GAPS

We have been very busy since coming home this summer. The main reason being we started GAPs with the kids. It stands for Gut and Psychology syndrome and is an old theory revived and reviewed by Dr. Natasha Cambell McBride in the UK. In short it talks about the connection between an unhealthy gut and different psycholgoical syndromes. However in this book she also addresses how to heal the digestive tract of people with non-ige food allergies, or sensitivities as she refers to them. An imbalance of gut flora can cause allergies which can then cause psychological and neurological problems. Hence the term gut and psychology.

We started very slowly in august on the GAPs intro and will continue to move forward slowly. We started by introducing chicken broth, then lamb broth, beef broth and now goat broth and lamb meat. We are ecstatic to have 2 foods for Hayls and Heath (he passed carrots over summer). Our goal for the year was one more food for Hayls and we have reached it (hopefully we exceed it). Not to mention the 4 broths they are both having. We will move forward with rabbit, pork and duck. Once we can find good sources (ensuring the meats are grain free) we will add more varity of meats.

It is so exciting to be able to FEED the kids. We have hope again!

Happy Birthday!

Hayleigh turned two this summer. Her party was cancelled at the last minute and we flew to Trinidad. A day later she turned two. In light of everything going on celebrating was far from our minds, but we needed to at least let her have fun.

My cousin and I went out at lunch time and we got a few gifts, balloons, party hats and we even found a birthday candle in the shape of a cake! So we wrapped up the gifts and made a tower "cake" and put the candle cake on top. She loved it when we sang happy birthday for her. She smiled the whole time. It was great and she enjoyed opening her gifts.

Hayleigh turned two! Two years of many unknowns, of many ups and downs. Two years that I sometimes thought I wouldn't survive. Two years of caring for a child with special needs but yet no Dr. knew what those needs were. Two years (and counting) of sleepless nights (yes she still wakes at least twice a night). Two years of worry. Two years of wiping away tears, too many tears for a two year old. Two years of working overtime to turn that frown up side down.......to see that beautiful smile shine. Two years of watching our little girl overcome hurdles that most children her age will never face. Two years of being mummy to the best daughter any one could ask for. We love you Hayls and we wouldn't change the past two years for anything! Happy Birthday.

A little support can go a long way

Visiting Trinidad has given me a break from the constant drain of Dr appointments and living and breathing PI/EGID. The children have been given the opportunity to spend time with our families. It has been very different from our daily routine but a welcome change.

The support we have received here has surprised me. People ask questions, but they listen and they have showed empathy. Only once or twice have we had eyebrows raised or someone say something stupid like "just feed them they'll get over it". Most people have no clue the extent of the way our lives are affected but some are willing to learn.

Simple things like Hayleigh sharing her toys with children I don't know makes me cringe. This weekend gone we were at a beach house with some of my family. There were two other families there that we did not know personally. One daughter was playing with Hayleigh's my little pony toys and decided to spray Off (insect repellant) in the hair. Luckily my mom saw it all happen and washed the ponies after their visit to the hair dresser. But the mother was understanding and the kids knew ask to play with the toys after that.

Close family have paid attention and helped me keep the children safe while on our visit. This has been the best gift ever. To know that you could run to the bathroom or eat without freaking out during a family gathering.

However something that made my husband and I feel like we could continue trodding on our journey was getting an unexpected little pat on the back by a couple we had never met. They have two older kids themselves and made it their duty to give us support and encouragement. You do what you have to do for your children but having it noticed by someone you have only just met and receiving support lifts you up and re-energises the spirit.

Life is too short

We were enjoying a trip to Disneyland with the kids, my parents and sister to celebrate Hayleigh's second birthday when I got a call from my cousin. Her mom who is my mom's sister had a stroke and was in the hospital. We got home that night and we thought things would maybe be ok with her. The next day we set off to Stanford for Hayleigh to have an appointment with one of her specialist. I left the baby bag outside with my parents and went in to the appointment. While in there a little girl had a horrible reaction to eggs while doing a skin test and they had to call 911. We were inside for about 2 hrs. After the appointment we got some lunch and I checked my phone. Things were not looking good and my aunt was now in the ICU. At that moment, on a sidewalk in Palo Alto it was decided we were all (my parents, sister, the kids and myself) flying home to Trinidad as soon as possible. Things turned crazy as I had a few hours to get the kids packed, their medications and formula and other special needs together. Emotionally we were....well we just were.
It feels as if I have been in a dream since then, more like a nightmare. Life is just to short and sometimes we just can't sweat the small stuff.
Right now things such as me waking 6-8 times a night to feed a baby and toddler, my children not being able to eat food, dealing with EGID's constantly and all the other things just seem to be on the back burner. They should be, because they just cannot compare to loosing a loved one.
The kids each had a few reactions during this difficult time and each had one or two sleepless nights. But how do you keep telling people you don't even know to wash their hands and mouths while trying to be there for your family during times like these? I needed the help, the hands to hold a baby or play with a toddler while I was busy. In the end they were both fine.
Almost a month later the dream seems to continue, but how do family members find the new normal after a loved one has passed? I guess it just happens and life goes on. We somehow find the strength to move forward.

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.