Spring Breakin’ with Apraxia, Etc.

Last week my family and I went to Blue Mountain Beach in Florida. Travelling with kids in general can be far from the R&R we all so deserve, but when you have a special child, a whole extra set of challenges (and laughs!) come about.

Here are a few of ours …

1. Cuteness … There are very few perks when you have a child with apraxia, but one thing I am enjoying with my 5 1/2-year-old are the funny mispronunciations that come out of his mouth. A neurotypical child would have been at this stage three years ago, but it’s kind of cool to have it delayed. I appreciate it more and also feel proud that I can laugh at these words (even with other people!) without overanalyzing and correcting. For example …

2. Allergies … Jake’s allergies are improving and he was able to eat a chocolate ice cream cone. Big deal for this little guy! I think I heard the angels singing the Pharrell Williams’ “Happy” song while he ate his ICE CREAM with a FORK and was insistent on NOT eating the BOWL (cone).

We also got to eat at a seafood restaurant for the first time in three years. I brought food for Jake to eat in his lunchbox, but he didn’t break out in hives when he was around the smell of fish. This was a huge step for us and I was a nervous wreck the whole time.

3. The dreaded conflict … We’d been in our condo for about an hour when a problem arose. Jake had gone down with his ten-year-old brother to play baseball with a group of kids who were out on the grassy common area. I was on the balcony watching and making out a grocery list. I glanced down and saw an older lady scolding Jake and motioning for him to come to her ground-floor unit. I told my other son to go help Jake as I walked down to see what was going on.

Turns out, Jake accidentally hit a four-year-old little girl as he was batting. The older lady apparently was the grandma and wanted Jake to come inside to apologize to the little girl, but he refused … mainly because he freezes in conflict.

Maybe my sense of perspective is a little twisted, but I was actually glad that Jake froze and didn’t talk or go with a stranger. I think I can mark this down as another apraxia perk … does not talk to strangers! Also, I was proud of my other son who said, “Bring her out and I’ll make my brother apologize.” Great job boys!

By the time I got down there the grandma was inside and the mom was outside with her daughter. It couldn’t have been that big of a deal because there was no mark on the girl and she wasn’t crying, however I did understand why it was important for Jake to say that he was sorry.

But, Jake just shut down and was crying and scared. I wanted to just tell that Mom who was looking at us with her disapproving glare … “Look, he’s only been talking for a little over a year. He needs extra help. He may not *look* like he does, but he does. He’s not that confident with his voice yet. When he wasn’t speaking to the other lady, it wasn’t because he is bratty or rude. And when I tell him to say ‘I’m sorry, it was an accident,’ to someone he doesn’t know, that’s literally very difficult for him to do.”

Those are the words that were going through my head, but not the ones that I spoke. I just didn’t want to get into it with her and I didn’t want either he or I to start using apraxia as a crutch or an excuse. So, I just spoke for him. He wasn’t acting nasty, like he was refusing just to be spiteful, and I just went with it.

I explained that he said he didn’t see the little girl and it was an accident and that he obviously feels terrible that he hurt her and that yes, he was sorry. Then I asked, “Aren’t you sorry, Jake?” and he nodded his head. The mother in turn took some of the responsibility saying her daughter shouldn’t have walked out to an area where boys were playing baseball. Jake and I chatted about the situation on the way back upstairs and all was good.

4. Book Love … I read the best book on this trip! I’m always so buried in nonfiction for Jake’s issues, I don’t read fiction nearly as often as I used to. The Art of Hearing Heartbeats is a love story about two people who have disabilities (blind and crippled) and how those issues make them uniquely awesome people in other ways. It’s a book about doing the impossible, optimism, hard work, faith, and discipline.

heartbeats

Have a blessed Easter weekend!

The Journey to Find the Right SLP for My Child: Part 3

strength

Jake began speech therapy with SLP #4 in November of 2011 at age 3.2 years old.

I liked the following things that SLP #4 did …

  • Used Kaufman cards on a regular basis.
  • Structured approach. She worked on targeted sounds, words, and set goals.
  • She drilled a large set of words (10 or so) before letting Jake play. Therapists in the past had drilled one word and then let Jake play. If he practiced several words in a row, his speech and focus would improve.
  • Her focus was 100 percent on Jake. SLP #s 1,2, and 3 talked to me a lot during sessions.

I disliked the following things that SLP #4 did …

  • Only did PROMPT for the first couple of sessions and then stopped.
  • No variety in speech therapy sessions. Only 1 activity per session and the same method of drilling words each week – in a chair at a table with flash cards.
  • When Jake regressed after nine months of therapy, she didn’t switch up her therapy approach to see if that would help. Her solutions were – (a.) I should stop working with him at home because he might be getting burned out. (b.) Go back to the first Kaufman words that he had mastered months before.
  • She did not use hand cues and in my opinion, did not appear open to the Speech-EZ approach.

Jake did therapy with SLP #4 for about a year. In the end, we exchanged words over email, which shook our relationship to the point where I questioned whether or not it could ever be repaired.

That turning point with SLP #4 and the feeling of fear that no one was going to help me with my son’s apraxia, forced me into action.

It was then that I decided I would learn the details of the Speech-EZ program myself and that I would fly from Georgia to Arizona to get Lynn Carahaly, the creator of the program, to train me. I had a very strong gut feeling that this program would work because Jake had always been a natural with hand cues. After all, I heard my completely non-verbal, three-year-old, speaking on a ten-month-old level, say his first sounds and words with cues.

butterfly impossible

The week after SLP #4 and I had our disagreement, she had a conference to attend and I saw a substitute therapist. Turns out, that twist of fate introduced me to SLP #5!

I watched with tears in my eyes as SLP #5 used hand cues with Jake without me even asking. The chemistry between she and Jake was magnetic. I will never forget that day. A boy who had just turned four-years-old and was about to start repeating the first Kaufman set, said “spaghetti” with hand cues. Wow.

Jake started therapy with SLP #5 in November of 2012 and I view her as an angel who rescued us. She was and still is everything I’d ever dreamed of and wanted for Jake.

We did still end up going to Arizona to do a week of intensive therapy with Lynn Carahaly in May of 2013 and SLP #5 was open to working with Lynn and learning as much as she could from that experience. She has also been 110 percent on board with the Speech-EZ hand cues. Also, she is so proactive with apraxia that she is attending the CASANA conference this year in Nashville. She rocks!

I think SLP #5 is the perfect speech-language pathologist and is outstanding at her job. This is the advice I gave the young SLP-in-training who contacted me a few weeks ago and inspired this series. SLP #5 possesses all of these qualities …

  • Hand cues and Kaufman cards.
  • Multiple activities and different lesson plans in each session.
  • Drill the same concepts, but switch up the approach. For example, right now we consistently work on asking questions and auditory memory, but there’s many ways that you can do that.
  • Think outside the box! For example, if the child seems to be distracted with saying one word and then playing a game, try drilling ten words. If they seem “on” after ten words, keep going. If they have ants in their pants, switch gears and do an activity that requires movement.
  • Stay up-to-date on the latest information about apraxia and continue to learn. It puts a parent’s mind and heart at ease to know they have an expert working on their team.
  • Be nice, but firm, and set high standards. SLP #5 makes Jake work hard and always pushes him to be better. A great coach!
  • Give the parent homework to do with their child at home. Don’t make them ask (or beg!) you to give it to them.
  • Have a respectful partnership with the parent. SLP #5 is the only therapist who has valued my opinion as a mom. I love her for this!
  • The child’s best interest is always #1! Therapy is not about parent and/or SLP egos and who is right and wrong. It is about getting that child to talk and doing everything in your power to make that happen.

In November of 2013, after one year of being with SLP #5, Jake’s test results showed that he no longer has apraxia. His errors are now age-appropriate and consistent.

We will end speech therapy with SLP #5 at the end of May (5.8 years old) and it is bittersweet. The day that I have dreamed of is finally here and instead of jumping up and down with joy, there is a part of me that wants to sit down and have a good cry.

The journey – the struggle – with speech is almost over. While I know more challenges lie ahead of us, I survived this trial. With SLP #5′s help, we kicked apraxia’s butt! She has become a huge friend in our life and not having her to cheer us on makes me feel sad. However, I know it is time to move on; it is time for change.

Additional Resources:

Questions to Ask a SLP if Your Child Has Apraxia

 

The Journey to Find the Right SLP for My Child: Part 2

This is Part 2 in the series I am running on our journey to find the right speech therapist for my son with apraxia of speech. If you missed Part 1, please click here to read.

rose

SLP #3 was at our public school system. We visited her the week of Jake’s third birthday and she gave him his first formal speech test. She agreed with the apraxia diagnosis and her results showed that Jake was speaking on a ten-month-old level. SLP #3 was a good speech therapist, but admitted up front that she didn’t know anything about apraxia. She also told me that she went on YouTube to view therapists working with apraxic kids because she wanted to give him the correct therapy … and she did.

I really respected her honesty and also that she took time outside of work to think about my son and the best way to help him. I don’t feel like SLPs # 1, 2, or 4 ever did this.

We are in a poor school district and although SLP #3 hadn’t been given money in years for therapy supplies, she took her only $200 for the year and purchased Kaufman Cards for Jake. Her approach with him was like night and day in comparison to SLP #2. She was tough on him, but I liked her disciplined, straight-up approach. She also had sensory issues (she also told me this up front), so no loud noises, squeaking of the chair, squealing, etc. were allowed.

The best piece of advice that she gave me was …

You have to push and challenge him to speak. He CAN do it.

The things that she did that worked well in speech therapy were …

Basic hand cues, Consonant-Vowel Drills, and Kaufman Cards

SLP #3 introduced Jake and I to basic hand cues, which I didn’t even know existed at the time. Some of his first sounds and consonant-vowel combinations were spoken because of hand cues. I also loved that she was following the Kaufman protocol because it made sense to me to start therapy with the first sounds that a baby naturally makes and then build on those.

We were with SLP #3 for four months – September 2011 through January of 2012. For two of those months, Jake was also seeing SLP #4, a private therapist.

I discontinued services with SLP #3 because I wanted one-on-one therapy. Sometimes Jake would be in a group with two other kids and in this environment, a 30-minute session gets slashed to a 10-minute-at-best session. I also felt like Jake would lose focus when it was the other kids turn and it was sometimes hard to get him back.

Last, SLP #3 was a ghost hunter and while I would have liked to have heard her stories in a different time/place, I was very fragile and stressed at that point in my life. Her tales week and week out were just too much for me to add to my plate.

It was difficult to weigh the pros and cons of this relationship, but my gut told me I must move on. Continuing on with both therapists was also an option, but it just didn’t feel like the right path for us to take.

To Be Continued … Yes, there is a happy ending.

The Journey to Find the Right SLP for My Child: Part 1

A few weeks ago, a college student and SLP-in-training, contacted me to gather information for a paper she was writing on apraxia. She asked me the following questions …

  • What was it like working with the professionals who were helping your child?
  • What were the techniques used by professionals that helped your child the most?
  • What advice can you give me as a future speech therapist to help me in working with children with apraxia?

A few thousand words later, I felt that it was important to share the answers to these questions with all of you. I will do so in a three-part series.

Spring has sprung and I know many parents are currently evaluating summer and fall speech therapy options. I am going to speak candidly in this series and I hope that my honesty will help you in your own journey with apraxia. These words are for you as parents and SLPs who care about helping these very special children find their voices.

The purpose of this series is to:

  1. Educate parents on what to expect out of speech therapy.
  2. Educate parents on the treatment of apraxia.
  3. Reassure parents that SLPs are not one-size-fits-all.
  4. Give SLPs a peek into the mind of a parent whose child has apraxia.
  5. Show parents that there are SLPs out there who will respect and value your opinion and also work hard for your child.

fight

Over the course of the 3 years and 3 months that Jake has been in speech therapy, we’ve had five SLPs. If I would have been pleased with #s 1-4, we would never have gotten to #5. It was very difficult to find a speech therapist who was educated in apraxia. I had to do all the research myself, seek out other experienced apraxia mothers, find the best treatments available, and then search for a SLP who was willing to help us.

I truly felt alone in this battle until Jake turned four and we finally found SLP #5.

SLP #1 and #2 both did play speech therapy. Although Jake was only two-years-old, I wish those SLPs would have done more than play with him. I knew then and still know now, that he could have handled more. We could have used Kaufman Cards and hand cues at that age.

I don’t know what this approach would have hurt, even if an apraxia diagnosis couldn’t be given because he wasn’t saying enough words to measure the errors and inconsistencies. Or, when a child is making zero progress, I don’t know why other techniques couldn’t at least be explored.

SLP #1’s job through our state-funded early intervention program, was to primarily teach me how to encourage my then 27-month-old silent son to speak. At the time, I remember thinking to myself …

Why are you talking to me so much in speech sessions? He’s the one who needs help, you’re the expert, spend time with him, not me.

And truly, I was confused, Googling things like - What do speech therapists do in speech therapy? - because I genuinely didn’t know what the typical protocol was. I knew zero about speech therapy at that point in my life and I wish I would have been given more guidance for what to expect in sessions.

But, with all of that said, I really liked SLP #1. I understand now that she was limited with what she could do because she was employed by the government. Looking back, I realize that she did successfully introduce me to the very basics of speech therapy. She taught us basic sign language, gave me literature to read, and encouraged simple communication like “more” and “eat.”

Quite honestly, at that time I was a dramatically different version of myself than I am now. I was a fairly new stay-at-home mom and I wasn’t a natural. I am not too proud to say that I needed help in learning how to play with my child in order to encourage speech.

After a few sessions, I felt like I was doing everything I was supposed to do at home, but still not seeing any results. SLP #1 and I agreed that it was time for Jake and I to move on to a private therapist.

When Jake was 2.5 years old, SLP #2 entered the scene and by this point, I was really starting to question the process of speech therapy.

SLP #2 played with Jake like I played with him at home. She read him books, sang songs, and did cutting and pasting exercises. One of the first nursery rhymes she started with was “Five little speckled frogs, Sat on a great big log, Eating the most delicious bugs…” My child who couldn’t even say mama, just stared silently at her, big smile planted on his face, while she belted out this tune week in and week out.

Once she finally started drilling words, they did not have any rhyme or reason to them. She didn’t work on the same letter or words each week and some of the first words she introduced to him were two-syllable and not simple. This is not how you treat apraxia, or what she viewed as suspected apraxia at that time.

I pressed SLP #2 to make a diagnosis prior to age three, but she would not. Her response, which I will never forget was …

It doesn’t matter if he has x, y, or z, I’m still going to treat him the same way.

When she said this, I remember thinking, If we don’t know what it is, how in the world are we going to fix it? Fear and frustration were quickly setting in as the weeks drug on with SLP #2. I also feel like this speech therapist gave me two pieces of the worst advice I received in this journey.

The first I wrote about in a guest post when I first started blogging …

When we first started this journey, an SLP told me, “You are his mother. You are not his speech therapist. That is my job. Your job is to love and nurture him.” And for a couple of months, I took this advice, breathing a long sigh of relief that teaching him to talk wasn’t my job. 

And the second piece of advice that makes me cringe even still to this day …

He’s not talking because he just can’t. “But”, I can tell he “wants” to talk. He. Just. Can’t.

Can’t … what a discouraging word. “Can’t” is not a word that will motivate a mama. Words that will drive a mother are – Work hard and you will beat this d*#$ thing! Can Not is one step away from Will Not. Will Not means never hearing your child speak. And these words will paralyze all parties involved – SLP, parent, and student.

Jake did speech therapy with SLP #2 from March through May of 2011 at my older son’s elementary school. Her office was across town – nearly an hour drive one way – and when school was out, she did not encourage me to do speech therapy over the summer. She sent me home that summer with two folders of lessons – Three Little Bears and Five Speckled Frogs.

Why didn’t she say - I think it could be apraxia, but I’m not sure. If it is apraxia, your child will need frequent, repetitive, specialized therapy. It is going to take your son a tremendous amount of practice to say even the simplest words. You need to get help asap.

But, no, she didn’t say these words and I went home and enrolled myself in summer school with Google, majoring in apraxia of speech. I would spend the next few months educating myself and playing with my boy each and every day.

Jake made zero progress that summer.

Once school was back in and a few days before Jake’s third birthday in September, SLP #2 officially diagnosed him with apraxia. At that point, I had some education under my belt and knew I must find a better fit for us as soon as possible.

To be continued … Stay tuned for Part 2 of 3 in the next few days.

Throughout this series, feel free to chime in with your own experiences. I’d love to hear if you hit speed bumps along the way or if you were fortunate enough to find that special someone from the beginning.

Special Needs News

So far 2014 has been filled with a whirlwind of events and I have not had the time to write as much as I have wanted to. This is a season of change for us and has been filled with blessing upon blessing. I have spent the past five years in valleys and climbing mountain after mountain for Jake, but I have finally reached the peak. It feels good here; I hope I get to stay for a bit.

I will write more on what’s going on our land of apraxia, allergies, etc. in the coming weeks, but for now, I’d like to share a few important tidbits of news that are happening in the special needs community right now …

These times, they are a changing … I live in Georgia and for six years, Anna, a determined, passionate mama and her adorable daughter Ava have been trying to get an autism insurance reform bill passed. The law is known as Ava’s law and would require insurance companies to cover the many costs associated with therapies. In February, the Georgia Senate passed the bill and it will now move onto the House for approval. This bill will make Georgia the 35th state to approve autism insurance coverage and it will benefit 30,000 kids in my state who need it. Ava is now thriving and has been the poster child for autism insurance reform. She and her mama rock!!!

Tis the season for taxes. I have touched on this topic a time or two, but have never provided any details on what is and is not tax-deductible when it comes to special needs  expenses. This year I was going to try to take the medical expenses deduction and set out to add up all of Jake’s medical, therapy, and diet expenses for 2013. I also had to spend a little time with Google figuring out what the stipulations are. If you have not filed this deduction in the past, it is a great time to start a file for 2014.

The following is what I believe to be accurate based on the articles I read, but please do your own research. I am a lover of words, not numbers and tax talk.

  • Expenses must exceed 10 percent of your Adjusted Gross Income (AGI). All of your family’s medical expenses can be included. It used to be 7.5 percent, but it increased to 10 percent at the end of last year. Also, I am not 100 percent sure, but I think only the amount over 10 percent is deductible. In other words if your threshold requirement is $5,000 and your expenses were $5,500, only $500 can be deducted.
  • Therapy – All out-of-pocket expenses are deductible. I also liked that mileage to and from your therapist or doctor’s office could also be included.
  • Out of town intensive treatment – Transportation, $50/night of hotel stay, and all therapy expenses can be deducted.
  • Alternative medical treatment – Any out-of-pocket expenses for supplements, routine visits, acupuncture, etc.
  • Diet – There are many details regarding this deduction, but these were the highlights I took away:
  1.  Child has to have an allergy/intolerance and the diet has to be required.
  2. A doctor’s note verifying the diet requirement has to be included with your taxes.
  3. Organic fruits and vegetables cannot be included.
  4. The full amount of the food cannot be deducted. You count the difference between the cost of regular food vs. special food. In other words, if you buy a box of Enjoy Life Chocolate Chip Cookies at $4.25 and Chips Ahoy costs $2.25, you can count $2.00 towards your food deduction. In addition to saving receipts, you have to fill out a chart with every single food listed.

No child left behind? According to ABC News, the next court hearing in the Justina Pelletier case is coming up on March 17th. If you are not familiar with this story, Justina lives in Boston and has mitochondrial disease. Her parents lost temporary custody of her due to a difference in medical opinions. Fortunately, it looks like the tables are turning and hopefully they are going to get their daughter back to care for her as they see fit. It is a gut-wrenching story and one that needs backing by every parent in America.

An awesome apraxia giveaway … Last, Leslie Lindsay, author and blogger of “Speaking of Apraxia,” is offering a great giveaway this week. You have until Friday, March 15th at 5:00 p.m. to register for an “Apraxia Mom” necklace by Handmade Love Stories. Love this! Click here to register.

apraxia mom

Target Sound Identification App – Review and Giveaway

Lynn Carahaly, founder of the Speech-EZ apps and Foundations Developmental House (FDH), is showing us the love today by gifting one lucky reader a copy of her Target Sound Identification app.

Jake will be joining us today to show you all how it works and how it has helped him become a master at identifying the first and last sounds in words.

If you are not familiar with the Speech-EZ Apraxia Program, their website states …

This app was created for individuals with childhood apraxia of speech (CAS) and severe phonological disorders. It is the very first app specifically created for the unique needs of the child with CAS.

We began the Speech-EZ Apraxia Program in the Fall of 2012 and in May of 2013, my family and I ventured to Arizona to do a week of intensive therapy with Lynn and her group. Hand cues were heavily emphasized during these sessions and by the end of the week, in addition to improved speech skills, Jake was easily sounding out words on his own.

Before leaving FDH, I purchased another app in the Speech-EZ family – Target Sound Identification – in order to continue strengthening Jake’s phonological awareness skills.

Here is Speech-EZ’s description of this particular app  …

The Target Sound ID app develops phonological awareness, sound order sequencing skills, and auditory attention skills. This app increases the ability to break words down into smaller parts and recognize smaller parts in words. Being able to break words into smaller parts and recognize sounds in words is an important skill that is necessary for early reading and spelling skills. Target sound identification promotes literacy development as well as sound identification during speech production tasks. Memory also plays a small part in this task, as the child must internally hold onto the word in their mind while analyzing the sound in a specific position of the target word.

How does this simple, yet effective app work? Click on the following video and Jake will show you a live demo …

What do I like about the Target Sound Identification app?

  • A child cannot memorize this app; they must learn the concept. Both the cards and sounds at the bottom automatically shuffle and are always in a different order.
  • Over 350 big, colorful picture cards.
  • Hand cues can easily be incorporated by the parent, which makes it a great extension of the main Speech-EZ Apraxia Picture Sound Cards.
  • Allows progression of skills. Jake began this app by identifying the first sound, which was fairly easy for him because he already knew the hand cues with letter sounds so well. Then, he moved to identifying the last sound, which was more difficult for him. Once first and last letter sound recognition were mastered, we moved to random identification.
  • Random order promotes listening skills. In the beginning, Jake really struggled with this part of the app. But, he came to understand that he had to listen carefully and each day this skill improved.

The article “Literacy and Children with Apraxia of Speech” by Sharon Gretz on the CASANA website states, “While there is no certainty that literacy problems will or will not develop, there is research that has shown that children with spoken language problems are at higher risk for literacy related problems.”

Before this app, Jake knew his sounds well, but after a few months of using Target Sound Identification to drill phonological awareness, Jake knew his sounds upside down and inside out.

Jake is now five years old and reading introduction is going very smoothly. I believe his success is due to the following:

  • He has always had a natural love for books.
  • Early intervention. He has been in speech therapy and learning the intrinsic details of sounds since he was 27 months old.
  • Speech-EZ hand cues and apps.

Lynn Carahaly has graciously agreed to giveaway one copy of the Speech-EZ Target Identification app to one lucky reader.

To register, all of you have to do is leave a comment below or shoot me an email at tstarmom5@yahoo.com. If you post this giveaway on Twitter, Facebook, or Pinterest please note that in your comments. Doing so will earn you bonus points. (i.e.- Leaving a comment and posting on 3 social media sites would earn you 4 tosses in the hat instead of 1). Registration will close at the end of the day on Friday, February 21st.

For more information about the Speech-EZ Apraxia Program, visit www.speech-ez.com/.

Disclaimer: I purchased the Speech-EZ apps for my son. Speech-EZ provided me with a free copy of the Target Sound Identification app to offer as a giveaway on this blog. I was under no obligation to review it if I so chose and I did not receive compensation for my review. Nor was I under any obligation to write a positive review or sponsor a product giveaway. 

The Beginner’s Guide to Nutritional Testing, Diet, and Supplements

Most of us have stumbled across the go-to supplements that are supposed to help conditions like apraxia. We have heard the hype from other parents about how their child’s speech dramatically improved after one week of Nordic Naturals Fish Oil, or NutriiVeda, or SPEAK.

We have heard a handful of professionals state positives about their product and negatives about another. It is daunting to know who you can and cannot trust and which product, if any, is the right fit for your child.

I am wholeheartedly a supporter of nutritional intervention, but I also feel that it is extremely important to do some basic testing before you begin any diet or supplement program.

testing

Let me share a few examples of why I feel testing is so important …

Case #1 – Jake and Omega-3

I was so worried about omega-3 when I took Jake to his first integrative medicine appointment. He cannot take this supplement because of his fish allergy. Prior to this appointment, I spent a lot of time researching fish-free omega supplements. There are not many out there! If I did happen to stumble across one, it took time to make sure it wasn’t manufactured on shared equipment with fish oil. It took phone calls and emails to the manufacturers and reading a lot of fine print.

Needless to say, it was emotionally exhausting for me to think inside and outside the box regarding omega-3. Imagine how pleasantly surprised I was to see on his NutrEval test that his omega levels are perfect! I breathed a long sigh of relief and began putting my time, money, and mental energy where they belonged instead of chasing something that was a non-issue.

Case #2 – Jake and Vitamin E

From September through mid-December of 2012, Jake took a vitamin E supplement. When I increased the dose in December, allergy symptoms developed. Turns out, the pure form of E is made from almond oil and Jake was allergic to almonds at the time. Not good. Prior to starting this supplementation, two doctors and myself knew about this allergy because of a skin prick test, but it was an oversight. The moral of the story is … know allergies, know intolerances, and know what is in supplements.

Case #3 – Fish Oil, Gluten-Free & ADD

My friend Tricia recently had the NutrEval and the ALCAT tests run on her son who has suspected ADD. Prior to testing, she had been giving him fish oil for a few months, but had seen no results. Turns out, her son’s main issue is gluten intolerance. He is now taking a few supplements that are specific to his deficiencies along with a gluten-free diet. Addressing the diet first in this case was imperative because without taking out the offending foods, the supplements could not be properly absorbed in the gut.

Case #4 – Jake and Simple Carbohydrate Diet (SCD)

In December of 2013, I had a few tests run to determine the cause of Jake’s food allergies. At the beginning of January, I put Jake on the SCD with the hopes of healing or improving his food allergies even though I didn’t have my test results back. On Day #7 of this diet, his CDSA 2.0 stool test came back and the doctor’s office called and told me to take him off of the SCD. More on this later, but turns out this diet is not a good fit for him. The good news is, these test results showed what is causing his food allergies. We are waiting for the rest of the test results to come back before we fine tune his program and get back to healing.

Who Does Testing & How Much Does it Cost?

  • A Medical Doctor certified by the American Board of Integrative & Holistic Medicine. Click here to search for a physician in your area. We go to this type of doctor. One benefit in going this route is that insurance covers some of our cost because she is a real pediatrician. Some tests are covered by insurance and some are not. The NutrEval that we had done was not covered and it was around $700-800 and the ALCAT was $200-300. We have taken several tests that insurance covered and I paid a flat fee of $25 for all of them.
  • A DAN doctor
  • A chiropractic office with additional wellness services. I’ve recently reunited with my best friend from elementary school and she had herself and her daughters tested at a reputable chiropractor’s office. She said she paid $50 for all of her tests because insurance covered it!
  • The Great Plains Laboratory. I have recently ordered a urine amino acid test from this company and I have been very impressed with their customer service and thoroughness. They also have a great explanation of how to submit tests to insurance and their prices are very reasonable. Their website says that your results include a thirty minute phone consultation and I also plan on sending the results to our doctor to get her input. The only caveat is you must have a physician’s signature before they will run the tests. Perhaps a traditional pediatrician would consider helping out with this. I believe their Organic Acids Test (OAT) is somewhat comparable to NutrEval and according to the price sheet, the cash price is $299 and the insurance price is $599. The IgG Food Allergy Test with Candida (comparable to ALCAT) is $219 / $325.

Additional Resources:

  •  Jenny McCarthy’s Generation Rescue offers biomedical grants to families who cannot afford treatment.
  • January 30 – February 2, The Gluten Summit’s webinar “Now That You Know, Where Do You Go?” is available online and free of charge. I watched Part One back in October at the advice of Jake’s doctor and it was EXCELLENT … top-notch experts and information. According to the site, this webinar will cover the following:
  1. What tests should I take to see if I have a disorder?
  2. How do I convince my doctor to order the tests?
  3. Could it be gluten? Or dairy? Or another food triggering symptoms?
  4. When should I take the tests?
  5. How do I get them? What if I’m outside of the U.S.?
  6. How do I interpret the results?
  7. What if my results come back positive for a gluten-related disorder?

What about you, friends? Got any information you’d like to add to this post? I’d love to hear if someone out there has gone to a DAN doctor or if you got testing, etc. from another source. 

Disclaimer: All data and information provided on this site is for informational purposes only. These statements have not been evaluated by the FDA. These products are not intended to diagnose, treat, cure, or prevent any disease or disorder. Please see complete disclosure at the top of this page.

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