About Me

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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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Monday, May 21, 2012

We're in the paper!!

We are on the front page of the Metro section of the Augusta Chronicle and on the home page of their website!

The health reporter came to our house with a photographer on Friday morning. 
He seemed to know a little bit about EoE and he knew what he wanted to hear more about or have elaborated on. I felt like he did a good job of guiding us and keeping us on track during the interview. There were a couple of misleading statements and I wish he had mentioned that John will not grow out of this as that is always the second or third question I get asked.
All in all it was a good experience and I think the article turned out wonderfully.
The pictures are great and I'm going to share the majority of them here for you!

We also had a weight check to day

Drum Roll Please......

19.45 lbs!!!!!
This means the has jumped from the 3rd percentile to the 5th!!!!
We were worried about his weight dropping off when he started walking but so far so good!!!

Thursday, May 17, 2012

Augusta Chronicle

I totally forgot to post about what's happening tomorrow!!!

So I've been trying to get the local news stations to pick up John's story to raise local awareness about his disease so that no other family has to go through what we went through for 10 long months. The local Fox station has thus far ignored me completely, with out even the courtesy to respond to my email with a polite "I'm sorry but we're not interested". So, after some advice from a few friends, I decided to contact the news paper. 
I sent an email to the health reporter at the The Augusta Chronicle telling them about John and how I wanted to share his story. I also mentioned that it was Eosinophil Awareness Week, hoping that it might help. 
They wrote me back in a matter of hours.
He said that he normally does not do awareness weeks or months because every single week there is multiple causes claiming them. I know this is true because the same week (this week!) as Eosinophil Awareness is also Food Allergy Awareness. 
However, he said that he did consider John's story interesting and that he thought that it might make a great story on it's own and when would I be available for an interview!!
I gave him my phone number and I swear I hadn't even let go of the mouse after hitting send when he called me!! He is coming with a photographer to the house tomorrow morning at 11 to interview me and Doug!!!
I don't know if they will run the story or not but I will for sure leave a link here and on my Facebook page when and if they do!!
Time to finish cleaning house and studying up on EE facts!!

Patch Testing

Allergy testing!!! Seriously, No fun! I've had a prick test done and while it doesnt actually hurt, it's not pleasent either and I was an adult when I had it done. I can not imagine how my baby must have felt at 11 months old getting that done and then again this year.
So we had another prick test done last month with a new allergist and he only reacted to beef and milk.
This new allergist does a second round of prick testing using real fresh food in place of the serum because EE kids react differently to the tests. He also does a patch testing using fresh food that stays on the skin for 48 hours and is then evaluated after 72 hours.
John had both of those this week.
Dr. G. tests the foods that John "passes" on the previous test, so whatever John did NOT react to on the first prick got tested again with real food. He did not react to any of them so all of those foods were put on patches on his back for 48 hours.

So these were put on his back on Monday morning and I removed them on Wednesday morning, careful not to rub off any of the makers, then took a picture to email to the allergist.

When I took off the patches I saw.....

the only redness was from the adhesive....

Our appointment for Dr G to look at them was today at 1pm. I got John up and dressed and checked out his back. Still nothing. Not even a little redness...
 I want to say I was happy about this but I wasn't. I was very disappointed because no reaction tells us NOTHING! Just because he doesn't react to an allergy test does not mean that the food is safe for him to eat! If he reacts to nothing on the test that just means that we have more to trial, not knowing how his body will react. At least a reaction on the tests gives us a narrowed down list of things to try first with the highest probability that the first few foods he trials will be safe.
So an hour and a half later we get to Dr G's office. He pulls up John shirt and there is a BIG red spot on his back! The exact shape and size of one of the patches! He had a reaction!
He also had some smaller reactions that I didnt notice, apparently.
He tested positive to beef, soy (the big one), and oats.
So now we know not to trial milk, beef, soy, oats, strawberries, navy beans, or english peas first.
We are going to send some blood work out to test for the other foods that he has previously passed like corn (that I'm 95% sure he's allergic to), rice, peanuts, and eggs. Once we get all that back from the allergist he will give us a list of foods that should be safe that we will take to the dietitian, who will make a meal plan for John supplemented with formula as needed for total nutrition.
We will stay on that diet for 6-8 weeks before having another scope done to see if John is okay on those foods, unless John has any symptoms.

Now, I'm not familiar with the food trail protocol but I know we will become experts soon enough, so I don't know exactly what we do if he starts having symptoms while we are trialing more than one food. We will get all that information before we start and I have a WONDERFUL resource and support group full of the most amazing women and mothers I have ever met! They are the trail blazers for EoE and have done all the grunt work, and found out what brands are safe and what to do when things go wrong. They have figured all this out the hard way, by trial and error. Because of them I don't have to do that. I don't know what I would do with out them. They have been my safe haven and my life line.
Thank you girls!

Wednesday, May 9, 2012

New words and cloth diapers

I wanted to do a super short and sweet update with a list of John's words he is currently saying or attempting to say.

"Ball", everything is a ball right now.
"Ow", which he says every time I hit a bump in the car now...
"bubble", I didn't even teach him this one! I asked him if he wanted to take a bath and he responded with              
        "bubble?" I said "sure buddy, we can do a bubble bath" And he's been saying it ever since.
"DeDaddy" is what he calls Doug. He get's super excited too!

We are trying to get him to say "car" but it comes out "glar" and he has said "bottle" a couple of times but is not consistent with it. He also said "more" today but again, not very consistent.
I am doing the signs for all of these words and trying to get him to but he's not picked up on it yet.
Words we are working on are "milk", "finished", "car", "more", "bye", "mama", "please", and "thank you".

We also have started testing out cloth diapers! I think they are adorable and worth the trouble. I'm still trying to convince Doug. :) Also, John has yet to poop in one so ask me again after that happens! Here are some pics of my adorable little cloth butt!

Sunday, May 6, 2012

Allergy, Therapy, Developmental Pediatrician

Sorry it's been so long since I last updated this blog. It's been crazy here at the Hemme Haven. 
So much has happened I dont even know where to start. I guess I'll try to start where I left off last time. 
We were under the impression that we were having patch testing done at this visit but Dr. G wanted to re-do the prick testing in his office and I was totally on board with that considering how often EE kid's allergies change. So we re-did that and John only reacted to Milk and Beef!! They were whoppers on his back but still! He reacted to Milk, Beef, Corn, Wheat, Soy, and Egg last time! Now, this does NOT mean that ALL other foods are safe for John! I wish that were true with all my heart. 
John also had a slight reaction to strawberries, navy beans, and green peas.

Now I know with out a doubt that John's EE reacts to corn, even though it didn't show up on this test. I have seen his EE symptoms flare from eating corn products. It's a perfect example of how EE kids test weird with standard allergy tests.
The next step with the unique way that Dr. G. tests EE kids is for us to do another prick test but use REAL FRESH food in place of the concentrate that is standard. Also we will do patch testing and a blood test, in that order. We will test the foods that passed on the previous test. Once we are done with all the allergy testing we should be cleared to meet with the dietitian and start food trials! I hope to be starting food trials by June. I am so ready to get some food into that boy!

Next was the hip xray and occupational therapy evaluation.
The xray showed nothing abnormal. It all looked fine so we are guessing that his preference for one hip over the other was just a learned habit. Now we will start trying to correct this habit in physical therapy.
The occupational therapist suggested that she see John twice a week for half an hour. We need to work on some sensory issues and she will help us to get John drinking out of a straw/sippy cup. 
She noticed some behaviors that had her concerned enough to suggest we take John to a developmental pediatrician to have him evaluated. 
She also told me that the local dev/peds are really good and there are only a couple so they have long waiting lists but to call and get the first available appointment and to get on the cancellation list and call once a week to check for last minute cancellations.
So that was what I did as soon as I got home. They told me she could get me in in February!! I said, "sure". Then she started taking my information and asking why I needed the appointment and when I told her about John's disease and what the OT had told me she said that they could get me in in December! I'm thinking, "wow, okay"... So I took that appointment. 
They called me the next day and asked if I could come in the following day because they had just had a cancellation and they were told to call me first for any available appointments. It was PERFECT timing!
So Dr. K (the developmental pediatrician) sits on the floor with John and plays with him for over and hour, asks me questions, like a billion of them, and continues to watch John play with various toys. All the while writing in her notes and checking things off a check list.
She said that behaviorally John scored around 7 months (!!!!!) for most things. Some things he scored up to 14 months. She said that it has nothing to do with his nutrition (or lack thereof). 
She said he has autism.
She also said he was very very smart. This is a good thing! Know we know how to help him learn and catch  up in these areas where he is behind! I dont care what you call it. Label it whatever you want. The only difference between now and a week ago is that NOW we know how to best help him succeed in everything he could ever hope to do! 

We also got a script written by the dev/ped for speech and feeding therapy that Dr. C was dragging his feet on. We have speech eval Tuesday. But funny enough John is taking off with his vocab. He has a decent (IMO) list of words growing here!!
"hi", "Ow", "DiDaddy" (daddy), "ball", "yay" and today he said "bubble" when I asked him if he wanted to take a bath! I swear he said "thank you" while he was in the bath but I have might have imagined that one.
Seems like he is growing up too fast now!

Physical therapy is going well. I was worried about her pushing him too hard too fast but since I've started doing the same things at home, he's gotten a lot better about it there.
 working on core muscles and ballance
 working on sitting correctly, and squatting down to pick up something with out sitting.
working on walking with our hands down by carrying a ball

We really like our physical therapist but she is leaving at the end of this month!! We will miss you Ms. R!!
Things are really moving now and John and I stay busy and we are working hard!
Sorry again for the long break in between updates! I dont like these long ones so maybe I'll keep up better from now on!