Jake's Journey with Apraxia

And the Friends We Met Along the Way

A couple of weeks ago I had a consult with Jake’s allergist.

It was hard for me to put myself out there and discuss histamine intolerance and syndrome of allergy, apraxia, and malabsorption with him because they are not recognized as “official” conditions in the United States. We’ve been seeing Jake’s allergist since he was two, but I’ve never fessed up he’s off gluten, casein, and as of last year, foods with high histamine levels.

So, I swallowed my fear and spoke from the heart.

Guess what?!? He believes histamine intolerance is a legit condition! Here I was fully armed with the latest research our nutritionist from Canada provided me with and I didn’t even have to use it. He offered up a list of high-histamine foods and asked if I knew which medications increase histamine in the body. He said it’s not something I need to necessarily avoid if Jake needs medical attention, but something to be mindful of and to make doctors aware of.

I also gave him a copy of the Morris-Agin allergy, apraxia malabsorption study and this Vimeo video and he was “very interested” … yes, he said those exact words! I shared Jake was not eating gluten and casein and even got brave and told him about the scary laughing story! He didn’t act like I was crazy, didn’t roll his eyes, didn’t discount my stories … he listened and treated me with total, complete respect.

I passed a church sign on the way to the appointment that said, “Whatever is over your head is under God’s feet.” This became my mantra for the day and having the doctor’s reassurance that I am doing the best thing for Jake left me feeling much better.

My purpose in the allergist consultation was to discuss Jake’s safety in getting two cavities filled, which is why I shared our complete story with him. I am afraid he will have an allergic reaction to the numbing med, but he calmed my anxiety and said that reactions are extremely rare since dentists stopped using novocaine.

SO, I made an appointment with the pediatric dentist and went through a condensed version of my story with him. He also said not to worry especially since Jake will not have to be sedated. Anesthesia promotes histamine in the body, but general numbing meds do not.

But it wasn’t all good news … he said Jake’s cavities are so bad they will have to be drilled out and then have stainless steel crowns placed over them.

As if I haven’t over-analyzed this situation enough, yesterday I had a second opinion appointment with a dentist a friend recommended. The fact that the first dentist was booked for the next four weeks when he works full-time concerned me a bit. That’s a heck of a lot of cavities he’s filling. (And a lot of insurance dollars padding his wallet).

The second-opinion dentist took another set of x-rays and *surprise* does not think stainless steel crowns are medically necessary. Yay! Both cavities are in the corner of the tooth and are not touching the nerve.

The moral of this story is: Speak the truth, even if you are afraid. Second, no matter who is analyzing your child, an opinion is an opinion. Period. Everyone’s got their own educated guess and it is beneficial to seek out another perspective if something isn’t sitting right with you.

I’ve never discussed trips to the dentist on the blog before. If Jake was nonverbal and four, I would’ve REALLY been out of my mind!

If you have any personal dentist stories, please share in the comments for other moms out there who may be going through a similar situation.


3 thoughts on “Opinions … Everyone’s Got One

  1. HLD says:

    Good for you to question first dentist! My experience is having a DDD child (epilepsy & severe apraxia) w/the insurance that goes w/it, dentists find all sorts of things that “need to be done”. The last pediatric dentist that accepts his insurance said he had all sorts of cavities and TOLD me ( no discussion, because HE knows what’s best, right?) my son would have to be put under and have all these cavities filled, etc… I took my son to the dentist my husband & I were using, paid cash and it was a totally different story. He had ONE cavity in a baby tooth and dentist said, “Why fill it if it isn’t bothering him?”. He’s had work done w/local anesthesia and no problems. BTW, I don’t let them do fluoride due to his epilepsy (it is a neuro-toxin) and some dentists & hygenists get irritated w/that. Bottom line, who knows your child better than you? And in regard to being worried telling doctors things: yes! A large percentage think you (Mom) are whacked. I was indirectly accused of Munchausers( sp) trying to explain my son’s seizures to a doctor once, because they don’t fit the typical mold and are non-responsive to meds. I admire your persistence in standing up and doing the right thing for Jake no matter what anyone says.

    1. Tori says:

      Thanks for sharing your experience! Very interesting! Jake’s two cavities are not hurting him either. That was the first thing the second-opinion dentist asked. And thanks for bringing up fluoride. That’s a whole other blog post! lol. I appreciate your kind words. It helps as you know, to know you’re not alone in this battle – that there are others out there going through the same thing.

  2. Naomi Ojeda says:

    It’s always good to see your posts! Our experience was better than expected. I was really worried about the local anesthesia and a possibility of getting a clown. It turned out DS didn’t need a clown and did fine with anesthesia. I consulted with Dr.Yasko about the anesthesia and she said not to worry because his B12 level has been sufficient based on the recent tests (We’ve been working with Dr.Yasko for the past 2 years or so) DS only got 1/3 of the anesthesia and was still ok. (it makes me wonder what if he’s gotten a full dose? maybe they give too much?)

    Just like the other poster, we also don’t get Fluoride treatment for the kids. Dentist office has no problem with it.

    About the integrative doctor, we stopped seeing her for the same reason. It’s too bad because I really like Dr.B …..

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