Put it in a box

Sometimes I literally have to put my PI/FPIES/EGID/food allergies (what ever label you want to use for it) thoughts in a mental box and hide them in a closet.

Food is everywhere. Food is part of everything we as humans do and for most cultures food is what brings people together. Holidays are centered around meals together. Sharing of food takes place at family events. Even sport events have food involved. It seems that we just cannot escape from food!

Having a child with food allergies is difficult but most times things can be substituted and the child can still eat. Having a child who currently cannot eat anything but carrots is beyond difficult. Parents tell me all the time "you are lucky you don't have to worry about cooking for your kids". Cooking for my kids is something I would love to do and hearing that so many times makes my heart break. I don't think anyone could understand what it feels like to have to deprive your child of food unless you actually have to do it. They would never say something like that if they understood really what it was like. I do have to spend time in the kitchen freezing pureed carrots, making baked carrot chips, boiling carrots and trying to think of a million other ways to feed my child the one food she can eat.

So at some point the stress of parties, playdates and all the other things that should be fun for a toddler and parent get to you. How many times do you have to see your child look with longing at the other kids eating, having to wipe toys and make sure no food touches your child before you want to scream, cry or just give up?

Many times I just want to not go to these social events, but then what am I teaching my kids? I need to be strong for them. I need them to understand that they can still enjoy life without food even though society says differently. I need them to know they can be anyone and do anything no matter what life throws at them. I need to be their MOTHER and show them the way when they feel to give up.

So sometimes at night when my brain can't turn off, when I am consumed by the battles my children face daily. I remind myself to open that box put all the PI/EGID thoughts in it and tuck it away until I am strong enough to face them again.

Relief and Heartache...... all so bitter sweet

Just 3 days after Hayls upper and lower endoscopies the GI called to give me the first set of biopsie results.

My heart skipped a beat, and my mind started to race. I wanted to know if the results confirmed an EGID. I was hoping it would and yet I was hoping it wouldn't. I didn't want her to have an EGID but at the same time I didn't want us to have done one more test with no answers. I didn't want to have one more failed food trial and still no diagnosis.

Sadly the result is Hayls has EGE (Eosinophilic Grastroenteritis) . My heart sank because any EGID is a life long illness and for some it consists of a very limited diet. Some people cannot have any food but elemental formulas. EGID's in themselves are rare but the type she has is even more so. The GI said our approach thus far with food trials, medications and trying to achieve gut homeostatsis is great. He fully agrees with the path we are traveling on and seems to be supportive of what we have planned ahead.

Then comes the relief side of it. The relief that we have a diagnosis and now we have to fight just a little less to get special order medications for the kids (e.g. they cannot use regular tylenol or motrin so I have to get them compounded) and the help they need for the various ways these food allergies affect their lives.

My mind is still in a fog a week later trying to process everything. Trying to find the missing link for possible gut healing for the kids.

I still have so many questions, so much unknown.

Sometimes the biopsies even though they have eosinophils do not necessarily mean the person has an EGID, but the GI looks at other things such as the lining of the digestive tract and a few other factors. Well (besides the fact that her eosinophil count was very high for eating food for only 4 days the week before her tests) Hayls fits everything and so does Heath. When Heath is a year old we will decide when he will be scoped to specify his type of EGID.

As a family we still have hope. Hope of maybe one day calling this a bad dream or hope of just finding some food they can eat. Either way it is hope and we do the best we can to move forward one day at a time.

We really really like our new pediatric GI

The same week with our Stanford appointments we met with our new GI. First off I just have to say we really like our new found team. Our pediatrician (who was stumbling around in the dark with us for a long time) helped us find a new allergist (who admits she knows very little about the non-IgE allergy world, this is a breath of fresh air for us, a Dr who admits she may have no clue :D ) who helped us find the GI.

He was on the kids files before we even met him. When we had met with the allergist a few weeks before she was actually consulting with him before our appointment. He waited until after we were done with the allergist and met again with her as we were done. We saw him but at the time had no clue who he was. He had joined our team before we even knew about it.

Besides him yawning through out the first 35 mins of the appointment he was great. Even though he was up to date with everything from our new allergist he listened to the histories.

He is convinced both children have an EGID. Some people would think this is extreme but all the symptoms fit a lower EGID. He listened to all our concerns and said he thought it was time to scope. I was relieved to have a GI who actually was as concerned about the children as we are. I asked for certain non-routine biopsies be performed to rule out secondary issues. He didn't even ask why, he just agreed! I almost fell off my chair. Our last 2 GI's were not like this, one had only agreed to do a scope because "Dominique is having such a hard time dealing with this" (of course this rubbed me the wrong way on many levels, my child is sick and you are ignoring it but anyways back to the new GI). He also accommodated our request to do the procedures in a few days because my mom was in town and could watch Heath. He then listened to our concerns about Hayls reacting to anesthesia medications and the colon prep. He willingly gave us alternatives. We didn't have to fight to get him to believe she could have a reaction to the surgical tape or anything else that we have had to fight to get Dr's to believe. He accommodated us and showed empathy.

On discussing the scopes he said that it most likely would not show anything because she has been on an elemental diet for so long and we are so careful with food trials. He said that would not change his mind about her having an EGID. Just that we have taken all the right steps and what we have done is mostly the right treatment for EGID. We knew all this already, but to hear it from a Dr was like some weight was lifted off my shoulders.

Since we have seen him I have sent many emails and he responds within a few hours and addresses my every concern. He has been better in the short few weeks than some of our Drs have been for almost 2 years.

Having an EGID is a life long battle, and it may mean being on elemental formula for life. It may mean only a handful of foods to eat along with this. It is grim but having a Dr assume the worse strangely makes it easier for us as a family because we have support. It feels better than a Dr saying "oh she'll out grow it by 1" you wait and that time comes and goes and your child still cannot eat any food. Then they say oh by 2, well we are just about at 2 and still only one safe food. So to have a Dr say I think this is the case and address all our issues and concerns is wonderful.

We still hope for the best but are cautious, we don't want to live in denial.

Afraid of sleep

Hayleigh is afraid of sleep, or that is the way it seems.

When she was younger and we were trying to figure out what was going on with her she would not sleep. Not during the day, not during the night. It used to take over an hour to get her too sleep sometimes two. We would have to feed her then hold her upright for about thirty minutes then try to rock her to sleep. Eventually when we did get her to sleep we would bring her tucker wedge next to or in our bed so we could pat her back or give her the binky every twenty or thirty minutes or on a good night every hour or two. I have no idea how we made it through those nights for over a year.

Now, at almost two, we lay in bed with her to fall asleep and on a good night she is asleep in fifteen minutes but most nights it takes thirty to forty minutes and some nights it can be as much as ninety minutes.

She keeps her eyes open as long as possible when falling asleep. She is beyond tired but won't close her eyes and it drives me crazy. Then I think back to those nights of her crying and not sleeping. I think why would she want to sleep if she knows she would wake in pain? Now we only have those nights when she is having a reaction or something is just not right. On average she wakes every three hours for 5 ozs of elecare and these nights are good ones.

Hopefully the nights of waking in pain are going to become far less common and one day she will no longer be afraid of sleep.

Stanford Appointments

Last week we had a full week of appointments for the kids. The one I was looking forward to the most was the one to see the specialist at Stanford who actually knew something about FPIES and everything else that falls on the non-IgE allergy spectrum (EGID's and enteropathies and everything in between).

I will admit to feeling a bit disappointed with our first appointment especially after having a few days to think about it.

We spent the first hour giving the history to a very eager resident. She obviously had read about FPIES to prepare for our appointments and knew all the "textbook" stuff (funny because I'm sure if there is anything about FPIES in a text book it would be very limited knowledge in more ways than one). She asked all the questions that spelt out she had never really seen a patient with anything on this spectrum. I held my tongue many times and was patient because I have been on the other side. I have been the student learning from patients in a hospital and eager to see in person what I had learnt about in the textbooks.

She then left and I knew she was going to discuss our cases with the Dr. and he would push her to come to some conclusions and bla bla bla. Well 35 mins later they finally came back in. At that point we were starting to loose it. Two children under 22months in a small room for over 1 and 1/2 hours was starting to get old.

The Dr came in and the first thing he said was "So what can I do for you?" (OK so rewind a few months back when we had an allergist who would not help us and that was the last thing she said to me before denying my children a referral to Stanford). So needless to say this totally rubbed me the wrong way. I quickly moved passed my frustration to try to figure out what he meant by walking in and asking us this question. Isn't he the Dr., shouldn't he be the one to look at the children's histories and tell us what he thought? I am still not to sure what to make of this.

I just responded by a short history and what we have done so far and other stuff that I cannot remember. He agreed that the next step would be endoscopies of the full digestive tract to rule out or include other findings (but my instinct tells me it may not shed much light on our situation, but if it does I will be very pleased!) and once the results are in we would most likely move forward to an in hospital food trial.

His next step was to ask us to pick a "convenient" food that has been previously failed to do the in hospital food trial. Well this rubbed me the wrong way also for many reasons.

1. There is NOTHING CONVENIENT about having children who cannot eat food and who gives a crap about CONVENIENCE if it causes your child pain. We don't care what is convenient, we want our children to be able to eat anything once it doesn't cause pain. So if someday they can only eat millet or quinoa and most people have never heard of these things I really don't care because at least they can eat SOMETHING. Dairy, soy, wheat and all the other foods we have failed I guess would be considered convenient.

2. T-cells in the GALT system take a minimum of 18 months to shed. Each time you eat the food that you react to the memory on the T-cell becomes more ingrained. The more ingrained the memory becomes the higher the possibility that even when the T-cells shed the reaction will occur again. We have not passed 18 months with any of our food trials (we would have for rice but she was exposed to it in another food we tried around 11 months of age). Some would say well you haven't reached it why not just do the trail. Well we have been trying to get beyond a baseline to a place of healing and gut homeostasis. Therefore a trial of a known allergen will set us back. Right now it may not be by too much because Hayls has had a few set backs but the idea of moving backwards just makes me feel uneasy, and it takes so looonnnnnnggggg to get back to baseline and pain free place for her.

3. He said he has never seen her have a reaction so this would give him the opportunity to do so and run any tests while the reaction was occurring. That it might give them an idea of where in the digestive tract things were going wrong. Not sure if I buy all this either, I still think it is more like "we have no clue what is going on so lets run the experiment again and see what happens" type of thinking.

4. Most of Her reactions are delayed so staying in the hospital 24 hrs may not show anything and then we are stuck at home with a sick child for days after.

He went on to talk about the kids maybe having some sort of enteropathy which means a reaction in the lower intestines which may be possible but most enteropathies from what I understand are outgrown by 2 to 3 and we are at 2 with only one food that she isn't always interested in. So hmmmmmm I think kind of unlikely and seems we are dealing with more than "just an enteropathy".

By now I am sure if you have gotten this far you are wondering why am I still entertaining this Dr. I am second guessing myself and I'm not sure if he is a good fit for us but at the end of the appointment I pushed him......

He kept saying that not much is known about these disorders and that all we have is the research being done but that the research was just that only research. That nothing is for sure. It was almost like he was constantly giving a disclaimer. Like he didn't know what box to fit the children in so he just had to tip toe around the whole issue.

I took the tests results from Dr. J in NJ for him to look at and see what he thought. I was hoping he would shed some light on them. He once again said the whole disclaimer stuff, but at that point I just gave him a summary of what I understood of the current research. I think he then realized that I was not going to settle for the disclaimer and he needed to give me something to shut me up.

At that point he looked at Hayls results for about the 3rd time, but this time really looked at it and said she may have some oral tolerance due to her IL-12 levels. I hadn't spoken of oral tolerance once during the appointment. I knew he knew ALOT more than he was letting on and I knew previously that he had done some T-cell research himself.

The only reason I am willing to give him a second chance is because of his knowledge of the current research. Not because I agree with his approach so far, but who knows maybe the second time around things will be different.

Wonderful support team!

It is easy to get caught up in the difficult and heart wrenching aspect of having two children with a chronic disorder.

However when you have a wonderful support network ( filled with parents and family who fly across thousands of miles to help, cousins and friends who listen day in and day out to your struggles, siblings who lend a hand, friends and neighbors who step up to help any way they can, friends on the other side of the country who call after what they thought was a sad blog to be sure you are OK, friends and fellow FPIES moms who listen and help even when their plate is fuller than it ever should be, friends who follow our journey and send words of encouragement and a husband who makes a thunder storm feel like a slight drizzle) things just seem a little bit brighter and life gets a little easier.

I am taking a break right now, right this moment. A break from FPIES, and break from all the medical jargon, the medical research, the constant thinking ......thinking...... thinking.........in this break my heart is filled...........

It is filled with joy and I am grateful for all that I have going for me, for the kids and for my family. We are blessed in many ways and FPIES just happens to be on our plate.

We have a great support team and we love each and every one of you!

Time flies when you......are busy with 2 FPIES babies

Almost a month has passed since my last post and so much has changed and yet so little has changed. Hayls continues to speak long sentences and sings songs even making up her own words to tunes she knows. Heath has turned into an active very loud 6 month old who shows no signs of slowing down or softening his screams at his sister. Hayls is slowly warming up to Heath and holds his hand and pats his head but won't let him touch her or won't sit on my lap if I am holding him. Life goes on with two kids under two and sometimes I fool myself into believing we are a "normal" family. Sometimes I even think of feeding the kids food.

Behind these seeming normal things my world is being rocked and shattered daily. Hayleigh is crying for "food" more and she knows that we don't eat carrots for every meal. Heath is getting upset when he cannot eat anything (We are yet to try him with food and I have no idea when we will). My heart is being torn to pieces every day in more ways than I can count but I put on a smile for the kids and move forward.

I am fighting daily.....still fighting for so many things...... such as something as simple as medication for my kids. Motrin, neither child can have it so the pediatrician and I have been going through red tape to get just the ibuprofen powder so I could provide pain/fever relief if necessary. Something as simple as Nystatin for yeast (which is causing Hayls incredible discomfort in many areas) needs to be compounded for them. Basically everything you ingest needs to be reconsidered, turned inside out and torn apart and then stripped to the basic ingredient to see if they can tolerate it.

Finally our battles with the Drs seem to be paying off and we have gotten approval for both kids to be seen at Stanford. We also have what seems to be a great allergist on board and we see a new GI next week but they still all tell us that they have no clue about FPIES and so much is unknown. Many questions follow, such as is FPIES just part of what is going on? What else is going on?

I haven't blogged in a while because I feel as if I can barely keep my head above water with the regular kid stuff, the FPIES battles, hubby traveling and the dog having seizures.

However, I continue to thread water and whenever I tire, my great support: fellow FPIES moms, friends and family help keep me afloat. You know who you are and I would not be where I am without you! Thank you for your continued support through these very though and trying times, thank you for everything!