Bacteria
So, let me start with an update on the bacteria issues. We did a stool analysis (so that I could prove to myself I am not crazy and there IS bacteria) and that came back with a few things that were out of balance. It said he did not have yeast (yeah, right!). The interesting part was that his strep numbers were high. I had recently been worried that Aidan was exposed to someone with strep because out of nowhere he began to display several symptoms associated with PANDAS (extreme OCD, perseverative speech, clingy, VERY ADHD). It was like it happened over night, and it seemed to coincide with him being sick a few days prior. I freaked out a bit and set up an appointment with his doctor. He was also concerned that it could be PANDAS and we began a round of Azithromycin. His inattention/ADHD behaviors improved almost immediately, but the perseverative speech got MUCH worse.
Two weeks later we got his stool analysis and urine analysis results and found that he had high strep in his stool and some clostridia. The urine analysis indicated that his bacteria and yeast levels were high. We realized at that point that these behaviors were probably just related to the high bacteria and yeast, and not PANDAS. Yay! So, I made the decision to go with prescription medication to fight the bacteria and the yeast (since our naturals don’t seem to have kept everything under control). I really hate to use antibiotics, but I remembered how effective they were at helping him with bacteria when we had this issue a year ago. As a side note – we always get our medications compounded to avoid any of the “bad stuff” getting in there. If you get a standard prescription for certain antibiotics and antifungals they can contain things like aluminum. I feel it’s worth the extra money to get a clean prescription through a compounding pharmacy. Just my 2 cents : )
So, we’ve begun treating his bacteria with Flagyl. We are on day seven and things have started to get back to normal. His speech has returned to where it was (receptive and expressive), his eye contact has come back, and the meltdowns have lessened. On the flip side, the Flagyl has made the yeast HORRIBLE. For the last 7 days he has been climbing the walls! His stimming has increased (spinning in circles, chomping his teeth together, standing on his head) and it looks like he wants to just climb out of his own body. He is also waking frequently in the night and extremely goofy. I can’t wait to start the antifungal in 3 more days!!! Luckily, we will be done with all of this once school starts, so he will be back to feeling better.
Round 21 of Chelation
We finally reached the big 20. I remember feeling like it was so far away when we were at round 10. Little did I know, it was! We have had to put off chelation several weekends this summer for travel and yeast/bacteria issues. I was hoping we would be up to round 30 by this time, but we just finished round 21.
We have had more positive gains (and also some setbacks) over the last 11 rounds.
Round 11 - Aidan actually played with a little girl at the park! It was so special to see. This little girl was so sweet. She must have been 7 or 8 and she just kept trying to talk to Aidan over and over, but of course he ignored her, and I could feel my heart slowly breaking. Then, after she tried several times he finally noticed her. He smiled and started chasing her because she wanted to play tag. They were both laughing and running. Ahhhh, I am crying even writing about it! It was awesome! At one point she fell off the play equipment and he stood over her and said, “Madison, are you ok. You fell!” My husband and I looked at each other in complete shock! He actually cared to check on her, AND he used appropriate language, AND two sentences! It is the best weekend we have had to date! Unfortunately, he has not seemed to notice other children since, but now we know it is possible!
Round 12-14 - didn’t bring any new changes worth noting.
Round 15 – He woke up in the morning, came to our room to wake me up and said, “Good morning Mommy! Did you have fun at sleep?” It was adorable. He had never asked me a question before. Every day after school I ask him, “Did you have fun at school today?” and it was obvious that he took that phrase to create his own question. His yeast really kicked up on this round and continued to be a problem that I couldn’t seem to get under control.
Round 16 – I was eating a snack and he walked over to me and said, “Can I have a bite?” He also started to answer me when I would call his name (ex: Mom: “Aidan?” Aidan: “What Mommy?”). Bacteria seemed to become an issue at this round. His OCD increased and he was easily frustrated.
Round 17 –He tried many new foods on this round without protest. He asked for certain vegetables in his soup (things he had never tried before). He also had a great conversation with Grandma and Grandpa, answering a lot of their questions. He got really good at telling people, “No!” or “Stop it!” or “It’s my turn!”
Round 18-19 – All yeast and bacteria related behaviors and a regression in expressive and receptive communication.
Round 20 - Still lots of issues with yeast/bacteria, but between Round 19-20 he started going on the potty. YAY! Six months ago (before chelation) we tried to start potty training and it was a NIGHTMARE. We had him sit on the potty every 30 minutes and he would pee all over the floor 2 seconds after he had been sitting on the potty and wouldn’t go. I felt like it was going to be a huge uphill battle if we were ever going to get him potty trained. I put it on hold, because I felt like I would “know” when he was ready.
The first week of July, he came home from summer school and I told him that he could have a remote control Mader (from the movie Cars) if he went pee-pee on the potty. I put him in underwear, and 2 hours later (during his ABA home session) he went pee on the potty and has been in underwear with NO ACCIDENTS since!!! He has done such a great job! I was so nervous the first time I took him out to run errands with me, but he even went on the potty at Target! Our biggest challenge has been getting him to poop on the potty. He will usually hold it until bedtime (because he knows he can go in his pull up). He has only gone #2 on the potty 3 times. When he can’t hold it in during the day he asks me to put on a diaper. I usually cave, because I would rather him get it out then hold it in. It will be nice when he feels comfortable enough to go poop on the potty 100% of the time rather than 10%! I have tried everything too! I bought him toys I know he wants and bribe him with it. But, it’s only worked 3 times.
Round 21- nothing new just yeast, yeast, yeast, and more yeast with some bacteria. Since we have begun treating with prescription medication, his receptive and expressive communication has returned.
We’ll start Round 22 once yeast is under control again. I have also decided to try the next round with ALA only, in hopes that the yeast won’t get so bad.
My only struggles with the Andy Cutler protocol have been the awful yeast and bacteria flares and not getting a full night of sleep on the weekends. My husband and I laugh about how we used to look forward to our weekends, and now we dread them because we know we’ll be waking up every 3-4 hours to chelate Aidan.
We recently submitted a Hair Elements test through Doctor’s Data and I am awaiting the results. It will be interesting to see if Aidan meets the counting rules (I am sure he will) since his lead, mercury and arsenic were high on the Urinary Porphyrins test. I am also anxious to get myself tested. Based on all of Aidan’s test results, I know I am mercury toxic too.
