Have you ever had an instinct? An instinct that begins as a gnawing...Then grows into a raging burn; a burning instinct that something is wrong...
Your baby continues to get sick from the very foods he is supposed to thrive on. I did. I am a mom of a little boy just diagnosed with FPIES.
And that burning feeling now? Extinguished. My instincts? Stronger than ever. Guiding me, with my faith, as we navigate through the murky waters of our new world created by something called FPIES.
"Faith is not about everything turning out OK; Faith is about being OK no matter how things turn out."
Saturday, February 19, 2011
Our appointment at PCRCD....
We flew to New Jersey on Wednesday for a 10am appointment with Dr.J at the PCRCD on Thursday. The appointment was running behind and we didn't get in until 10:30am but she gave us our full 90min appointment. We covered a lot but do still have some questions- how does that happen? Dr.J is very sweet, kind and seems to truly want to help with the knowledge base she has about Non-IgE food Allergy.
She wanted to collect some data from his history, and also labs from his history. We started by telling Little man's story from birth, and of course that starts with an antibiotic course when he was only hours old due to my GBS+ and his quick delivery; which clues her in right away that he likely has some gut flora problems.
She discussed how newborns are susceptible to the gut flora establishment, noting that premature babies are at highest risk. I discussed with her that I have noticed that it is either C-section birth, antibiotic use, or prematurity that seems to be a very common thread among FPIES and she agrees that this is exactly it, with a strong genetic component. She was interested that I have IBS and agreed that it is possible that my breastmilk had incompletely digested proteins (because of my IBS)- especially since he seemed to be better if I took probiotics and/or enzymes (even better than eliminating what I thought were his culprits- milk, soy, wheat). She asked if I took them regularly – which I explained that I take them pretty regularly but I need to switch it up – that my body seems to get a ‘cap effect’ from them. She said that was very interesting and note-able for my individual gut flora. Response to a probiotic will tell a lot about your gut flora. Each person has their own billions of bacteria in the gut flora and responds to the environment and diet differently. There is no one way to test our gut flora as there are more strains than have been identified and also some live with air, some do not survive once exposed to oxygen so there is not reliable way to test it all. Watch for signs such as yeast overgrowth, tolerance mechanisms, response to antibiotics and probiotics are all clues for gut flora.
She suspects his gut flora is a big missing key. Once we re-establish his gut flora, it will not only provide the protective barrier and homeostasis but also support the anti-inflammatory mediators (this is a piece I was missing – I did not know that gut flora promotes anti-inflammatory mediators). She recommends he be on lactobaclli and maybe a bifida bacteria but just a SIMPLE and LOW dose- starting with single strains. This is based on his gut flora responses to foods introductions and mostly his inflammatory responses- his delayed reactions!! We discussed how he has “honeymoon periods” with foods- from the start of food introduction. She describes he is prone to delayed reactions because of his oral tolerance mechanisms- he DOES build the intolerance via inflammation because he lacks sufficient anti-inflammatory mediators (supported by good gut flora).
We went on to discuss his immediate responses to dairy based formula, and how the more I gave it up in nursing (wheat and dairy)- the more I would notice his intolerance's with reintroduction of foods (via breast milk). She confirmed this is the FPIES mechanism.
We talked about his soy intolerance, and soy challenge- she said Soy is a culprit in PI kids not because it is closely related to dairy proteins but because it is such an antigenic protein. She said she stays away from soy unless the child is already tolerating it but she never risks the possible allergy from it because of it being so antigenic; she goes right to elementals. I discussed how we tried hydrolyzed formula- Nutramagin and she explained how hydrolyzed it not broken down enough proteins for FPIES triggers and was not surprised he did not tolerate it. We discussed his reactions on elemental’s and although she notes it is rare to not tolerate an elemental- she was not surprised by it either- given his continued and worsening symptoms while on it. I described to her how he stayed vomiting on Elecare and how the vomiting slowed down some on Neocate but that he would self –restrict and she noted that “these kids are smart, they know…” (something us moms say all the time!). We discussed how I came about Hemp milk and how Dr.P at CHOP had recommended it since Little Man was almost 1yr.,that 2 weeks on hemp milk should have calmed down his inflammation enough to get a tiny menu. I discussed with her that I wanted to build a formula instead of plain hemp milk and how he reacted with dumping dehydrating diarrhea that landed him in the hospital with low blood sugar and acidosis from tapioca starch; and how his tapioca trigger was confirmed with reintroduction in a Vit.C supplement. And how at that time, a scope was done and he showed what was described to us as “inflammation looking like the gut from a malnourished child from a third world country”. She fully agreed that this was from the Neocate; and that his symptoms while on it, with these scope results would confirm the Neocate triggering his FPIES.
I also brought up his recent reaction to the multivitamin with fermented corn starch derived Vit.C and how the scope after it did not show inflammation and she said inflammation wouldn’t be there with one trigger reaction but with repeated exposures (for us, corn syrup). I talked a little about his iron deficiency and requiring transfusions but forgot to ask her what she thought iron deficiency could be attributed to as little man is not the only FPIES child struggling with maintaining adequate iron levels and my instincts say there is more to it than intake and losses. We did discuss his response to oral iron and she agreed this would have made things worse, on a sensitive or inflamed gut; and his good response to IV iron infusions.
We then discussed his villous atropy and TPN. I told her how he gained good weight on it and scope showed good gut healing from the gut rest. I also asked her what she thought about symptoms such as red rosy cheeks, hyperactivity, disturbed sleep and small facial hives- if it was possible for him to react to something in the TPN as I suspected he was (although noting that the benefit was still outweighing the negatives in this case as he needed and was responding well to the nutrients in the TPN). She agreed that T cells are everywhere- and can and do react to more than just gut ingestion's but that with it being in the blood and broken down, the chances would be slim (I said- yes, I believe we were sneaking past the gatekeepers (Tcells) and she agreed. She also complimented me on my knowledge and research- I told her I’d read her article! (Non-IgE Food Allergy).
She said it sounded like his mechanisms are very much Th1, TNF-a, and IL-17 (or was it IL-10?)....more on this in another post. Some puzzle pieces just spilled on to the floor- did you see them? I think those may still be blurry until we get the blood test results back...
She wanted to know if he was clear of IgE allergies? And he is, and I am relieved as I’ve read that that can indicate severity of outcomes (how long to outgrow). She replies that that is correct and inquires if that was SPT or RAST? Little man has had both, and all were negative for IgE at the time.
She theorizes that his condition of resistance is very much TNF-a or something like that, his condition is almost like his reaction is capillary leak….little bit more water that comes to the lungs and you get the wheezing. Oh my goodness- did she just describe the asthma/reflux cough so many of our kids experience?? Pull the trigger and it goes away, don't pull the trigger in enough time and it sets into an infection for the fluid in the lungs? Wow, another piece to the puzzle....I need to research more on that piece...
She goes on to say that steroids can be used with some of the inflammatory cascades. I replied- yes, I’ve read that but steroids are so harsh and can contribute to problems with gut flora and we already know he has issues with gut flora. To which she confirmed that steroid is good but that she doesn't like to use too much.
We then discussed Probiotics- for gut immunity. Some people benefited from single strains or the probiotics would act as their own antagonists. She is worried about finding a corn free one, and suggests checking with the company; or we may have to compound it. She goes on to say, sometimes the compounding pharmacy can be expensive, but with this type of baby it will need to be compounded.
She was interested to know if we had tried enzymes with him, since he had responded well to my milk when nursing him when I took them, but we have not because I have not found a clean one yet….which she agreed that would be difficult with his triggers. She brought up vaccines, saying the live virus vaccines (such as MMR) would not be good for him. We do not vaccinate so is not a concern for us. We talked about my 2nd son’s reaction to vaccines, and his “issues” to which she thought it sounded like a PDD as well.
She said she sees High Functioning Autism and PPD with food allergy a lot- particularly because the intolerance's affect their condition too.
We discussed the family history of the other boys’ MPI.
We then discussed Sam’s developmental milestones, noting that he is doing well for all that he has been through. She is surprised he is doing so well since he is missing micronutrients in his hemp formula and noted that the micronutrients will also affect the colonizing bacteria. (this piece I had but it wasn't in focus....still isn't clear because even though I know he needs these micronutrients, simply willing him not to react to a mulitivitamin isn't enough.
We discussed some of his reactions symptoms- his anger/irritability, etc. She said that is all normal for NFA kids because they just don’t feel good.
She asked if he had ever been on an antibiotic, to which I replied no but that I was curious what one he would tolerate anyway and she recommended Rocephin. Thankfully he has not needed one yet.
We discussed the susceptibility of the kids to get colds following reactions….noting the inflammatory markers. She agreed that they are more susceptible when reacting to a food...that is over whelms their immune systems. She goes on to say that their Immune system is a over-reacting one, which is very protective for the infection; which is good but tolerance is a problem, a homeostasis problem.
She then examined him- and we talked more about the brain-gut connection relation to ASD and FA; but didn’t go into details; as she was examining his mouth and he stuck out his tougne I remembered I wanted to ask her what she thought of the yeast connection as he tends to get a “flare” with food fails. She said there is a yeast component that is likely activated following antibiotic use or disturbed gut flora and it is related to the homeostasis in their guts, stating the homeostasis is broken. Her theory is that his problem is not yeast overgrowth but that it is the body’s over reaction. She emphasized that everyone is different. She talked about her theory that the mechanisms are the same but with environmental and genetic components altering the reactions (as she described this- she motioned in a V with her hands)- there is a ‘base’ for everyone and then everyone’s path is very individualized is her theory. She advocates that the very difficult child just needs to be individualized for treatments.
If we correct his gut flora, we will get the control and homeostasis of his yeast? Yes, homeostasis with the probiotics is very good,…..lactobacilli strain.
We then spoke about the study and consent and what she is looking at (cytokines, TNF-a and response to gut flora), that she will need to draw blood and we will get results in about 4weeks time and she will communicate results to me.
Immune response or impaired gut- which comes first? (her answer was difficult to understand and I don’t remember what she said!) But she thinks his issues are linked to his gut flora. If we can correct his gut flora, we can downgrade his over-reactive immune responses.
We talked about research and how the ARI is funding her current research study because it is about ASD with food allergy compared to ASD without food allergy and then the control of non ASD with food allergy. She noted she would love to do a study on just FPIES and is excited to hear about the CHOP fund and be in communication with Fallon about it. I commended her for the research she has done for the ASD community.
TNF-a….she discussed how it is not just TNF-a but the balance between the TNF-a, TGF-b and the commensural flora, how does it all react together? It is a very fine tuning with these kids, very individualized. She kept emphasizing the homeostasis and the individualization.
She thinks Little Man's case has several hits- with immune system, MPI in siblings, antibiotics at birth, genetics.
I asked about rotation diet for future trials, would he benefit? Can we teach the body tolerance mechanisms? It may work once we get the probiotic factor and re-establish his gut flora homeostasis…again, emphasized that for our Little Man it is important to do a single strain at first and get it compounded if you need to to avoid corn.
Also, he may benefit from oral steroid – With his tolerances mechanisms, and his reactions to “non-specific components”, he may have trouble tolerating probiotic is her suspicion so he may need an oral steroid to be able to tolerate the probiotic and move forward (NOT long term or heavy dosages).
So, for Little man, she recommended to start with lactobacilli (as this is generally well tolerated)-in VERY small amounts and build up; then try to add a biffidi strain if he tolerates lactobacilli and consider oral steroid granules in small amounts if unable to tolerate Probiotic. She notes, the multiple strains is really more for the IBD patient, they are very different and more TGF-b and she does not think he will tolerate the higher strain probiotics.
We need to see how he does first. Then get test results and go from there. She made and gave me copies of the info on the study. This is what it reads: Title of the Study: "T cell polarization and candida reactivity in autistic children with food allergy. Why is this study being done" Autism Spectrum Disorder (ASD) is a complex disease affecting development of speech and is usually diagnosed when children are young. Many ASD children suffer from other medical conditions. Among them, gut symptoms caused by delayed type food allergy and sleep problems are most frequently seen. Treating such ASD children with food allergy (FA), we observed that these ASD children with FA do not respond well to avoidance of causative food as compared to non-ASD children with FA. In this study, we want to address why ASD children with FA do not get better after avoiding problematic food like other non-ASD children with FA. For that purpose we will check whether body's immune responses to normally present gut bacteria/fungi are altered in these ASD children with FA, and if these conditions are preventing their recovery from food allergy." I posted information on this study in a previous post, from the ARI website.
We talked a little about anti-yeast diets and if they will work. She does not feel the yeast is the root of the problem for our kids and so it will not be enough. That diets such as GAPS are designed to wipe the slate clean and re-establish gut flora; but an elemental diet should also wipe the slate clean. We didn't go into it further as our appointment time was ending.
We talked about how this is falling on Allergists to diagnosis and treat but difficult for them with some cases as they are treating it like typical food allergy when it really is multi dimensional; as well as individualized.
This is as much as I can remember from the appointment. There are more gaps to fill in from the information as presented here but that will have to come at a later time. It was nice to get confirmation to some of my thoughts on our FPIES. The things I learned that I think are big links to his missing puzzle pieces are:
1. The need for small doses of single strains of probiotic, starting with lactobacilli and maybe adding in bifidi bacteria strain if lactobacilli is tolerated.
2. That gut flora plays a role in the anti-inflammatory mediators
3. That he may need oral steroids to achieve enough anti-inflammatory mediators for oral tolerance if he does not tolerate a probiotic first.
4. That his oral tolerance/delayed reactions are a good sign that his body has developed oral tolerances, but that he lacks enough anti-inflammatory mechanisms to help the body continue the oral tolerance (Th3)
5. Capillary leak- a definition for what his body experiences with the food fail, shock (delayed shock) and how it is connected to his CBC changes as well as his lung/wheezing/asthma response because of it.
6. That he may benefit from enzymes and rotation diet….but nothing until we establish a homeostasis in his gut flora.
The blood tests will fill in more gaps when they come in….so we begin by implementing the Probiotic (as soon as I find a single strain, corn/soy/dairy/rice free one), and see how he tolerates it.....stay tuned!