Last week we went to a new Allergy/Immunology specialist.
It had occurred to me at one point recently that perhaps the kids don’t have FPIES at all. After all, there is no blood test or imaging study that can confirm or diagnose FPIES. To the contrary, FPIES is more of a diagnosis of exclusion. Children with the constellation of symptoms that LittleM and LittleR have get tested for other issues and in the absence of real answers…FPIES. That being said, we didn’t really go down that path. For the first many months of the twin’s lives we were told that there was really nothing wrong. It took weeks for anyone to realize that they were milk and soy protein intolerant, but we were told that this was common and nothing to worry about – that they would grow out of it without incident. At 6 months when we began to feed them solid foods we started to learn how wrong they were. Actually it didn’t take that long, we just didn’t know it. After putting them on the “safe” formulas we saw increased reflux and vomiting, delayed gastric emptying, and other strange symptoms like gagging and choking. The kids didn’t tolerate the “safe” formulas either. We finally landed on one formula that they both seemed to do alright with. The doctors told us that this medical formula was a cure for the condition, and we believed them – but over time we have found that this is not a cure. No, this is a band aid.
Ok, back to the present. The allergy/immunology specialist that we went to see was not really all that interested in looking into the kids immunology, but she agreed to do some studies just the same. I told her that I was concerned that since I had been the one to find the diagnosis of FPIES originally perhaps the doctors agreeing with the diagnosis and not doing much to rule out immunological issues was actually a mistake – I was worried that perhaps we had missed something. What if they had a recognized immunodeficiency with the FPIES diagnosis? Well, the appointment was awful. I left there feeling defeated and confused. I just KNEW that she was missing the mark. In any event she concurred with the diagnosis of FPIES and did some blood work to be sure the immune system was ok.
Today we went to a neurological chiropractor. This was very interesting. LittleM has a number of strange symptoms involving her entire body really, but only on one side. She has uneven pupils, tongue weakness (in addition to her dysphasia), left toricollis at birth, and tightness in her left abdomen that when released improves her constipation. I have so many questions about what else isn’t working on her left. Can she hear and see equally? Is her GI tract sluggish on only one side? We can’t know the answers to these questions, at least not now.
The conversation with the Dr. Chris was so refreshing. This guy could actually carry on an FPIES conversation with me. Not only was he knowledge able on the “alternative” side of the conversation (not all that surprising from a chiro) but he was right there with the traditional medicine of FPIES. I am not sure how familiar he was with FPIES by name, but he was well versed in the idea of cell mediated allergies and even talked about the T-cell involvement in this kind of allergy. This is MUCH more than I expected!!
I was so relieved to hear him say – if their immune system can’t even handle food proteins how is it supposed to handle common issues like colds or vaccines. YES! This is what I have been asking all of our doctors. While some FPIES children’s immune systems are so over-sensitized they efficiently fight off every germ AND protein, LittleM and LittleR seem to not know when to fight. Their systems fight food, but don’t do so well with germs. An illness that lasts 7 days for our nieces and nephews will last weeks or even months for LittleM and LittleR. The other thing that was refreshing to hear Dr. Chris say was that kids like these are on a crash course headed for autoimmune disorder. No I don’t find that truth to be refreshing – what is refreshing however, is that he recognizes this truth. Unbelievably, most MDs do not. This leaves the FPIES community in an impossible predicament as it forces us to constantly butt up against the establishment of traditional medicine. It forces us to have to over-advocate, and this is a dangerous place to put a parent in. We can understand a great deal through research and experience, but we are still parents – lay people as related to medicine. We cannot possible know how to exhaust all possibilities. We are constantly put in the position of advocating for our children often AGAINST our doctors – with this being the norm – it is hard to imagine what might be missed. I can’t even recall all the comments and looks I have endured as that crazy mother who thinks everything is or might be wrong with her kids.
BUT TODAY…today we met with someone who knows what we are dealing with. He is ready and willing to help. He told me that it was easy to look at the history, do an examination, and name the problem. The fix though…he warned me that correcting the problem is a much different challenge. This will not be easy, but it is possible.
This confirmation from a doctor was a refreshing change of pace.
Now to get all of LittleM’s labs to him for review so that he can formulate his recommendations.
- Heal the gut.
- Heal the blood-brain barrier.
- Balance the two hemispheres of the brain. (LittleM’s history and examination confirm an imbalance. I can’t remember is her right brain is over or under-active, but I am sure this will be discussed once Dr. Chris formulates his recommendations.)