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. 

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!

Chelation update – Round 10

Wow. I am not sure where to begin. We have seen a lot of beautiful gains over the last ten weeks, but also a few negative side effects.

Let’s start with the good stuff. There is so much!

Language, language, language!

There is no doubt that Aidan’s language has improved since we began chelation 10 short weeks ago. Before we started chelation, Aidan was definitely good about communicating his wants and needs (ex: “Mommy, I want more water please”), but since chelation, he has become more engaged with the world around him.  He now narrates every little thing he encounters. It’s funny because before Aidan was talking, these were the type of kids that got on my nerves. You know, the kids that point out the obvious about EVERYTHING just to talk. It is pretty typical 2 ½ year old- 3 year old behavior. Of course now that Aidan does it, I LOVE it! To give you some examples: “The hippo is sleeping”… “He’s opening his eyes”… “There is a drum set on my shirt”… “Mommy is sitting on the couch”… “Mommy is cooking breakfast.” OK, you get the picture : ) It is constant and so wonderful to listen to!

He has also started to string together ideas and use successive sentences. For example, while we were at Physical Therapy (we will call his PT Mr. Phillips) Aidan said, “Mr. Phillips has whiskers. Daddy has whiskers. Daddy is a military man.”  It was wonderful to hear him pull together ideas to tell Mr. Phillips about his Dad.

Best unprompted new piece of language from my munchkin…drum roll please… “Mommy, I love you!”   Yep, he loves me! He came right up to me in the morning, hugged my legs and said it. My heart stopped beating in that moment. Those are the words that EVERY mother of a child with Autism hopes they will hear one day, and I heard it.  Yes, I am all warm and fuzzy inside just thinking about it. And believe me, I KNOW how lucky I am to have heard these words.  It is a blessing. I know mothers of children twice Aidan’s age who have never heard these words, and yet they still fight like hell and advocate for their kids, day in and day out.  These are the mothers who truly deserve to hear those words.

Cognitive ability

Aidan has been working on following directions with his ABA therapists for about six months now. He was still having difficulty unless he had a visual aide to help him. If you gave him directions without gesturing or showing a picture, most likely he would get confused and stand there frozen because he had no idea what to do next.

Now, I see his PT or ABA therapists give him direction and he just follows along right away. Without any gesturing or pictures to help him along.  For example, I made him eggs the other day and put them on the table. I guess he didn’t realize they were there because he came to the back room to get me and said, “Mommy, I want eggs” and I said, “well then go get them! They’re on the table.” He turns and walks down the hall toward the dining room and returns holding the plate with his eggs. I was shocked!

Answering questions

For the longest time I have said things to him like, “What are you doing?” but I never expect an answer. I’ve just been hoping for the day that he will know that he needs to respond.  The other day I asked him “Whatcha doin’?” and he answered me, “coloring.” In a similar moment I asked him the other day what he was drawing and he answered me, “A rocket ship going up to space.” SAY WHAT!?!?!? Are you serious kiddo? Cool!

Fine Motor & Gross Motor

He can drink from a cup!!!!!!! And he drinks from a cup like he has been doing it all along! No awkwardness whatsoever!

He has also begun to truly jump. He jumps like a little frog now, bending his knees all the way down before springing up and out. This is a huge difference from his little bouncy stim where he jumps in place.

Aidan’s physical therapist wrote a list of goals for him to reach by the end of the year. After only 4 sessions, he told me that he would need to re-write Aidan’s goals. He was blown away by the strength and coordination that Aidan gained in such a short time! And as I wrote in an earlier post, he began riding a tricycle after a few rounds of chelation.

The not so good things that we have seen over the last ten weeks...

Aidan has had lots of tummy issues. When our doctor told us that we better have his gut in good shape before chelating- he was right! Chelation has brought about yeast and bacteria flares that have caused a lot of alternating diarrhea and constipation for Aidan. Because of this, we have seen some aggressive behaviors reappear (which we are able to get under control when we stay on top of the Goldenseal and Culturelle). We have also had some of the spacey behaviors reappear (staring up at the lights), but have been able to control it with upping his antifungal.

He has been more sound sensitive since beginning chelation. He puts his hands over his ears and seems bothered by certain music. We haven’t seen this since he was 2 ½ and he would melt at the sound of a cow mooing or a horse neighing. I read about “old” behaviors and issues returning during chelation in a recovery story that I read (here). This definitely prepared me for our visits from the ghost of Christmas past : )

We have also noticed that his transitioning issues have returned. He is back to having a really hard time saying good-bye to people, or changing activities/locations. My husband and I have debated on whether or not this is tied to the changes in his body that he is experiencing vs. current family situations. My husband has had to go out of town a few times recently, and has been working extremely long hours to the point where Aidan does not get to see him every day. We think this could be part of his regression with transitioning. He does not understand why Dad is not home every day, and I think this makes him worry that Mommy and some of his therapists may not come back.

He has also been tapping his teeth CONSTANTLY. A few other Warrior Mammas told me that their child did this due to either yeast or calcium deficiency, so I am thinking it could be a calcium deficiency since we seem to have yeast under control. We’re off to the doctor for blood work tomorrow, so we’ll know soon enough!

His scripting and perseveration have been through the roof! It is driving me a little batty! I try to redirect him, but there are times where I just can’t bring him to a new idea. “Don’t bite me, cookie monster. Don’t bite me, cookie monster. Don’t bite me, cookie monster. 

Don’t bite me, cookie monster.”  “Aidan, come look at what Mommy has. What color is the frog?”  “Don’t bite me, cookie monster.”  UGHHHHHHH! Finally, I will just say, “Aidan, no more. Stop” and that seems to be the only way to stop it.

I look forward to writing the next update. I plan on writing an update for every ten rounds he completes. We actually just completed Round 13, and I already have more good news for the next update : )

I will leave you with a few more “concerns” from our developmental pediatrician appointment that have disappeared with 10 rounds of chelation.

Defiant behavior (you want him to do something- he will pretty much always do the exact opposite)

Squints his eyes as if he is having trouble with his vision. Like he can’t see straight.

Still not understanding or responding to simple instructions (i.e. hold-on, stay there)

Thinks of timeout as a game – does not understand

So, out of the original 32 concerns we had. We are left with 9. Of the 9 concerns left, 5 of them have improved dramatically. It has been almost 8 months since we came up with that list (you can view the original list by clicking here). Again, certain symptoms of Autism ARE TREATABLE AND REVERSIBLE! Don’t let anyone tell you otherwise!!!

Where we are today

Here is a summary of the things that we feel have helped Aidan the most since receiving the diagnosis:

ABA

After receiving the Autism diagnosis, Aidan was eligible for 10 hours of ABA therapy per week under my husband’s insurance plan. We found two wonderful therapists for him to work with after school, and have seen many improvements since he started. His receptive communication skills have really improved. He has become interested in puzzles again (completing 48 piece puzzles on his own)!  He can now follow two (and sometimes three) part instructions! He can answer a few questions (What’s your name, how old are you, etc.).

ABA has definitely been a huge push in Aidan’s progress.

Occupational Therapy

The doctor also referred Aidan for OT twice a week. This has also been really huge in his development. His OT is trained in Floortime/DIR and when he is working with her, you really see a different child emerge. He has much more spontaneous communication and imagination. Floortime just seems very organic, while ABA can be a bit rigid at times.

Our ABA therapists are very playful with Aidan, however, I find that with ABA, it is easier for Aidan to get stuck on scripting. Sometimes after a session he will say, “do this” or “eyes on me!” and you know it is from an ABA session. Floortime never uses language like, “do this” because every lesson flows naturally with whatever the child seems to be focusing their attention on during a session.  It’s like play therapy.

I wish we could afford to do 10 hours a week of ABA and 10 hours a week of Floortime to get the best of both worlds. What I wouldn’t do to win the lottery and pay for any and all interventions that may benefit Aidan! : )

Methyl B12

Just as Aidan began ABA, we started giving him Methyl B12 injections every three days. This was another great “push” in the progress of his development. We did not notice anything with the first few shots (just some increased energy), but by the 3^rd injection we really noticed an increase in language, and he finally started to include us in his play. He would come find us in another room and say, “Come play in the playroom.”  It was wonderful!!

Preschool

Aidan began special education preschool one month after being diagnosed. Honestly, the only progress that I have noticed from this was in his ability to transition from school to home and vice versa. It was VERY hard for him for the first month or so, but I think that having that daily routine really helped him become comfortable with making changes. We started the Methyl B12 injections about a month after he started school, and the teacher told us that his progress during that exact time was “exponential.” 

At the end of the month we will move Aidan to a new Charter school that has opened specifically for children with ASD. All of the teachers and aids are trained in ABA. We are very excited!

Andy Cutler Chelation Protocol

Aidan recently did a DMSA challenge test, and we found that his lead levels were off the charts! He was moving some other metals as well (mercury, aluminum), but from all of the other parents I have talked to (and the reaction of our DAN! Doc), I think Aidan is one of the exceptionally high cases. We went ahead and did an EDTA IV challenge as well to see if that would move other metals as well as the lead. It didn’t, and unfortunately I don’t feel like the EDTA was a good thing for Aidan. Ever since we did this he has been tapping his teeth together obsessively and he seemed to have some tummy issues.

Getting the results back put a lot of his developmental issues into perspective for me, but at the same time it was scary as hell. Results like this make you start thinking that there is a chance your child has PERMANENT brain and nerve damage.

I immediately began researching different chelation options and read Amalgam Illness. I found that Andrew Hall Cutler’s protocol was the safest thing for Aidan. I encourage any parent that is considering chelation to read his book. In my opinion this is the ONLY way to chelate. Other options are far too dangerous and will redistribute metals in the body.  I wish I had never done a challenge test!

We just recently finished round 6 using both DMSA and ALA, and we have already seen some wonderful gains. He is putting together longer sentences on his own. He can finally ride a tricycle! He also seems to be going out of his way to get our attention and try to converse (of course it is not yet appropriate, but he tries!). He also is beginning to show the intial signs of empathy- his OT was pretending to cry and made a sad face. Aidan made a sad face and said, “you’re sad.”  That was the BEST!!!! I can’t even tell you how many times I have been hurt or cried in front of him, and he just goes along as if nothing is wrong.

Yeast Treatment!!!!

A steady yeast protocol has been so important to Aidan’s progress. When yeast gets out of control I feel like it masks all of his gains. Right now we just use caprylic acid, probiotics, culturelle, and goldenseal. I was very aggressive with this when we started chelation. I dose throughout the day (always at least 4 hours apart so that your antifungal is not canceling out the probiotic). For the first 3 weeks of chelation, I would dose caprylic acid/ goldenseal when Aidan woke up, then probiotics/culturelle around noon, then another dose of caprylic acid/goldenseal in the late afternoon, and a nice big dose of probiotics/culturelle at bed time.

I always suspect he is having yeast or bacteria issues when I see puffiness or darkness under his eyes. Usually it is bacteria when it is accompanied by aggressive behaviors.