Is It the Diet Already?

A couple of HUGE things. First, we got back from Ames this morning after a lovely pre-screening of Esmerelda (which I highly recommend if you’re in the Des Moines/Ames area). It will NOT disappoint. The cast is wonderful (especially Bill and Hetty), the set design and costumes are magical and there are a ton of cool “theatrics” that I have been sworn not to reveal. Pretty amazing stuff!

ANYWAY, when we got home this afternoon, Gavin ASKED if he could put on his Elmo underwear. If you’ve been following our journey, you’ll remember that I tried this past summer to potty-train Gavin, but by day 2 he would cry and tell me he was all done going potty. Yeah, I was not successful. Every once in a while since then we’ve sat him on the potty, but he’ll sit for a while without going. So you can imagine how excited we were when he brought up wearing his underwear. And get this, HE’S BEEN GOING IN THE POTTY EVERY TIME WE ASK. This has not happened before. He hasn’t had a single accident yet and he is SO proud of himself when he goes. He gets it this time! (The down side is that he’s being rewarded with Skittles that I know are not SCD approved. Hopefully one Skittle at a time won’t do too much damage to our new diet. Fingers crossed.) I’d much rather have him potty trained right now.

The other big thing is that Gav has been spending a lot of time playing with my old doll house lately. He’s actually playing with the people inside, making them go from room to room and they are having conversations with each other. Again this is HUGE because pretend play is not something he normally does.

Is this because of the diet?!

Autism and Insurance

I totally forgot to blog about this yesterday, but Erin Kiernan on TV13 is doing a 3-part series on Autism and Insurance this week. (The first segment aired last night and can be viewed here. Sorry I cannot post this directly to my blog. Scroll to the video portion and click on Investigation: Autism & Insurance). This new piece comes at a very appropriate time in our journey because we recently received our first insurance denial letter last week and I’m sure there will be many more to come.

Gav’s speech teacher at school told us that due to the large number of students she sees in a week, we should probably consider getting outside speech therapy for Gav. That sounds good. What could be more beneficial than a private tutor once a week? Well, I called our lovely insurance company who has been pretty good to us thus far (remember we even got a reimbursement a while back) and was flat out denied on the phone. The lady wasn’t rude, per se, but she wasn’t really sweet about it either. (Think she gets that question a lot from parents with autistic children? Personally, I think she’s sick of the phone calls).

I then called ChildServe (a private organization who works with special needs children). The sweet lady there called our insurance company for me again (she knew better lingo) and was also denied on the spot. A few days later, I then received a very official letter from our ins. company stating: “In your case, speech therapy is a specific benefit exclusion as treatment for disorders relating to learning, motor skills, communication, pervasive developmental conditions such as, but not limited to, autism“…blah, blah, blah. It goes on to say, “The reason that this request is not approved is expressive language disorder falls under developmental delay and is a specific benefit exclusion.”

Now we begin the appeals process. The lady at ChildServe said the only thing we can do is to continue to appeal. She said some of her clients have actually had luck doing so. Just one more thing for me to add to the to-do list. The down-side is that speech therapy is EXPENSIVE if not covered by insurance, but I don’t really feel like it’s something we should deny Gav of. So, there goes Christmas. Detox spray and speech. Woohoo!

In other news, the new bedtime routine did NOT go well. Josh was gone and the boys joined forces. We’ll see what happens tonight when he’s home to lay down the law.

Thinking In Pictures

So I’m in the middle of reading Thinking in Pictures by Temple Grandin. Temple is an animal scientist, has a PhD, and she is autistic. Her book is an amazing portrait of how she thinks. It has opened up a whole new window into Gavin’s mind and how he processes information differently than the rest of us.

Gav does not think concretely. Those concepts are completely lost on him. Temple points out three categories of specialized brains. First, there is the visual thinker. Children who are visual thinkers often have a hard time with concepts like algebra and foreign languages in school. They are more gifted in art, building, and visual type learning.

Second, there are the music and math thinkers. These type of thinkers think in patterns and numbers instead of images. They generally tend to be good at music, engineering, computers, physics, etc.

Third are the verbal logic thinkers. These people think in word details. They love foreign languages, stats, lists, etc. Often you hear of children with autism who have an uncanny ability to spout sport scores or odd facts (think Rain Man).

An interesting thing that Temple points out is that children with speech delay (Gavin) are usually visual or math thinkers. After reading this portion of the book, I would definitely say Gav is a visual thinker. That would explain why he learned the entire alphabet at 15 months. We had the little magnetic letters on the fridge that he played with constantly. That also explains why we’re having a hard time teaching him to count. We just count, there is nothing for him to look at or touch.

Another classic example of Gavin being a visual thinker is his word association. Since moving to the new house, anytime we’re out and I say we’re heading home, he freaks out. “All done with go home,” he always says. BUT, if I say we’re going to the new house, he’s fine. Now I understand the freak out. When he hears the word “home”, the old house is the image his brain pulls up. I don’t know if we’ll ever be able to call the new house home. I have no idea how to change his word association yet. I guess that’s the next step. But, now that I know how he thinks, that better enables us to teach him at home. I suddenly have to get really creative (something I am not good at!)

Imagine

Imagine watching your child climb up a flight of stairs. He slips on a stair and cuts his knee open and begins gushing blood. The cuts are deep, and you immediately wash away the blood, wrap up the knee, and head to the hospital. Once you get there, the doctor asks what happened. You reply, “He climbed up some stairs and fell and got hurt.”

Now imagine the doctor telling you that it’s not possible that your child got hurt from the stairs. “But I saw him climb the stairs and fall and I saw his knee split open,” you explain. Again, the doctor says it’s not possible. And you repeat, “But I saw it happen!”

The the doctor tells you that climbing up stairs is safe. But you know what you saw with your own eyes and so you insist, “But obviously sometimes it’s NOT safe. Look at my child. I saw him get hurt!” The doctor just keeps shaking his head and denies that stairs could ever harm a child.

This is how black and white it is for us moms who have children with autism. We had healthy beautiful children who climbed up stairs perfectly until one stair caused them to fall. We have witnessed the neurological downfall of our children after certain vaccinations, but when we tell the doctors what we saw, they don’t believe us. Can you imagine how frustrating that is?!

Let’s take the stair scenario a step further. After the doctor rejects your claims, you decide to treat the wound yourself. You learn about natural and alternative treatments, which you try out, and your child’s knee heals to the point where you can barely see any marks. Now imagine you go to the doctor for a follow-up visit and this time you see a different doctor. The doctor looks at your child’s knee strangely and says, “This must be the wrong knee.” You explain, “No, this is the knee that split open.”

The doctor says, “It can’t be because it healed up. There is no way an injury like that could heal. The hospital must have mistaken the severity of the wound.”

You reply, “No doctor, I healed the wound myself by cleaning it out and treating my child with natural remedies.” The doctor then looks at you strangely. He begins to laugh at you and tells you that your son never really had an open wound to begin with. You stand there with your mouth open. “Yes he did, doctor. Take a look at the medical records. He was seen in YOUR hospital!” The doctor replies, “It must have been a mistake on his records. He never had a wound here.”

This is exactly how it is when a child with autism gets better. No one believes he had anything wrong with him to begin with. People think these recovered children were misdiagnosed. The reason recovery is controversial is because we are healing these kids by treating the injuries caused by the vaccines or the environmental toxins rather than the autism itself. When we treat these things, the symptoms of the autism get better. The medical community is terrified to come within ten feet of detoxing metals out of these kids because it will point a finger DIRECTLY at what everyone is so scared to admit. Vaccines CAN trigger autism.

There are two controversies about autism: first, the causes, and second, whether children can recover. A battle is raging in the medical community, but there is a growing army of mothers who are fighting for their children and witnessing recovery first hand. Imagine a world in which we are all fighting on the same side to help make children with autism better. The time to unite is now.

(Taken from Mother Warriors by Jenny McCarthy)

Phenol Addiction

Oh dear, oh dear. I have finally found a minute to get back to my research and it’s not looking good for Mr. Gavin. The TACA (Talk About Curing Autism) site has been my go to place every time I have a question/issue. Since I’ve been feeling like some regression has been taking place, I wanted to see what I could find out. There’s an article titled “What is It? When Something Is Going On, Strange Behaviors, A Plateau, An Old Self Stims”. Long title, but that’s just what I was looking for. In it, there’s a checklist of things that could possibly be causing some of the old tendencies. Phenol overload caught my eye.

Phenols, salicylates and additives are a problem that typically needs to be addressed after the Gluten Free / Casein Free (GCFC) diet has been started. Generally it is recommended to address foods high in phenols or salicylates, and additives about 2-6 months after you start a GFCF or other similar diet.

Phenols are a unique properties that can be high or low in foods. The higher level of phenols found in food seems affect children on the autistic spectrum or individuals with sensitive guts or immune systems. In addition, salicylates and additives can also have a negative affect and in many cases these need to be avoided all together.

It is important to note that almost all foods have phenols, just some have more phenols than others, and a child with PST has trouble processing them, so you want to reduce the HIGHLY phenolic foods so the child’s body does not get overloaded in trying to process the phenols it is getting anyway.

People who eat a large quantities of phenolic foods or foods containing salicylates or additives can experience some of these negative side affects:

• laughing at in appropriate time (at night or when something is not funny.)
• strange rashes that appear on the body
• erratic behaviors and moods
• self stimulatory behaviors
• night wakenings
• have a difficult time with their stools (with constipation, diarrhea or undigested foods.)
• headaches

So, reading through the above list, Gav has every one of those issues right now (maybe not headaches, but I’m not sure since he doesn’t usually say what hurts-he just screams). That would also explain his seemingly obsessive desire for apples lately. I thought it was a good thing-what a healthy snack! Looks like he has a phenol addiction and is feeding his addiction with apples. He had 3 today.

Wow. I just can’t win. I think I’m on track and doing well with this whole diet thing and turns out, what he’s eating is STILL harming his body. I also began menu/grocery planning to begin the Specific Carb Diet in the next 2 weeks so hopefully we’ll see some positive results. To be completely honest, I’m deathly afraid of starting this for some reason. I know we’ve already eliminated a lot of the problem foods already, but for some reason I can’t seem to put one foot in front of the other to make this happen. I keep giving myself a time frame for a start date and it keeps getting pushed back. I’m sure it’s not as hard as it seems, the GF/CF wasn’t that bad. I just can’t wrap my head around changing everything AGAIN.

Yays and Nays

There’s so much going on in my head right now and to keep this from being extremely long, I’m more or less going to just list everything. 

Yay for:

-Jenny McCarthy: she’s my autism hero!  Please read Mother Warriors, you won’t be disappointed.

-increased language and pronoun usage from Gav this week

-I have been so much better at getting all his vitamins and supplements in him every day

-I think I found an alternative to the Nystatin (yeast killer) that Gav refuses to take. 

-Gav now knows The Pledge of Allegiance.  My tax dollars hard at work!

-our new house is almost ready!

And for the nays:

-It’s possible we need to have Gav on the Specific Carbohydrate Diet.  Bye bye rice, rice pasta, and rice wraps. (Seriously trying not to panic)

-Just found out you shouldn’t mix enzymes and probiotics.  Awesome.  Been doing it this whole time. 

-Stimming and stuttering are back in full force.  He must still be eating something he shouldn’t.   Now I just have to figure out what it is.

-Gavin has been EXTREMELY loud lately.  He is constantly yelling at the top of his lungs, especially when other people are trying to have a conversation.   There’s really no discipline that quiets him down.  I’m at my wits end with that whole thing.

Wednesday, September 24th

Tomorrow is a BIG day on Capitol Hill.  At 2pm tomorrow in Washington, there will be a briefing for members of Congress and their staff to update them on the recent developments on the vaccine-autism debate.   Here’s the email I received this week detailing the event:

David Kirby, investigative journalist and author of The New York Times bestseller Evidence of Harm, Mercury in Vaccines and the Autism Epidemic – A Medical Controversy, will inform Members and their staff about developments in this debate from science, public policy, politics and law. Mr. Kirby will be joined Mark Blaxill, Director of the Coalition for SAFE MINDS.

Among the issues to be discussed are:

• A recent Vaccine Court case in which the federal government conceded that vaccines induced autism in one girl with an underlying mitochondrial dysfunction.
• Possible links between mitochondrial dysfunction and autistic regression, and information on several ASD children with mitochondrial issues;
• State-of-the-art research underway at top universities on the connection between environmental toxins, mitochondrial function, oxidative stress, glutathione depletion, neuro-inflammation and autistic encephalopathy;
• Research agendas from the CDC and NIH that include investigations into links between vaccines and neuro-immune disorders
• The scope and implications of the autism epidemic. How scientific politics is preventing policy from catching up to the problem.
• Ongoing research into connections between mercury exposure and autism. Why most of what is reported is inaccurate.
• Reframing concerns over the vaccine program: It’s not a question of being pro or con vaccines, but rather a question of safety management.

As the last line states, it’s not about being pro or con vaccines, but about safety management.   This is a SERIOUS issue that has been kept quiet far too long.  If you do not have a direct link to an autistic child,  these are the kinds of issues that are easy to overlook.  For those of us in the autism community, it’s crucial that our congressmen hear our voice. 

In other autism related news this week, Jenny McCarthy’s new book Mother Warriors was released today and she’ll be promoting it on Oprah tomorrow.  (Borders is selling her book this week at 40% off!)  Don’t miss it!

Tidbits

Just a few things…….

I came home from dropping Gav off at school a few days ago and there was a lovely package waiting on my front steps. My dear friend Tammy had sent us some Trader Joe’s Pancake and Waffle Mixes (GF/CF of course!) There was a yummy recipe on the side of the mix for coffee cake, so I decided to make that-Gavin loves anything “cake”. It was scrumptious! Thanks, Tammy! (I’m so jealous of your easy access to Whole Foods and Trader Joe’s!)

This past Tuesday we were FINALLY able to take Gav to get his blood work done for his ION panel and food sensitivity tests. First we needed the urine sample and once we had that, we were to take him to a lab here in town. We were all ready to go last Thursday when I realized he was not supposed to have eaten anything for the last 12 hours. He had just finished breakfast. Another setback. Since the lab doesn’t do blood draws on Fridays and they are short-staffed on Mondays, we ended up having to wait until Tuesday. Poor little Gavie! He sat happily in the waiting room without a clue as to what was about to happen. I made Josh come along to hold him down (Gav’s had blood drawn before and I could barely keep him still). Six vials later, they had what they needed and we returned home with a very upset, hungry boy. (Luckily we still had coffee cake and that saved the day!)

That same night, there was a story on the news about our pediatrician’s office (old office-we no longer take our kids there). Apparently they recently sent out letters to their patients letting them know that the vaccines given from March ’07-December ’07 may be inactive. The refrigerator used to store these vaccines was found to be at an incorrect temperature, so they are unsure of the effectiveness of the vaccine. LIAM WAS GIVEN 6 VACCINES IN MAY ’07 AT THIS CLINIC. Back then, Gavin had yet to be diagnosed and I was just beginning to understand the problems behind vaccines. (I know some of you reading this may not agree with my position and that’s ok. This is my view since Gavin has been diagnosed). Liam was two months old and at the time I was very on the fence about vaccines. I went ahead with them and have regretted it ever since. This news the other night made my day! I cannot tell you what a huge relief I felt when I heard that. I had been walking around with guilt about that for some time.

If you are interested to learn why I feel the way I do about vaccines, please read these fantastic articles on the Generation Rescue site. Read their vaccination article and The User-Friendly Vaccination Schedule.

And lastly, Gav’s been sleeping much better this past week. He is no longer fighting bed time, and even though we hear him get up once or twice in the night, he gets right back in bed. He no longer wanders and we’re sure he’s not even awake when he gets up. Morning still comes awfully early at our house, but at least we’re all getting a more restful night’s sleep. Our family will be moving in with my parents starting Saturday so Josh can refinish our floors. This will probably mess up the good thing we have going, but we’re looking forward to lots of Grandpa and Grandma time!

It’s Been a Hard Day’s Night…..

This Beatles’ song has been rolling around in my head lately. Here’s why…….for almost the last two weeks, Gavin has been waking up in the middle of the night and is usually up for AT LEAST 2 hours, sometimes several times a night. I don’t know if it starts with sleepwalking and ends up waking him up, but it’s VERY frustrating. To begin with, he’s been having a really hard time going to bed and staying in bed. It takes a good half and hour of punishments before he finally stays in bed long enough to fall asleep. 4-5 hours later, he’s usually up again and refuses to stay in bed. Josh and I decided a long time ago that we are not going to let him sleep in our bed. We just can’t start that with him. So, one or both of us ends up guarding his door and putting him back in bed repeatedly in the middle of the night. (I feel like I have a newborn again with the small amount of sleep we’ve been getting). Fortunately Liam, whose room is right next door, sleeps through it all.

The thing is, sleep problems are common among autistic children, so we are definitely not alone, there’s just not a lot that we can do. He already takes melatonin before bed to help him fall asleep (doesn’t really seem to help though) I’m seriously hoping that once we get his body balanced with supplements this will help him have a more restful night sleep.

And that brings me to the other issue we’ve been facing. POTTY TRAINING. Well, we’re not actually doing that yet (Gav has absolutely no desire). After meeting with Carolyn Walker at Prevention Iowa, Josh and I decided to have Gavin take a food sensitivity test and an ION panel (this measures everything his body produces to determine if he’s too high or too low in certain areas. It will also determine if there is a high level of metal in his system-another common factor of autism.  In order to do the ION panel though, a urine sample is needed. Kind of a big problem for us. Gav has yet to go in the potty. He’s been known to sit on it for up to an hour, but doesn’t go. (Some other problems are that the test requires first morning urine and the child should not have any liquids prior to going). My thinking was that we could just keep giving him water or juice, but that could potentially dilute his urine and ruin the test.

Last night while the family was over to celebrate Mother’s Day, Gav sat on his potty while everyone ate dessert. He ended up eating a cookie while we “waited” for him to go because he was feeling left out. Still nothing. This morning, Josh had him sit again and this time he sat for a good hour. We finally decided it was time to call it a day and then we realized at some point he had gone!!!! YAY! We had our sample!!! I got the lab kit ready and then realized there was a bunch of black crumbs floating in his urine. Apparently some of his cookie from last night had made it into the potty chair. I’m thinkin’ that’s not going to go over too well at the lab. So, we’re back to square one. At least he went. I guess that’s the first step. SIGH……….

How We Got Here Part 2 (otherwise known as the poop talk)

Another one of Gavin’s “issues” is his poop. It’s always been a little funny. I won’t go into much detail other than to say it’s not solid and it never really has been. (Sorry. I’m done.) For a long time I thought it was because his favorite (and pretty much ONLY) food he was consuming on a daily basis were Amy’s Bean and Cheese Burritos.

In my defense, Gavin is my “test waffle” and I had no idea what his poop should look like and that it’s not ok for him to be SO picky. I just thought kids were picky eaters. Most are. But not to this extreme. From about 18 months on, Gavin has had a very limited menu of foods that he has deemed acceptable. For the longest time it was the burritos. Then it was Mac & Cheese. Sam’s Club became our best buddy when it came to enormous boxes of Easy Mac. Oh those 4 minutes in the microwave are a LIFETIME to a hungry toddler. But I digress……….

After a year or more of weird poop, I talked to our pediatrician about it. I was told not to worry and was given a referral to a children’s gastro doctor. For a while I was thinking celiac disease. He displayed some of the symptoms. This doctor took one look, and I mean one look, and said that was not it. Whew! X-rays were taken (yes, of his stomach) and a few minutes later, it was pronounced that Gavin was backed up all through his intestines and that he just doesn’t like to poop. WHAT? You have to understand something. Gavin was pooping after every meal. How can you sit there with your specialized medical degree and tell me that he doesn’t like to poop when he does it 2-3 times a day? We were confused, but hey, he’s the doctor, he knows what he’s talking about.

We walked out of that office that day, a prescription for laxatives in hand. After a month of laxatives and a follow-up visit where we were told to keep up the laxatives, I finally got smart. This guy DID NOT know my son. I do. Gavin isn’t afraid or doesn’t like to poop. THAT’S NOT IT. I was angry at the doctor for not digging deeper into the issue. I was angry at myself for believing everything he said and not questioning anything. I was angry that I had paid for 3 prescriptions that were not helping. I was angry that I didn’t know what else to do.

So we did nothing, for a while…….