February 28, 2011

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. 

February 25, 2011

Enter the real DAN! Doctors...Thoughtful House Center for Children

So, Aidan’s occupational therapist put me in contact with another patient’s mother who had some success using biomed to help her son. She immediately recommended the Thoughtful House Center for Children in Austin, TX. As if the stars were not already beginning to align for us, my husband’s job was moving us to Texas! This was perfect!

Things were beginning to fall into place. A few months later, we had our first appointment with the Thoughtful House.  It was exactly what I hoped for. They understood every symptom, regression, and behavior that I explained. No one judged, or watched Aidan to pick apart his every move. For the first time, I felt like I was in the presence of people who truly wanted to help my child. I knew we were on the same page. I wanted my son to be healthy again, and they were there to make sure that we were doing everything possible to make that happen.

I handed over all of the test results from our previous DAN! Doctor, and within minutes I heard the words, “So it looks like he may have some toxic levels of mercury and lead”
JUST LIKE I THOUGHT! Ugh! I wanted to go back to our last DAN! Doctor and say, “Why do you even order tests that you can’t decipher the results?”

During our visit, we also found that Aidan DID have some issues with bacteria. The plan was to treat the bacteria, add supplements (more vitamin D then just 2000 IU!), and then schedule a follow up appointment to discuss MB12. YES! Finally we are getting somewhere!

That night when we went back to our hotel room, I cried. I was so happy because I knew we were taking the first step to healing our baby’s little body. I imagined him looking at me without puffy, dark circles under his eyes. I imagined him having the energy to do all of the things that he could once do! And while I dreamed of the progress he would make, I prayed for every other family that I met in the waiting room of the Thoughtful House that day. I met Mothers and Fathers that had driven or flown in from out of state, and in some cases the other side of the country, just to take their child to the Thoughtful House. I felt so lucky that we lived so close. 

February 24, 2011

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.

February 23, 2011

Getting back his first Evaluation


When we got back his evaluation from Early Childhood intervention. They said he had a speech delay. He was about to turn 3, and his speech was 12 months receptively, and 21 month expressively. They talked about other children that they worked with that had Autism, but made it seem like that was not a concern with Aidan. Aidan only had a speech delay.

At that point, I was comfortable with their assessment. I did not want my kid to be stuck in a box with the label of Autism, and if we could avoid it, we would.

We were offered Speech Therapy once a week for 30 minutes, to help get Aidan’s speech back on track. Yes, just 30 minutes a week for a child with almost a two year speech deficit.

When we started speech with early intervention, it was awful. I hated taking him. It didn’t even seem like they knew what they were doing. There were two women working with him, one was a Speech Language Pathologist, and the other was just working for ECI with no prior experience. They would both give him direction at the same time, and they never seemed to be on the same page. Aidan would cry for almost the entire thirty minute session. It was a total waste of time. I was getting him to talk more just playing with him at home.

I would complain to my husband that they were wasting Aidan’s time, and that he was not being given the support he truly needed. We thought that things would get better once he turned 3 and was taken into the special Pre-K program through the school district. But, again, we were wrong.

The school district took their time putting together Aidan’s full evaluation (which needed to be complete before he could start school). They legally had five weeks to put everything together, and it was obvious that they planned on taking the full five weeks to complete the evaluation.

At that point, I knew I couldn’t sit on my ass and wait for help. My husband and I decided that I should move in with my parents who happened to live by a DAN! Doctor, and pay out of pocket for Speech Therapy and Occupational Therapy.  We needed to get Aidan the help he needed NOW!

February 22, 2011

Going Gluten Free!

Two days after putting Aidan on the GFCF (and soy free) diet, he started talking much more. I will never forget it. We were sitting inside of a tent that my Father had given him for his birthday and I said, “We’re hiding in the tent!” and Aidan said, “We hiding! We hiding in tent!”

It was a complete “holy shit” moment. Is this really happening right here, right now?  And then I realized that it was. Every day he was saying something new. It wasn’t always appropriate, or in context, but he was talking! Not only was he talking, he was finally sleeping!!!!!!! I would put him to bed, and 15 minutes later he was asleep and would stay asleep ALL NIGHT. He even started napping during the day, and we could move him from his car seat to the house without him waking up.  And when he would wake up, he was a sweet cuddly and lovey little angel. He would wake up with a huge smile on his face, ready to start the day.

The other thing the diet made me realize, was that Aidan really did have poor eye contact. I never noticed it until we changed his diet and added Cod liver oil to his supplements. He would look me dead in the eye the entire time I would talk to him. Before, he would look at me, but then look all around and come back to meet my eyes. He would never hold my gaze for a really long period.

After 1 month on this diet, Aidan seemed to be back with us. He was tuned in, however new concerns began to take shape. 

Remember how I wrote that hand flapping was never something my child had exhibited? Well, now he had.  Interestingly enough, now that we had changed Aidan’s diet, he became even MORE sensitive to food additives, food dyes, and artificial anything! Before I knew this, he came down with a nasty cold, and a slight fever so I gave him cherry flavored Children’s Tylenol.  You know, the kind with Red Dye #40 and a million other crap additives? Then entered crazy, intense hand flapping. It was like he could not control his hands or his body. He looked like he was going to fly away he was flapping his little arms so hard.  My husband watched in horror, while I sat there trying to stay calm and fight back tears.  I had no idea what was going on at this point. I wish I could go back to that time in my life and give myself a hug and say, “things are going to get better, I promise!”

At that time, I had not read all of the books on nutrition, Autism, candida, metal toxicity, and behavior interventions that I have today. I was so lost and scared, just trying to get my son on track as fast as I could. But as so many in the ASD community say, “Recovering your child is not a sprint, it’s a marathon!”  I still think people have a hard time believing me when I tell them this, but it is the honest to God truth: I started to see more “Autistic” behaviors in Aidan AFTER putting him on the GFCFSF diet then before. Aidan flapped his hands (just the one time), walked on his tip toes (twice), and began shaking his head, all after we changed the diet.  For some reason, I still held on to the diet. It  was so obvious that it helped him sleep and communicate, that I couldn’t take it away.

It wasn’t until a year later when I read, Unraveling the Mystery of Autism and Pervasive Development Disorder : A Mother’s story of Research and Recovery, that I realized cleaning out the gluten and casein really did wake Aidan’s body up to other things that had been bothering him all along, but were masked by the opiate effect that gluten and casein were giving him.  It was like he hadn’t felt anything before I took these two major offenders from his diet.

My husband always brings up how Aidan was immune to pain before we changed his diet. He would fall so hard, and not even shed a tear. We always thought he was such a little tough guy. One time he fell on a really sharp edge, I freaked out thinking he was about to go ballistic. He just picked himself up and kept going. Two hours later, I noticed blood coming through his shirt, and he had a huge cut down his chest. He still has a scar from that fall, and it is a constant reminder to me that he was NOT well. Now, if he falls, he cries, and asks for Mommy. I secretly love it! : ) 

If you are looking for more about how gluten and casein have an opiate effect on many ASD children, please check out the books in my suggested reading section. This link gives a very brief overview: http://www.autism-help.org/intervention-casein-gluten-free.htm

February 9, 2011

Wake up! Your son has Autism!

Autism. Ugh! One year ago I had trouble saying, typing or even thinking of that word. It was my enemy. When my friend said that she thought Aidan had Autism, I decided at that moment that I wanted nothing to do with her. How could she even think of that word when describing Aidan? There was no way he had Autism!

The word Autism swam around inside my brain from the moment she said it. I couldn’t sleep for months. I couldn’t eat. I couldn’t think straight. I needed to know what was going on with Aidan, and I was determined to prove her wrong.

I made an appointment with early childhood intervention to do a full evaluation. When we went in for the appointment, Aidan couldn’t do anything they asked him to do. Things that I KNEW he could do, and things that he had done when he was 12 months old and 18 months old. When we left the appointment, I remember trying to hold back the tears until I got to my car, but I couldn’t. I broke down sobbing into my husband’s chest as we stood in the parking lot. He thought I was crazy. I still remember him giving me the look, like, why are you so upset!? He had no idea how serious this was and what was coming, but I knew.

At that point, I KNEW that something was wrong, and that for months I had been trying to make too many excuses for all of his odd behaviors and developmental lags. I was done with living in denial. I just wanted to know what I needed to do to help our son. I was finished listening to everyone tell me that my son was perfectly fine and that everything was ok.  I felt like no one was listening to me.  My husband, my parents, my brother, my friends…everyone was down playing my feelings. I was just the crazy overreacting Mother, and Aidan was going to be fine. The only person who would listen to my concerns was my friend who had mentioned the word Autism to begin with, and I was still irritated with her. Even when I knew it was Autism, I didn’t want anyone else to know. I know that sounds ridiculous and crazy, but I felt like if no one was there to know about it, and say it out loud, then it wasn’t real.

I started searching the internet, and looking at symptoms of Autism. There were definitely things that caught my attention, like, “Does not respond to his/her own name”, “Does not play with peers”, “language delay” but all of the symptoms like “head banging”, “does not play with toys appropriately”, “spins wheels”, “flaps arms”, “toe walking”,  “does not engage in imaginative play”, “lack of eye contact,” etc. were not symptoms my son had ever exhibited.

Then, a friend confided in me that her son had been diagnosed with Pervasive Development Disorder (PDD), and she thought that Aidan showed some of the characteristics of PDD (which is an Autism Spectrum disorder). She gave me a few books to look through. One of the books was by Jenny McCarthy and Dr. Jerry Kartzinel, Healing and Preventing Autism Spectrum Disorders. When I picked up the book, I thought, “healing? How do they do that” So I read a chapter on diet, and how the gluten free casein free diet seems to help a lot of children with ASD. The explanation made so much sense to me-  the proteins in gluten and casein are not fully broken down by people with gut issues, and this can create opiates in their blood stream. Ok, there is a much longer explanation than this, but that is the short and sweet of why so many people try this diet.

That night I told my husband that we were going to put Aidan on the diet. No one could tell me no! The very next day I put Aidan on a gluten free casein free diet. He hated it, of course, but I didn’t care. If this would help, we were going to give it a fair try.


February 1, 2011

Something doesn't seem right

As we approached Aidan’s second birthday, I noticed that he wasn’t adding any new words to his vocabulary, and all of the sudden, it seemed to take more effort to get his attention. I would call his name 4 times with absolutely no response. I thought it was strange, but I didn’t worry because he would always eventually turn and look at me. I really thought that he just didn’t want to listen to Mom, because he always seemed to respond right away if it was in reference to something he was interested in, like, “Mommy made you cookies!” : )  

During this time, I remember feeling like more of our day-to-day routine was becoming a struggle. Everything was a struggle unless I carefully planned things out well in advance.  The tantrums would come out of nowhere and last a loooooong time.  I started dreading leaving the house for fear of other people seeing his behavior. If one thing did not go his way, it was an all out war! He would throw anything in sight and just go NUTS!  Let’s say he was building a tower with his LEGOS (which he always loved to do), if one piece fell off he would scream and break down the entire tower, throwing each piece across the room. Just imagine when he would get mad in restaurants! It was AWFUL! I always got those glaring looks like I was the worst parent on the planet. One time, when we were at home, I remember leaving him on the ground to throw a fit, and almost an hour later, he was still lying in the same place on the ground.  I thought that we were beginning to experience the terrible twos and I just knew he got his stubborn attitude and temper from me. As crazy as it sounds, I truly thought this was just a phase. I thought that when he hit 2 ½ he would be able to express his feelings, and these insane tantrums, would start to go away.

I remember reading many books around this time, but one really seemed to help me put things into perspective. Raising your Spirited Child, by Mary Sheedy Kucinka. This book summed up Aidan inside and out, and it helped me see his “difficult” personality traits as positives. Aidan was a kid who knew exactly what he wanted and would never back down until he got it. As frustrating, and as hard as that made things for me, wasn’t that a really good personality trait to have in the long run?

When Aidan turned 2, he had added a few more words to his vocabulary, and I felt my fears slightly fading. We went to his 24-month check up, and he hit every milestone, except his speech was definitely at the lower end of what was considered average. Did the doctor tell us we needed to have him evaluated? Of course not! “Boys talk later,” were his exact words.

Speaking of doctors, remember the easy going kid that I talked about in my first blog post? Well, up until that kid was 8 months old, he never had a problem with a visit to our doctor. By the 12-month check up, I began to dread going in to visit the doctor. Aidan would cry and try to run away from the doctor the whole time, either signing or saying, “All done!” over and over. He could never relax. It was a nightmare for them to get his weight, height, temperature, etc. I always thought that it was because our pediatrician was a douche bag (Oh! Ooops! Did I write that for the world to see?) with  extremely limited experience, but later realized that while that factor did play a part, the bigger contributing factor was Aidan’s ever increasing sensory issues.

Every outing became emotionally and physically draining for me. He would run away from me any chance he got. He never even really seemed to have a plan. He would just run! In parking lots, at the store, etc. If I called out his name, or told him to stop, he would just run even faster. He could not understand the urgency or anger in my voice, he would just keep running like he was in his own little bubble. He did not understand, “no” and “stop.” I had to start keeping him strapped in a stroller, for his own safety (and mine).  I can remember being so jealous of the parents who could walk through the store as their child stayed right next to them (or at least close enough to keep an eye on).  Again, I thought this was just an age thing (as all of my friends & family told me). I had no idea that this was a glimpse of more serious things to come.

I told my husband that every day with Aidan felt like an ongoing struggle, and that I was worried about him. My husband reassured me that everything was fine. He didn’t see the things that I was trying to explain to him and he felt like Aidan was just being a typical toddler with the terrible 2’s. I agreed, and we figured that things would improve as his communication skills progressed.

It was an exhausting time. Aidan wouldn’t sleep. At night we would put him to bed at 7:00 and he would be wide awake until 11:00, and then he would wake up crying around 2am. I would rock with him until he calmed down and went back to sleep. He would wake up for the day by 6:30-7. He never woke up in a good mood. He was generally pretty pissed when he woke up.  It would take him a good 30 minutes to adjust to being awake. He also never napped. He would fall asleep in the car, but it would have to be a looong drive. And forget about moving him into his bed! He would wake up at the slightest touch and scream forever! My husband and I still laugh about how awful his sleep was to this day. We would barely BREATHE if Aidan was asleep! He always seemed so tired, but it was like he just COULDN’T sleep.

Things seemed to spiral downward by the day. By the time Aidan was 2 ½, he was beginning to lose the language and skills that he had once mastered. He stopped playing with the puzzles that he had been putting together since he was younger. It was like he forgot how to put them together. He would begin to try and just throw them down on the ground. I also realized that he would NEVER wave or say hello or good-bye to anyone anymore. He lost interest in other children at the park. Children would try to engage him, and he wouldn’t even acknowledge that they were there. He also lost interest in going to the park at all! My little boy who used to run all over the park, would no longer leave my side. He also became terrified of going on the swings. He wanted nothing to do with them.  If he did play, he seemed exhausted within minutes and would just lie down on the ground. It was so strange. He would talk here and there. Sometimes in complete sentences, but most of the time he was really quiet. He  could  say his ABC’s, count to 20, and sing several songs, but he didn’t know to say hello to someone or to respond when his name was being called. He could no longer identify his body parts (he was doing this at 15 months). This was when I really started to worry.

My husband and I took Aidan to the pediatrician AGAIN (this is the 3rd pediatrician that we told about our “concerns”) and again we were laughed off. At this point, my husband thought I was losing my mind. EVERYONE thought Aidan was fine, why do I insist that something is WRONG!?



I confided in a friend about my concerns, and she said, “Do you think Aidan has Autism?”