Friday, August 28, 2009

Well the Meds Aren't Exactly Working

Well we're now on the maximum dose of Keppra and Yusef is still having 0-2 seizures a day. I've been in constant communication with the Dr.'s office and he wants us to come in sooner than was originally planned. So Tuesday we'll go in and discuss what he wants us to do.

I'm a little ticked off at the Dr., frankly. When I was there last week, we dicussed the treatment plan and what steps we would take if this med didn't work. He said we could add in another med, I think it was Zonegram. I fully expected him to call out a script for this, but instead he didn't want to make changes in the medication, and just wants to see us in his office. I guess I'll find out more on Tuesday.

I'm nervous because I don't know what he's going to say that's any different than what we discussed previously.

I've posted a video of a baby having infantile spasms if anyone's interested. It's not my Yusef, sorry I can't figure out how to post my video. I can't get my video to save on my pc so I can publish it. If anyone has any ideas or advice, please post.

Sometimes infantile spasms are misdiagnosed or overlooked, so if you have any suspicions about your little one you should call your pediatrician right away. It's also a good idea to video tape any unusual symptoms of behavior if you can, so your pediatrician will know exactly what's going on.

Monday, August 17, 2009

A Day in the Life

From my other blog...

Today was Nathan's first day of second grade! He goes to a magnet school whose focus is on environmental education. They get to do all kinds of cool outdoor projects and even have camping trips.
Here's him in the car as we were leaving:

I forgot to take the camera in with us as we got him settled in his classroom. Oh well, it would have just embarrass him anyway.

We had a nice downpour as I was driving back

Back to the house and the other little ones were up and ready for breakfast

Yusef had his as well. He's getting pretty good at holding his bottle!

Next is bath time

All cleaned up and ready to run our errand to Wally World for some supplies

This is how we roll

Back to the house for Dhuhr

I do a little decorating with some cheap stuff I bought at Walmart

Pleased with the results

Lunch and now time for a little cleaning

Gotta have my coffee and Mp3 player for this. I download free audiobooks from my local library's website. I'm currently listening to a garden variety serial killer suspense type thriller. It makes the chores so much more fun!

Picking Nathan up at the bus stop

Cookin' up some dinner for the family. I made BBQ chicken tostadas ala Weight Watchers from this recipe. It was really good and something different

Here's my plate. Yummy and not too calorically disastrous

This is the point in the evening where all hell breaks loose as usual. Cleaning up the dinner mess, squabbling cranky children, getting them ready for bed. The usual. Poor little Yusef had another seizure at this time as well. It's so stressful seeing this happen to your child.

Time for

I finally got them off to bed by 8:30 when a thunderstorm moves in and they all end up congregating in my bed. I love Kansas thunderstorms, but they don't go well with little ones. So I made myself some green tea with lemon and ginseng and enjoyed the storm

Finally got them off to bed and I'm curling up with my hero, Frederick Douglass.

Nighty Night all...

Alhumdu lillahi rabbi al Aalameen for blessing me with another day. Ameen.

Sunday, August 16, 2009

Neurologists appointment and increasing meds

We had our first visit with the neurologist Thursday. He seemed extremely knowledgable albeit a little quirky. I've actually worked with him before at the hospital, so I was prepared for his eccentricities. Little Yusef gave him a big ol grin when he was examining him, so looks like Yusef doesn't mind his personalilty one bit.

Unfortunately, Yusef is still having seizures, although fewer. We've gone up on the meds twice now, and he's still having about two episodes a day. We went up to 2 ml's yesterday, which is double his original dose. Yesterday he had two seizures, so far today, none. We'll see how today goes and if he has any seizures, I'm to call the doc tomorrow. If need be we will add another med to the regiment, and if that doesn't work we will start ACTH treatments. ACTH is a hormone and Yusef would have to be admitted to the hospital for these. It is a hormone naturally produced by the body and has alot of side effects. I'm praying that these other meds will do the trick and we won't have to go that route.

The good news is that Yusef will outgrow these types of seizures (infantile spasms). The Dr. thinks that we're looking at 6-12 months of treatments. In the meantime, it is imperative that we get control over them because they can be damaging to the brain.

I've also noticed that Yusef is so much more fussy since this has all began. After he has a seizure he literally screams bloody murder. It's absolutely heart wrenching and I feel so out of control and powerless.

Monday, August 10, 2009

EEG Results and Starting on Meds

Thank to everyone for your kind comments and prayers! It really means alot to me.

And yes, to no surprise, the EEG showed seizure activity. To tell you truth, I'm mildly relieved, because I know sometimes EEG's will come up negative if the patient doesn't have a seizure at that time, even if they really do have an underlying seizure disorder. I was able to get the EEG done late Friday afternoon and the neurologists office called later that evening to call in a script. It was also nice to know the doc (we haven't actually met him yet, our actual consultation is Thursday) is on the ball and didn't blow us off until Monday.

So we're starting off with Kepra. I'm keeping my fingers crossed it does the trick and we're not having to constantly play with the meds to stop the seizures. I know this is a possibility though.

After I filled the script as I was driving home, I felt some tears come to my eyes. I just love my baby so so much and naturally I'm feeling quite a bit of apprehension.

He's been on the Kepra for 3 days now. It seems to be working! He had two seizures the first day we started it, but none since then. A couple of moms on the DS board at mentioned that the meds may make Yusef drowsy or not as active as usual and thereby slowing his development. I can say I've seen some very minute changes. He doesn't seem to smile and engage with me quite as much, although i can still manage to lure out a smile here and there. Apparently this is a common side effect of the meds and not much can be done about it. It's better than the flip side which is continued seizures which would inevitably lead to brain damage.

We're meeting with the neurologist on Thursday so I should know more about the plan and where we go from here. I'm assuming and have been told that he'll most likely want to do an MRI as well to see if there's been any scarring or any other anatomical issues going on.

I'll post more after our appointment on Thursday God willing.

Thursday, August 6, 2009

Infantile Spasms and EI update

First, the good news:

It looks like we'll continue to get our EI services. The organization that provides it now is filing Chapter 11, but will continue all homebased services, all praises to God.

Now, the bad news:

Last night I noticed my little one would tense up and throw his arms up very similar to a startle reflex. This happened in a very repetitive manner for a time lasting approx. 4 minutes. I knew right away this had to be some type of seizure activity. It happened again later in the night and I actually had the presence of mind to videotape part of the episode.

In the mean time I got out my handy dandy "Babies with DS" book and looked up the chapter on epilepsy. It said the most common type of seizure in babies with DS is called an infanile spasm. My husband and I felt our hearts sink as we looked at some videos out there on the internet of kids having infantile spasms and it looked exactly like those our baby had.

Obviously this morning I called my pedi first thing and after seeing the video and examaning him she also felt that was probably what is going on. We'll be getting an EEG, possibly an MRI and an appointment with a neurologist either tomorrow or Monday (prob. Monday).

He's had 3 more episodes over the course of the day (my pedi also knows about those). I feel like I'm on pens and needles waiting for another one to happen. He gets really grumpy and fussy afterwards also. Apparently this type of epilepsy can be quite damaging and sometimes hard to control. Fortunately, at least from what I've read, our kids tend to respond well to the treatments.

From what I was told the treatment for thses types of seizures are ACTH. I don't know much about this. I also think I read that they have to be admitted to the hospital for these treatments but I'm not sure.

Please keep us in your thoughts and prayers.

Saturday, August 1, 2009

First Hair Cut and EI Madness

At the tender age of 5 months I gave Yusef his first hair cut. I didn't get any before shots but as you can see from the previous post it was really quite shaggy. I wish I would have gotten a shot of the back. It was down past his shoulders!

Here's the aftermath. That's alot of hair!

And my new hansome little man.

In other news, it looks like there is a good possibility we are going to lose our EI services. The major organization that provides them here is going bankrupt. They serve about 2600 kids in this area. This just months after they opened a brand new multimillion dollar facility. I'm so upset and dissapointed with them right now.

They've realeased a couple of statements saying that they'll be restructuring and will do everything possible to coninue to help kids. Then just a couple of days later, they said they were going to close a couple of facilities, lay off 70 employees and focus on services for 3-5 year olds.

Needless to say, I'm not putting any faith in the hope that Yusef can continue his therapy with these guys. There are other organizations here but I don't know anything about them. I have the feeling they are all going to see a huge influx of people seeking services. I'm getting on the phone first thing Monday morning to try and figure out where we can get his therapies. Also, I'm going to contact our insurance to see if they'll cover anything if we have to go private. I'm stressin...