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This is a blog for my son. He has a rare auto immune disease that causes his body to attack food like it would a virus making it impossible for him to eat most any foods with out getting very very sick. This is a record of our ups and downs, doctor visits and procedures. Our trial and error life of finding out what foods are safe for our son to eat and eliminating the ones that are not from his life.

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Thursday, February 21, 2013

There's a Party in My (Son's) Tummy!!

Things seem to be going well with the steroids minus the bumps in the road dealing with finding a suitable delivery method. The standard is Stevia or Splenda mixed with the Pulmicort but after doing some research I wasn't feeling okay with giving my son that much (8-10 packets a day!!) artificial sweetener that is so new that no one knows what the long term effects might be. So then we tried honey. The Pulmicort just needs to be syrup-y enough to coat his esophagus. He didn't really like the honey too much and he also started coughing and gagging a lot while using the honey so we decided to try Pectin after Dr L suggested it.
Pectin is used in canning to make jellies. It's not my most ideal solution but we are pretty limited. I'm trying to pick the lesser of two many evils here.
John get's the Pulmicort mixed with pectin twice a day. He can't eat or drink after for a while so I give it to him before nap and before bed. That way he's not being told he can't eat afterwards. He sleeps long enough most afternoons that by the time he wakes up he can eat with out worrying about washing away the medicine.

He is back to eating sweet potatoes like he never missed them! Boy does he love his "tay-toes"  We've also been trialing Bananas for 5 days now. He doesn't enjoy them yet but I didn't think he would ever willingly sweet potatoes, so I know better than to give up on them yet. Just like with the sweet potaotes, I'm putting the bananas in his bottle for now and if he doesnt have any reactions to them in 10 days (5 more from today) then we will work harder on getting him to actually eat them and enjoy eating them. 
Right now I think the biggest issue is that he expects sweet potatoes every time a spoon is presented and then he get's a mouthful of bananas and it's quite a shock.
We have been advised to introduce a new food every 10-14 days.
We are having a hard time picking the next food!!
John has a scope scheduled for early April to make sure the steroid is working. Anything under 20 eos and we will be happy!

feeding himself for the first time!!

On Tuesday of this week we were seen at the Marcus Autism Center. 
They did a feeding and oral motor evaluation on John which consisted of watching me feed him though a one way mirror and a therapist working with him to test his oral function. 
We were told his aversion is mild to moderate which is better than what we thought. Everything works like it should, he just lacks experience and exposure.
Due to this they think he would benefit from their day program.
It's 7 weeks of intensive feeding therapy. 8-5 Monday through Friday.
This means that John and I, starting in April, will be living in Atlanta. They will basically be teaching John how to eat. How to chew, how to sort food in his mouth, how to use his tongue to move food around. They will also be teaching me how to work with him at home as we add new foods and textures. 
To say I'm nervous and scared would be the understatement of the millennium!!
Please be thinking about us during this time. It's going to be challenging to for me and for John. It will be exhausting, intense, stressful, and new for both of us! Stretching us both way out of our comfort zones. 

Until then I'll be spending my time trying to get as many new foods on John's safe list as I can, rearranging appointments, making living arrangements, but most importantly spending time with Doug and my friends here in Augusta. 

Thanks for reading!

Monday, February 4, 2013

Meet the Team Part 2

Do you ever feel like if someone gives you one more, teeny tiny, little bit of information your head will explode? Like your brain just cannot handle even one more sentence?
That's how I've felt for the last few weeks.

Thursday was supposed to be a pretty relaxed day of packing and meeting with the pet sitter, but Sadie (our 4 year old corgi) had other plans. She decided to get something lodged in her throat, 10 minutes before the dog sitter was supposed to come over, and I ended up rushing her to the vet. By the time we got there whatever was stuck in her throat was gone but had left some damage. She's fine, after a shot of steroids for the swelling and antibiotics to ward off any chance of infection. 
After I got all that taken care of and calmed myself, it was time to start packing our bags and making sure we had all of John's medical records we could get our hands on: Pictures from previous scopes, allergy test results, therapy evaluations, anything that we had here at the house pertaining to John's health care.

John's first appointment was at 11 on Friday morning in downtown Atlanta which meant that we needed to be out the door no later than 8am. 
We arrived at Georgia Allergy and Asthma to meet Dr. S in plenty of time.
Dr. S planned to do prick and patch testing that day and see us back on Monday to look at the patches. We've never done it this way before. John's previous allergists have done prick on one day, then a week or more later, gone back and done patch. Dr. S. does prick testing on the arms because for some reason the back shows more false positives than the arms when doing prick testing. That's how he is able to do both on the same day. So John had 78 foods tested on his arms. The biggest problem with this is that when doing it on such a tiny arm they had to go one prick at a time. When it was done on his back they used a device that allowed them to do 5-10 pricks at once. So there we sat, holding John's arms out to the side while she pricked him 78 times, up one arm and down the other. John did really good though. He cried, of course, but as soon as she left him alone he stopped. He really doesn't like people touching his arms or head.

The results of the prick test were
Milk was bad enough though that Dr. S gave us an epipen but beef and pork looked about the same as they have been in the past. Milk was worse than last time.
So on to patch. They don't retest any of the foods John reacted to so there wasn't any milk, beef, lamb, or pork on the patches. Actually I don't even know what was on there really except eggs because she had a hard time getting that one on because John didn't want to be messed with and the food kept falling off the patch before she could get it on his back. 

Once all the patches were on we were done for the day. We headed to Doug's Aunt's house where we were staying. We had an uneventful weekend of trying to keep the patches on our highly active two year old's back. We went to a mall and the Aquarium. John really liked the Aquarium. He kept saying "pish! pish!" but I think the beluga whales were his favorite. 
Sorry I dont have any pictures! We took all video!!!

Sunday morning we took off the patches and took a picture to email to Dr. S
Monday morning we had to leave really early because of Atlanta traffic. Our appointment with Dr. S was at 9am. Driving through Atlanta rush hour traffic is no fun. We left the house at 7 and ended up being 20 minutes early. (I hear that's making really good time!!!)
Patch testing showed nothing!

Dr. S wants us to avoid all red meat for now to be safe. Also we are going to continue to avoid egg, wheat, corn and soy because John has reacted so strongly to them in the past.
That was a super short appointment only lasting about 15 minutes and we were actually out of there before our actual appointment time. So we had some time to kill since John didn't have another appointment until 2pm across the street. 
We met our cousin at the mall for some lunch and had some fun window shopping. She had presents for John, as usual, which I know made his day.

Then it was finally time to meet Dr. L. 
He reviewed John's records and scopes and already had a game plan ready to go over with us. I loved the way he went about it. Instead of saying  do this, do that, he said "here is what I recommend we do and here's how we will go about doing it. Are you okay with that?" 
"Are you okay with that"
5 words that had never been asked of me before.
This was our choice. We could chose to do this or not. It was not our only option.
This was huge to me. 
All this time I felt like we were doing the only thing we could do for John. That we were doing everything possible for him. We didn't know there were other options. Until last week.

Long story short.
We have a new plan. A whole new plan that opens up so many more doors for John.
We've started back on the sweet potatoes. Dr L is okay with John having a count of 9 with the sweet potatoes and so are we, and in two weeks we will introduce bananas!
Scopes will be less often and we will monitor John's EoE through symptoms mostly. 
Reflux no longer means a failed food trial for us because Dr. L believes that John's reflux may actually be a symptom of his Autism rather than the EoE and has increased his prevacid to help with that. 
We are going to be trialing foods a lot faster. This is a much more aggressive way of treating/managing EoE but it something we feel we need to do to avoid a feeding tube and to get John growing and thriving again.
We've started a very low dose steroid to try to raise John's base level of tolerance for foods as well. Right now we are still working on the right dose and delivery method but hopefully soon we will start seeing things improve and progress.

Another exciting thing about Dr L is that he also specializes in Autism! He works with the Marcus Institute and is doing a clinic on children with gastrointestinal issues, Autism, and severe oral aversion. John could be the poster child for this clinic! It feels so good to know that we have found a Doctor who "gets" John and everything he's dealing with. He is going to try to work us into this clinic so we can meet the team at Marcus and get John evaluated. It will get our foot in the door for treatment if they think they can help us. This is a HUGE thing! HUGE!

John didn't forget about his "taytoes" and is back to eating them like he never stopped. He's even trying to feed himself which makes this Momma very happy!

Thanks for reading!!