Extra! Extra!

Calling all mamas who did the 23andMe test for their child with apraxia!

In the next few weeks I will be sharing Jake’s genetic test results. I also have a friend who sent me her results as well. Although I haven’t started to compare the two to see if there are any similarities, I would love to add more genetic samples to the mix. I do not need names or personal information.

If you are interested in participating in this study, please send me an email at tstarmom5@yahoo.com. I will send you the details.

23andme

Second, tomorrow is the kick off for my new team of Contributing Writers! I am so excited to share these different voices and views with you on a regular basis. This week I started a workout/spirtual challenge over at www.peak313.com and the verse for this week is hitting home with me …

LASoulFoodWk1.001

 Amber will be starting us off tomorrow and she has written here before.

If you’d like to review her story again, click here.

Surviving to Thriving … A Collection of Speech Success Stories

It seems like all news is bad news lately … and it’s got me feeling a little pessimistic. Even in my personal life, people who I care about are struggling with different illnesses and problems. Life. Is. Not. Easy.

I think we’re all in need of some positivity, so today I share a collection of stories I’ve been compiling for the past year. Here are my favorite speech success stories that I hope fill you with as much faith, hope, and love as they did me.

These stories are a reminder that our children’s voices and obstacles do not determine their greatness. And keep it in perspective … success means different things to different people. We are not all judged on the same scale. Every person has their own strengths, weaknesses, and gifts.

Luke Farrell, Triathlete

I remember reading this CASANA article shortly after Jake got diagnosed with apraxia. I was in complete awe at this young Australian man’s success. Luke was nonverbal at four years of age and received an autism diagnosis. Once he began school, the autism diagnosis was dropped and was replaced with verbal dyspraxia.

However, Luke did not let his speech struggles define him. At the age of thirteen, after watching a triathlon on TV, he decided he was going to become a triathlete. At that point in his life he had never owned a bike or displayed any special running talent. Luke would go on to have a very successful triathlete career during his high school years.

The CASANA article, which was written by Luke’s grandfather states, “Luke hopes his story, which basically comes down to accepting his situation, learning to cope with it as best he can, looking to his strengths, and getting on with life, will offer hope and support to individuals, parents or families facing similar challenges.”

Kate Hennessy – Co-Author of “Anything but Silent,” College Graduate, Successful Film Career

The second I heard about the book “Anything But Silent,” I knew I had to get a copy ASAP. This book did not disappoint. I thought this mother-daughter collaboration about life with apraxia was fascinating and insightful. I was also extremely inspired by Kate’s determination to beat apraxia and to move into a career that focuses so heavily on communication. I also love that she wants to give back to the apraxia community and is often involved in CASANA events alongside her mom, Kathy Hennessy.

Jason Gray, Contemporary Christian Singer-Songwriter

Last night I decided to switch my somewhat boring, but educational piece on the vestibular system, with this one that you are reading right now. I was listening to music on TV while I was cooking dinner and a song came on by Jason Gray. I glanced up at just the right time to see a fact pop up that said he has a speech impediment, but it doesn’t affect his singing.

My mind is always wandering when I’m in the kitchen, so I got out my phone and googled his name. His story blew me away! He has a stuttering problem, but it is nonexistent when he sings. He is also a songwriter and I love, love, love songwriters. His testimony of faith, talent, and perseverance is deeply inspiring.

If you want to know more about Jason Gray and his speech impediment, click here to read this thought-provoking article.

Byron Pitts, Journalist

I jotted down Pitts’ name a few months ago because his story also interested me. According to his bio on The Stuttering Foundation’s website, “Byron Pitts has brought much attention to stuttering with his memoir, Step Out on Nothing: How Faith and Family Helped Me Conquer Life’s Challenges. The book not only details his speech difficulties, but also his illiteracy until age 12 and his unstable family life. Pitts overcame the odds to become the chief national correspondent with ABC News.” Need I say more? How amazing is that?!?

Albert Einstein, Genius

I leave you today with one of my all-time favorite quotes by none other, but Albert Einstein … the genius who was nonverbal as a child. In fact, I learned through my Google search this morning that it is suspected that Einstein had apraxia or Asperger’s. His brain was lit up differently. He had talents that no one else on this earth had. These words are golden …

quote einstein

What about you guys? Do you have any stories to share?

What I Know For Sure

Fall is right around the corner and Jake has been in kindergarten for about a month now. It’s kind of funny because when you are a stay at home mom and suddenly your chicks fly the coop, you get all kinds of comments from people.

Things like … “What are you going to do with all your free time now?!” and – insert Southern accent – “Why, you’re not gonna know what to do with yourself, are you?!” Then, one of my personal favorites … When someone heard I got recruited for my kids’ yearbook committee … “And you thought you were gonna sit at home and do NOTHING all day! Ha!”

Here’s the thing … I get it.

It is absolutely a season of change for me. I turned the big 4-0 at the end of August, traded in my mini-van for a convertible SUV, and I got my hair cut in a style. My hair has been one length for as long as I can remember, but at this point in my life, I feel silly wearing a ponytail 5 out of the 7 days in a week. I also wear way too many ball caps. So, my hair is now shoulder-length with lots of layers. I have to use hair spray, mouse, and I can’t dry it on high in 5 minutes or it gets really frizzy. It, like me, is a work in progress.

I am at a crossroads in my life.

And what I know for sure is that I want to write. I have a journalism degree, but went into the I.T. industry after college because the pay was better. Then, I left my I.T. career six years ago to be an at-home mom. My oldest son was four at the time and then, a year or so later Jake was born.

When Jake was a baby/toddler, I wrote a 250 page fiction book during his nap times. I finished it the summer of 2011, but then Jake got diagnosed with apraxia about a month later. So, I boxed up that book, put it in my closet, and erased it from my mind. Later that year in December, I started this blog and well, here I am now.

I spent this past summer thinking about what the future of this blog looked like. Jake is no longer in speech therapy and I don’t have as many day-to-day things to share. Although I still have many apraxia topics I want to write about, I wondered if the time had come to type “The End” and move onto other writing ventures. It is a decision most bloggers eventually face, especially if they are writing about their kids. I also started questioning if I felt comfortable writing about Jake on a regular basis now that he is older.

After much soul-searching, I realized that the thought of leaving this group of moms, kids, and SLPs made me sad. Could I really just leave this community and pretend like none of this ever happened? The answer to that question was a big, loud NO! I have loved connecting with this tight-knit group of warriors and I decided it was time to step it up instead of closing down shop.

everyone changed

There are two main changes that you can expect from this point moving forward …

  1. I am super excited to announce that Jake’s Journey now has a team of 4 contributing writers that will post to this site on a regular basis. These ladies are educated, experienced, and have a heart for kids with apraxia. The team is made up of 1 SLP and 3 apraxia mamas. To learn more about these ladies, click on the “Meet the Contributors” tab above. I’ve also updated all the pages and given the blog an updated, more generic look. Yes, I will still be around and writing on a regular basis as well. You can expect new content one time a week on Thursdays.
  2. I have started a new blog – Family Live Life Well: A Journey to Wellness – and have spent the past month building it. This blog will contain excerpts from a book I am currently writing. Both the blog and book will contain facts, as well as strategies I used I improve my family’s health over the past two years. Please visit this site to learn more about my mission.

As always, thank you for your support and for joining me on this journey.

Click here to head over to Family Live Life Well to see what simple, healthy things are going in my kids lunch boxes this week. 

 

Final Thoughts – Part 4 of the Allergy Series

Despite Jake’s mild immunodeficiency and slight gut inflammation, I want to stress that I am 100 percent full of gratitude that I have a remarkably healthy child. With the right diet and environment, his problem is not severe and is very manageable. For the most part, I believe he will always have to eat healthy and watch what products go on his body. I do hope he will improve as he gets older his immune system gets stronger.

In my opinion, Jake suffers from gut inflammation and allergies because he was born with a sensitive system that stemmed from a combination of genetics and our evolving toxic environment. After all, there are 85,000 chemicals floating around in our society today. I also believe the vaccines, steroid creams, breathing treatments, and antibiotics that he had before the age of two, worsened his condition.

I believe Jake is in the gray area that conventional doctors for whatever reason will not typically admit exists. I believe more precautions should have been taken. I believe these same doctors let his health slip through the cracks because he didn’t fit into their neat little box of effect (sickness) and solution (medication).

I have spent a lot of time over the past few years, feeling sorry for myself and worrying that my child could die if he comes into contact with the right food. I used to worry that he would feel different from other kids when he wasn’t eating the same food that they were.

I have come to realize that there is nothing wrong with eating fruits, veggies, good protein, healthy carbs, and sweets in moderation. In fact, Jake has the eating habits that everyone is striving to achieve … and it’s the only life he’s ever known so he doesn’t feel deprived. I have also come to realize that there is not one little thing wrong with being different. Actually, being different creates many teachable moments for others.

And most days, I feel like the threat of anaphylactic shock has significantly been reduced. While IgE levels are variable, I don’t think in my heart of hearts that we’re ever going back there.

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So, what about that fever in January?

The fever happened six days after Jake went off the SCD diet. The blood work that showed the normal IgE levels happened within the same month. Jake would go on to have two more fevers – one in February and one in March – that came on and cleared much like the first.

This is the first year that we have not had to use the nebulizer for occasional breathing treatments and so far ZERO seasonal allergy symptoms! Also – Praise God – as a whole, Jake has only had two allergic reactions this year. I have not had to use the Epi-pen and Benadryl was sufficient both times.

I have been asked this question many times … Do I think the diet caused his immune system to respond normally? Do I think the diet made his IgE levels normal? And the answer is, I don’t know. It seems unlikely to me that just changing what you eat for seven days can spark such a large change.

I also for the record, don’t think my child is officially “cured.” My gut tells me that even though the biggie allergies – dairy, gluten, and egg – test negative, there is a good chance he is still intolerant to them and will never be able to consume these products on a regular basis. BUT, intolerances and a peanut allergy that allows him to sit at a lunch table with his friends without an anaphylaxis threat is a heck of a lot better than where we were. I will count my blessings and praise God not for what we still lack, but for the many, many miracles that have occurred over the past three years.

Thank you for letting me share this experience with you. I know it has been a lot of words, so I really appreciate those of you who stayed with me through the process. Quite often in 2014 I felt crazed … and unsure … and scared.

I felt like I was going to have an anxiety attack the first few days of school because I didn’t 100 percent know how Jake would react in a classroom full of food that used to be deadly for him. But, he has done excellent. I am proud to report there have been no allergic reactions – not even a runny nose or a cough – and each day his body and my confidence builds.

Best wishes to all of you in your own journeys to heal your children.

 

 

 

Tiptoeing Out of the Bubble – Part 3 of the Allergy Series

In the spring of this year, we tried the colostrum our integrative doctor had recommended, but Jake developed allergy symptoms. I decided to take him off of it. My husband and I also voted no to Singulair. We decided to keep doing what we’re doing as it appears to slowly, but surely, be working.

Getting a second opinion from our allergist as well as performing additional allergy testing made me feel more at ease. Also, hearing two professional opinions steering me to reintroduce foods gave me a little more confidence.

Deep down I’m just fearful … and I feel the same way about apraxia. I fear regression. I fear safe foods and safe words here one day and gone the next. It is the life I have lived for five years now and I’ve been burned so many times.

Food Allergies – Positive or Negative?

1.) Fish/Shellfish: I did not test this because the fish reaction from the skin prick test last year was so severe, I swore not to do it again until middle school. I am going to assume Jake still has a severe fish allergy.

FISH reaction! OUCH!!!

FISH reaction 2013! OUCH!!!

2.) Peanut: Mild-Moderate Allergy. Jake is to remain peanut-free, but the allergist said his allergy is not severe enough to request that his class or lunch table be nut-free. He used to get hives when he sat next to someone eating peanut butter, so this is a HUGE improvement.

3.) Tree Nuts: When Jake was three he was allergic to almonds and last year, that was replaced with a mild brazil nut allergy. I did not do any testing this year for tree nuts. The vast majority of tree nuts are processed in a peanut facility; it is a non-issue for us.

4.) Egg: Negative! I am going to add a small amount of egg products back in 2015. I have thought this allergy was gone in the past and then Jake got hives and diarrhea when he had a belgium waffle with 2 eggs in it.

5.) Dairy: Negative! I am not going to add dairy back until 2015 and when I do, I will follow Elaine Gottschall’s approach that she recommends with the Specific Carbohydrate Diet (SCD). I have given Jake a bit of ice cream and he had no reaction. But I gave him a spoonful of Mexican shredded five-cheese and his gas was off the charts bad. Wheezing and itchiness are other things I am watching out for.

Jake never reacted anaphylactically to dairy and this began as an intolerance that grew into a full-blown IgE allergy. I believe dairy was the cause of the severe eczema and mild asthma he used to have because once I removed it from his diet, both dramatically cleared up.

6.) Pork: Negative! I have been adding back small amounts of pork for the past two months. Zero reaction.

7.) Pineapple: Negative! The last time Jake had a few bites of pineapple, it was like his stomach exploded … the worst, most out of control vomiting I’ve ever seen. I won’t be slicing up a pineapple any time soon.

8.) Gluten: The skin prick test has always came back negative for gluten, but the ALCAT we had done two years ago showed that Jake had an intolerance to it. He is going to remain gluten-free for now because I still believe in the gut-brain connection and the huge role it played in Jake’s recovery of apraxia, etc. The ALCAT is controversial for its accuracy, but I witnessed improvement right before my eyes when I removed gluten and dairy and added supplements.

The Rest of the Plan

Jake has been on supplements for almost two years now. Just recently, I have bumped all supplements down to every other day and I am just giving him half of the B vitamin dosage. My goal is to continue to wean him off. Jake is currently taking the following:

  • B vitamins (from compounding pharmacy)
  • CoQ10 (from compounding pharmacy)
  • Metagenics Glutamine (1/4 teas.)
  • Floraboost probiotic (1 scoop)

Acupuncture, which I believe is great for lowering inflammation, will continue to be part of our treatment regime on an as-needed basis; our last treatment was in June.

Despite the fact that our allergist pooh-poohed the gut inflammation theory, I still wholeheartedly believe in it. There are many things in this process that I change my stance on every day, but inflammation is not one of them.

Overall, the real quest becomes challenging the immune system to the point that it becomes stronger without causing it to over-react. I love the analogy that Jessica, our acupuncturist, presented to me … You want to work out the immune system like you work out the body when you exercise. Challenge is good and makes your body stronger, but too much can cause it to break down. Once your body meets the challenge, it becomes stronger and it can do more the next go around.

Tune in on Wednesday for the last segment of the allergy series.

Putting the Puzzle Together

It has been forever since I last reported on the status of Jake’s allergies.  I have written this blog post many times in my head, but I just kept waiting for my thoughts, emotions, and consequently – solutions – to become more black and white. I am finally confident in my stance after countless gray days of uncertainty, fear, and confusion.

Spoiler Alert: Jake is not 100 percent healed, but he is drastically better.

I have been on a serious mission this year to improve Jake’s seven IgE allergies, gluten intolerance, and multiple seasonal allergies. In January, Jake had a few tests done at our integrative MD’s office and we met again in March to devise a plan.

Then, over the summer Jake had his annual allergist appointment. The purpose of this conventional medical visit was to give Jake a skin prick test to back-up the blood test from our integrative MD’s office. Also, I wanted to hear what he had to say about the other tests that we had done at her office. It was interesting to compare these two schools of thought to see what, if any, common ground they shared.

Here is the journey we’ve been on in 2014 …

Specific Carbohydrate Diet (SCD)

We began the Specific Carbohydrate Diet (SCD) in January of this year. Jake was on it for seven days. We stopped the diet because he was having side effects that I was not comfortable with. The results of the CDSA 2.0 stool test showed that the SCD was not a good fit for him.

The purpose of the SCD is to weaken the bad things in your gut that are causing the problems and strengthen the good. The CDSA revealed that Jake’s gut, in the grand scheme of things, is in good condition. The good bacteria are strong and the bad bacteria levels are also where they need to be. Another plus is that the test results for yeast and parasites came back negative.

The guilty culprit … gut inflammation

Jake has elevated Eosinophil Protein X (EPX) levels, which means his gut is inflamed. In this particular case, a high protein diet like SCD, will only worsen the inflammation.

cdsa

This first piece of the puzzle was huge. I believe this explains why I saw such huge gains in his speech towards the end of 2012 when I removed food that he was sensitive to. I think the food was adding to the inflammation load and that it affected him neurologically.

The good news is, his EPX levels were high, but not off the charts. If they were super high, we would be looking at conditions such as Inflammatory Bowel Disease (IBD).

Integrative MD’s take: Elevated EPX (gut inflammation) causes the IgE allergies. One option is to put Jake on Singulair. This med would block the allergens from coming into his body, lower the inflammation, and therefore decrease the allergies.

Allergist/Conventional Medicine’s take: There is no scientific evidence to support that gut inflammation is the cause of Jake’s allergies. This test means nothing; don’t waste time trying to keep inflammation at bay.

Another huge clue … low IgA and IgG antibody levels

According to the blood work that we had done, Jake has low IgA antibodies, which are found in the nose, breathing passages, digestive tract, ears, and eyes. IgA antibodies protect body surfaces that are exposed to outside foreign substances.

Jake also has low IgG antibody counts. These antibodies are very important in fighting bacterial and viral infections. Honestly, this finding makes no sense to me because Jake is always well and never sick.

Integrative MD’s take: The low IgA count explains why Jake reacts to so many things outside and why he is so sensitive to soaps, lotions, and cleaners. He doesn’t have and doesn’t create antibodies to attack bad things that come into his body. His body gets bogged down by the amount of toxins coming into it and therefore, has a hard time getting rid of all the waste. This ultimately results in inflammation and allergic reactions like hives, wheezing, and sores on his feet. Adding colostrum will help bring these antibody counts up and reduce the inflammation.

Allergist/Conventional Medicine’s take: These numbers are something to keep in mind, but not something to be super concerned with. These counts have nothing to do with inflammation. People with allergies can have normal or low IgA and IgG counts. Some people have low IgA numbers their entire life and have no symptoms. There is evidence that people who have eczema typically have IgA counts that are off.

Common ground: Chances are, with time, Jake’s antibody numbers will resume normal levels. Both agreed that re-testing these levels in a few years would be wise. Both also agreed that it is ideal to have antibody counts in the normal range.

What?!? Normal IgE levels?!?

The blood test in January showed that Jake’s IgE levels, although a little high -179 – were still within normal range (0-180).

Integrative MD:  Allergies are getting better!

Allergist/Conventional Medicine:  As Jake ages, his IgE level could be getting lower and simultaneously, his body could be building up resistance to the foods that it was once allergic to. On the other hand, some people with eczema have IgE levels as high as 20,000, but then test negative to everything on a skin prick test.

Did the skin prick test and blood allergy test match up? Does my child still have seven IgE allergies? Tune in tomorrow for the results …

Sources:

  • WebMD, Immunoglobulins, Information & Resources, http://www.webmd.com/a-to-z-guides/immunoglobulins.
  • “Breaking the Vicious Cycle,” by Elaine Gottschall.

If You Were Cured Today …

If you were cured today, sleep would come easy and the exhausted worry that I have felt for such a long time would be lifted. I wouldn’t wake up every couple of hours to stare at the ceiling with my heart racing and medical terms shouting out in my mind.

If you were cured today, I would be happy – really happy. Like Will Smith happy in the movie “The Pursuit of Happyness” when Chris Gardner finally catches a break and earns a good job on Wall Street after being homeless with his son for nearly a year. A happiness that comes only from wanting something desperately and finally getting it. A happiness that can break you down and build you up in the same instant. I love the clips from this movie …

http://www.youtube.com/watch?v=EKlYWL9Obeg

If you were cured today, I wouldn’t read any medical journals, blogs, or Facebook posts on how to make this all go away … how to protect you … how to do the impossible.

If you were cured today, I would celebrate with you. We would read books on my cozy fur chair and snuggle on the couch and watch movies. I’d let you take an extra long bath and sit and watch as your Power Rangers battle before me. I’d kiss your neck and smell your hair. I’d quietly bask in the extraordinary miracle before me.

If you were cured today, I would get a glimpse of a life that didn’t revolve around food allergies, apraxia, eczema, asthma, inflammation, and appointments. I would get a glimpse of a life that wasn’t teaching me the heart-wrenching love that comes from sacrificing everything you love for something else you love more.

If you were cured today, my senses would be heightened. Songs would come on the radio that express exactly how I am feeling. I would sing loudly, blending in with the melody just perfectly. I’d close my eyes and delight in the warm sun shining on my face.

If you were cured today, surprisingly enough, I would eat junk food to celebrate. I wouldn’t worry about words like gluten, processed on shared equipment, may contain traces of, and non-GMO. I’d have Reese’s peanut butter cups for dessert, but I’d still eat them in another room and scrub my hands with soap and water afterwards and splash water on my lips.

If you were cured today, I would be confident in the miracle that God blessed us with, but I’d still be spooked. After all, old habits are hard to break. Do I remember how to act normal at a party? What will it be like to not have an emergency plan always neatly etched out in my mind? When does the post-traumatic stress fade away? At what point do I let my guard down and trust that your body is not playing tricks on us? Why am I even thinking these things? Why am I letting these worries creep in and invade my moment of happiness?

If you were cured today, I would silence my mind and enjoy the moment.

If you were cured today, today – this very day – I would pray. I would pray on my hands and knees, at the silence of my desk, and quietly while you are sleeping beside me in the stillness of the night. I would pray bold prayers, quiet prayers, and prayers of thanksgiving.

If you were cured today, I would feel as though I’d made it out of a tornado alive … a perfectly unscathed body rising up amongst the aftermath of destruction. I would look at life differently – how could I not? – and I would cherish the survival lessons that rescued me from the storm.

ProverbsandQuotations.com

ProverbsandQuotations.com

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I wrote this post on Thursday, January 9, 2014, the day that Jake got a fever for the first time in four years. I celebrated this moment by doing all of the things mentioned above.

Why did I celebrate a fever of 102.5?

Because before this moment, my son’s immune system had not been doing it’s job correctly. Jake has not been sick since he was 18 months old, but his body has spent plenty of time attacking a wide variety of false-enemies.

A fever is a proper immune response that can help our immune systems to work better and harder. I viewed this fever as the first steps to allergy recovery. I did not give him Advil or Tylenol because I didn’t want to suppress his immune system. Instead, I allowed his body to work through it and in turn, get stronger. His fever broke two times in 24 hours and each time I rejoiced, imagining that all the toxins that plagued his body were being expelled.

This post marks the beginning of a series I will be running over the next few days to share the status of Jake’s allergies.

For more information on fevers: