, or something to that effect, and the schools that were there...well...more than fishes in the pond. It was really cool.

I can describe how Bug just wanted to get into the water, and how we walked around and around and around until we were stopped by one of the many helpers there, and asked:

Has he caught his fish yet?

How to answer? How to answer?

No. (snap)

So they walked us over to the chair under the tent, and plopped a fish pole in my hand. The other hand was holding Bug. I don't know if you know this but you can't fish with one hand. So, Bug was tugging, the fish that was already on the line, was tugging and I was sitting there looking around at the fine folks and saying: Ummmm...I can't let go of him or he will jump in the lake.

They said: Reel him in!

I said: With what? I can't let go of Bug.

Finally the man that was actually not just hearing but was paying attention to the situation stepped in, grabbed the line, that Bug was now playing with, and held up the fish. I took Bug's hand and let him touch the fish. He stopped dead in his wiggles and felt the fish. He pulled his hand back and then touched it again. He liked it. And with that, the fish was placed in the bag and we walked over to the cleaning area. I took a picture BEFORE it was gutted just as proof.

We ditched the fish with the rest of the class and walked around some more. It was cold, and we had fun. I fed him a little lunch that was provided for us and then we walked some more. He started to shiver and I wrapped my arms and coat around him until all he could do was look up and smile. He couldn't move, but he was warm.

And with that, the fishing day was over. His teacher came over and said we were getting on the buses and heading back to school. I checked him over and he was, remarkably dry and clean. Curious. I didn't need the extra socks in my pocket.

We left the fish at school with someone that actually eats those things because...ick.

I can describe that but it's hard to explain..as with most things: It has to be lived in 3d with color!

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May 9, 2010

>> Sunday, May 9, 2010

No Events.

Because Mom and I were buying dresses Glenn gave him his meds. Forgot what I told him about how much I had given him and gave him more Zonegran. oops. But it worked. So..on to a higher dose trial.

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May 8, 2010

5 events.

Big sigh. So we upped his Zonegran. After researching online and finding, in several places that he can have up to 400mg a day, we upped him to 200. So we will see what tomorrow has in store.

He was pretty good all day. Really good in fact. WE took him to the iFly and he walked around pretty darn well at FatCats. It was a surprise, very pleasant one at that!

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Regression

>> Friday, May 7, 2010

It appears, aside from having a bad day maybe, he probably did regress. Damn.

He wouldn't walk off the bus properly and he wouldn't get into the car properly, he is wiggling all the time and will not smile. This sucks. And it's my fault. Hopefully, we will see him back to himself tomorrow with no seizure tonight but like I said, I gave up wishing for things.

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May 7, 2010

6 events.

We had been on a a roll and then he missed his morning medication. Damn. He had been tough to get to sleep on Wednesday night, so tough in fact that at just shy of 1:00am I gave him a sleeping pill. He had NO seizures but he slept until 10:40. Understandable. So when he woke up I got him ready for school, fed him 2 egg and cheese sandwiches and got him there by 11:30. BUT I forgot his pills. BAD Mommy and I feel terrible about it.

SO I gave him one more Lamictal and one more Zonegran to hopefully help. But it didn't. :(

And this morning, he isn't following directions, he is taking his clothes and diaper off and he hasn't made a sound. Last night, he said I love you. It wasn't clear but I asked him to say it and he did. Wishful thinking? Nope, I have given up on wishing and am focusing more on the tangible aspects of therapies for Bug. I am afraid that those 6 seizures plus the night that almost never was have made him lose some of his memory.

Damn. But we will see what this weekend holds. He sure as hell got his meds this morning.

I got some video of what we are wondering are Gelastic or Myoclonic events. When I pull it from the camera I will put it up and you can tell me.

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We hate naps.

>> Monday, May 3, 2010

Most Mother's LOVE the nap time...they do everything they can from an early age to teach the youngster to nap so they can have a break and get stuff done. At our house, we have grown to hate nap time.

Sure enough, he fell asleep and sure enough, he had a T/C. Less than 30 seconds and very intense. He recovered almost immediately and has been playing politely, albeit a little loudly for a few hours.

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May 3, 2010

One event.

He had just fallen asleep when he had a 20 second T/C..right back to sleep and no more. He was so deep in sleep that he stayed in the same position all night, didn't move. His sister, on the other hand, was all over the place. They both are still sick.

He is threatening a nap at the moment. Better make sure to get him his morning meds.

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So....WOW!

>> Sunday, May 2, 2010

I read this the other day and was STUNNED by the implications. Just STUNNED I say. I will link to this in several places because I find it to be VERY important for A LOT of people affected by Autism, Epilepsy, ADHD as well as Fragile X.

Promise seen in drug for fragile X syndrome

We thought Bug had Fragile X. We were almost so positive that we would have put money on it. He had A LOT of the characteristics and I have a nephew that does as well, only no seizures that we know of. With ALL of the boys in the Hultgren clan having speech issues and some other delays, it was a red flag. But his genetic test showed NO such anomalies. While it was a relief, it was also a source of great frustration.

His EEG's have shown various different patterns including all over brain activity, sudden and not unexpected, however the synapses fire so intensely he has seizures. Or so we originally thought. His last EEG was different, we think. But we were told he has slow Alpha Waves and we are pretty sure that is bullshit (insert clean word if you like). We doubt the lead that he pulled off got attached properly because he does NOT show signs of slow Alpha's. Denial? Hi, I'm Annette.

Regardless, this drug has the potential to help so many different neurological issues it's remarkable to think about it. If this drug can not JUST slow down synapses, but regulate them like they think...OMG. Just OMG. It has potential to help Bug a lot. I will be doing some more research and maybe posting about it unless of course, I get distracted again. By slowing down and regulating it would help curb those peaks that cause Bug's seizures. IN THEORY. Can I talk to his Doctor about this? Doubtful. he still hears: Ketogenic Diet and VNS when we have said NO to those twice.

I will be finding out how to get him into The Barrow Neurological Institute in Arizona.

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May 2, 2010

4 events

Bug is getting over his illness still and had two events last night and 2 this morning. The first one last night was tough.

20 second Tonic followed by almost 20 minutes to fully come around. I hate those. The next one was about 30 seconds but he went right back to sleep, also Tonic.

At 6:40am he had another Tonic Seizure less than 20 seconds and he went back to sleep. The last one before he was up for the day was 30 second Tonic and he went right back to sleep again.

He is happy and hungry today. Sure signs he is almost over his illness but I will still be holding on to him tomorrow since his nose needs to be wiped so much. Tay has the cruddy crud now...fighting her fever seems to be more difficult.

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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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