Thursday, October 31, 2013

Endoscopy #2 with a pH Probe...and a few pictures

We got results and are thrilled. Dr. Arthur called me Wednesday to let me know that Chloe's biopsy came back showing great improvement. Her eosinophil count had dropped from 150 down to 1. Only 1. Wow!!!!! This means that her diet is helping. The removal of all of those dang foods are actually working, along with the oral Flonase spray and for that we are grateful. Her esophagus is healing. Praise Jesus!
Her pH probe showed that she had 90 reflux episodes in a 24 hour period. Crazy!!!! However, none were in the night while she was sleeping. So what this means is that she does NOT have GERD (reflux disease) but she does have IBD - inflammatory bowel disease. Basically, her stomach does not close after she eats like it is supposed to. Instead it spasms open and closed which causes her food to go back up into her esophagus. So what we do now is we are giving her a new med that helps her stomach muscle relax and stay closed. It's a pretty gross medicine but she is taking it like a champion and again, I am so proud of her. She has taught me so much about perseverance and just sucking it up and dealing with it. Love her.

Yesterday was a hard parenting day. Chloe had to go to Vanderbilt Children's Hospital for another endoscopy to re-check her eosinophilic esophagitis and to have a pH probe placed down her nose and through her esophagus.

The point of these procedures yesterday was to
A) to recheck the count of eosinophils on her esophogus. Remember that a normal esophagus should have 0. A positive diagnosis has 15. She had over 150 (they quit counting actually once they reached that high because it was pointless - it was obvious she had a positive diagnosis).
B) to check the pH of her esophagus at baseline and when she refluxes to see if she also has GERD along with the EE or if she has some inflammatory bowel disease with it.

I will have the biopsy results from the endoscopy on Wednesday which will tell me the eosinophil count and will determine our next steps with food elimination or reintegration. The doctor has told us that we can begin to reintroduce some foods slowly which so far has gone horribly. We allowed rice back first as her favorite cereal bar has rice flour in it and that's what she wanted. After only having 2 cereal bars (in 2 days) she had 17 reflux episodes and horrible pain that left her rolling around in the floor and telling me it wasn't worth it and she never wanted rice again. WOW!!! It was painful to watch. So, we will keep that and dairy as a BIG no-no and try to add potatoes back next (she is dying for some waffle fries).

Anyways. back to yesterday...I had purposely not told her about the pH probe because she was already having to miss Storybook Character Day at school (costume day) and was VERY upset about that. She also was having trunk-or-treat at school last night so I KNEW that if I told her she would have a tube coming out of her nose that there was no way she would go because she would pre-psych herself up about it and get it all built up in her head etc... and it would not be good. My plan was to tell her about it after she woke up...that the doctor thought it best to put it in while she was in there so we wouldn't have to come back etc.

My plan back-fired as the anesthesia doctor rolled up in the pre-op waiting room and said "So Miss Chloe, you are getting an endoscopy and a tube put down your nose today and you will go home with it in but it's no big deal." Her and my eyes both got wide and I gave him the look that said "shut your mouth dude!!!" My friend who went with me and Chloe (since David was out of town on business) told him that Chloe wasn't aware about the tube and to not talk about it. After he was done, I had to tell Chloe about the probe. She cried and cried. She said she would be so embarrassed to go to the trunk or treat event and she didn't want to look at anybody...not even Brody because everyone would laugh at her. It was pitiful.

After calming her down about that, it was time for her to go back to the OR. That was awful too. She cried and begged me not to leave her. I prayed aloud for her asking Jesus to envelop her with his mighty arms and rock her to sleep while she was laying on that table. I reminded her that even though mommy had to leave her with the nurses that Jesus promises that He will never leave us and I showed her that He is always in her heart. I told her to remember that Jesus is our protector and loves us more than we could ever imagine and that He will be with her the whole time and when she wakes up that mommy will be with her again. And then I had to hand her to the nurses and leave my screaming child.

It was hell.

I've never felt so helpless before.

I needed Jesus with me too to envelop me as my baby was being put to sleep and probably crying for her mommy and scared to death with strangers..

However, she woke up happy. She woke up okay that the tube was in place. She did fine with the procedure.
bless her heart she was so incredibly drunk on anesthesia. slurring her words and all

AND...she went to trunk or treat!!!! She just covered the tube with a bandaid and the friends who asked about the bandaid...well, we told them that Dorothy got hurt in the tornado and had to have a bandaid :) We were able to hide the tube and the recording device as part of her costume! Check out my sweet little trunk or treaters.

several hours later ....

Wednesday, October 9, 2013

Having A Child With Food Allergies

Having a child with food allergies is tough. I have held back on writing about this topic because this is so new to our household and I am no expert on it at all. Actually, I am writing about it today hoping to get feedback and some ideas from other moms who have walked this path already.
Since birth, out oldest child, Chloe, has had issues with her respiratory system which has resulted in several hospitalizations due to asthma and pneumonia. We were always told that she would probably outgrow these things and they were likely just caused by environmental triggers. One night, after fighting with her about sitting still for her twice/day nebulizer treatment to prevent her asthma from happening I was talking with my sister-in-law who recommended a book called "What's Eating Your Child?". I read it cover to cover in 2 days and immediately removed milk from Chloe's diet. Within 1 month she was off all medications and didn't have another respiratory issue for a year! Now when I say milk, that is all we removed. We didn't remove cheese, butter, sour cream, etc... We only took away her milk because that is what she was having the most of. She was the kid who would drink 3-4 tall glasses of milk every single day - and more if we would let her.

Her respiratory system has remained under control off all medications with only one asthma exacerbation and one case of pneumonia in 2 years - sweet victory compared to how often we used to be in the doctor even ON meds.

HOWEVER, now we are facing the diagnosis of Eosinophilic Esophagitis which is caused by food and environmental allergies. Basically, Chloe's white blood cells are recognizing the foods she is allergic to as invaders and are attacking her esophagus. This can cause her esophagus to stricture (and eventually need to be dilated), can cause the cells to eventually turn cancerous, and/or can cause pain and severe reflux and vomiting (which she has now). She has tested positively allergic to

  • beef
  • potatoes
  • rice
  • peaches
  • peanuts
We have removed ALL of those things from her diet - which by the way I thought would be easy until I realized that WAY more things have rice flour in them than I ever imagined! We also started her on a steroid spray - Fluticasone - orally twice/day that is supposed to coat the esophagus and start healing it. And she takes an adult dose of Nexium for her pain and severe reflux. BUT...she is STILL not getting better.

So, now we have been instructed to remove ALL dairy from her diet for 7 days. And actually we are on day 9 as I type this. And this is where I need your help. I knew it would take a few days for the dietary change to start working so I didn't get to worked up when she continued to have quite a number of episodes each day, but then she seemed to be getting better having only 1-3 episodes of reflux each day. However, she then went back to having 6-8 episodes with NO change in her diet. No hidden dairy and no missing medications. I am SO frustrated! We were told to begin with that 30% of people who test negative to dairy are actually postively allergic. So my question I keep her off of it when I am not sure if it is making a difference? I am giving it a few more days and then her doctor told us to take her off of all wheat products as she was borderline allergic to wheat. UGH!!!! That is going to be hell for a 6 year old. I really may lose my mind then. How am I going to get a 6 year old to eat gluten free? Of course, I thought the same thing when I told her she couldn't have her beloved cheese anymore...or french fries...or rice cakes...and she has survived and had a great attitude 90% of the time, but it's hard when they see their friends getting to eat whatever they want and she doesn't get to.

I need advice from you other moms who have kids with food allergies. I needs some encouragement. How have you handled it when kids show up to school with cupcakes or cookies for the whole class and you know if your kid eats it they will hurt for the whole next day and roll around in pain? How do you not worry when they aren't with you for meals? UGH! Parenting is SO hard.