Our story........

I have three of the cutest kids you have ever seen. Jaxen 5 Tieler 3 and Boston 8 months. I have started this blog mainly for me, to be able to vent, cry, share, brag, and help myself and others families that are in the same boat. After YEARS of struggling, doctors, specialists, prescriptions, hospitalizations, Test after test. We have a diagnoses. Eosinophilic Esophagitis. I hope in sharing our stories, struggles and triumphs we can connect with one another.
So here goes... I will give you the shortened but still long version starting in 2005. Jaxen, the sweetest most loving five year old. My sunshine... Reflux baby, diagnosed with Asthma at 8 months, GERD, "Toddlers Diarrhea" ( when they don't know why...) Milk intolerance, chronic ear infections led to tubes, severe outdoor and pet allergies, But always happy, good sleeper, good eater, who literally ate anything you put in front of him. UNTIL..... around age 3 1/2 Jaxen began getting pickier and pickier I chalked it up to age but slowly over the next year and a half he completely eliminated all but five foods from his diet, My happy baby also seemed to be very anxious mostly associated with meal time. We had tried everything you could think of to just get him to eat. I complained to the pediatrician and begged for help. He also had begun vomiting, constantly in the mornings always. I thought at first it was car sickness. until it began happening on a weekly sometimes daily basis. I was tired of both Jaxen and myself leaving the dinner table in tears. Nothing worked. He is such a good boy, listens to me, does everything I ask the only thing we ever battle over is food, why? Finally the pediatrician had him come in for a well child check to address all my concerns. Jaxen's growth had gone down 45% in the last year. This was cause for concern and off the Gastroenterologist and feeding specialist we went. First we saw the feeding specialist diagnoses: Severe childhood eating disorder who needed feeding therapy and the Gastroenterologist who said possible EE. And that's were we are at today with Jax.
Tieler our princess, my singer, dancer, tiny and tough, my angel...... Tieler was born in June 07. She weighed in at 5 lbs 2 oz she was alot smaller than they thought she would be. Tie seemed healthy though until we got home. Tieler would spit up everything she ate. Her first hospitalization at 1 month for possible Pyloric Stenosis. Negative but a significant case of GERD. Our 2nd hospitalization another month later for inability to maintain weight and projectile vomiting. Third hospitalization another 3-4 weeks later for C diff which I guarantee she contracted in her previous hospital stay. Tieler was so sick and was very close to a feeding tube after about ten days at Primary children’s she finally began to keep in about an oz. of formula. When we finally left the hospital. Tieler was 5 months old and weighed in at 9 lbs 1 oz. this hospital stay was followed up by allergy testing. The findings were positive for Milk, egg, wheat, peanut, and tree nuts. We had been poisoning her... Tieler grew slowly she was on Nutramigen which she could tolerate, and very little food. Tieler didn't sit till 11 months and didn't walk till 17 months. She had global delays but was finally doing ok. Tieler had a physical therapist and then speach because she didn't talk hardly at all. Her immune system sucked and she like Jaxen; got sick all the time. At 18 months out of the blue Tieler had a massive seizure. Sleep deprived EEG was normal her therapist continued to express concerns they felt Tieler was having absence seizures. Again we had no answers. As she grew she continued to add on food allergies. They changed, came and went, and continued to restrict her in so many ways. During the fall of 2009 we started to notice randomly that she had symptoms of asthma, but it was so different than Jaxen’s I had spoken to the allergist who gave her a script for a flovent inhaler and I didn't open the package. It was rare and so different from Jaxen that I assumed it was me being paranoid. Was I ever wrong... In Dec. 2009 Tieler had a massive asthma attack and stayed in the hospital for 4 days then went home on oxygen for two more weeks. Since then Tieler had another seizure in school this time, and seemed to be complaining almost constantly of stomach aches, and throat pain. She has had SEVERE excema since birth and I just knew I had to put the pieces together. So I started researching again. To me it all had to be somehow related... and most of it was. I found some pages on kids with EE and I knew from that point on I had found it.


Sunday, February 20, 2011

YES!!! A Pumpkin Choclate Chip Muffin! And it is soo good!

This morning we made Pumpkin chocolate chip muffins! And they are delish!

Heat oven to 350

1 Cup canned pumpkin
1/3 Cup Oil (Canola is soy free...)
1 Cup Sugar
1/4 Cup Rice or Hemp milk ( soy too if you can tolerate it)
2 Teaspoons Vanilla
11/4 Cup Flour ( we use "Megans" flour mix I will copy and paste it below)
1/2 Teaspoon of Baking Powder
1/2 Teaspoon Baking Soda
1/2 Teaspoon Cinnamon
1/4 Teaspoon Salt
3/4 Cup of Semi Sweet chocolate chips ( Enjoy life brand at Harmons is soy free too! yay!)

Add Pumpkin, oil, sugar, milk (whichever you use) and vanilla. VERY slightly mix together.
Then add Flour, Baking Soda, Baking powder, Cinnamon, salt, and chocolate chips.

DO NOT BLEND... Again very slightly mix together, fill muffin cups and cook for 22-24 min. Makes 12 I cant believe everything that is left out of these for how good they taste! Love Them!!

Megans Flour mix I copied from her blog!
1/2 c brown rice flour
1 c sorghum flour (or chickpea flour)
1 c tapioca starch
1 c potato starch (or corn starch or arrowroot)
1/2 c quinoa, millet, or amaranth flour
3/4 c sweet rice flour

add all and blend in food processor.
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Friday, February 18, 2011

Over due post...

Where do I start? The last week and a half has been a crazy one. RSV is here and everyone but Gary has had the horrible, (and I Mean HORRIBLE) Flu. So I havn't had as much time to post about the tests and such also happening in the midst of the flu...On Tuesday Jaxen had his scope. We were worried it wouldn't happen because his asthma has been bad. We did not do the prescribed round of steroids because we wanted to get the most accurate results we could. Jaxens anxiety about the dr the past year has made us prepare for certain situations a little better. We decided to give him some verset before the scope so he would be relaxed. Not only was it aqward to see him so out of it but slightly entertaining I must admit... It went Perfect. He was happy as pie no explosion of petechia, sobbing, screaming, or fighting. Instead he was giggly and waved bye at me as they took him into the procedure room. What a difference it made for us both. I am so glad we did it that way. When Dr Harnsberger came out she said the pictures actually looked great much better than Tielers. but she wanted us to wait for the biopsy. This morning she called with Jaxens results. 15! Only 15 esoniphils! GREAT! So does he not have it? I guess having zero is normal but because they are so low and not damaging his esophagus we don't need to do the elimination diet like Tieler is doing. Instead we need to remove the allergens ( beef, chicken, corn, and white potatoe) along with avoiding as many of his environmental, pet, and dust allergens as possible. That is not all she continued to say...(boo) They also discovered Jaxen has a severe enzyme deficiency. A Lactase deficiency I guess some people with a lactase or lactose intolerance have a number of 24 or up to 58 she said Jaxens was 1.9 (non existent) I think 60-70 is normal. She said he did have some damage in his stomach and intestine from the fermented un digested Lactase. So we MUST completely remove lactase from Jaxens diet as well. And give him some supplemental nutrition as well. Hopefully for Both Jaxen and Tieler it won't be a permanent requirement. I just want to get them well. Completely changing their diets and medications and caring for their medical needs is overwhelming, I feel like I am in quicksand and I'm always right underneath the surface with and arm out or something... This week as been paticularly hard as well because of the Flu. We don't do flus well her there is no simple runny nose at our house. Poor baby Boston is the most effected. Poor guy will soon be getting ear tubes like his big brother and has been getting Rocephin shots all week. He has been going in to the suction clinic sometimes twice daily. Hopefully it will keep him out of the hospital! He is still so sweet, even though he is miserable. I am so lucky to have such a cake baby.
On a more positive note.... I have found a super easy delsih pancake recipe at whole foods that Tie can eat! Jax can't because of the potato starch in it but it is called "Gluten Free Dreams" The brand is Cherrybrook Kitchen. I knew they would be good just smelling them cook. They are great! You just add rice milk and vegetable oil.... Worth every penny! Here is the website. They have tons of foods for kids with allergies... LOVE it! http://www.cherrybrookkitchen.com/
ALSO.... the Choclate Hemp ice cream at Harmons rocks... tie totally Digs it!
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Wednesday, February 9, 2011

Another day at the allergist...

Today was rough. My poor Jaxen has so much anxiety. We planned on the allergist today to do some expanded testing on both Jaxen and Tieler. I fought with Jaxen this morning to get him to eat a whopping six mini pancakes... I felt bad because only 30 minutes later he threw it all up. Feeling defeated by 9:00 am is never a good thing. When we got to the allergist Jaxen went first. He lost it. It took me and my mom to hold him down while the nurse moved as fast as she could pricking his back. It is painful to watch and obviously painful to be the one getting pricked. He freaked out so badly that he had broken blood vessels (petechia) all over his eyes for head and temples. :( I felt terrible. Still do every time I look at his little face. Hopefully they go away soon! As for the allergy test.... Jaxen tested positive for Chicken, Beef, Corn, and white potato. Corn is so sad cause it is in everything especially everything that is sweet. Candy is my bargainer not for long...He is suppose to be getting his scope done next Tuesday. He is having a flare up of his asthma and the allergist insisted I give Jaxen some prednisone. I am not going to do it though; I am hoping that nebulizing can get him through it. If we give him the steroid it will be months before we can scope again. We just can't risk it. The GI said do not give him the steroid, to wait till tomorrow morning to talk to her. Hopefully we have some other options cause if it is worse they won't sedate him anyway? I hope were making the right decision. He told me last night that food didn't make him sick but it just got clogged in his throat. :( How sad is that? Tieler also had an eventful day. She is doing well asthma wise... Her skin is doing alright it could still use some improvement but it's not horrible. She tested positive for some new allergies today too. The most upsetting was SOY! She has always tested negative for soy. Always... and today positive along with chicken, oranges, and oats. So her new allergic list after today is: Milk, eggs, peanut, cashew, pistachio, hazlenut, rhye, oats, black walnut, oranges, chicken and Soy. Wheat still said negative. I was feeling like wheat was a culprit for the high numbers on her scope since she had a prior positive prick and RAST for wheat but it has shown negative since she was 18 months. So maybe it is the large amount of soy and chicken? Who knows EE is crazy and it changes all the time! I came home feeling like crap. I need to pull myself out of this slump so I don't rub off on my poor kids that are the innocent victims of EE but my heart hurts. We have a month of hell before us. I already feel done.... We decided we MUST move. I love my home I feel safe. It is clean, and big, and beautiful. We cannot afford it though- with the new cost of the supplemental formula and the medical bills. We have been looking like crazy the last few days and there is nothing out there. I feel hopeless. Tomorrow is a new day. I hope it is better than today. BTW, I am so lucky to have kids that aren't full of Cancer. A warm roof over my head, a husband who loves me and is going through this every step of the way by my side, My awesome and amazing mother... wow I can't say enough about her. She is the best mom ever!!! And my GREAT FRIENDS and FAMILY. Reminding myself of the positive things is helping me right now... I am surrounded by LOVE. Thank the lord. It is what will get us through this!
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Tuesday, February 8, 2011

SPRINKLES......


BEST IDEA EVER...... SPRINKLES! So... We have been attempting to get Tieler to eat Applesauce since it is now one of the few things the can eat. She doesn't dig Apples in any form. Never has really. Who doesn't like applesauce! Well I was trying to think of ways to get her to eat them I thought... hmm I need to make this look more appealing... And SPRINKLES came to mind! I let Tie pick out whatever sprinkles she wanted... sugar sprinkles in all different colors. She has been absolutely thrilled to eat every bite of her applesauce now. She also covered her banana and her french fries as well (gag!) but she ate so much more! I felt so relieved...I guess a spoon full of sugar helps the applesauce go down! You can even make them yourself! A little food coloring, sugar, shake and you have sprinkles... We also had a great pancake experience... I got the Gluten Free Bisquick, used some Ener G egg replacer, Rice Dream, and applesauce and Wah-la.... They tasted like pancakes too... Real pancakes!! I sure hope Tie isn't allergic to Corn cause she has had some corn products in the last few days. Dr Bitner our allergist is doing a broader panel on both Jaxen and Tieler tomorrow. Should be a Shitastic day! One full of skin pricking, Tears, more tears... and hopefully so new things for the kids to eat and to not eat! Off to bed. I am getting sick again... Lost my voice. Booo! :(
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Saturday, February 5, 2011

Tieler was diagnosed with EE on 2/4/2011 her Eosinphil count was 77. And that was on an already restricted diet of milk, egg, peanut, rhye, cashew, black walnut, pistachio, pecan, and hazelnut. And here we are... Jaxens is getting scoped on 2/15/2011 and tie starts her diet and meds tomorrow. I am devastated I guess. I wanted answers so so badly. I have them yet I feel just as terrible. Inadequate, and overwhelmed by the Cost. The emotional and physical cost, and the financial. It is still so new to me. Like a fresh wound. I am still crying, feeling sorry for my children and myself. Wanting all the answers and to just feel for a minute like I can make a happy and normal life for them. And I am scared. So so scared, of trying to find the money for their treatment. How do I teach them at this age that there is so much more to life than food when everything is centered around it? How do I make them understand what is happening? I feel like there is so much that I don't know! And feel like I am questioning my ability as a mother! I want them to have it all. Feeding tubes... OMG I can't imagine having to go that route I am absolutely mortified at the idea.... But getting my kids to even eat this restricted diet is my biggest and first battle, and I am freaked! One day at a time is what I keep telling myself. And I hope to god I can do this and do a good job. My kids are my life. Sickness is not new to us, but EE is. I would love to talk to anyone who knows these feelings, has advice, something to share? a recipe? feel free to email me! I would love it! Thanks for listening.
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