Tuesday, June 30, 2009

So Far, So Good

Well cantaloupe is going great! Yay! She loves it and has been perfectly fine with it. We also got through two parties last weekend with no problems. That's always a relief! Lola seems to LOVE opening gifts. She was right up in the action while her brother was opening his. Soo I figure, as long as she has gifts to open at her party, she doesn't need a cake! Okay really, she wouldn't notice the cake thing anyway, its more about me. I will be able to enjoy watching her open gifts.
Tomorrow we go back to the GI doctor to talk about her shake episodes. This is something we have been monitoring and keeping close track of with her regular pediatrician but I now think its actually more of a GI issue. Her Pediatrician was having us keep track of them and if they didn't stop, we was going to have her tested for seizures. For some reason, I really felt like its not seizures but I also felt like it wasn't your typical baby twitches either. Of course it has been impossible to get any of these episodes on video. I am anxious to see what the GI has to say.

Thursday, June 25, 2009

Lola LOVES Cantaloupe/Crumb Anxiety

We gave her cantaloupe yesterday and I really hope it works out because she LOVES it! We have been waiting a little longer to trial a new food because of her last reaction to bananas. At least she does do really well with avocado, so that's a great food to have on her side. Nice and fatty too.
Her brother's birthday party is this weekend at our house and I have to admit, its a little stressful thinking about all those people and food. I believe I am starting to have Crumb Anxiety. Lola crawls around and loves to "treasure hunt". It will be fine, I am going to have designated food areas and everyone will be aware. It will be fun though!

Monday, June 22, 2009

Lola's Emergency Letter

This is the basic letter we carry for Lola. We keep them in her bag and anyone who may watch her carries one. I am blocking some personal info but this is the rest:

Dear Doctor (To Whom It May Concern),

The patient named above has a food allergy called FPIES, Food Protein-Induced Entercolitis Syndrome. This is a type of allergy that usually does not result in typical "allergic" symptoms such as hives or wheezing, but rather which isolated gastrointestinal symptoms.The symptoms of this type of allergic reaction include repetitive vomiting that may not start for a few hours (e.g., 2) following ingestion of the food to which the child is allergic. Even trace amounts can trigger a reaction. There is often diarrhea that starts later (after 6 hours). In some cases (~20%), the reaction includes hypotension and lethargy. The treatment is symptomatic and can include intravenous fluids (e.g., normal saline bolus, hydration) and steroids (e.g. Solumedrol 1-2 mg/kg) for significant symptoms. The latter is given because the pathophysiology is that of a T cell response.This information is being given so that this could be considered in the differential diagnosis of this patient in event of symptoms.
Of course, this illness does not preclude the possibility of other illness (e.g. infection) or even other types of allergic reactions leading to symptoms, so it is up to the evaluating physician to consider all possibilities. Similarly, the treating physician is encouraged to pursue any other treatments deems necessary (e.g. symptomatic such as epinephrine for shock, antibiotics for presumed infections, etc)

Friday, June 19, 2009

A Short Version of Our Story

I am just cutting and pasting what I wrote a while back. I still dont have the long version finished but this gives you an idea of how our journey began. I should also add that I love run on sentences, sorry in advance!

. My daughter Lola has FPIES. I am halfway through writing our full story and will share as soon as I finish. The short version is this. Lola was born Aug 12 08. Everything seemed fine at first. She was formula fed right away, and caught on like a champ. We started her on Enfamil Lipil. We left the hospital at the 24 hour mark because we were doing so well. When we got home she started spitting up a lot. Then that night the spit up turned into puke and lots of it. The next week things seemed to get worse. She was very very fussy and spent most of her time screaming. I took her to the regular Ped and we put her on Enfamil Gentlease. He told me to stick with it for a couple weeks so it had a chance to work. During these weeks we moved across the state as planned. So I found a new Ped and had an apt for her 1 month well being check. But days before her apt, she started getting a bad rash on her bottom. It wasnt your typical rash but more of just raw patches. No matter what cream or ointments I used, it wouldnt go away. Lola was getting more miserable everyday. Her bottom was just flesh and blood. I couldnt wipe her only rinse her. I took her to the Ped and he couldnt believe how bad it was. He said it was more like burns and gave us a script for a strong burn cream. He also thought she had some reflux so he started her on Zantac. Nothing helped, she got worse. She was always starving no matter how much she ate and had very foul smelling mucus diarrhea about 15 times per day. She was lathargic and what I can only describe as empty. She slept and if she was awake she screamed, a painful scream. She ate a ton and was still so tiny and pale. I knew something was very wrong. The Ped sent us to a Pediatric GI who agreed something was very wrong. We started on Nutramigan, but it didnt change a thing. She started to lose weight. She had an Upper GI and small bowel, that lasted 10 hours, they couldnt believe it. It made no sense. But her insides looked fine. She kept going downhill. We ended up in the ER at our Childrens Hospital often. She would spike a fever go completely white and just roll her eyes. They would do bloodwork and by the time the results came in, she was be better enough to go home. No answers though. One time she went to the regular Ped and she was not well and he told us to go to the ER right away but again no answers. At this point I was collecting samples from every diaper for testing. I had to line her diapers with plastic because there was nothing but liquid. At that point the GI told us CF was a possiblity and she needed a sweat test. The sweat test came back negative, only to learn that sweat tests arent always acurate and she would need full panal bloodwork and that would take a few weeks. She had an endoscopy and flexible sigmoidoscopy, and her insides looked okay. THen she had a stool elastace test and we got our first bad test result. Her enzymes were severly low. So they started testing for different diseases that could cause those results. In the meantime they did another stool elastace test and it came back normal. We were so confused. The GI promised he would do his best to figure this out and if he couldnt, he would find someone that could. She lost more weight, it was time to have her admitted to the Childrens Hospital and start serious testing. She had every test you could imagine. Ultrasounds, MRIs, lots of blood, a 48 hour fecal fat test, consults with lots of different types of doctors. They also increased her calories and fat in her formula to help her gain weight. Tests kept coming back negative and I would be relieved but at the same time, just ready for an answer. I forgot to mention that before the hospital the GI put her on Neocate and her butt healed but she was throwing up a lot and not gaining weight still. So at the hospital they started her on Elecare. After a few days, it was like someone took my baby and gave me a new one. I cannot begin to describe the change. She started thriving and became this happy smiling baby, I had never seen before. I cried the first time I changed a normal poopy diaper. She had never had normal poop. I knew my baby was sick but to see her doing so well told me how sick she really was. So thats when the GI talked about FPIES. We finally got into a Allergist that gave us the diagnosis of FPIES. Since its mostly gastrointestinal we see the GI as well as Allergist.

Tuesday, June 16, 2009

Our GI Apt today

Okay so we had Lola's GI apt today. I would say it went well. She is 18 lbs now, so that's great! The nurse said she couldn't believe how different she looked. She has really filled out and now looks just how a baby should look!
We talked about the different foods we have been trying and how unclear the results can be. I knew this process would be a challenge, but I had no idea how confusing it would prove to be. Basically, I am doing things just how I should, VERY slowly. He reminded me that the Elecare is all she really needs nutritionally and that should would be just fine with that alone. She does LOVE her Elecare! I am very thankful for that. I am not exactly thankful for 50 bucks for a 14oz can, average 2 cans a week, but I wont get into that right now. Maybe later!
So I have come to the realization that a birthday cake just isn't going to be an option for her at this point. I am trying really hard to not let that bother me(it still does). I keep reminding myself she doesn't know any better and her health isn't worth a small 1st Birthday ritual. I am going to have to get very creative with what few foods she can have. And maybe to make it easier on me, I will get her an extra little gift or something.
So nothing major, which is always good! We are just taking it day by day and I thank God everyday for that chance!

Jumping Right In

Okay, I am going to give a quick brief and then jump right in.
My daughter Lola had a very rough start after she was born, August 12, 2008. It was a rough road but she was finally diagnosed with FPIES, Food Protein-Induced Enterocolitis Syndrome. I will write about what it took to get the diagnosis when I get a chance. I am also new to this blogging thing, so forgive me! I figure its a good way to keep family/friends/Other FPIES Parents updated.
So anyway, Lola has a GI apt later today and we have a lot to discuss, so I am pretty anxious. I will try to update tonight.