I decided to start the Enhansa last Saturday, even though we have family in from out of town. I started with a 150mg. dose...75mgs in the a.m. and 75mgs in the p.m. The stuff (powder) is yellow/orange and just smells nasty, so it took me some trials to find a way to get it into him. I put it in his juice for the first 2-3 days and that didn't work. He probably didn't even get 1/2 the dose on those days because I just couldn't get him to drink his juice. So, I decided to try it in some organic, all natural, maple syrup. I mix it in with about a teaspoon full and then give it to him. He seems to tolerate it much better that way. I tried it in apple sauce and he gagged every single time. So, instead of torturing the poor kid - I tried the maple syrup. For now, that seems to be the way to go.

Negatives - I'm pretty sure I've seen some die-off the past few days. His stimming has increased and his eye contact has decreased. I've been fighting the die-off with upping his dose of Biotin everyday, and even giving activated charcoal on the second day. It seemed to help.

Positives - The negatives have decreased as of today. We are now on day 6 (although, the first 2 days were probably useless because he wasn't taking the juice). The eye contact is back, and he's much easier distracted from the stimming. He's sleeping better, too. Yesterday when I picked him up from school, his teacher told me he had spontaneously labeled some cards they were cutting out. She said one of his teachers was sitting at a table and cutting out picture cards and he walked over and started labeling them (correctly). Now, he does that at home occassionally, but apparently hasn't done it yet at school. She said that typically means he won't have to stay in the communications class and will eventually move out and into the support center, before heading to a regular class. Of course she's only speculating, but, it's nice to hear the "hope".

I told her that we would work on things over the summer and she acted a little concerned about him progressing TOO much - she doesn't want him to not qualify for services next year. I tend to agree with her. Yes, I want him to progress - and quickly. I want him to be happier and able to communicate, of course! But, I know that we need intense therapies for the next 2 years, or he'll have less of a chance of fitting in with his peers at some point. So, I don't want them to pull him out of this classroom because he wouldn't get near the intense ABA that he's getting there. So, it's a catch 22, I suppose.

So, will report more next week (or sooner if needed) regarding the Enhansa and the results.

Oh, I almost forgot!! Today, he said "Hi Uncle D" when his Uncle walked in the door. Yes, it was prompted, but stringing 3 words together .... as far as I'm concerned, that's a sentence.


DAN! Update

We had a DAN! appointment yesterday. Labs looked good, although Holden may be slightly anemic. Which isn't surprising, since his diet is pretty limited. We will keep a watch on that and see what his numbers are next time around.

Will continue to chelate using EDTA & DMSA combo 1x/week for now. If we think he's plateauing, we'll consider 1-2 IV's per month, and suppositories 1-2 times per month to see if we can kick things in gear! But, for now, sticking with suppositories.

I'm going to start him on Enhansa on Friday. We're to start out at 150mg per day for 2 weeks. If we see improvements, he wants us to stay at that dose. If no improvements, we can increase a little at a time until we do see 'good things'.

We are going to do a 1 month round of Diflucan to see if we can get the yeast markers down. Then, we'll return to Nizoral. Sometimes I think if we could just get the yeast under control - we'd see some major gains. But, chelation will always stir up yeast ... so as long as we're chelating, we have to deal with yeast issues as well, unfortunately!

So...we march on!


the normal ups and downs

As it normally is with autism, just when you think things are worse than they've been in a long time - this kid comes out of it overnight. Literally, over night.

Yesterday, Holden was still having an increase in "autistic symptoms". Stimming, lack of eye contact, not interacting with us as much, etc. Today, he has been a different kid. The only thing I've done since yesterday? Chelation. Last night, we chelated with 1 DMSA suppository and 1 EDTA suppository. DMSA at around 8:30pm, and EDTA at 9:15pm. Typically, for Holden, the day after chelation is a challenge. Then he eases out of it by the 2nd day. It was different this time. Today, he woke up happy. He was playing with Jackson, and more importantly, he wanted Jackson to play with him. He wanted Jackson to chase him and they laughed and ran throughout the house. He was singing, playing, smiling, and loving. So different than how he was even just yesterday.

Who knows why. I don't know if it's possible for it to be caused by the chelation last night. I suppose it could be...maybe we just got a great pull with this round? Or, maybe he just felt better today, physically.

Whatever it was ... it made my Mother's Day the best ever.



I haven't felt much like posting lately, which is why there's no updates since 4/24. The past week - 2 weeks has been challenging. Holden's symptoms have gradually gotten worse over that period of time. As of yesterday afternoon, he's extremely defiant, angry, looks as though he hasn't slept in a week (even though he IS sleeping), quiet, unhappy, unable to focus, and has lost a lot of eye contact. I am praying this "regression" doesn't last too long. I have a couple of theories as to why this one's happening, but then again, I could be wrong. This may just be another "healing regression" that he will come out of on his own. It's just that this one's lasted longer than the one's previously. Yesterday afternoon, I "fought" with him for hours because he would climb up on the arm of the couch and jump off. Might not sound too bad, and kind of "typical" for his age ... but we have a tile floor. And he wasn't bending his knees to brace himself for the "fall" - he would stiffen up his legs and I was so scared he was going to break an ankle or something! I tried telling him "no!" numerous times (which normally works for him), I tried putting him in time out, I tried sitting in his way so he couldn't get to the arm of the couch. He would just try climbing over my head. No matter how many times I would take him down and tell him "NO!", he would wait unil I was 10 feet away and do it again. It was exhausting. When Dietrich came through the door, I went out of it. I went for a walk and stayed gone for an hour. I just needed to get away.

My ideas:

- Yeast. We've been chelating now for 2 months using EDTA + DMSA on a weekly basis, using suppositories. Before we began this round, his OATS showed extremely high levels of yeast, so we treated with Nizoral for a month before starting chelation (and we're still using Nizoral).

-He's been off the NuThera for 2 days now because I haven't been able to order it yet. But, NuThera is just a multi - so, would it cause this much of a reaction to not be taking it??

-I've given him OoO twice since Saturday - just a few drops at a time. ?????

-Sensory input? That has nothing to do with the being tired, etc. But, the jumpping off of the couch and landing like that - kind of 'shocks' the legs and joints. I thought about this this morning, so I'm going to check into our OT benefits.