Spencer had his sleep deprived EEG this morning so even more tired from being sleep deprived keeping him up.

I could tell from the EEG that it looked "messy". There were wrong squiggles all over the place.

The Tech asked why we were there. I told her it was follow-up for Katz not seeing Spencer in 4 years and wanting to know what his brain was doing now. I told her the school was concerned about the amount of eye rolling episodes and they wanted him medicated. I told her my concerns about side effects and the last time Spencer was on seizure meds it didn't go well. I told her I felt Doc needed to tell me something pretty compelling for me to decide to medicate him.

You know how they aren't supposed to tell you anything? Well, she did but she didn't.

She said, "It is always tricky deciding when to medicate and risk the sides and when not to medicate because of the sides. You may want to consider trying Spencer on one of the meds for a month or so to see if it helps. If the side effects get him worse than the episodes, you could quit or try something different."

What did this tell me? She saw something on the EEG that she didn't like. I couldn't tell for certain what she was looking at but I could tell there was a lot of disorganized squiggles. There were lots of episodes during sleep that didn't look like the smooth patterned lines. I personally thought it looked pretty messy.

So, I am not really looking forward to the call from the Neuro. She asked if we had a followup appointment with him. I told her he was supposed to call me with med recommendations and another follow-up in 4 months.

I guess it is good we have this EEG prior to the Life Care Planning Meeting. They can add in Neuro visits, EEGs, and meds.

Until I hear from the Neuro, I am just not going to far out there. I just felt I heard more today about the EEG than I was expecting. I am too tired to get to wound up about it.

((((Bec))))) I am so sorry it has changed so much and the tech made you concerned!!! I hope the apt can be soon!

It is good you had the EEG. I hope the school meeting can help figure a good plan for him!

((Bec)) and ((spenc))

I know this is hard, I pray that you are able to make the decision and feel confident that it was the right one.

(((Hugs))) Sorry the EEG looked so messy. We had a talkative tech one time. I did enjoy her. Tom was already on Tegretol and at the time we suspected absence seizures (EEG did not show this). Anyway, I asked her if she could interpret any of it. She told me about which traces were coming from which parts of the brain, etc. Then she said, "THAT doesn't look good." She pointed to a small squiggle that showed up occassionally on a few of the traces. Personally, I never would have picked it out. Three / four months later, we were back having another EEG, because Tom's seizures had changed to myoclonics. That tech wasn't very talkative. But, I could clearly see the difference in his EEG. "Messy" is a good description. All of the traces were overlapping each other all over the place. Definitely showed myoclonic seizures as a type of generalized seizure.

Her suggestion of trying a med for a month is a good one. Also, I know you and Spencer have a lot of dietary restrictions... can't remember all of them, but I'm pretty sure about dairy and gluten. Has he had any allergy testing done recently? I don't know a lot about allergy testing, but I do know there are tests for immediate reactions, and tests for delayed, and I can't help thinking that the delayed reaction tests are better for neurological issues. A friend of mine did the York Labs test with 90 or so different foods. (Pretty sure it's this place, if you're interested: http://www.yorkallergyusa.com/info.html. I'd like to try this for Tom, but I'm waiting to see if the DAN! doctor will run it for us.) She was amazed to discover the foods they indicated mild reactions to, she did indeed react to, when she removed them from her diet, and then added them back in. Also, is Spencer off of ALL the foods YOU react to? And, there is the Specific Carbohydrate Diet, which would get you off of corn (but not necessarily all of its derivatives) and soy. I'm trying to cut back on our soy and corn exposure... not sure how good a job I'm doing.

It was dairy that generalized Tom's seizures. I guess that's why I'm harping on food. When we talked to our neuro about taking Tom off medication, he asked if an EEG would make a difference in our decision. I said, "no." So, we didn't have another EEG (I probably could have pushed for one, but I wasn't sure I wanted one). It's been a year since we took Tom off drugs, and he's had 5 simple partials since then. I'm betting if we did another EEG, that small little squiggle would still show up in a few of the traces, but for now it's speculation.

Anyway, I hope you see the neuro soon. I'm sorry you have to add the "to medicate or not" to your list of things to worry about. The eye-rolling doesn't sound good; neither does the messy EEG. On the other hand, I understand your fear of med side effects, especially after the poor treatment you and Spencer had during the dark and ugly days. I am glad for the drugs Tom had when I felt he needed them. Now that I've figured out some (most?) of his triggers, I feel better about him being drug-free.

Interesting thoughts on food...

No Spencer is not off all the same foods that bother me. The only foods I really have him mostly off that bother me is dairy. Even then, he eats the school lunches so there is a possibility that he gets a little in the ingredients.

BTW, the milk as ingredients, even very small, is enough to bother me.

Your note makes me go, hmmmmmmm.

I know that meds that cause seizures / tremors / convulsions as side effects bring them out stronger for him.

Since his "weak link" is seizure activity, it makes sense that allergic reactions might hit the weak link for him.

My weak link is migraines. So, my allergies hit on the migraines.

Again, the deal makes me go hmmm. I will have to give food restrictions a go for Spenc and see how he does.

Thanks for the tips.

Bec, you are too funny (I know, not what you were expecting). I guess I had you closer to sainthood with monitoring your kids' diets. Is Trevor on a more restricted diet? (Just trying to figure out why I assumed Spencer was off dairy and gluten and other foods.)

If you're really uncomfortable with the thought of trying drugs, by all means try getting rid of your allergenic foods. It's easier having the whole family eat the same thing, anyway. (No, Mr. Kay doesn't eat like the rest of us, either.)

The nice thing with getting Tom off of all dairy is that we've been able to pinpoint all seizure triggers since. For him, it is a delayed effect. He had brown rice syrup around 1:30 in the afternoon ("organic" Graham crackers) and the seizure hit around 2 in the morning. And my York-allergy-testing friend said that the asparagus they said she reacted to took a good 24 hours before she noticed a reaction. (She said she would have never figured that one out on her own.) Just trying to say, when you do add the food back in, make sure you wait long enough before adding back another food.

You probably already know this, but if you do try drugs, they will make it harder to determine if Spencer has a reaction to the foods or not. I'm not sure if "they" would let you give the food restrictions a try and then repeat an EEG in 6 months or so?

You've got me kind of excited that this might help Spencer. (((Hugs))) (And, if you do end up trying drugs, that's okay, too. There's no right or wrong answer sometimes.)

I am pretty rigid with Trevor and my diets.

I cannot tolerate even the tiniest bit of milk without getting sick. Trevor can tolerate some every once in a while. He gets leg cramps so the result isn't a huge deal. He doesn't get sick like I do. If I had only leg cramps, I would likely cheat to the point of a leg cramp from time to time.

I am really rigid with Trevor on sugars, corn, and red dye. His behavior on those ingredients are unbearable, to me. He has melt downs and is ultra sensative. He also tends to be wound up and babble nonsensical words and phrases.

For myself, I am really rigid when it comes to cellulose as it gives me the worst kind of migraines. I found I can cheat a bit on the soy and corn. It takes a build up on those to give me a HA. Sometimes, I push it and get the HA.

It is all about the severity of the reaction as to how rigid I am with it. (Your word "sainthood" is too funny. All a matter of perspective.) If I find the reaction unbearable (nasty migraine or intolerable behavior), out it goes and I have no problem being rigid.

I should avoid sugars more than I do as they make me really tired (need naps) and sensitive. But the Prozac helps offset some of that. See what I mean about cheating? Trevor gets annoyed with me for cheating on sugars since I won't let him.

It would be interesting to see if Spencer's EEG looks like it does from "just" foods.

sainthood... still chuckling. Thanks for the vote of confidence, my friend.