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

Gut Bacteria Influences Brain Chemistry and Behavior

You can read about the study by clicking (here).

Aidan, we are not alone

 "Imagine you are seated at a table among several people. Right beside you, your child is choking helplessly. You are frantic, doing everything in your power to save him. The clock is ticking. He is turning blue and the life is draining out of him. Some of the folks at your table tell you to calm down. Take it a day at a time. The rest? They just look away." 

-Lisa Joyce Goes

From the moment we started Aidan on his biomedical journey, I have read reports from fellow Warrior Moms and Dads about finding heavy metals, oxidative stress, methylation impairment, stealth viruses, and major gastrointestinal issues in their children. Every day since, I find myself carving time out of my day just to obsess analyze what is causing Aidan’s Autism. I know it is something. I know that we had a typically developing child that began to slip away from us over a period of months.  And I can look back at videos and pictures to illustrate my once engaged child turn into a lost boy.

Why doesn’t anyone believe this? Why is it impossible to explain our situation to Aidan’s teachers, therapists, and worst of all friends and family? You get the obligatory head nods and the look of pity when you say that your child’s autism was brought on by environmental factors.

I know that more people like me exist. I chat with hundreds of them on the Yahoo! Autism boards and read their comments on the Age of Autism, but why is it so hard for some people to grasp that a child could be helped by biomedical intervention? My husband has always had a theory that these are the people who believe whatever their mainstream doctor (along with the evening news) tells them. I know he is right and it has always been frustrating to me that there is not more news coverage on families touched by Autism that look like ours. Families that are truly in the trenches trying to help their child in EVERY way possible.  Enter Alison MacNeil on the PBS News Hour. FINALLY! A fellow Warrior Mom who is sharing her son Nick’s story, that eerily sounds like so many others that have gone unnoticed and undocumented.

If you haven’t seen Nick’s story, you can watch it below. Be prepared to cry like a baby. I have watched it about twenty times now and I cry every time! It takes me back to the days of fighting Aidan’s doctors, and getting no answers. 

Watch the full episode. See more PBS NewsHour.

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!!!

The Toxicity of Mercury and Its Relationship to Neurological Illnesses and Oxidative Stress by Dr. Boyd E. Haley

Specific Carbohydrate Diet

I had originally put Aidan on this diet after realizing that he had an issue with yeast, and since I couldn’t get a doctor who would prescribe an antifungal at the time, I wanted to keep it under control as best I could by natural means.

I was still VERY new to this whole world of alternative diets, Autism, and biomed. I had not really read much on the effects of phenols in certain foods. So, I read Breaking the Vicious Cycle and a week later put Aidan on the diet. I followed the introduction part of the diet to the letter. The online Yahoo Group that I joined kept stressing how important it was that you not stray from the diet. Well, when you have a kid who was formerly constipated, and you feed him nothing but carrots, chicken, turkey, applesauce, bananas or eggs,  things get worse. Since the intro diet is only to last a few days, and stage 1 should be followed for at least a month. I asked other people on the board, “should I skip ahead to some foods that will help my son have a BM? And remember, this is before I knew about Magnesium!! Every response I got said that I needed to stay the course and that this was a good sign. Hmmmm…this just doesn’t seem right to me, but I figured since they had been through it and seen such amazing results with their own children they knew what they were talking about., right? No, I was wrong big time. This was the first time we saw Aidan walk on his toes. He hadn’t gone to the bathroom in 2 days after eating a lot of food. Ahhhh! So THIS is why so many kids with Autism walk on their toes! Their little tummy hurts so bad that even just the pressure of walking hurts!

I gave Aidan an enema, and I pushed forward to another stage of the diet, where he might get more foods that would help him “go”.  I added fruits, veggies, and some almond meal muffins here and there. His bowel movements did not seem to improve, as a matter of fact they were BETTER when we were doing GFCF. However, his language started to increase again. This time he was saying words while we were out with other people (normally he would just talk to me at home. I don’t think anyone thought he could talk). While he was adding words and songs to his vocabulary, he started acting really spacey. He would shake his head around, look up at the lights, he would get really hyper and was having trouble going to sleep at night again. I didn’t know what was going on.

It wasn’t until a month later that I figured out that everything he was eating was high in phenols and Aidan has a phenol sensitivity. It would be almost impossible to keep him on this diet without phenolic foods. I had never seen this addressed on the chat board for this diet, or on the website. I was a little mad at myself for not figuring this one out sooner. I went with the crowd, and hurt my son. Why didn’t I follow my gut when I knew something didn’t seem right?

From that moment I realized that our family would be given many different avenues to explore during Aidan’s recovery, but it would be up to me to always follow my gut. My feelings about what was good or bad for Aidan have always turned out to be right. I would not follow anyone else blindly even if they did “recover” their child. Every one of these children are so different, and it is up to us as parents to figure out the safest path for our child. I promised myself I would never let Aidan down like that again.

So, when we put Aidan on the diet the second time around, I gave him mostly pureed carrot “pancakes” with egg, and very very little meat (at the suggestion of our nutritionist). When we moved to the next phase of the diet, I did not give him bananas or applesauce (because they are both constipating foods). Just these small changes made a HUGE difference. Aidan was doing wonderful on the diet.  He was having 1-2 perfect BM’s a day. He just seemed a little more connected too. I really wished I had followed my gut and removed these foods the first time around.

If you are interested in learning more about the benefits of the Specific Carbohydrate Diet,  you can read Breaking the Vicious Cycle: Intestinal Health Through Diet by Elaine Gottschall and check out: 

http://www.breakingtheviciouscycle.info/

Here we go…

Within one month of doing the protocol that the Thoughtful House suggested, we were seeing improvements. The dark circles under his eyes started to go away, and as we completed a round of Diflucan, we heard him utter his first descriptive 2-word sentence since his regression, “fish swimming.” He said this as he lifted a toy fish up and moved it back and forth. Aidan was now almost 3 ½, and he was starting to do the things that we saw glimpses of when he was 2.

When we started adding in supplements, we found that not everything agreed with him. This made the process take a bit longer. I would add something and notice that it would make him constipated or aggressive, and then I would have to find a better alternative. Cod liver oil/ fish oil has always been an issue for us. It wasn’t until recently that I realized that it was because we were using orange or lemon flavored oil. Aidan just has issues with citrus fruits for some reason. Nordic Naturals Peach flavored Cod Liver Oil has been a winner for us.  The original calcium/magnesium supplement we had him on really bothered his tummy. I found the Thorne Cal Mag Citrate to be a perfect combo. We noticed a real improvement in Aidan’s bowel movements once Vitamin C and Magnesium were added. I know a lot of people have diarrhea prone kids, but mine was always constipated. Aidan would go 2-3 days without pooping. When we first started the GFCF diet, and added enzymes he began going daily. Then we switched to the Specific Carbohydrate Diet (which was NOT a match for him in the beginning!), and he got really constipated again. After this, I had the hardest time getting him regular again. The magnesium and vitamin C definitely helped. I definitely plan on writing my next entry on our experience with the Specific Carbohydrate Diet. It can be a miracle worker for some kids, and disaster for others.

At this point we had just finished a round of antibacterial and antifungal.  Aidan was now taking a multivitamin, some extra vitamin C, fish oil, probiotic, calcium and some magnesium.  Now it was time to put him back on the Specific Carbohydrate Diet at the advice of our Nutritionist from the Thoughtful House. I was very nervous because we had such a bad experience the first time around. 

All DAN! Doctors are NOT created equally

I made an appointment with a DAN! Doctor. When we met with the doctor, he treated me like the poor parent who can’t come to terms with her son’s Autism. He did not seem to believe me when I said that I had never seen any “signs” or “red flags” for Autism earlier in Aidan’s life. My Mother (who has a background in early childhood development) was in the appointment with us, and I remember the look on her face when the doctor implied that I was a moron having not realized that my son was on the spectrum until recently. It was comforting to have someone else in the appointment with me who had SEEN my son develop and SEEN that he had developed some odd new behaviors and lost skills that he once had. I knew I wasn’t crazy, but damn! This doctor really had a way of making me feel like a complete idiot.

He ordered several tests- Organic Acids Urine test, Stool samples, CBC, Vit D, Ferritin, Zinc, and a Urinary Porphyrins test. He asked that we come back in one month to review the tests. I really didn’t like him, but I figured he could get us the information and resources we needed to help our son.

One month later, I took Aidan back to review all of the test results. He was deficient in just about everything. BIG SHOCK! Vitamin B12 was non-existent, Vitamin D deficiency, iron deficiency, the list goes on. The stool samples did not show yeast, but I KNEW he had yeast because he had a red ring around his bottom ever since a round of antibiotics. The OATS test did show bacteria and yeast levels out of range. The urinary porphyrins showed potential elevated mercury and lead.

He told me that the Urinary Porphyrins test was normal. No need for concern (even though I KNEW it showed risk for mercury and lead). Again, I thought, “He is the DAN! Doctor, he knows what he is doing. Maybe I misinterpreted the test.” He also told me that because yeast and bacteria did not show up on the stool sample that is was nothing to worry about. WTF!?  His solution was to begin giving Aidan 2,000 IU of Vitamin D a day, and change his multivitamin and probiotic to one that he carried in his office.  That’s it! I asked about Methyl B12 injections since he was so deficient, he said that once the probiotics kicked in to help heal his gut he would start absorbing B12 better and it shouldn’t be a problem. I said, "Well what if he CAN'T absorb B12?" He didn't feel that would be a problem!

I was so mad! We spent so much money on this doctor and he was not going to offer us any of the things I had read about. I had to fight so hard just to finally get him to prescribe an antifungal. He prescribed one week of Nystatin which did NOTHING! Aidan’s butt was still bright red and he would stay awake laughing at all hours of the night.

I felt helpless, I knew I needed to do something, but at that time, I was still so lost! I hadn’t even heard of Dr. Bock, Julie Mathews, etc. I just knew from the Generation Rescue website that I needed a DAN! Doctor, and this was the only one close enough. At that time Aidan was home with me ALL day, and I never had much time to research. I had ordered books from Amazon that I barely had time to read.

Luckily, my husband started reading Hope for the Autism Spectrum: A Mother and Sons Journey of Insight and Biomedical Intervention by Sally Kirk. He started telling me about several other books that we needed to order so that we could really be informed when meeting with Aidan’s doctors.  At this point, my husband knew more then I did about the reasoning behind the typical biomed protocol used for children with ASD.

During this time, I would complain to my son’s Occupational Therapist about how horrible his DAN! Doctor was. Little did I know that just by telling her about my frustrations, she would put me in contact with a new person that would change our son’s life.