Wednesday, April 27, 2011

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.

Sunday, April 24, 2011

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.

Friday, April 15, 2011

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!

Thursday, April 14, 2011

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!