Fear of Seizures

The biggest transition we have had to make going into a new school setting is dealing with the fear and perceptions of seizures and epilepsy. This is a whole new group of people who are responsible for Gracie during the day. This is a whole new set of people with their own fears and perceptions coming into play. It is obvious to me that Gracie's new school is taking her medical condition seriously. They are concerned about prevention and procedures in the event a seizure happens at school. It is also becoming evident that they are afraid of that next seizure happening on thier watch.

At the end of her first day, one of the teachers in her classroom declared, 'whew one day down; 189 more to go.'. I immediately thought Gracie was acting up and the teachers would be glad to have her move on. Instead, the teacher was watching her like a hawk and her count-down was for how many more days to make sure nothing happens to Gracie on her watch. Maybe daycare was just used to it and we didn't think of the burden that those responsible for her well-being feel while they are in charge of her and her care. This teacher is so afraid that Gracie will have a seizure while in her care and she will not do something right. In some ways I smile at the sweet naivete of this teacher but it also takes me back to the place where we had those same fears and worries.

We got to watch while things ratcheted up for Gracie - first fever triggered seizures only; then seizures without a fever; and then seizures that seemingly came from no-where and were quite difficult to stop; and seizures that were the start of serious illnesses. We got to adjust with each development and then move on. These teachers are coming in now. We have been over a year seizure free but they are aware of the potential of what can happen. For a while, we were mercifully spared from what-if scenarios. We dealt with what came and didn't look for more. In discussing Gracie's medical history with the school nurse, I had to tell her where we have been so she could be prepared. She in turn shared that with Gracie's teachers and the administrators. Understandable, they are afraid of what can happen. I wonder now if I should have warned the nurse that Gracie will sometimes start to turn blue during a seizure and this is a good thing - her body is diverting oxygen from lips and hands to her brain and key organs. I wonder now if I should have warned the nurse that Gracie tends to have status seizures when they strike - ones that don't stop easily. In warning the nurse and these warnings being passed on, we have created a whole school of worried people.

On the upside, Gracie is being treated like a princess. When asked about preventive measures, I mentioned that we give her daily medications and she is on the ketogenic diet. When asked how the diet works and what is needed for that, I mentioned her meals, snacks and her special drinks. When asked about the drinks, I mentioned that hydration is important. Gracie now gets a special juice bottle that she can take with her anywhere she goes - just in case she wants a drink at gym or in the library or in the computer lab! They want to make sure that she is fully hydrated. I have tried to say that this might be just a bit of overkill and I am told to let it go. Obviously, her teachers have latched onto something tangible that they can do and feel empowered to help prevent a seizure. I think they are helping to make my sweet little imp into a monster!! But, I am so grateful for another wonderful group of people to help Gracie through her day!

The first photo was taken during Gracie's China Travel Group reunion over the summer. She is the darling in the pink dress with the wand. The cutie pie on the right is her friend Lili. The second photo was taken this week - Gracie at the end of the day from school.

We're Back = First day of school!

Today was the long awaited first day of kindergarten for Gracie. She has been waiting to go to kindergarten - on the school bus - since the day she watched Rita head off to kindergarten three years ago. For Gracie this is the fulfillment of her life-long dream today.

She woke up at about 6:20 this morning and wanted to know if today was the day she gets to go to kindergarten. She squealed with delight as we told her yes.

Here are some photos from the first day of school. She came hope wiped out from her early start and the first day without a nap. She needed to close her eyes for a bit when she got home.

I will try to keep this blog current now with updates on school, mainstream school with a special diet and how we are managing life with epilepsy. And of course photos!

Transitions

I mentioned that Gracie was having seizure on Friday nights and she switched to Monday nights!

Grace had a 30 minute seizure last night. This was the first prolonged seizure since January 29th. The frequency of the seizures has picked up but with few exceptions, the duration of the seizures is down. Last night was an exception. Her medication levels are at the right place. She is right where they want her to be on the meds. THat is no longer the cause of the increased seizure frequency. Now we need to try to figure out what else could be causing the increase in seizures.

Tom and I are thinking that it may have to do with her diet. Grace is on a lower ration of fat to protein and carbohydrate that most people on the ketogenic diet. Grace is about 2 to 1; whereas the standard starting point is 4 to 1. We are wondering if it is time to re-tune her diet and get more restrictive again. At least maybe if we let her continue to eat unlimited protein, we may need to give her more fat to compensate.

As a result, her breakfast this morning was chicken kiev (a chicken breast drenched in butter) and fried egg with cheese. She also had her juice (keto-koolaid) with a helping of heavy cream mixed in. This is actually very delicious. Her juice is orange flavored and it ends up tasking like an orange creamsicle - at least to us!

What is it about Friday nights?

Gracie seems to be having seizures routinely on Friday nights now. For a while it was every other Friday night and now we seem to have slid into weekly. Somewhere about 8:00 PM - give or take, she has a seizure.

We have tried giving her meds a bit earlier, no change. She has had three of the seizures at the Friday night session of gymnastics. However, she has had many more away from gymnastics. We have tried to think through many of the possible scenarios and get ahead of this but we are just running out of ideas - good ones anyhow!

It is getting harder to watch her have seizures now when I know that regardless of how small, they are taking something from her. The more of these there are, those little backward steps start to add up.

I have been in touch with her doctor and I am waiting to hear back. About 18 months ago, we looked into a drug called steripinitol. This drug is used in conjunction with her Depakte and has had great results with kids with SMEI (Severe Myclonic Epilipsy of Infancy)/Dravet's Syndrome. However, at the time, Gracie was not a good candidate for this drug as it works with the Depakote to raise the levels of it in her blood. She was already at near-toxic levels at that point so the medicine would not really help her. I am hoping that since her situation is the reverse now that this drug may be helpful to her. I have yet to hear of anyone using this drug and the ketogenic diet. The drug is still not cleared for sale in the US. We would have to have the hospital order if from Canada for us.

Thanks for checking in. Please hold Gracie in your prayers. She can use every little bit of help she can get these days!
Marie

Evaluation Update

At Grace's three year old physical, I discussed with her pediatrician where she was in comparison to the three-year old milestones. Grace was fairly close and we had trouble determining if the things that Grace did not do well were a lack of ability or interest. I discussed this with her day care teachers at the time as well. I guess the general feeling was that she might be starting to lag behind a bit so we should have her evaluated at the Intermediate Unit (the kindergarten/school readiness program for children ages 3 to 5). I submitted the paperwork and learned that the first step in the process is a screening. Depending on the results from the screening, she would or would not be referred for an evaluation. Then if there was a full evaluation, the result of that would determine if she required therapies or services or not.

We did Grace's initial screening in April 2009. At that time, Grace's raw score fell below where it should be but the woman conducting the screening felt that the score did not truely reflect where Grace was at. The school phychologist was called in to give her opinion. Grace's evaluation was scheduled just a few weeks after she was in the hospital in spetic shock so there was some concern that her recent illness was negatively influencing her score. Coupled with the fact that Grace did not do as instructed but gave her own version of the response which was scored as incorrect. For example, there was an exercies to see how she did making all of the sounds, she was given sentences to repeat so they could check how she did making specific sounds. Grace repeated the sentences paraphrasing and leaving out the sounds/words they were testing for but essentially repeating the meaning of what she was asked to repeat. We all agreed that maybe it was best to give her 6 more months and do another screening at that time.

Well, I didn't call to reschedule her until November instead of October and then when she was finally scheduled to go back in, she was in the hospital. When I called to reschedule, they decided that they would skip the screening (since she basically already failed it!) and just go for the evaluation. I finally got that scheduled for February 1, 2010.

The evaluation process was very well organized and amazing to watch. Grace just 'played' with all of the folks evaluating her and never once seemed ill at ease. The team were obviously quite skilled. She had a school phsycologist, a speech therapist, and occupational therapist and a physical therapist participate in the evaluation process. When I rescheduled the screening, I listed concerns in cognative abilities and speech. However, when I first submitted it, I had listed her motor skills as a concern - both fine motor skills and gross motor skills. Since they were still going off the first screening, they evaluated her for all of it.

It took a lot longer than I expected to get the results back from the evaluation. Basically, when I called to find out when to expect to hear back, I was scheduled for an IEP (Individualized Education Plan). I made the comment that I guessed that meant she was recommended for some services. The scheduler only confirmed that and said it would all be reviewed with us.

Her speech which was of a concern to us, was slightly behind where it should be but not enough to warrent speech therapies. However, they did give us strategies to help her with some little things. Her cognative abilites are behind where they should be and she was recommended for services for that. Her fine and gross motor skills were very much behind. Her adaptive skills (dressing herself and feeding herself) were on target. And her social skills were well above average. I guess I was right on when I speculated that she is covering up for her gaps by being cute and charming! Anyhow, she will receive three therapy sessions a week - one for cognative skills, physical therapy and occupational therapy for her motor skills.

The best part of her therapies is that she recieves them right at her day care. She is in an environment where she is safe and comfortable and surrounded by all things familiar. The IU has a classroom in the daycare to work with the kids requiring therapies. So Grace gets to go from one classroom to the other and they therapists send us notes home and show her regular day care teachers what they can do to help her work on her needed skills. This is just one more reason why we love our day care :-)

I was somewhat upset by the results. Not that she needs services (that she is getting them I am glad) but more that the seizures have taken so much from her. When Grace was 18 months old, she was one of the best talkers in her group. She was tiny but she kept up with all of the kids. I liked being naive about the damage the seizures were doing to her. Now my eyes are opened. We have to fight for control of these seizures and be as vigilant as we can possibly be. We also need to keep working with her to try to help her catch up to where she should be. Afterall, she is scheduled to start kindergarten in September 2011!

Keto 'Happy Meal'

Fried pork rinds - I will readily admit to an aversion to this food. I don't think it ever appealed to me. I could not believe my eyes, when last summer, on a trip down south, Tom came out of a gas station convenience store with a few bags of fried pork rinds - and he was excited about it. I imagine my curled lip and sneer very clearly gave away my opinion on the food. However, Tom said the one thing that was guaranteed to change my mind - there are no carbs in them!

Fried pork rinds are all protein and fat and not a single carbohydrate. This makes them great ketogenic diet food. Tom had several flavors so he could try them with Gracie and see if she liked them. She was absolutely thrilled when he handed her a bag of 'chips' that looked like potato chips and actually said she could have some. I think the idea of her own 'chips' appealed to her for a bit but them she realized that they just were not potato chips! It takes Gracie about two weeks to tire of a new food and that was what happened to the fried pork rinds.

However, our imaginations were then fired up about them. We now use them as the basis for keto-bread crumbs. We crumble some non-flavored fried pork rinds and then blend in some parmesean cheese, onion powder, garlic powder, salt, pepper and any combination therein. We use these breadcrumbs the same as any other. We dip bits of chicken into an egg and coat with the keto-bread crumbs and then fry them up. Voila, chicken nuggets that are carb-free! We mix that with some eggplant french fries and we have a keto-happy meal and a happy keto-child.

The eggplant fries are very good. We take a regular eggplant and cut it into pieces resembling shoestring french fries. This gets fried up in oil - either a mix of canola and peanut or olive oil. The eggplant picks up the flavor of the oil - just as french fries do.

Once a month in Gracie's day care class, they have a Chick-fil-A lunch. Basically, it's the Chick-fil-A kids meal. Gracie used to love this. She also likes to be like all of the other kids. We knew about the eggplant french fries before but we just recently started pairing them with the keto-chicken nuggets. Gracie is content that she is getting the same meal that everyone else is eating!

It's been a while...

I have not posted here in quite some time. That leaves me wondering where to begin again. Here goes....

Gracie has had an increase in seizure activity since the start of the year. Her medication levels had dropped and one medicine (the Depakote) was increased the end of January. Her levels were still not to where they need to be and the seizures continued. Just this past week, both of her medications were increased (Depakote and Keppra). Hopefully, this will help Gracie get some control over her seizures.

The medication changes also seem to be helping with the headaches. Gracie has been complaining of headcahes on and off but much more frequently of late. We were told that the headaches are a bit of a warning that her medication levels have dropped. One of the side effects of Depakote is that is helps with headaches. Since she is so used to it, it seems that when there is not enough of it in her system, she gets headaches. She can now clearly communicate when she has a headache so hopefully, this will help us to know when her level need to be adjusted in the future.

Grace managed to put on some weight. She is up to 32 and a half pounds! It is great to see her making some strides in this as she has continued to grow. It is most likely a combination of her gaining a bit of weight and having been sick earlier that impacted her metabolism and how she is processing her medications. We are hopeful that this latest adjustment will last her for a while.

I'll try to post soon with some updates from her evaluations.