Jake's Journey with Apraxia

And the Friends We've Met Along the Way

“It’s complicated.” That’s what I’ve started replying when people ask, “What’s Jake allergic to?” I usually then follow-up with, “Technically he’s allergic to fish and peanut, but there’s a lot more to his situation.”

www.jakes-journey-apraxia.com

Allergy testing age 3

Regarding food, we have experienced it all. IgE anaphylactic-type allergies, intolerances, and we have even been three-year participants in the Great Gluten-Free Casein-Free (GFCF) Debate. Things were going along great in our regimented bubble free of six food groups (fish/shellfish, peanut/tree nut, pork, egg, dairy, gluten) until the end of 2014 when minor allergy symptoms started popping up here and there … eczema, asthma, stuffy nose, red, itchy eyes, belly aches, and horrid gas. What?!? How can this be?

My first thought was that Jake’s diet is so limited that he’s eating the same foods repeatedly and is therefore, becoming intolerant to them. With this theory, came major mommy guilt. His allergy skin prick test last year showed that his IgE allergies had gone from seven to two and yet still, one year later, I hadn’t added any foods back out of fear … fear of false-negative test results, anaphylactic shock, change, learning disabilities, speech regression, uncertainty, and allergic reactions.

So. Much. Fear.

But now, in the wake of this new episode, a much worse feeling.

Suffocation.

I could not wrap my brain around taking any more food out of his diet.

I spent six months wracking my brain trying to figure out what was causing his symptoms. At the beginning of the summer, I revisited a condition called histamine intolerance that I first heard about two years ago. I asked our allergist about it last summer and although he admitted that “sure, that’s a possibility,” histamine intolerance is only a diagnosis that is given in Germany, Austria, the UK, and Canada. (1)

When I looked closer at the food list of typical culprits – those high in histamine and/or those that release histamine stored in mast cells – I was blown away. Many of these things were already out of Jake’s diet because of past allergic reactions: liver, vinegar, pineapple, most tomato products (organic ketchup and spaghetti sauce), processed, ready-to-eat food (Pop-Tarts), certain types of cheese, most hot dogs except for Hebrew National, beef/turkey jerky, and pumpkin. What was even more interesting was that the remainder of these foods – ketchup, chocolate, oranges, bananas, hot dogs, canned food, refrigerated leftovers, and food dyes – were now a HUGE part of his regular diet. (1)

Could histamine intolerance possibly be the answer to our six-month allergy epidemic?

As a test, in June I removed these foods from his diet and within 24 hours ALL of his symptoms were 100 percent gone. Gone! Overnight the broken skin on his heel literally fused back together! No more chronic stuffy nose at bedtime for the first time in his life! I waited a few weeks and tested a few primary suspects again, and yep, the minor symptoms returned.

Histamine is not just a bad guy that causes pesty allergy symptoms to develop. It has many positive roles as well and is believed to be involved in 23 physiological functions. I found it particularly fascinating that histamine is released as a neurotransmitter. (2) According to Brain Facts, “Whether it is learning a new fact or deciding which way to move, tasks executed by our brains rely on the smooth and efficient release of neurotransmitters, chemicals that send messages from one brain cell to another.”

Part of ASHA’s definition of childhood apraxia of speech is, “The brain has problems planning to move the body parts needed for speech. The child knows what he or she wants to say, but his/her brain has difficulty coordinating the muscle movements necessary to say those words.”

I also found it interesting that it is “suggested that histamine controls the mechanisms by which memories and learning are forgotten.” (2) Upon discovering this, I remembered the words that Jake’s apraxia specialist told me two years ago, “If you fix the memory, you fix the apraxia.”

And so I formed a hypothesis … an educated mommy guess. Could histamine intolerance also have played a role in his apraxia?

Is this why Jake was such an excellent responder to diet intervention? Remember, three months after he started a clean, unprocessed, GFCF diet, supplements, and Speech-EZ, he spoke his first words at 4.3 years old. He went from silent to testing out of apraxia a year later. And it wasn’t just the speech that improved, it was his entire demeanor. No more fidgeting – squirming around like he had ants in his pants – no more grueling hours of speech therapy with a brain that couldn’t grasp the challenge of communication.

I think his recovery was probably due to a combination of everything during that time, but I do wonder if taking out some of the big histamine players that I was unaware of at the time were enough to at least tilt the scales of recovery.

After reading everything I could get my hands on regarding this condition along with the dramatic improvement of Jake’s symptoms, I knew I must look into this further. I set out looking for someone to help me.

First, I found Dr. Theoharides, an expert out of Boston. I was particularly interested in his work because he is studying the effect of high-histamine levels on speech. He has videos and testimonials of children with autism speaking after their histamine load was lowered with NeuroProtek, a product made from the three flavonoids luteolin, quercetin, and rutin. I emailed him our story, but never got a response back.

Then, I contacted Dr. Joneja out of Canada. Although she is researching full-time and not taking on new clients, she recommend me to Wendy Busse, a dietician who assists people with allergies, intolerances, and specifically histamine intolerance.

One week later I was Skyping with Wendy. I learned more from her in our 1 hour and 45 minute appointment than I have in six years from pediatricians, allergists, and dermatologists. She created a plan for us to add foods back into Jake’s diet, while keeping histamine-rich foods out. So far we have successfully added back pork chops and mozzarella cheese with no side effects.

I am excited about this potential breakthrough.

I have always known Jake was more than “just” a food allergy kid because his reactions are so sporadic, extensive, and not just limited to food. Fortunately he does not have seasonal allergies, but he is hyper-sensitive to scents, cleaners, hygiene products, and the ocean.

Knowledge is power. I can cope with his condition, but I have to know what it is first. I have spent years feeling paranoid because his reactions are so random. So, imagine what it feels like to finally be able to connect the dots! Also, this discovery will hopefully allow Jake to eat more food in the long run. Yes, out of the gate we are taking a few more foods out, but at the same time, the foods that we are able to potentially add back in are huge.

Histamine intolerance is definitely tricky though. For example, Jake should be able to tolerate a majority of dairy products, but aged cheese and yogurt may cause problems. Something like a plum or peach may not cause symptoms if it is fresh off the vine, but as it ripens and the histamine level increases, it may evoke reactions. He may be able to eat a pork chop, but not pork sausage or bacon because of the way it is processed. He may be able to eat vanilla ice cream, but not chocolate or a popsicle made with dyes. He may be able to tolerate gluten, but things with a high yeast content may spark a reaction. And then, sometimes a food eaten by itself is fine, but eating two, three, or four histamine foods in a day might cause symptoms (bucket theory).

For us, histamine intolerance means that if Jake overloads on histamine foods, he may have asthma, belly issues, red/itchy eyes, and eczema. If he has one of these things – like chocolate or an orange – he just gets stuffy. Ketchup and banana have been the only foods that have made immediate, more problematic symptoms appear.

iphoto glass

Photo inspired from “Working With Histamine Overload,” a slide show by Tiffany Blackden.

Despite the negatives of histamine intolerance, learning about it has been fascinating. I look forward to future research on the relationship of histamine with speech. It is also an interesting philosophy to me that people who have seasonal allergies may benefit from a reduced histamine diet during pollen/ragweed season and that the very med we take for allergies – antihistamines  – alter our DAO enzyme production. (3)

In conclusion, what IF histamine intolerance was Jake’s underlying problem all along? And what IF those allergy symptoms returned this year because the root cause was misdiagnosed this whole time?

My biggest prayer would be for the histamine intolerance to replace the gluten, casein, and pork intolerances, which were taken out due to our ALCAT results in 2012. I also pray that histamine intolerance is not a lifelong condition for him. Again, it is all reliant on the enzyme (DAO) I mentioned above, which can either replenish itself once histamine is out of the diet or is available via supplementation. I can handle the peanut and fish IgE allergies, but I do hope they become less severe. My biggest fear is that histamine intolerance, which often comes with other allergies, will be an addition to the gluten and casein intolerance. We can take it, but it will make my heart hurt. Only time will tell.

Right now, I am working on widening Jake’s diet and trying my best each day to focus on the positive. And there is much to be thankful for. As long as my boy is in his allergy-free bubble he is 100 percent awesome.

***********************************

Sources:

  1. “What HIT Me? Living with Histamine Intolerance” by Genny Masterman, 2013. 
  2. “Histamine,” Wikipedia. 
  3. “DAO Enzymes and Histamine Intolerance,” by Dr. David Jockers, Natural News

All remaining source links provided above.

Head over to the What Would Gia Say blog to register for a giveaway for the new version of the Speech-EZ app – the improvements sound awesome!

For those of you who have been readers of mine for a while, you know how much I love this product and concept. Hand cues were *key* in helping Jake find his voice. In fact, I still use hand cues even though Jake is out of apraxia. For example, I still hear him sometimes mixing up /t/ and /d/ sounds in speech and I’ll also catch him spelling words with these sounds wrong. By correcting his speech/spelling with a hand cue, he is able to really *get* what I am explaining. It is such a fabulous tool!

Also, yesterday our neighbor was over playing with Jake. He is a few months younger, but it also going into first grade. I’m not sure what his speech diagnosis is, but he says many things incorrectly. All summer he’s been replacing the /l/ sound for /w/ when asking for something. “Can I have water ‘PWEASE!!!” So just for kicks, I showed him my “magic” hand cue yesterday for /l/ and explained, “This will be here for you and will help you say words that you have a hard time with.” Let me tell you people … he said it correctly for the first time all summer!!! On the first try! A beautiful, perfect “PLEASE!”

Click here to link up to the What Would Gia Say blog and to read a full review of the new Speech-EZ app.

This post is an oldie, but a goodie. It is from two years ago when Jake was heading off to Pre-K 4.

I hope this set of resources will ease your nerves a bit and give you some ideas for how to best transition into the school year.

Click here to read “Back to School Resources.”

by Amber, Contributing Writer

When we started speech therapy, one of the first things they did was teach Cason sign language. I immediately had a “Duh!” moment. Of course he should do sign language! Why hadn’t I been doing that all along?

When my daughter was little, I taught her a few signs. When I taught Pre-K, I taught my students sign language. Why hadn’t I been teaching sign language to Cason?

Children with apraxia understand what is being communicated, but aren’t always able to effectively communicate back, which causes frustrations. We had a lot of frustrations going on with communication, on his part and on mine. He would become frustrated because I didn’t understand his needs and wants. I would become frustrated because I didn’t understand him. The result was a lot of crying, and sometimes the crying came from both of us.

Before introducing sign language, we would play a “game” of 20 questions. I call it a game, but it was anything but that. It was just me going down a list of things I thought he may be trying to say. “Do you want milk? Do you want to eat? Do you want your cars? Do you want the monkey? Do you want_____?” He would start crying when he wanted/needed something, and I couldn’t guess what it was.

He couldn’t point to what he wanted (that was a delayed skill). He would start crying and that would be my cue that he needed something. Now, if he was an infant, then crying would be a normal cue for communicating a need. But Cason was over 18 months old and really needed to be able to communicate in a more effective way. Sign language was our lifesaver during that time. But we did run into some problems.

When we started sign language, we started with the sign for “more.” After a week or so, he was able to make that sign. The next word I wanted him to learn was “milk.” I felt it was important for him to learn that word in sign language because it would help with his frustration level when trying to communicate with me when he was thirsty.

We started trying to learn the sign for milk, but that sign took a while to learn. The sign is to open and close your hand, kind of as though you are milking a cow. Cason had problems getting his fingers to work, and it turned out to be another motor planning issue.

He would hold his hand out, look at it, and his fingers would start to kind of twitch. I knew his brain was telling them to open and close. I knew he was wanting them to open and close. However, the brain and hand just couldn’t seem to get on the same page. Finally, after quite a while, he figured it out.

We continued to teach him more signs and sometimes ran into the same motor planning problems. For the most part, he was able to pick up the signs fairly quickly. We also bought the Signing Time DVDs. Those were awesome!

I had a few people express concerns when we started sign language. They were afraid if Cason learned to sign, he would choose to do that rather than learn to talk. However, that is rarely the case when a child is learning sign language. Cason wanted to talk, and the desire to do so was strong. Sign language just gave him an alternative way to communicate while his brain was still figuring out speaking.

We actually found that when he started learning signs, he also started trying to vocalize the words. For example, when he signed milk, he would say “mmmm.” When he signed eat, he would say “eeeee.” Those were such big steps, and it gave us something to build on. He gradually progressed to saying “mih” for milk while he signed.

As the words started coming over the next year, the signs started fading for Cason. We starting using signs with his brother, Callen (three years old and currently in speech therapy), and now we do sign language with our youngest, Caden, who will start speech therapy next week (at 19 months old).

Sign language has been a huge part of our life during the past five years. I always encourage mothers of infants to start sign language early. It is so helpful, and it’s something the whole family can get involved in and learn.

How many of you have tried sign language with your apraxic kids?

What was your experience like? We’d love to hear your story.

by Jenny Sanzo, Contributing Writer

We just got back from two weeks in Washington, DC for CHAMP Camp at George Washington University, a summer intensive specifically for apraxic children ages 6-9.

What a wonderful experience!

CHAMP was the perfect mix of individual and group therapy, parent training, and free time. I really feel as though Colten made significant progress in the two weeks that we were there. I credit enthusiastic clinicians and visual/motor cues for his success. For example, to achieve the “v” sound, he pushed his thumb at the midpoint of his lower lip. For “w” he made a circular motion around his lips with his pointer finger. He worked tirelessly with a mirror to get his tongue to his top teeth to produce the “l” sound.

While we were there, he was able to get sounds that have been eluding him for ages: v, w, th, and l. He left there being able to say thirsty instead of “firsty,” lego not “way-go,” and no longer sounds like a vampire (he used to replace the “w” sound with the “v” sound – so welcome became “velcome” a whale was a “vale” and so on.) His s-blends have improved so much thanks to the tactile cue of gliding two fingers up his arm as he makes the “snake” sound. He can now say “school” not “tool.” The tactile piece was the magic bullet.

Other things I loved about CHAMP:

  • Focus on literacy! Sight words, segmenting, phonemic awareness – all approached in fun and innovative ways.
  • Help with grammar! Pronouns, negatives, and tenses, oh my!
  • Incorporation of movement in his therapy. Colten is a very active kid. I loved watching his clinicians play soccer or basketball in the therapy room and then have him sit and go through his words so he could get up and play again.
  • Individualized programming. They were so good about tailoring his therapy to his interests. Sports, Star Wars, Legos – they knew what he liked and got him to work. I wished I could have packed his therapists in my suitcase to take home.
  • Community. There is something to be said for spending two weeks with other families who get it. To see Colten realize that he is not alone. To watch friendships blossom … friendships with children who each have their own set of challenges, but are overcoming them beautifully. To sit in the observation room with other parents, all with tears in our eyes desperately wishing the world could see how hard these children work for every single word. The solidarity. The understanding. The love. There was just so much love.
  • Dedicated Clinicians. Students with full course loads who were prepping for back-to-back therapy sessions, still made it a priority to attend a baseball game with the kids. The effort and the dedication were astounding. There were well thought out plans for every session, creative projects and programming, and you could just tell that these clinicians are passionate about they do. They say “like attracts like” and Jodi Kumar must only attract the best and brightest students in the field, because I could not have been any more impressed. Bravo!
Colten at CHAMP Camp - www.jakes-journey-apraxia.com

Colten at CHAMP Camp – http://www.jakes-journey-apraxia.com

We’d love to go back for a three day intensive at some point during the school year and plan on returning next summer for sure. We couldn’t be happier with his progress and our CHAMP camp experience. I highly recommend this program if you have older children with apraxia – plus you get to explore Washington, DC. Win-win!

Colten gives CHAMP a big thumbs up!

Note from Tori:  Thank you Jenny for sharing Colten’s experience at CHAMP. From the beginning, Jenny and I have been together on this crazy roller coaster ride called apraxia. She has definitely made the journey more entertaining! Jenny blogs at Flower City Fashionista and she is a great resource for the latest styles, as well as how to obtain some pretty fabulous hair! Check out her latest post on rocking florals this summer and click on the “Monat Hair Care” tab at the top if you’d like to learn more about her “magic shampoo.” She’s also looking for reps if you’d like to put a little extra money in your pocket. 

Other posts by Jenny:

by Tara, Contributing Writer

I can specifically pinpoint when the headaches began. When my son (who’s now 5 years old) started speech therapy at 18 months old.

I was stressed to the max. Living 28 hours away from my family and friends in a new city. No help. My husband had started a new job that demanded his full attention. Spending every moment I could researching apraxia. Spending every other moment sobbing my eyes out in fear, frustration and anger over what apraxia really meant for our little boy. Oh yes and I also had a newborn baby girl who needed (and deserved) my full attention as well.

But, as any mom who has a child, with or without special needs, can probably attest … You never put yourself first. I pushed the pain of my constant headaches away. I would collapse into bed at night hoping the headache would at least dull by morning.

It never did.

About a year into the apraxia journey, my dad and stepmom thankfully pushed me to go see a doctor. The headaches were getting worse (which I didn’t think was possible).

The first doctor thought I had a bad sinus infection and put me on antibiotics. That did nothing. Then I went back. More tests for everything from Lyme Disease to an iron deficiency. That turned up nothing.

I kept battling with the doctor and then finally switched. Still no answers. Then we moved. Again. So my health got pushed aside because I had to find new therapists for our son (and soon after that my daughter as well). That was my top priority and I had tunnel vision in finding them the best possible help.

LONG story short. It’s been almost 3 years of constant headaches that won’t go away. By the end of the day the pain is so ridiculous I want to curl up in a ball. Several more doctors. MRI’s. Neurological tests. The list goes on and on.

Then a friend sent me an email:

“Flight attendants ask parents to put on THEIR OWN oxygen masks first before helping their kids. WHY? Because a parent’s gut instinct is to jump into action to protect and save their child. However, without their own oxygen … parents will be of no use to their kids.”

It hit me like a wrecking ball. If I didn’t find a way to help myself feel better, I would have no energy or much worth to help my kids continuing battle with apraxia.

a young woman walking in backshadow

Photo courtesy of Dirt and Boogers blog, “The Perfect Birthday Present for Mom” post. http://dirtandboogers.com/the-perfect-birthday-present-for-mom/

So, instead of typing “apraxia research” into Google night after night, I started typing in my specific health symptoms. I found a new doctor a few months ago and for the first time, she actually had me sit down and describe my life. Before asking any questions specifically related to my headaches she wanted to hear about a “day in my life.”

Soon, I was sobbing. Honestly, I think they were almost tears of relief. Somebody who really wanted to hear about ME and how I was dealing with the kids, their appointments, the IEP’s, the school meetings, the therapists.

Within an hour, she had it pinned down. I had TMJ (from grinding and clenching my teeth so badly from stress while I was sleeping) and tension headaches. She told me, “It’s amazing the toll stress can take on a person’s body, even when you think you are handling everything as good as could possibly be expected.”

I now have a night guard to wear while I sleep and some daily medications to help ease the headaches. My doctor said the damage has been 3 years in the making so it certainly isn’t going to be erased overnight. But at least there’s hope my headaches will decrease with time.

I’m also doing my best to take 30 minutes at the end of every day for ME. Of course, that’s way easier said than done!!!! But, whether it’s yoga or treadmill time in our basement, I’m really making more of an effort. I’m feeling better about myself and definitely have more energy for the kids, their appointments, speech homework, etc.

The lessons are really all the same:

  • Find a doctor – or speech therapist – that you click with. Period. You are wasting your time if your gut tells you something is wrong, but no one is listening.
  • Be a cheerleader for yourself and your child with apraxia. Stand up and shout if you have to, but don’t leave any stone unturned to get the help you and your child deserve.
  • Nothing can be fixed with a magic wand. Often, life is a marathon. Be patient. As long as there is a glimmer of hope then you can go the distance.

Do you have an apraxia anthem for your child?

It must be the perfect combination of melody and words that 1.) Inspires you to keep working and loving hard to advocate for your child and 2.) Reminds you how uniquely awesome he/she is.

I see this question presented every once in a while on the apraxia support groups and again and again, Katy Perry’s song Firework often wins by a landslide. I love in this video how fireworks are exploding out of her heart. I mean, doesn’t it sometimes – between the love, frustration, worry, hope, and fear – LITERALLY feel that way?!?

Every time you hear this song, I hope you smile and think about that rock star kid of yours. I also hope you remember there’s a big group of us scattered across states and countries that are walking through this whole crazy mess of apraxia,etc. together. This is our babies song. To all those mamas out there … crank it up.

firework

https://www.youtube.com/watch?v=QGJuMBdaqIw

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