Update - Round 21 & Bacteria

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. 

Beautiful Son

A few weeks ago, during one of my Autism Google-a-thons, I came across a trailer for the documentary, Beautiful Son.  As soon as I watched the preview, I was dying to see the documentary in its entirety. I searched Netflix to see if I could rent it. Nope. Searched the public library’s catalog to see if I could check it out. Nope. So I bit the bullet and bought a copy online from the film’s website. It was well worth it!

Don and Julianna King did a wonderful job telling the story of their beautiful son, Beau along with what so many of us in the Autism community have experienced and seen in our own children first hand. Watching home video from the first years of their son Beau’s life was like reliving Aidan’s first two years. I could relate to their experience 100% and it made me want to take everyone in Aidan’s life and say, “I need you to watch this documentary. This is what happened to us, and this is what we are up against.”

Beautiful Son helped me heal a piece of my heart that was broken the day we received Aidan’s diagnosis. I can’t put it into words, but something about the way the King’s delivered their own story alongside so many others made me feel at peace. It was the first time that I could breathe without feeling like I might drown. It was the first time I was able to look at our situation and honestly say that even if Aidan never loses his Autism diagnosis, it’s ok. I know that our family is giving the fight of our lives like so many others, and Aidan will have the best possible life he can have.  I wish more people knew about this movie! I plan to share it with all of my warrior friends!

http://beautifulson.com/

Nutritional and Metabolic Status of Children with Autism vs. Neurotypical Children, and the Association with Autism Severity

"The autism group had many statistically significant differences in their nutritional and metabolic status, including biomarkers indicative of vitamin insufficiency, increased oxidative stress, reduced capacity for energy transport, sulfation and detoxification. Several of the biomarker groups were significantly associated with variations in the severity of autism. These nutritional and metabolic differences are generally in agreement with other published results and are likely amenable to nutritional supplementation."  Click (here) for the full study

Bacteria rears its ugly head

Oh how I hate you evil bacteria. You have messed up my kid’s head too many times and it is driving me crazy to keep you under control. I am beginning to realize that my kiddo really can’t eat any rice, bread, pasta, etc. I think it is the only way to keep this under control while we chelate.

For the last few months I have stayed on top of giving Aidan natural antibacterials and tons of probiotics, while cutting back on his carb intake (but not eliminating it completely) this no longer seems to be working.

A few months ago, it was attack of the killer Aidan. He scratched up my throat, screamed in my face, and could not be calmed. Once I put goldenseal back into the rotation and upped the Culturelle, he was back to normal…until now. I had to take him off of all of his supplements including all natural antifungals and antibacterials for an entire week in order to complete a new urine analysis and stool analysis. He seemed fine all week but for the last two days he became extremely ADD like. I could not keep his focus on any one thing, and he was perseverating on certain phrases. That was when I started to suspect bacteria, but this morning it was confirmed. From the moment he woke up he was “stuck” on a few different phrases and became aggressive with me over the smallest things. Last night when picking my car up from the shop, he had a complete meltdown because he wanted to get in the car parked next to ours. It took me about fifteen minutes to get him into our car. I tried to explain over and over that we would be riding in our car and that the other car did not belong to us. Of course explaining did not help and he was screaming and crying so hard he could barely breathe. I finally wrestled him into the car and he stopped crying about two minutes into the drive home. Like I said, I HATE YOU BACTERIA!!! Even two weeks ago, I know this wouldn’t have happened.

The thing that makes this so hard is seeing your kid when things like this are not effecting his body, and then watching it take hold of him. It is an awful feeling. Unfortunately it is an experience that you can’t really explain to others because while you have done the research and seen the specific changes in your child when treating things like bacteria, no one else would ever believe that bacteria could effect your child’s behavior that dramatically. But it does!

Seventy percent of our immune system is found in the gut. When we interrupt that delicate balance, it shows up physically and mentally. The analogy I have always loved talks about how we feel after we have a beer or a glass of wine, different, right? I know people who can get downright evil if they have had too much to drink.

Everyone keeps telling me that by round 50 of chelation, bacteria and yeast should be a bit more under control, but it can’t come soon enough!! We are currently in the middle of round 19, and 50 sounds so far away! Looking at the bright side, his gut would not go through these periods of imbalance if we were not moving metals.

Back to increasing the antibacterials and removing all grains this time around. Wish us luck!