1 step forward, 2 steps back...

Ask and you shall receive...

I was in the shower Saturday afternoon (the day after my big whiny post below) and Nathan came in the bathroom, knocked on the shower door and announced that he was going to go poo.

I peeked out of the shower and saw him sitting on the potty, legs just swinging back and forth, lol... and then he yelled, "MOM LOOK WHAT I DID!!!"

Yes, he'd pooped. This makes twice in a week and a half.

I'd call that a sign, right?

I decided to add in b12 and magnesium to Nathan's cocktail of supplements. Methyl b12 injections are used on kids with autism. It helps with cognition, language skills and irratibility. We could use help in all of those areas also. So, I thought it couldn't hurt if we tried just regular old b12. The magnesium can help with sz's also.

We'll see.

He's still having probably 1-2 mildly significant sz's a day. By mildly significant, I mean, they definitely would turn into big ones if the VNS wasn't in place. He's out of it way more so that just an "arm throw". We're seeing some clustering of arm throws normally in the morning still as well. And a random simple partial here and there. I'm stumped. Perhaps the VNS isn't at the right setting yet. We're in heavy ketosis all the time now and pushing the fat to keep him there. 10-15 carbs max a day. I don't see how we could tweak that any more. G and I are beginning to wonder if the diet is all that it's cracked up to be. Nathan's tolerating it still.... so I guess the jury's still out on that. The VNS can take up to 1 year to tweak just right. I would like to get more aggressive with the homeopathic treatments but the chiro said if you go too aggressively, you stir up adverse reactions you don't want.

I think patience is a huge lesson I must learn.

Nathan goes in the hospital next Tuesday. He's getting an MRI first thing Tuesday AM. I've requested (numerous times) that they hook the electrodes for his EEG while he's out. He has to be sedated for the MRI as it takes about 45 minutes and you have to lay still. No 5 year old can do that. Then, it's time to get comfy for the next 3-4 days for an EEG. Not sure why it's so long this time. But, getting all 22 electrodes attached is not easy for a child who doesn't like his head and neck touched. I hope they allow us to do that. I know it's not painful. But, it's scary for him and sometimes for a child, scary is just as bad as painful. So, if it's all the same to them, I'd rather they hook him up while he's still out.

Nathan is still loosing skills. We had about a week after he came off the topamax where he was getting words back. He hasn't really lost any words but he's losing letters. Nathan used to know every letter of the alphabet, the sound it made and words that started with that letter. For example, the T says "taaa", tree starts with T". We get none of that now.

Letters he doesn't recognize any more: c, g, h, v, q, u, f, i, j

I've begun doing flashcards with him again and reading books he enjoyed when he was 3. He just shuts down and won't participate. He is just too frustrated. I should start earlier in the evening maybe.