Friday, March 26, 2010

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!

Tuesday, March 23, 2010

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!

Sunday, March 21, 2010

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!

Sunday, March 14, 2010

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.