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."
Thursday, October 28, 2010
More words from other FPIES moms. We all echo the same thing in one form or another...the moms going through the same mind games of not being able to play our role.
We, moms want to nurture - we need to nuture, our babies. Our babies wouldn't be here if we didn't have this drive. The drive to stay up all night with a crying baby, to find them nourishment for their body- whether that be a formula that can tolerate, or an elimination diet to nurse them, to push through when we're told we're over-reacting or crazy, or seeking attention, or first-time moms, or not coping 4th time moms. To push through all of this, to push our own pride to the side and continue on for our children. Or, to leave all of that behind and go it alone....neither the easy choice. Tough decisions to make for the health of our children.
Dad's constant mind games because they only want to protect, protect from this being real, from facing the reality of a chronic illness and what that does to a family structure, to protect both mother and child from unlistening specialists who tell you that you are malnourishing your child, when all you've done is protect them, sacrifice so much for them, and fight for their health and well being.
The reality is dad's can't fix this and mom's can't love it out. FPIES robs the natural order of things. But, to accept that this is where God wants us, that is peace. Our Little man is our gift...well, he's our gift #4, from God. Each of our gifts have continued to give us treasures beyond measure. Right now, we're in a gold mine of treasures with little man....if only we can continue to hold on to our Faith and trust that He knows our inner strength, that He only gives us what we can handle, and that He has his plans for us.
Plans to make me stronger when this was so very hard for so many months to listen to my baby in pain, day and night -- with little to do for him. So that when I was handed something to do- I now can't do enough. I want other moms to know they are not alone, I want to help, I want to provide hope to other families, mostly I want to empower other mom's the way I was empowered when I found FPIES and it FIT what my little man was going through. Empowered when I watched the YouTube video of Jack that could've been a video in my house of Little man, to show me that I was not alone. Empower me when I found a speciality children's hospital to take Little man to get his diagnosis so we could develop an action plan for treatment on this long and windy journey....
Plans to teach me what it really means to advocate for someone, someone who can not speak for themselves. To live outside of your comfort zone, to only think about your baby and nothing else and how to get his voice heard....
Our nuturing isn't being robbed from us, but the rules of the game have changed. Our instincts, our research into our children's illness, our advocacy for best care, our involvement in their every aspect of care. Our monitoring of diapers, and foods, and reactions, and caloric intakes IS nuturing an FPIES child.
Dad's protection hasn't been stolen, but the rules changed on what he is protecting from. Protection from crumbs, from trigger ingestions, from unlistening specialists, protecting the nuturing effects of the mother is probably the best gift he can give his child.
Many days, Little man takes much coaxing to eat. Today was one of those days. A lot of holding, and offering the bottle- hoping this time he will take it, and take a good amount. A lot of time from my day just to make sure I'm taking the time to assure he has taken the caloric intakes he needs to. He doesn't "ask" for his bottle -- I don't think he ever has. But, he has always taken a bottle best from me, he trusts me that way....maybe because he knows I will persist until he takes some, maybe he just enjoys the cuddle time. Today it took a lot of persistance....and nuturing.
Well, the other night at dinner- he was "crying" for our food once again. He has done this in stages for the past 8mo....when his gut is inflamed, he doesn't even ask for food. When he is healing, he begs. It is enough to break a mother's heart in a million pieces and some days so hard to not just give him SOMETHING! I caved....I went to the fridge, where I knew the peach was - got a knife and sliced it up for him. I put it in teeny-tiny pieces (the size of his millet puffs) and he picked it up (although slippery) and ate it!! He picked up another piece and ate it!! He tried to eat a bigger piece and gagged on it....but he recovered quickly and went for more. He wanted to hold the peach, touch all aspects of it. He started to get frustrated that he couldn't pick up the pieces fast enough so I cut up a few more pieces and put it in his mesh feeder. He is a little old for a mesh feeder and at first didn't know what to do with it but he got it! He loves peaches!!
Monday, October 25, 2010
We began the subspecialist labyrinth in Feb. with our referral to GI here, the above passage from this great artcle written about FPIES from a gastroenterologist says exactly our course. Shuffled through GI, an endoscopy with biopsy's, to the allergist and elemental diet with elimination of foods, reintroductions and little man stayed sick.... "no simple solution" doesn't begin to describe the path we've been on for the past 8mo. through the subspeciality labyrinth looking for support for management of this chronic illness.
Today, we hopefully took another turn closer to getting us out of this labyrinth, or at least show us there IS hope and choices and options for treatment, and support to navigate through it...
This gastroenterologist is associated with another (larger) Children's hosptial....so here is one option- we have another option for where little man would be hospitalized should he ever need this again, or for a food challenge (not trial, a challenge of an already known trigger food). This hospital is not in our home, but an hour and half away- which is not ideal but more realistic than half way across the country that it would take for us to return to CHOP (no matter how much we would rather just go there).
The GI started the appointment by explaining how he had read through little man's chart, which is always good. He asked how he could be of help -- being that we've already consulted with allergists and another GI. Management of his FPIES....specifically support is where we need help. He wanted to know his story- when we first started noticing symptoms, when we got help, when we went to Philadelphia....wait, you physically went all the way out to PA? We explained how he seemed familiar but then not-so-familiar milk protein intolerance, but was he reacting to more in my diet? from almost birth and how his reactions to Good Start formula seemed to wake up a colic, then we moved to rice and other solids to try and get a better handle on what we thought was reflux or hunger, or what? Soy formula last fall exacerbated a reflux, and colic. He wanted to know when he had his scope and when we started the elemental formula's. And what the first scope showed and the second, and how long on the elemental at the time of the 2nd scope? And what is he like now? What diet is he on, what does he tolerate. What about this tapioca reaction, that seems out of the typical response? Lots of good questions to get a good understanding of where we have come,what we have tried and where we are going. He was thorough and listening. He said key things like "I certainly don't argue with the parents"....."if they see something, then that is what it is- I don't live in your home so if you tell me something is wrong, I'm not going to deny it".
What did he think of him reacting to the elemental formula? He has never heard of it either....but he listened while we explained how we came to that conclusion and how we didnt' find a baseline until we finally moved away from any and all sources of corn. He didn't dwell on this, instead saying if our Dietitian is following closely and our Pediatrician- than he sees no reason why Little Man can't be on a homemade formula....if we've worked it out for adequate calories, protein, fats and carbohydrates...
We moved on to discuss his anemia. At this point, his concerns would be his protein intakes (getting better iron-rich sources of protein in his diet or formula) and treating his anemia. He wanted to know why we had not done an IV iron transfusion since he does this all the time for his Crohn's patients- and they feel so much better after having it done. He would be in the hospital and the iron would be transfused in him via IV. He fully agreed that he has a risk of reacting to a blood transfusion and agreed it wouldn't be his first choice for little man.
Pause for a moment with me....can you just imagine what it feels like to be in a room of a subspecialist who is acknowledging your son's illness, listening to your concerns and giving you real options for treatments of the complexity of it? And giving you the support that he would oversee this at the Children's hosptial he works with if this needs to be done.
This GI goes on to explain GI's are not typically the main doctors on an FPIES team, that you don't necessarily need the GI outside of needs for scopes. There is little to test for and this can further frustrate a GI doctor who typically operate on diagnostic tests and criteria they can measure. Remember, he is one- so he knows. The good part about this GI, his good friend is the very Allergist we saw last month (Allergist #3 who confirms Allergist #2 diagnosis of FPIES). He even went on to explain how he learned about FPIES.....everyone has to start somewhere....
A mom whose child did not tolerate soy and it was severe reactions to soy, was looking for help- looking to be heard. This doctor thought he had her simple solution- avoid soy. But the mom was noticing pain and other symptoms with introductions of some other foods and did not know how to proceed, for fear of the soy reaction returning. So she visited his waiting room everytime she introduced a new food. Finally, he said they could challenge soy- since she was passing so many other foods. He admitted her to the ER for monitoring, and fed the child soy. A few hours go by and nothing happens. So, he dismisses her- she goes to the parking lot and waits (she knows her child will be having this reaction soon). Sure enough, the "vomiting her brains out" begins and mom brings her back into the ER. The GI doctor was perplexed, called his allergist buddy and asked him if he knew what was going on, he replied...she has FPIES, haven't you heard of this? He hadn't before, now he did.....
This mom's actions and persistance and advocacy for her daughter has made an excellent and helpful, FPIES friendly GI for so many other moms to follow her....I am grateful to her. And I hope her daughter is now outgrown her FPIES and doing well. Maybe someday I can connect with her (goodness knows, I sure have "met" a good share of FPIES mommy's already!).
He continued to take his time with us, discussing our concerns and how he could be of help...I wonder if he realizes how much he already has?
Sunday, October 24, 2010
Sharing this website again. A good resource for Rare Disease support. Just a mom wanting to be heard, that has been me for months. To see there are so many other mom's experiencing similar things (with other illnesses) is disheartening and encouraging at the same time. Encouraging that I am not alone, but disheartening that others' are not finding the right avenues to navigate with doctors to hear the cries of a mom for her child.
I do tire of the "fight"....I wish it didn't have to be such a fight to just have help for a child with an illness- even if rare and little understood. I struggle with the "why does it have to be this way"? I just don't understand why someone can't hear me, what I am not saying- what am I portraying wrong? Is my patience being perceived as my son being healthy and not really needing the care? I know it is a rare illness and a clinical diagnosis and I have tried to be patient. But the fact that little man's illness becomes more complex is driving me to 'push' more - not only for him but for his brothers....who all deserve some normalcy in their lives.
Normalcy that can come, despite having to cope with a chronic illness. Normalcy I can provide, coping I am doing....but everything I could do better and with a less heavy heart if there was more support regarding his unique illness and needs surrounding the complexity of it. But my mind does not turn off....always planning next steps, always worried about next steps, always wondering if he will get more and more sick if we don't continue to find out the right things to do to help him. Always researching of what those right things might be. Research more and more about allergies, about digestion, about nutrition, about food families and carbohydrate intolerance's, and now also about how to get a toddler to put food in his mouth when he has not had food for 8mo. and textures and tastes are becoming foreign. And then when he does put it in his mouth, his stomach cramps he associates the eating with pain....and maybe he trusts me a little less.
Tomorrow, we have hope. We see a new GI doctor that has managed a few FPIES cases over the past few years.....although likely none as complex as little man since he works in conjunction with Allergist #3 and that was his comment when reviewing little man's history. We will hold on to to hope that he can provide us with some support for continued management of this illness. The missing pieces in the management of this illness involves just a mom wanting to be heard....
Saturday, October 23, 2010
Maybe because I am simply tired. Maybe because I have so much on my mind for new posts to share but too much to put down in words. Maybe because I don't have any better way to say this message than how this writer says it here...I will simply share this post today. And also connect the reader to an excellent blog for support for families with children of rare, chronic diseases. I find inspiration in others' journey's inspire me.....
Allergist #1 was sure FPIES was not what was ravaging our son's body because he had not ever experienced full shock- even though the research shows that "only" 20% of kids do go into shock. Although, she also admitted that she has only diagnosed one case in her career, and that case is quite severe. I have actually since "met" this mom (online) and yes- her daughter's case is quite severe in her reactions; but otherwise their FPIES course are similar. So, on to a 2nd opinion. I have to say here, that it is funny to me that doctors are surprised when you ask for, or seek out a 2nd opinion. A good doctor would encourage it...would admit their humanity and that they simply can not know everything; some other doctors are challenged by it...what did they miss? I respect the doctor who admits their humanity, that admits they don't know everything but are ready and willing to learn. With their training, experience and expertise; they can catch up fast on something new. I caught up fast- because I live this day in and day out....I am gaining more experience than any study or research article could ever quantify.
Allergist #2 had more experience with this condition,and conditions similar to it; and was able to recognize our son's FPIES immediately by symptoms presented in his history. He was also able to recognize a likely corn trigger intolerance....because of his experience. "There is a small percentage of kids who react to even the elemental formula's and it is unfortunate because it makes it very difficult"....I can attest to that!
Allergist #3- confirms the FPIES once again and gives us a great empowering statement for this difficult clinical diagnosis. "He has FPIES, this has been confirmed by two allergist, here is some information if you would like to learn more"..... So, on to Allergist #4....and back to the clinic we started at- in our home.
Allergist #4 wants to be part of our "team". I've spoken before about how FPIES is best managed by a team- GI, Allergy, Nutrition,Pediatrician, parent (a good social worker would help too- and I'm working on that). I am encouraged that he wants to be a part of the team, wants to be a support for us and a resource of our pediatrician to help us manage this chronic illness that has become complex for little man.
A struggle we still have is the fact that we no longer have little man on an elemental formula, and will not be putting him back on it; instead we have him on a formula that I make. It is adequate in calories, carbohydrates, protein, fats, and macro nutrients but it is lacking in some micro nutrients....nutrients that should be filled in by a diet. But, we have yet to find a diet little man can tolerate in large amounts to contribute to his nutrition. The "easy" answer to the doctors is: put him back on the elemental formula....because after all, "I've never heard of a child reacting to an elemental formula".
I am in nutrition- a dietetic technician, I am Registered- which means I must maintain a certain amount of continuing education yearly. I also am practicing- which means I have a job, a job where I gain more knowledge from my experience. I attend seminars on GI and nutrition and allergies. I have special interest in GI, allergies, and pediatrics. I had never heard of FPIES, and I certainly would not have suspected it to be such a severe and sensitive condition.....but that doesn't mean it didn't exist. It meant simply that I had something to learn.
Many will say that they have never heard of infants being allergic to breastmilk, and yet many infants are....for multitudes of reasons, some still unknown. If a baby can be allergic, or sensitive, or reacting, or not thriving on breastmilk-- that is made from God....Why is it such a stretch that an infant can be allergic to something made by man? There are many additives in formula. The elemental are designed so that the proteins are broken down to single amino acid (something otherwise the body has to do). So, instead the body does not have to break it down- giving it little, if anything, to react to. It simply absorbs it, providing the nutrition the body needs. But, the formula doesn't just contain amino acids. It contains fats and carbohydrates (in the form of oils and sugars). My little man was reacting to the sugars - he has a sugar intolerance but it was more than that, he also has a corn trigger. The corn syrup solids are strained down to remove the proteins but there is chances for trace proteins to remain. FPIES triggers are highly sensitive and some kids can, and do react, to trace proteins....it is why my little man could not thrive on my breastmilk -- reacting to trace proteins.
Everyone following me understands this, right? It makes perfect sense to me, I am living it - I have a perspective on it that I cant' seem to illustrate. How do I get his doctors to understand this? The same doctors that not requested I stop breastfeeding, but insist that I stop breastfeeding as it was clear he was reacting to my milk- despite my giving up all sources of dairy, soy, and gluten. It wasn't enough, he was still reacting to something. I knew that, I knew I had to stop nursing him- I knew something in my diet was making him stay sick; so either drastic measures needed to be taken or I could switch him to an elemental formula. He was so sick, we had to do something quickly. He improved some on the elemental formulas- it helped some but again, just like when I gave up some of his triggers for breastfeeding him and saw some relief - it wasn't enough and he was still reacting to something. In my diet, it was rice and corn, and maybe other things we have not yet identified. In the formula- it was the corn and maybe even the soy oil.
I had never heard of FPIES or reacting to everything in breastmilk or reacting to elemental formula's either.... but I have now.
Friday, October 22, 2010
It was last Dec., after 4mo of trying to figure out on my own what was going on with his little body, trying to control things with a milk protein intolerance consideration (new foods should have worked, as long as we avoided dairy)....but they weren't working. Soy formula was failing, building up a resistance and causing it's own host of new concerning symptoms. The biggest thing that I was able to finally connect that his body was showing a sensitivity build up to soy was a croup-y cough. Others have talked about this similar type of cough with food reactions (often soy is a culprit)- I wonder if it is actually from the reflux? Could be....warrants further investigation at some point. But for now, either way- his body was not tolerating the small amounts we were doing. By mid December, all I could think was- lets just get through the holidays and then I am going to have to bring him in to his pediatrician because I simply can not grasp a handle on this by myself anymore. I already knew that outside of frank vomiting and bloody stools- little is recognized about delayed food intolerance's in the medical community. From a dietetics standpoint, we see things differently but we also remain cautious as to not encourage someone to unnecessarily over-restrict the diet....especially the diet of a growing child. Restricting my son's diet has never been my intention....adding to it has. But FPIES takes that away, in a cruel way. Food is not just food anymore. Allergies take on a whole new meaning.
Ok, back to December. Our pediatrician agreed little man was likely building up an intolerance to soy, as many dairy intolerant infants do, and to try him on a 100% no milk,no soy diet (breastfeeding for me and his foods as well), keep a journal, and try Nutramagin, Pregistimal or Alimentum. I chose Nutramagin. Only to have him projectile vomit all over our kitchen, multiple times that day. We even tried it a few more times- just to be sure....each time being more and more obvious and concerning. Back to the pediatrician and labs were checked for allergies, and gluten sensitivity, CBC, and iron, and 'did I want to check anything else'? Yes, I'm curious to what his Vit.D levels are. He was a breastfed baby and research is showing there is higher incidence for some Vit.D deficiency's in breastfed babies, we're getting labs- lets check that too. No one, not even me anticipated the results we got. His level was 9ng/ml, with normal being 24-80ng/ml. Diagnosis: profoundly vitamin D deficient. We immediately started a supplement to restore these levels. But my concern remained....how did his levels get so low? Was my milk this deficient? I had my levels checked just to be sure I wasn't in trouble too....no, my levels were within normal limits. But, research has shown that even if mom is not deficient- breastmilk can be (and often is). But really? This deficient? How normal is this? I already knew by his actions of gas and stomach discomfort that he was having digestion issues, maybe inflammation - my instincts were telling me this....that he had gut inflammation in his small intestine and dysbiosis in his colon. The gut inflammation was causing a "leaky gut" and causing his body to be sensitive to dietary proteins. These were my instincts- I had never even heard of FPIES. Until I printed off an article from EMedicine about Protein Intolerance, there was a brief mention of it there. I highlighted it in my reading, along with milk protein intolerance, multiple protein intolerance, Eosinophiliac disorders, Celiac, protein enteropathy. My research began with that Protein Intolerance article. My instincts were confirmed by his labs showing a low iron and low Vit.D, as well as a low IgA (mucosa lining of GI tract). Now what to do with this information? What do we do next?
Thursday, October 21, 2010
The reality is that little man has been sick for most of his life. He had FPIES ravaging his body before we ever even heard of such a terrible thing. Maybe if I had recognized it sooner, maybe if I had ever heard of FPIES, maybe if the doctors had ever heard of FPIES -- if it had been in the differential diagnosis for the pediatrician in the early stages, or the GI or Allergist when his weight fell from 80th% to 40th% down to the 11th% and required a hospitalization to get his nutrition back on track. Unfortunately that meant taking a new track that only continued to worsen his nutrition and cascade his illness -- being that no one knew about FPIES and it's extreme sensitivity to trace proteins....even trace proteins in breastmilk and elemental formula's. It is a bizarre illness, but it is real. The reality is FPIES allergy's are severe and sensitive and these children do react to trace proteins - in breastmilk, in medications, in corn syrup solids and soy oils in formula.
The reality is that all food is "poison" in our house. The reality is that there has way too much crying and not enough happy moments of calm and routine that kids can thrive on....that I strive to provide for my children. The reality remains that meals in our house are more of just the "hassle" of 'what's for dinner'- it is trying to cook with a toddler seeing and smelling the food he can't have, the reality of how many times I would normally use a cracker or a fruit cup, a cheese stick as a distraction for my other boys, while I cooked dinner. For little man- I let him dig through cupboards.... The reality that eating a meal as a family is more of a rare, and rushed occurrence, than the normal for us anymore; and more often than not- one of us takes Little Man out of the room and distracts him downstairs. The reality is that I do not even have a bath soap that is safe to wash him with. That he is up at all different hours of the night - and I have no idea why, should I be worried? Is he having a reaction to something? This is where it all started at just 10days old when 2am was his 2hr.-wide-awake time....he's doing it again and besides the fact that I am so extremely over tired, I'm worried about what it means.
The reality is that his iron status has always been low, his Vit.D was profoundly deficient the first time we checked labs on him when he was 6mo. old....no one had any idea why....I had my suspicions- instincts that were right on about his gut inflammation. His chronic inflammation kept him from absorbing good nutrients, even while breastfed. His beginning of blood in stools following corn fail dropped it even more, his vegetarian diet of hemp milk had difficulty replenishing his already low stores, and then more blood in stools. The reality is that because I will not allow him to have the elemental formula that continued to make him sick for 5mo.; I am now getting blamed for his poor nutrition labs, his low iron, his weight gains not being more....despite the fact that I have been looking for help for his FPIES and to stabilize his illness for months. The reality is I don't want to complain about things I can not change, but I do want to change the things I can.
The reality is that his anemia is scaring me. That it is just one more thing in his complex illness to worry about, to wonder, and want to know, what is going on inside his little body. That, when he starts to get overtired, or his heart starts to race - I worry.
The reality that when he starts to cry and I don't know why, I worry and I begin to panic- what did he eat, what is he reacting to, now long will this last, will it get worse, how is this affecting his brothers well-being? That when he won't eat enough of his formula to gain weight- I begin to panic. That when he won't even let a new food touch his lips, I worry about how he is going to get a well rounded diet when he won't eat, much less try, the new foods.
The reality is I want to trust my instincts, and knock out some food trials....of things like eggs, almonds, white potatoes, coconut milk, avocado, banana, beef, lamb, quinoa, mango, peaches, apricots, carrots, squash. But if we're already getting blamed for his illness and his nutrition state because of it....if he gets sick from these food trials (that of course we would do in a very slow trials)- how much more blame can we carry? The reality is, I feel trapped. Between a rock and a hard place -- this whole journey has kept me between a rock and a hard place.
The reality is - I just want him to be the best he can be with this chronic illness. I want him to have what every child deserves- a good quality of life. And in that, I want that for my other boys as well....if little man's illness remains so high needs- it is difficult to give them that also. My focus is my family....Little man has required much of my time and energy over the past year. The reality is, there isn't anything, not.one.thing I wouldn't do for him. This is (a little bit of) the reality with a FPIES child, in our family.
Wednesday, October 20, 2010
So, on to spinach. I bought some today- steamed it and pureed it. We plan to start tomorrow. I have no idea what to expect.
I also got Probiotics today - ordered hypoallergenic ones online. I am anxious to see how he would do on these but it will have to be a sort of trial in itself. So, I have to wait a bit for that. When we need a break, between one of the next food trials.
Today, was a break. Today he had a good day. Lots of playing on his own, little whining, sleeping ok, eating well. Lets hope it continues through the spinach trial!
Monday, October 18, 2010
If your child has a syndrome that not many understand, and instead of being acknowledged as a syndrome of confusing symptoms it is dismissed because medicine has no answers....or worse, the parents are made to feel that it is something they are doing wrong and not something that medicine is missing, because it is easier for medicine – that functions on concrete- to be able to say the anxiety of the parents (mom) is more of the issue than the child’s actual symptoms of pain and discomfort. What affect would that have on you and your overall well being? How can this not be anxiety provoking?
FPIES is an anxiety provoking diagnosis. It is one of the things that make it most difficult from day to day.
The anxiety is fueled by so many things - it becomes a sort of PTSD kind of being. Post traumatic stress because of a pain filled baby that you can only watch and do nothing for while he cried and cried and then violently vomited the contents of his stomach, and many sleepless nights of worry and a baby in pain. Post traumatic stress from hospital stays where you were actually accused of causing this pain and distress, and poor nutritional state to this little beautiful boy -- when you were only doing everything in your human (and sometimes superhuman) strength to help him.
Food trials always bring this anxiety to the surface in me. I try to push it back down, I don't like to feel anxious and I don't like it to affect me...so I push back. Although I do find, no matter how hard I try, it is there- just lingering around. I have found ways to help with it. Blogging, support groups, learning from and connecting with other mom's going through the same things, caring people who help and provide hope, having our pediatrician follow his progress and developments with me,....It all comes down to the one thing that is best for my anxiety -- to be/feel empowered.
My anxiety has been my driving force. It is not dragging me down, it is driving me forward. I have found studying and researching everything related to my son's FPIES not only therapeutic, but empowering. I also find helping others to be therapeutic. I have been putting together information for an FPIES Resource page for families. While putting together this page, I was approached to join forces of an organization already established to accomplish this very thing. The foundation needs new mom's to "carry the torch" and I have agreed to help be one of those moms. I have had a drive to pull it altogether, to help more family's. To give resources, support and hope to family's facing this frustrating, anxiety provoking diagnosis. Awareness is educating. Education is empowering. Empowering is healing.
Watch for updates on The PIC Foundation!!
Sunday, October 17, 2010
Today, he woke up stuffy and with a low grade fever, remained "clingy" all day and then threw up this afternoon. We have no idea what caused it. It wasn't violent so whatever it was it was only "mild". He felt better after his nap. What is causing all this? How do we proceed when we are barely moving and we are getting all these mysterious signs/symptoms. Can we attribute it all to his anemia? What if he is slowly building towards a reaction? What if he is having blood in stools again? His last positive stool samples, we couldn't even visually see the blood- it was microscopic.
We see GI on Tuesday, an Allergist (this will make #4 for Allergists, #1-no FPIES, #2, absolutely no doubt FPIES, #3- confirms FPIES, #4 - ?). We need this 4th Allergist because he is the one actually in the clinic where the rest of his team is. We only ask that he be open minded, and willing to learn so he can help Little Man.
We will proceed with food trials tomorrow, I think....
Saturday, October 16, 2010
It doesn’t interest me
what you do for a living.
I want to know
what you ache for
and if you dare to dream
of meeting your heart’s longing.
It doesn’t interest me
how old you are.
I want to know
if you will risk
looking like a fool
for your dream
for the adventure of being alive.
It doesn’t interest me
what planets are
squaring your moon...
I want to know
if you have touched
the centre of your own sorrow
if you have been opened
by life’s betrayals
or have become shrivelled and closed
from fear of further pain.
I want to know
if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.
I want to know
if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you
to the tips of your fingers and toes
without cautioning us
to be careful
to be realistic
to remember the limitations
of being human.
It doesn’t interest me
if the story you are telling me
I want to know if you can
to be true to yourself.
If you can bear
the accusation of betrayal
and not betray your own soul.
If you can be faithless
and therefore trustworthy.
I want to know if you can see Beauty
even when it is not pretty
And if you can source your own life
from its presence.
I want to know
if you can live with failure
yours and mine
and still stand at the edge of the lake
and shout to the silver of the full moon,
It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.
It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
and not shrink back.
It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away.
I want to know
if you can be alone
and if you truly like
the company you keep
in the empty moments.
By Oriah © Mountain Dreaming,
from the book The Invitation
published by HarperONE, San Francisco,
1999 All rights reserved
Thursday, October 14, 2010
These days, my lists are longer than the day. My plate and cup runneth over. I want to just be mom. Don't get me wrong, I am not asking for anyone to take away his FPIES. I just want help putting the pieces of this puzzle together and managing them, so I can be the mom I was born to be -- to little man and to my other boys. The help I want is in his coordinated care of medical professionals that are there when his illness goes out of my scope of knowledge. I am his mom, I will always know what is best for him but I don't always know what to do when he has low hemoglobin, or he is reacting, or his diet is too limited, or his digestion is off balance, or when he has pain that I can't identify or take away....
Researching his allergy and his digestion is top on my mind these days. I have so many things to read and go through, some things I've read before but seeing differently with "FPIES eyes", some things are new and unexplored, some things are "out of the box".
It is clear to me that his digestion is off balance. He doesn't have the proper enzymes to breakdown foods in the small intestine (this confirmed by his dissacharidase deficiency on last biopsy), I suspect he has a low mucosa lining to his gut (this shown by his low IgA levels), his inflammation is chronic, and at last scope- patchy. Improperly digested foods go through his small intestines- where they are attempting to be absorbed but too big and thus causing allergic reactions from his body rejecting it. The food propels through his small intestine to his large intestine (colon) where his lack of good gut flora leave it unable to breakdown and only feed the dysbiosis, this showed by diaper rashes that look "yeasty" with any ingestion's of sugars. I need to correct his imbalances or food trials will continue to go as they have -- uncomfortable and uneasy....
Where do I start? I make a list....
Wednesday, October 13, 2010
Navigating murky waters with the diagnosis and knowing what next steps to take, with the coordinated care team, and now with food trials. We are on day 5 of plums but Little Man isn't feeling well. Day 1 went well, he liked them and he ate them himself; there were a few small concerning symptoms but nothing that we could pinpoint just yet. We have to keep pressing on until it becomes more clear. Day 2 was a break day (I was at work-unable to monitor possible build symptoms). Day 3 was on track and he did well, again with a few questionable symptoms that we are watching. Day 4 was uneventful...until he got a crumb. We took a day off, he had the all-too-familiar rotten egg (sulfur) smelling "reaction diaper" with a low - grade fever but he slept a good nights sleep (through the night), and no vomiting. Today, offered the plums and he didn't want them. Are we still spiraling from the crumb? Or is it the plums? I managed a swipe along his lips this morning, but was not going to fight him....he has enough negative associations with food already, he doesn't need to be forced to eat (and we've already tried this with terrible results in the past, in our desperation to get him to take/tolerate foods, not knowing or understanding what was really going on inside his little body). He has already shown me he can tolerate textures, and he can feed himself with a spoon. We will let him guide his eating patterns as we have let him guide so much of this journey. I don't think he cares for a "breakfast" meal, he seems to do better with a noon-meal. I put away the bowl and decided to try again later. Within 30min or so, his screaming began....high agitation settled by little- not even a ride in the car to take his brothers to school was going to calm him down! We got home and I gave him some of his compounded ibuprofen and his morning iron dose, and just held him for a while - clearly he isn't feeling good. Once he noticed his daddy home (day off work), he went to him for a comforting snuggle where he fell asleep. Again, another "off" thing- we've been fighting him the past few days to take a nap at naptime and now he falls asleep at 9am in the morning! He slept for almost 3hrs, stayed clingy, fussy and not drinking very well all day. The diaper he had this afternoon was suspicious but still not sure what it, and these symptoms are telling us.
Navigating these murky waters. Sure would be nice to have a map....
Tuesday, October 12, 2010
Thank you Walgreens!!
Monday, October 11, 2010
For a 16mo.old, he is on the smaller side. He was born in the 80th% for weight but now hangs around the 10th%. His growth chart looks like a mountain range rather than a curve. This is a fun age, as milestones double by the day, and words start to take off! Just this week, he has added 4 new words to his vocabulary- 4 words that he initiated on his own! The other day, he wanted a sticker on his shirt (the "prize" at the pediatrician's office is a big sticker that we stick on his shirt for him to wear with pride) so he saw a sticker at home and he said "stick" and pointed to his shirt! So proud of him, I gave him two! And it was just a month ago, I was beginning to worry his language was falling behind. Was it developmental? Was it being #4 - so many helpers, why speak? He certainly showed us he processes things well, has a good memory and can follow simple directions but I was beginning to worry about his speech. I know better, that every kid has their own normal and that not everything is done "by the books" but with Little Man- I worry in a different way. I worried that since he wasn't getting good oral-motor development from eating that he will struggle with talking....and I still worry about it. But when he adds new words, I worry a little less (and celebrate a little more). And one less thing to worry about is a good thing.
Sunday, October 10, 2010
We are considering Millet a "pass" for now. The awake-in-the-middle-of-the-night symptoms we were seeing were from his iron supplement being given too late in the evening (and not enough "food" with it). So, we have changed his dosing (along with getting a new compound from Walgreens of a better tolerated/tasting iron) and he appears to be tolerating this better. He will continue getting his millet puffs that he loves so much, but millet porridge (and millet flour cookies) are on the back burner for now and we'll come back to them. Only time will tell and we have to start somewhere; and we have to press on....
So, the other day- I bought plums. I washed them, peeled them (just decided I would also not do the peeling right now), chopped them up and boiled them down with some water to a soft mush. I then put them in the blender. They were ready for him to "trial". I let them cool overnight and they were ready. I also made an attempt at fruit leather with some of the cooked/pureed plums. It didn't completly turn out but I will try again!
Friday, October 8, 2010
Thursday, October 7, 2010
My Little Man has a corn FPIES trigger. In hindsight, it may be one of his main/first triggers as he reacted diaper rash ointments and diapers only a few days old. There is corn starch/talc in diaper creams and in some diaper linings. He then reacted to Tylenol at 2 1/2mo. old when I have given it to him for pain he was having (that I now know was from that formula trial we did at that time). There is high fructose corn syrup and citric acid (among other things) in infant Tylenol. He seemed to tolerate children's Motrin better later on when given for pain and teething, there is no corn syrup in Children's Motrin (although there is citric acid so he wasn't completly tolerating that either, which we suspected but weren't sure). He reacted to all formula trials - we have no doubts that he has a dairy trigger but likely his corn trigger was compounding this. I nursed him while giving up dairy and soy, then wheat in my diet - all to no avail....now we know the corn I had increased in my diet was likely why. FPIES triggers (violent vomiting, diarrhea, dehydration) do not happen through breastmilk but sensitivity's do for many FPIES kids (just the same as a milk intolerant or another allergy will be sensitized through breastmilk). The infant reacts to trace proteins in the mothers milk and anything from "simple" reflux to bloody stools can result from this reaction to a sensitive/immature gut. My Little Man was reacting to these proteins in my breastmilk, after beginning solids, the sensitivity only was heightened and his body was beginning the attacking mechanisms of FPIES to: dairy, soy, rice, corn and triggers yet to be identified (but hopefully no more!). My Little Man continued to react to the trace corn proteins in the corn syrup solids in the formula's- even the elemental formula's that undergo more strict "straining" of these proteins. For so many months, my little man suffered because of the "assault" from the trace corn proteins- some days were worse than others, some days were unbearable, but everyday he had pain.
We have fully moved away from any commercial formula. I would LOVE it if a formula company would hear my plea (maybe I need to write more letters?) and produce a formula that my Little Man could thrive on but so far those have been empty plea's so I began the process of making him a formula. I make it out of Hemp milk, hemp high protein, oil and arrowroot starch. The catch is I have to cook this arrowroot starch down to a syrup because Little Man can not tolerate it any other way - he continues to have problems with carbohydrate digestion but by slow cooking it over a low heat (in the hemp milk)- it breaks down the carbohydrate to an easier digestible form. It takes 1hr. for 1batch, and I can do 2 batches to last 2days- but anything longer and the formula starts to separate and breakdown. So, every 2 days- I am in my kitchen for 2hours.
Monday, October 4, 2010
Now, begins the guessing game - is this from the baking powder with corn starch? The crumb or two he may have ingested? Could be. Is it from baking soda or cream of tarter? Doubtful but could be. Or, worst yet- is this an FPIES trigger to millet or an intolerance to millet? At that point- I'm leaning towards intolerance and taking a break to see what that does to his system and see if the picture can become less muddy over the next few days. I work 4 days this week, so won't be home to monitor him anyway so a good time to just take a simple break.
Little man had a lab draw set up for this morning. We've been getting frequent checks on his labs, with his FPIES being a chronic illness- compounding situations have been sneaking up on us but we are learning more and more about FPIES and how things affect Little Man. These lab checks take a lot out of him and this morning was no exception- especially since they had to try 4 times to get the vein! Poor little man. Results came back today and a short discussion with our pediatrician helped to calm my nerves between his labs being off and his questionable build reaction, with me being at work unable to do much about any of it. His hemoglobin/hemotocrit and Iron are holding but not improved at all; although the good news is that his reticulocytes count is improved- showing his body is nicely responding to the iron supplement. It will take awhile (6weeks or so) to begin to see a tiny bump in his hemoglobin/hemotocrit and iron levels from this though....it will be a slow process but we still feel this remains a better option than a transfusion at this time. We are beginning to check other nutritional panel labs as well, to be sure his homemade formula is still helping him thrive (because as far as pain free and baseline and weight gain goes, he is thriving on it). His other labs look ok.
But that doesn't change the fact that he needs a tiny menu to round up his nutrition of micro nutrients. We are fighting hard to get him this. But in the meantime, he can't afford a set back- so we have to continue to proceed very slowly. We remain between that rock and hard place.....he needs more nutrition in his diet, but he can't afford a reaction. Does anyone have a crystal ball to see what we should even try next? Do we continue with the millet? I still feel like we should- I have been going primarily on instincts this whole time, and letting Little Man guide us along. He isn't reacting during the day and in fact, he may even be improved- behavior, sleep, comfort, mood, etc. But last night/this morning threw me enough of a warning sign to signal my instincts to take a break/slow down until the picture is less muddy (teething pain? cold? reaction? hungry?). Maybe put millet to the side and get a fruit but then again- left in the same place we were last week- he won't eat a fruit...millet he was eating (another sign that his body isn't reacting to it- he wants it).
Today, I'm left with FPIES=Feeling Powerless In Every Sense; tomorrow will be better. It is day by day and sometimes moment by moment around here. And today, I am reminded of that.
Sunday, October 3, 2010
Amanda! I have millet flour, and on the back of the bag is a recipe for biscuits so I thought I'd use that instead of Amanda's arrowroot cookie recipe to start with since I do not have sugar to use or a fruit- it would end up being a biscuit anyway. Well, that recipe tanked and was more like a dog biscuit! He bit into it and chewed it but spit it out!! Ugh- I was beginning to worry about him actually swallowing textures....but decided to try again with Amanda's recipe....it made them beautifully!! It was then that I also realized I had gotten mixed up and used baking powder instead of baking soda/cream of tarter combo in the 1st biscuits!!! Ahhh!! Good thing he didn't eat them! He must've known.... Baking powder has corn starch, and I KNEW that but I got mixed up...maybe in my excitement to be baking again, and for Little Man!- I probably should just throw it away so I don't make that mistake again! Once I re-made the new recipe- he didn't have any problems with the texture or taste and gobbled it up!! He even "asked" for it again later in the day!
Little man seems to be tolerating the Millet well so far. He is not having any daytime adverse effects at all, not one. Not one burp, gas attack, suspect diaper, spit up, lethargy, or vomiting of course. In fact he has been so content!! Nighttime isn't as quiet, he is awake at odd times, for too long of a time. I am still not sure what to call this- as this has happened before leading up to a reaction but it is also happens for benign, "normal" (there's that setting again) baby/toddler reasons. So, we press on. He has been getting millet porridge in the morning, in increasing amounts daily. He also is enjoying his millet puffs again, as a "snack" and as something to eat when we sit at the table as a family.
Little man enjoyed sitting with us at the table at dinner (real, actual dinner of pot roast/potatoes/etc.!). He ate his millet puffs one by one, and then he even stayed there while I cleared the table and cleaned up the dishes. His daddy couldn't resist how sweet (and normal) he was being so grabbed a few pictures while Little Man "talked" to his big brother.
This dinner was the end of a nice, "normal" fall day yesterday. We enjoyed real family time, normal pre-FPIES activities- all together as a family. I love fall, so we went to a local Apple Orchard/Corn Maze. Ok, ok- I know, you're thinking- you took your corn allergic kid to a corn maze? Well, he was safe and enjoyed the ride and view....
Friday, October 1, 2010
Yesterday morning, he wasn't thrilled but I got some on his lip and he licked it and then began ASKING for more and LETTING me FEED him!! I was giddy! We had to distract him so I could pull the bowl away (can't do too much in case he would react!). This morning, he wasn't as excited- he was opening his mouth but not very wide. I said to Little Man's daddy who was standing by - "this makes me nervous when he doesn't want to eat it"....to which he leaned over and whispered in Little Man's ear..."it's ok- she would get nervous if you wanted to eat up the whole bowl full too". Yep- can't win with this. Which is why I have been cautiously optimistic all day....super content or reaction tired? Fussy from teething top molars or tummy ache? Achy from an oncoming cold or reacting? Ugh- I did what I do best when I need to be distracted....I cleaned and organized! I got a lot done this morning but then after his nap he was pretty fussy; he settled down through the evening though so will remain hopeful. Day by day, moment by moment.....
Coping is acceptance.
This spells out coping to me. I have Faith there is a bigger plan for us in the universe. Sometimes it requires ongoing evaluation of the road map you've been handed to figure out what direction you want/need to go in....and to take it ONE step at a time...only one step at a time....sometimes it is moment by moment, most of the time it is day by day- I don't go much further than that with this illness....I know better- things change course FAST and I'll get lost quickly trying to look too far ahead.
WELCOME TO HOLLAND
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.