The first changes...

Fall of 2012... Our little munchkin was about 2.5.

After seeing the autism specialist, we immediately took her off Gluten and Dairy. I know what you're thinking...what did we eat? There are actually a lot of options out there now for people who need a GF DF diet. We had already been investigating a new trend called Paleo or clean eating for my health.

The doctor also said to get her off sugar. Yeah...that hasn't happened yet. We do drastically limit it, though, and I NEVER let her have sugary drinks or soda. She drinks water and for a special treat I let her have a glass of lemonade.

So we went cold turkey on the gluten and dairy in September. She didn't have any issues. We replaced her regular snacks of crackers, pretzels, and such with gluten free options. Unflavored rice cakes, (flavored ones have gluten in them), GF pretzels, air popped pop corn, almonds, and GF chex cereal.

Within 8 weeks we could tell a difference in her behavior. By November our child who normally stared off into space and played by herself most of the time, started to look at us, smile at us, we would get a little eye contact from time to time, and she started to be interested in life around her.
She started trying out a few more words. She even put a couple of words together. Her first phrase that winter was "I did it".

She was doing it! So much more than we'd ever seen.

Our child who didn't particularly like to be held, wanted to sit in our lap. She gave us hugs. All because we eliminated a little thing called gluten.

My mom read more of the effects of gluten and dairy and shared it with us. (Her favorite pastime is researching, if you couldn't tell already. She's really good at it too.) I read what she showed me and we were both surprised and amazed by what we found. This is just a little peek at some of the information we came across. There are dozens of doctors and books that support the ideas stated below.

That is Perlmutter’s kind of joke. He is not joking when he says that carbohydrates, even the whole-grain carbs that many of us think of as the good ones, are the cause of almost every modern neurologic malady. That includes dementia, decreased libido, depression, chronic headaches, anxiety, epilepsy, and ADHD. 

“It may seem draconian,” he says, “but the best recommendation I can make is to completely avoid grains.” 

“Most grain foods, whether we’re talking about quinoa, amaranth, the very popular grains of the day, the reality is they still are associated with a carbohydrate surge. They have a fairly high glycemic index, meaning that after 90 to 120 minutes, your blood sugar is going to go up, and that is detrimental to the brain.”  

David Perlmutter practices in Naples, Florida. He holds a medical doctorate from the University of Miami School of Medicine. He is both a board-certified neurologist and a fellow of the American College of Nutrition—the only person, he says, to have both credentials. He is the medical director of the Perlmutter Health Center and the Perlmutter Hyperbaric Center. His practice is endorsed by Mehmet Oz, “America’s Doctor” (Oprah-appointed), who says he has referred patients to Perlmutter “with wonderful results. He is on the cutting edge and can help change the way we practice medicine.” 

Oz’s endorsement also wanders across the jacket of Grain Brain: “An innovative approach to our most fragile organ.” 

In large letters at the top of his website, Perlmutter describes himself as an Empowering Neurologist. To my knowledge and his, this is another distinction unique to Perlmutter. This is presumably not to imply that neurologists without this qualifier are not empowering, but that in a specialty plagued by powerlessness in the face of many incurable and barely treatable diseases, he offers power.  

“The biggest issue by far is that carbohydrates are absolutely at the cornerstone of all of our major degenerative conditions,” he says. “That includes things like Alzheimer’s, heart disease, and even cancers. What we know is that even mild elevations in blood sugar are strongly related to developing Alzheimer’s disease. That was published August 8, 2013, in the New England Journal of Medicine. Even mild elevations in blood sugar compromise brain structure and lead to shrinkage of the brain. That’s what our most well-respected, peer-reviewed journals are telling us.”  

“The gastroenterologists don’t seem to realize that gluten insensitivity far exceeds their area of focus. According to the work of Dr. Marios Hadjivassiliou in England, there are a large number of people who have reactions to gluten that have absolutely nothing to do with the gastroenterologist. Manifestations can occur anywhere in the body. The work of Dr. Alessio Fasano at Harvard indicates that perhaps all humans have some negative reaction to gluten. Gluten induces this cornerstone of brain degeneration: inflammation. It causes leakiness of the blood-brain barrier.” 

The blood-brain barrier is a network of endothelial cells that prevents substances in our blood from getting into our brain tissue. Some molecules can cross it, and some can’t, in order to maintain a favorable environment for the brain. Undue leakiness is not a desirable property in one’s blood-brain barrier. 

Read more about Perlmutter here 

So back our life. About six month in on no gluten, we'd read even more about dairy products and felt like it might be ok for her to have a little. Life without any cheese was tough and my husband and I needed a slice of pizza every now and again. Did you know Dominos has gluten free pizza? You do now! Most of what we read said gluten affected the brain and dairy affected the digestive system. Our  daughter never had any digestive problems, so we tested our theory. We certainly didn't flood her diet with dairy. She has a little here and now, when we have pizza. She might get a slice of cheese at a party or something like that. But that's about it. We don't drink milk in our house. We don't cook with milk in our house. You will find natural butter, sliced cheese, and sour cream in my fridge. Possibly the occasion tub of ice cream in the freezer. That's as far as it goes in our household.

We saw no changes in her growth when we let her have dairy. She continued to come out of her "stoned stupor" and explore more words, play with us, be affectionate. Gluten appeared to be her biggest enemy for now. There was still more the doctor wanted us to change, but a lifestyle change is hard. I'll be honest. It's still hard and still a work in progress. I am quite vigilant with the gluten and make sure she NEVER has any.

Just before she turned 3 in April of 2013, she started using the terms "momma" and "dada" when she saw us. I cried that day. It was the very first time she'd called me by name and wanted me. There are no words to describe how much hearing that meant to me. I still sometimes cry when I hear her call for me. Or squeal my name when I come in the door. Such a small thing for many parents, is one of the most precious gifts my daughter has ever given me.

She started to say "bye". She waved. She was using several 3-word phrases consistently and she was beginning to be interested in more. Her babysitter reported more and more new words. We heard new ones start to appear as well. She was still quite the perfectionist though, and wanted things just so. For a long time, she wouldn't try to say or do anything she couldn't do perfectly. Lots of verbal praise has helped that, but she still struggles to take a leap and do something she's not sure she can get right the very first time.

In less than six months we'd gone from a detached, almost non-verbal, non-participant in life to a little girl who would say several dozen words and short phrases, who started to really play with her toys correctly, and wanted to be around us at least part of the time.

It was a miracle. So much was changing for the better and we'd only just started!
XOXO
Krystal

2 years old and feeling stuck...

My daughter turned 2 in April and that by the summertime she'd been fever-free and well for nearly six months since the massive terrifying meltdown of constant illness we had the previous fall. She still had maybe 8-12 words she used consistently and didn't care to learn any others.

We tried sign language. But she would get angry and refused to learn anything but the sign for 'more'. She liked that one. LOL, I wonder why. We found a speech therapist in the area and started taking her there twice a week. We went all summer and only succeeded in creating more frustration for ourselves and for my daughter.

Typical kids will mimic sounds and words that you say. My daughter never did this. She didn't make animal noises. She didn't want you to read books....but, she would take the books and go look at them alone in her room.

Anytime you tried to get her to repeat something, she would get angry. Imagine that twice a week with a therapist. Everyone once in a blue moon she would be in the mood to try a sound or look at a book with you. But I'm talking like...this maybe happened once a week.

She loved to watch TV. Veggie Tales, Mickey Mouse, etc. She would act out the parts, moving around the room like she was the characters in the movie. Every once in while we'd hear a new word pop out randomly so we let her keep watching them. It became the only time we would hear her interact with anything. She didn't want to talk to us. She also really liked to play on the iPad. At 2 1/2 she was perfectly capable of switching in and out of her own games and would play by herself giggling and laughing for hours on end. I didn't know what to do. She was happier with a TV show or the iPad than she ever was with me. So for a long time I just let it be and I became more and more depressed.

At this time my mother started bringing up the idea that maybe she was autistic. Or had developmental delays. Sensory issues. Something??? She read book after book after book and for a while I was really angry and I didn't listen. There was nothing wrong with my kid. She just couldn't TALK. That didn't make her autistic, ADD, ADHD, Aspergers, etc. It was really difficult for me and my husband both to get to the point where we did acknowledge that our daughter needed something more. During this time I also made talked with some awesome moms online who shared their journey with their special needs kids. It made all the difference in the world to me. I'm not saying it was EASY! Hell no. I had nightmares of never seeing her succeed at school, of her living with us for the rest of her life, never getting married, never having a family of her own. I was so terrified. I'll be honest, from time to time those feelings, doubts, and worries do come back.

Anyway, back to the speech therapist...
She made very little progress with our daughter and I ultimately ended the sessions due to mine and my daughter's frustration. Nothing she was doing in the sessions was anything we weren't doing at home to try and encourage her to speak and copy ANYTHING we said. The money needed to be spent elsewhere.

So moving on...
We found an autism specialist doctor and made an appointment that August. It cost and arm and a leg because it wasn't covered by insurance, but it was still worth it because it put us on the right path to helping our daughter. Within 10-15 min of seeing her, he told us she was on the spectrum. NOTE, he did not say where on the spectrum and he said not to worry about where she was right now. (meaning it didn't matter if she was ADD, ADHD, Autistic, Aspergers, Processing, Sensory, etc.) All treatment was the same for any color of the spectrum rainbow.

Wow! So that was news to us. We had no idea at the time that all these disorders were linked together. His first and foremost rule was diet change. Children on the spectrum are super sensitive to things that typical kids/people can overcome without much trouble.

1. Gluten

2. Dairy

3. Chemical Preservatives and Additives

That's all for now. I'll get into how we started the change and what we saw change in our daughter next time.

XOXO

Krystal

Where it all started...

Letting it all hang out.

If you only knew.

LOL, if you've dealt with fertility issues. You are part of the club and you know what I mean when I say 'Letting it all hang out :-) My husband to this day complains that I have no modesty left. I simply say, "everyone's seen everything already, who cares?" Let's be honest. Once you've done the whole fertility testing, dozens of invasive internal sonograms with dozen of medical students all peering up your whoohoo AND pushing a child out of your vajayjay with a room full of people watching. Your viewpoint changes a little.

I giggle when hubby locks the door to go to the bathroom. Me...I have an audience. Daughter...Dogs... There's no such thing as privacy for a mom. If I try, these strange whining sounds start coming from the hound dog on the other side of the door and then alien fingers come crawling under the door with a little voice that whispers "Whatcha doing?"

My husband and I, like many couples, struggled with fertility for years before being blessed with a darling baby girl. She struggled with jaundice for several weeks after birth. We did the lamp at the hospital, the lamp at home. We cooked that poor little baby girl until she was radioactive. Well, as a new mom, I was slightly concerned by the glow light that had to be wrapped into her blanket 24hrs a day, LOL. Finally, the doc said we could stop and I focused on the next problem.

Nursing.

To this day my boobs hurt when I even think about it. I struggled with being unable to nurse her. I took herbs, I worked with the Le Leche coaches, I pumped. I nursed and pumped and nursed again. Nada. Nothing. Only a dribble of milk. At two months she was still losing weight and we switched her to formula.

2 Months old...

My little baby girl who cried constantly, changed overnight into a happy content child who never had a care in the world. Slept through the night at two months old and shot off the growth charts like a launched missile.

We went about our lives. We'd already decided to slow down the immunization process, something my pediatrician hated, but I pretty much told him "bite me". I knew kids usually ran fevers after having shots and could have flu-like symptoms, but my baby would be feverish and sick for weeks after each appointment. I knew it wasn't right, but the doctor just kept telling me how horrible it would be for her not to have these shots, so we kept marching along. I spread them out and my poor darling daughter was sick for weeks, sometimes two months after each appointment.

In the meantime we noticed she was a little later than average for learning to sit up. She never really crawled. And she never babbled. She would squeal and laugh when she was happy or cry and scream when she was unhappy. But there was really no exploration of language and sounds at all.

9-12 months old...

She would look at toys and stare at them and play a little. But she was removed from the world around her. She rarely held eye contact and was not affectionate.

When she was 18 months old she had another round of shots and a half dose of a flu shot. I have no idea why I let that doctor talk me into a flu shot. It had to have been a bad day. Maybe I was on my period. I don't know, but I regret it still to this day. After that round my daughter's immune system completely collapsed. She was sick with one strange virus after another, fevers spiked to 104, 105, we were in and out of the ER for 4-5 months. I was terrified.

She hasn't had another shot since. Sorry. You can bitch and moan all you want that I'm one of "those" people. I don't give a shit. If you went through what I did, you wouldn't let your kid have another shot either. When she's older and her body is more developed and her immune system is more established (like a teenager) she can have her shots.

During the time that she was so ill, there was no development at all. No language progression. No social skills. She continued to exist and play in a plane outside of the rest of us. She didn't respond to her name when called. She had virtually no words. She didn't make sounds other than laughing or crying. And she still had trouble making any eye contact whatsoever.

2 years old...

But she was a content toddler. She would sit and play with her toys, stare out the window, watch tv and laugh at cartoons. It was easy to say "she'll just grow out of it" or "she's just a late bloomer".

That's what we kept telling ourselves after she was finally well and fever-free going on about six months. She had a few words -Cup, Eat, More, No. She would clap for 'yes' but couldn't say it. Or wouldn't. She still didn't answer to her name consistently. And we continued to be suspicious that she had hearing problems. She had started to make other sounds, but it was gibberish and thanks to the popular movie Despicable Me, I coined her strange garble "minion talk".

At two and a half we started looking for answers. I'll get into that in the next post.

XOXO
Krystal