Tuesday, June 4, 2013

Finding our way home

We have returned to Portland. Initially the plan was to make a four-month trip up here for the summer and to have our second baby surrounded by our network of family and friends. But this spring it became more and more obvious that LA was not a good fit for Ellie and probably never would be. I never imagined a three-year-old could be so vocal about her needs and opinions, but ours is, and just as we have been doing since her first day on Earth, we listened.

Ellie would say things like, “this is not my country. Portland is my country.” And, “California is too crazy. I don’t want to live in California.” Every day.

So when a promotion came up in Ian’s company, which would require being in the Portland office, he jumped at it and he got it. Suddenly our trip became a move and I, at eight months pregnant, packed us up and off we went.

But as with any story there are a hundred ways to tell it, and another version of the story is that we returned to Portland for Ellie’s health.

We never figured out how to access food in LA that was as good as what we had access to in Portland, both at our local health food store and through our food buying club. The water quality in LA was terrible. The air quality was dubious. The abundant access to nature, which we had taken for granted in Portland, was nearly nonexistent in our day-to-day life in LA. But worst of all was the healthcare.

It took leaving our extensive network of healthcare professionals for us to really see how essential all those doctors and alternative practitioners were to Ellie’s health (and my own). And recreating that network in a new city was nearly impossible. I imagine that if I spent the next three years vetting doctors in LA I would likely end up with an equally excellent team, but I didn’t have three years to spend on such a project. Ellie needs a team now. She needs doctors who understand her complex health issues, and I need those doctors to be the type who believe what mama has to say. This is not easy to find.

So it was with all of this and much, much more weighing on our minds that Ian and I made the decision to pull the plug on our LA experiment long before we really got a chance to see it through.

And after being back in Portland for only one month I can say it was totally the right decision.

Ellie has had a terrible, terrible time lately. It all started when we ran out of her Ketotifen in December and really we haven’t regained our ground since. She is struggling regularly with symptoms like tummy aches, headaches, joint pain, dizziness and worst of all seems to be a surge in urinary symptoms that have made the whole family miserable. She is wetting her pants, refusing to pee, having the urge to pee and then not being able to, saying it hurts when she pees, etc. All of this is tied to food, but what foods precisely, has eluded me. I suspect salicylates, but can't be certain.

Since we’ve been back I’ve been taking Ellie on a reunion tour to see all her doctors. First was a visit with her naturopath, who is her primary care doctor. She ordered a ton of blood work, some of which was requested by our nutritionist, who we had plans to see a few weeks later. Our naturopath appointment touched on everything I’ve written about and more, but focused quite a bit on Ellie’s struggle in LA and the doc suggesting the possibility that she has sensory processing disorder. The fact that she got so overwhelmed by the lights, the noise, the crowdedness and the busyness of LA concerned our doc. Apparently it’s not normal for a 3-year-old to refuse to go shopping at Whole Foods because it’s “too crazy” there. She recommended evaluation by an occupational therapist. I told her I’d think about it.

Next up was a visit with Ellie’s allergist, who I am convinced is a genius. She is the one who originally prescribed Ketotifen. We talked at length about how Ketotifen seemed like it was a wonder drug, and then after being without it for such a long time this winter, Ellie is still on a more restricted diet that she was last fall. We just can’t seem to regain the ground we lost, and her symptoms are much worse. The doc recommended doubling the dose, and informed me that we can now get Ketotifen from a local compounding pharmacy and get it covered by insurance. Such great news!

The allergist suggested the possibility that Ellie is suffering from something called interstitial cystitis, and said she’s had patients for whom the condition is triggered by consuming foods they are sensitive to. I looked it up online when I got home and the symptoms are dead-on. The condition is also referred to as “painful bladder syndrome” and involves symptoms like urinary frequency and urgency, inability to control the bladder, pain while peeing, etc. She referred us to see a pediatric urologist – supposedly the best in the city – who of course we have to wait six weeks to see.

After that we saw Ellie’s chiropractor, who also received my brief overview of how the past six months have gone, including all the symptoms that are worst right now. After some cranial sacral work and some back adjustments, she told me that Ellie’s urinary symptoms could be resolved with chiropractic adjustments and that Ellie’s low back and pelvis were severely jammed up. Those areas are associated with the health of the kidneys and bladder. I’m always a little doubtful at those appointments (in spite of that chiropractor doing amazing things for Ellie in the past two and a half years) and yet in the hour after the appointment Ellie had two huge pees, which she was able to tell me she needed on time, so I stopped doubting and made a follow-up appointment.

The final stop on the reunion tour was Ellie’s nutritionist, who, again, I am convinced is a genius. It was like seeing an old friend. I would say that of anyone on this planet, this woman knows the most about Ellie’s story and what we’ve been through with her. She knows how hard we’ve worked to get her healthy and she also knows how painful this process has been. Our nutritionist showed us the blood work results. It was one of those moments in your life when you can actually feel the metaphorical clouds parting and the sun shining through. There was real information on those pages. About Ellie. About what was happening in her body.

The nutritionist had asked for a bunch of testing to take a look at Ellie’s immune markers. She told us later that she has had huge difficulty getting doctors to order these tests for kids like Ellie and I offered up a little prayer of thanks that ours had been willing. I’m going to offer up a disclaimer here, because I am no scientist and I am not totally sure I grasped all of the science she explained, but here is how I heard it.

The blood work took a look at Ellie’s primary, complementary and adaptive immune systems. There were at least two markers that were very out of balance. The first we talked about was the relationship between the C4 protein and the C8 protein, which are part of the adaptive immune system. The C4 protein is responsible for tagging invaders, like viruses, so other parts of the immune system can come in and attack those cells and kill them. Sort of like when you’re moving and you go through the house putting post-it notes on everything that needs to go on the moving truck. The trouble with C4 is that it is not super smart about differentiating between true invaders and other things that are in the blood system but shouldn’t be, like food. And if a person has a leaky gut, food molecules are constantly getting into their bloodstream. Well Ellie’s C4 is extremely elevated. Which means there is a whole army of these proteins circulating in her blood stream tagging the crap out of food molecules, alerting her body that they need to be taken out.

This explains two things to me 1) how it is that Ellie is sensitive to SO MANY foods and 2) how it is that the foods she’s reacting to seems to always be shifting. Just when I think I’ve established that a food is safe for her, she suddenly seems to be reacting to it. And because she’s on such a limited diet, she gets exposed to foods over and over again. Like right now strawberries seem to be one of her few safe fruits, But if she eats strawberries daily they will start to become a problem. I know this because Ellie ate blueberries daily for a very long time, and now she gets a rash around her mouth and a tummy ache when she eats them. Blueberries got tagged with the post-it notes.

The other marker that was elevated was Ellie’s lymphocytes. Lymphocytes come in three forms: T cells, B cells and natural killer cells. Their job is to identify “non-self” cells in the body and to attack them. Once the cells identify the invaders, they “activate” a response in the body. Interestingly, according to Wikipedia:

“Following activation, B cells and T cells leave a lasting legacy of the antigens they have encountered, in the form of memory cells. Throughout the lifetime of an animal these memory cells will “remember” each specific pathogen encountered, and are able to mount a strong and rapid response if the pathogen is detected again.”

This is why immunizations are effective. We get exposed to a small amount of a virus, our body mounts a response, and a memory is formed in our body that the virus is a bad guy and will be able to more effectively attack it in the future. So once Ellie’s body identifies avocado as an invader, for example, there is a cellular memory of her body’s negative response to the avocado. And that’s how you develop an allergy.

The fact that Ellie had a compromised gut at five months old (both because five-month-olds’ guts are inherently leaky, and because she inherited gut flora problems from me) and her first food was avocado and she ate avocado on a daily basis for months – and then when you add in what we now know about how her immune system functions – voila, you’ve got a strong sensitivity/allergy to avocado.

So, what do we do with all this information? How do Ian and I, as Ellie’s chief medical officers, synthesize all this information? Does she really need to see an occupational therapist to work on how overwhelmed she gets by our modern world? Or would she feel less overwhelmed if she weren’t constantly reacting to foods? Is doubling her medication going to be enough? Should our priority be on chiropractic work and getting her spine back in good alignment? Should our focus be on the urinary symptoms and getting her diagnosed, via multiple invasive tests, for interstitial cystitis? Or is that just a symptom of a larger problem? Does the real answer lie in her immune system? And how on earth do a couple of lay people like us heal an immune system on overdrive? Or is it all of these things working in concert with each other? Is each piece as critical as the other?

(And, always on my mind these days, how do I tackle all this when I am due to have a baby in seven short days?)

Our nutritionist has laid out a protocol for us to follow, with the intention of continuing to heal Ellie’s gut while also bringing her overactive immune system into balance. She has treated kids with symptoms and blood work just like Ellie’s and has seen results with this protocol she’s developed. So I am putting myself in her hands. Just like I embraced Ketotifen and modern pharmaceuticals last year, this year I embrace this much more alternative path (while not abandoning the Ketotifen).

Did you ever play the game Whack-a-Mole at Chuck E. Cheese as a kid? I loved that game and yet I was so infuriated by that game. Every time I had successfully whacked the mole down into his hole, there he was, popping out of another hole! I could never get him! There was something about that challenge that enraged and delighted me at the same time. And I feel like Ellie’s health is like a giant game of Whack-a-Mole. Once we beat one symptom, another pops up. This time last year we were in the throes of trying to find out if Ellie had Lupus because of the God-awful joint pain she was experiencing. This year it’s urinary symptoms that have become our focus. But it all comes down to the microscopic cells in her body, and the fact that they are attacking the foods she eats. If we can somehow encourage those cells to simmer down, and behave normally, maybe we can win this game.


  1. Andrea Nakayama shared your blog with me and I am so excited to look back and read about your journey, which seems so similar to what we are going through with both of our children.
    Our son, Jonathan, now 3, had hives the day he was born, and has a rather long list of foods he is allergic to, plus 2 or 3 bouts of diarrhea a day. Our daughter, Aurora, is 16 months and has an even longer list of foods she cannot have, and Precocious Puberty to top it off. I am definitely starting to have some significant problems with adrenal fatigue and hypothyroidism. I think I also have some trouble with fructose malabsorbption, and my own food allergies have expanded since I have had to cut out all of the foods my kids are allergic to from my diet to nurse my kiddos.
    We eat a very strict paleo/autoimmune diet, which seems to be just enough to keep us afloat. We have experimented a bit with GAPS, but after more than 2 years on strict GAPS my MIL is still having really huge medical problems, so I know it is not a cure-all.
    I nursed my son for 20 months, until I was put on bed rest in my sixth month of pregnancy with my daughter. She is still going strong, which I am so thankful for, because I know that my breastmilk is definitely filling in the nutritional gaps she is not getting from food right now.
    Unfortunately, we are one of those families where the doctors haven't been as supportive in our work with Andrea, refusing to do any of the testing Andrea has requested. Soo frustrating! When you know that there is something wrong and you as a parent feel so strongly that it is worth it to investigate any avenue for healing and you cannot get the support you need to help.
    I have blogged about my journey with the kids at: http://leppard.com/HoneysMusings/ (although lately it is way on the backburner, because I am survival mode again.)

  2. Hi LovelyHoney! I am so sorry for the super delayed response! I have been 1000% focused on my kiddos since the new baby arrived.

    I am so glad Andrea referred you to this blog! It sounds like we have a ton in common. I can relate to so much of your experience - nursing a child with allergies and feeling like it's your duty to help "fill in the gaps" in their diet, struggling with your own health issues of adrenal fatigue and hypothyroidism after the stress of caring for a child with severe allergies, feeling like you're being failed by healthcare providers who won't think outside the box or order the tests you feel you need, not being sure what healing diet, if any, is going to truly help your family - I get it!!!

    For what it's worth, I do think Ellie got a lot out of the GAPS experience. What I wish is that I had realized we needed to move on from it a lot sooner than we did. I think it was helpful and then, in the long run, ultimately detrimental to her health. But when your child is still not healthy it's hard to know when to make a change.

    I will be keeping you in my thoughts, mama. From where I stand, I feel I can say that it really does get better.


  3. Hi Annie! Congratulations on the baby boy! So exciting! I am sorry you are still going through so much with Ellie's allergies, I was wondering if you got thyroid labs done? Do you know what her TSH is? Because it seems for adults with hypothyroidism they can react to just about everything and by eating balanced meals with protein, fat and sugar and sometimes very frequently to balance blood sugar and support thyroid they are able to get past the food allergies and not have issues with food. May be a different angle to look at for her. Good luck!

  4. Hi Janelle,

    Thanks for your comment! We have never looked at Ellie's thyroid ... that's an interesting question. We've tried just about everything else, though LOL! We do definitely work very hard to balance blood sugar throughout the day as I believe that's a key to good health - it certainly makes all the difference for me. Thanks for your suggestions!