Friday, March 8, 2013

Knowledge is Power...

Or is it?  What purpose does knowledge serve when you lack a treatment protocol for an existing chronic condition such as FPIES and then another alarming discovery rears its ugly head?  Oh, where do I even start?  We took a break (for the better part of the last year) from doctor visits and lab tests after learning Brendan still has FPIES to rice.  We accepted that FPIES would remain a big part of our everyday living, and resolved to focus on successes such as the addition of dairy instead.  Nothing more could be done for Brendan's FPIES so why not take a break and just be? 

Fast forward to January of this year.  Yes, stupid me, against my better judgement, I gave in to the hype about this year's flu season and had Brendan immunized for influenza for the first time.  Big mistake.  After the vaccine, he began stimming and stuttering more than usual.  I had already planned to take him back to our naturopath to have his vitamin D and iron levels checked but the sensory issues made me move a little faster.  I have always felt in my gut that although Brendan is tolerating some foods, he must still be malabsorbing on some level.  It is hard to pinpoint especially since he does not show gut inflammation via standardized tests.  After discussing my concerns with our naturopath, she ordered tests to check his vitamin D, iron, heavy metals, and something called an MTHFR test.  MTHFR is a gene which produces an enzyme (also called MTHFR) which supports methylation.  For example, a person consumes folic acid and MTHFR is responsible for ultimately converting it to L-methylfolate.  MTHFR has more than 50 gene variants and there are a few common ones doctors test for such as C677T and A1298C.  Some naturopathic doctors perform the test when symptoms of ADD and autism are present.  Brendan previously had biochemical genetic testing performed at our local hospital in hopes of identifying a genetic abnormality associated with his FPIES but the MTHFR test was not included.  Long story short, the MTHFR test identified a single mutation of C677T for Brendan.  What does this mean?  I am stumped at this point because I am just learning about MTHFR.  It is an enzyme deficiency prompted by an MTHFR genetic mutation.  What I do know is this is another diagnosis with little research and no standardized treatment protocol.  Typically, NDs recommend methyl B12 injections in order to support methylation.  My concern is Brendan has other issues such as high levels of aluminum which may need to be addressed first as this can be one of the side effects of an MTHFR deficiency.  The body loses the ability to detoxify metals, gluten, and other toxins which in turn means Brendan is not a candidate for immunizations as they contain aluminum and other metals.  Preservative free immunizations are an option but not high on my priority list at this time.  Additionally, patients with MTHFR deficiency are told to avoid nitrous oxide, fish oil, sulfates, synthetic forms of folic acid (found in processed foods and supplements), certain antibiotics, and dairy for various reasons.  

Back to Brendan's test results...aside from the MTHFR mutation/deficiency and high serum aluminum level, his glutathione level (also can be MTHFR related) and his red blood cell count is low.  Maybe I'm reaching but is it possible that Brendan's FPIES is related somewhat to MTHFR?  If MTHFR enzyme deficiency inhibits the proper processing of folic acid etc. and ridding the body of toxins, wouldn't it make sense that immune disorders and inflammatory bowel disease could be a resulting symptom/side effect?   It seems to me genetic issues such as MTHFR set the stage for a predisposition and/or heightened sensitivity to things like adjuvents in immunizations and food intolerances...especially when foods are processed and riddled with chemicals.  I suppose this is the reason I am reading about GAPS and Paleo dietary recommendations for MTHFR patients.  Brendan is already following GAPS/Paleo with the exception of dairy and consumes a crazy amount of berries which also contain naturally occuring folate.  He avoids gluten and takes a probiotic supplement along with a bioavailable form of vitamin D.  I suppose the next step is to request more in depth methylation testing so that we can identify any other genetic mutations before deciding on methyl B12 injections since not everyone is a responder to the injections and if other mutations are present, B12 injections could do more harm than good.  We will also revisit with Brendan's hematologist so that we may address the low red blood cell count/anemia again. 

Meanwhile, I am desperate to find anyone else who has had their FPIES child tested for MTHFR.  Gut healing is recommended before MTHFR treatment begins but how do you facilitate that with a chronic FPIES kid whose condition has not resolved with probiotics or special diets?  Good grief, Brendan still has diarrhea daily and has never had a formed bowel movement.  I would like to try eliminating dairy from his diet to see if things improve but I hesitate for two reasons.  First, he had the diarrhea and other issues long before dairy and second, dairy is a protein source he depends on.  I can switch him back to almond milk but he would lose foods such as yogurt, cheese and sour cream.  Lots to think about and even more to research. 

18 comments:

  1. My daughter has FPIES too and would love to help you in any way I can;
    please email me more at cr-miller@hotmail.com

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  2. Just reading over a few more of your posts. Not sure what his triggers are, but a good yogurt that will help the gut heal is yo baby vanilla. There is no added cornstarch like mosts yogurts contain. Try that 1-2 times a day or even up to 3 and you should see better results in a few days. I have found that with milk products as with nursing, it depends what the cows eat too. So brands in milk I have only found one Promise Land. And cheeses good are kraft and butter good was land o lakes. If you look close there are some cheeses and even veggies that say they are made in a facility with soy such as walmart brand. And soy is in almost everything as I'm sure you have found. My thoughts are that FPIES never really goes away; as I had some things too growing up later in life and being on the diet feels better too. Its hard b/c not all these things show up on testing.

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  3. Hi, I appreciate your suggestions. Brendan is on a broad spectrum probiotic containing over 15 strains of good bacteria. This has a higher potency than consuming yogurt (which he also does). He has also tried the GAPS diet for gut healing. Unfortunately, he has not responded to either of those treatments. I wrote this post because we have been unsuccessful with any diets and/or supplements thus far for gut healing. He has now been diagnosed with another genetic condition which I believe plays a big role in his chronic FPIES. I agree with you that sometimes FPIES never really goes away. I also have chronic intestinal issues. That said, I am looking for a doctor or other parents who are dealing with MTHFR deficiency and how they dealt with gut healing issues vs. MTHFR treatment which has the potential to make FPIES symptoms worse. I think if more families did MTHFR and other genetic testing, we would begin to see the genetic link to FPIES. Thanks again for reading and good luck to you and your daughter too!

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  4. Thanks! Just be careful what is in the broad spectrum probiotic. If it is a pill or meds, most have ingredients that these kiddos can't intake or are made in a facility with such products. That's why we use that one yogurt; haven't found anything else. what brand do you use of probiotic? Just looking over the gaps diet and not sure a lot of those foods would be considered gut healing. I know there are a lot on there that are off our list. If he also has allergies, there are cross reactivity to foods. Maybe I can help in some way, let me know.

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  5. Thanks, we use Therbiotic Complete by Klaire Labs for the reasons you stated. :) I know GAPS has helped some FPIES kids but not mine. He has no other respiratory or IgE allergies, just the FPIES. We are meeting with his doctor next week to do additional methylation testing and checking his homocysteine levels since we now need to treat not only the FPIES but more importantly the MTHFR issue which is on a genetic/methylation scale and could be aggravating his FPIES. We've stepped into a whole other ball game. Sigh.

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  6. I know its not the best tasting vitamin, but you can also try enfamil polyvisol w/iron as an option too for more iron. the oron also helps harden the stools too.

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  7. We can't do synthetic vitamins such as Poly Vi Sol. It's not as bioavailable as other whole food supplements and it would aggravate Brendan's gut more. That is why we bypassed the gut previously with IV iron. I don't think we will achieve normal stools until we address the larger issues. Diet and supplementation have not improved his stools so far.

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  8. What foods can he eat? Maybe part of the yogurt working isn't just the probiotics, but also the thickening agent. What type of yogurt does he eat? Was he on the probiotics prior to the milk introduction? Maybe there is a small amount of something still bothering him-maybe the casing for the vitamin. I know the worst was when we tried peaches and my daughter had diarrhea for a month. While some foods aren't allergies the GI dr said that some promote more water to the intestines such as this or other fruits.

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  9. He has been on probiotics since he was an infant. He had these problems prior to dairy when he was on breast milk...until age 3 and a half roughly. In his case, yogurt is not potent enough, he eats Greek yogurt to avoid all the extra sugar in regular yogurt. His problems are likely bigger than just a food irritating him these days. Those are just symptoms, we are trying to get to the root cause. He has more going on which is contributing to his FPIES. We've recently identified that which is why we are having further testing done. MTHFR prevents you from ridding the body of toxins...even toxins in food. We feel this is definitely not helping his FPIES.

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  10. check out this site http://mthfr.net/mthfr-c677t-mutation-basic-protocol/2012/02/24/

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  11. Yes, that's a good one I've been referencing as well as the posts on the MTHFR Facebook pages. Thanks!

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  12. If you don't mind me asking, I would like to know what foods your son can have and can't. I am trying to research what foods FPIES kids have in common and reactions too and look for connections. It has been interesting so far with the added insite of the gene mutations, their origins, and such. Thank you for your insight!

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  13. Sure, I'll email you so we can discuss more. There is a mom who put together an FPIES food survey a few years ago since we were all curious about the correlation and hoping to find a link. I'll send you the survey results in email too. IMO, due to genetics and individual biochemical makeup, each child will react differently to foods so that is probably why the trigger foods vary so much. I'll try to email you before week's end. Chat soon...

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  14. I have kept your testing in the back of my mind and was wondering if you found out any more on this? Since we talked a bit back my other daughter has now reacted to all sorts of things and is mostly effecting her skin. The biggest thing positive was cobalt-which is in vit. b12. Common other foods containing it is milk, cheeses and seafood. So with that said it is very interesting about this mutation. Wondering how that affects different people and if more should get tested for it? and then what then for them? How are you guys doing?

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  15. Hey! I found your blog searching for research on FPIES lol. I have a 20 mth old little boy with FPIES whom we affectionately call Mighty Mouse due to the amount of medical crap he's had to endure lol. I haven't gotten into this aspect, but we have a geneticist appointment next month, and I will be sure to discuss this with her. I think we're slowly starting to piece things together. I'm actually compound hetero, so I have a copy of both (lovely, but as far as methylation (if you look at a panel of snps) I'm a wreck. The question is...How many did I pass to my son and did he get anything from his Dad? I know he at least got 1 because that's how it works, but I don't know exactly what his gene mutations are. I'll be interested to find out if you learn anymore :)

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  16. Sarah, I haven't checked my blog in months...had a baby in June...well, you know how that goes ha ha! Anyway, are you the same Sarah on the MTHFR threads on Facebook's FPIES group? I'm glad you commented here because I'd love to exchange notes! ;). Feel free to ping me on FB or email brendainc@hotmail.com.

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  17. Hey there Anonymous (sorry I don't have your name). We are good...yes I've learned a lot more and still learning! Feel free to email me if you'd like to chat again. Yes, I think all babies should be tested for this because it can affect so many things. We had my baby tested shortly after birth and making different medical choices based on his susceptibility to things because of MTHFR. He also has FPIES like his big brother.

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  18. Please talk with you naturopath about prescribing 5-methyltetrahydrofolate which will by-pass the metabolic step that is missing from the MTHFR mutation.
    A concerned pediatrician

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