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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, July 23, 2012

Last Minute

John has been having GI issues since we started the apple trial. Normally just stopping the food that is causing the symptoms is enough to clear up the symptoms in a short period of time. Sometimes that alone isn't enough and a round of steroids is needed to knock it out.

Dr M had discussed the possibility that John has a motility issue. Meaning his stomach doesn't empty quickly enough so food sits in his stomach readily available to come back up. Since we had stopped the apples and John was still having issues Dr. M decided to try an antibiotic to help with the motility issue. 
We've been on the antibiotic for three days now and he has gotten a lot worse.
I called Dr. M today to let him know and he wants to see John on Wednesday and put him on the schedule to have a scope done on Thursday morning.
He will take another biopsy and check to see if there is a build up of eosinophils. 
I will post again when we have news.

Until then, I'll leave you with some pictures from John's 19 month photo shoot. 

Thanks for reading and for your support!

Tuesday, July 10, 2012

MRI results

Got the results from the MRI today.

Everything came back normal! 
No stroke, no brain damage, no abnormal brain development!

They suggested that we keep him in Occupational therapy, follow up with the Developmental Pediatrician, and just keep a close eye on his development. 
She said that the progress he has made since she saw him a month and a half ago is remarkable.


Thursday, July 5, 2012

Apple Trial

I know it's been a long time since I updated and I had planned on an update sooner than this but plans changed. I needed to take some time to calm down before I made this post. I have been so angry and frustrated before that I just knew I wouldn't be able to write a coherent post.

First off, the apple trial...

I went to Earth Fair and bought two organic Gala apples the day after I got the call from Dr. M that we could trial. I brought them home, washed them, cored, cut, and peeled one. 

I meticulously washed my pot, steaming basket and spoon. I steamed the apple until it was super mushy then pureed it with a lot of the water that I used to steam it with, to add back some of the nutrients that were lost during the steaming process. 

I pureed the heck out of that apple too!
I was surprised by how much apple sauce I got from one apple.

This is not all that I got out of one apple. This is just what I thought John would eat in one serving

I then put it in the freezer to cool off because we were so excited to give it to John.
The first time I offered it did not go well. As soon as the apples hit his tongue he started gagging. He gagged until he threw up. I put some of the apples onto the high chair tray to let him play with it while I gave him some time to calm down from the gagging. I tried another teeny tiny bit and the same thing happened, only he cried and pushed the spoon away this time. That was the end of the first day trialing apples.

John has developed an oral aversion. He has always had a slight one and we never got passed stage 2 gerber foods. Anything with chunks of food in them, he would gag on. Now after being elemental for 8 months his aversion has gotten worse. He's not used to anything other than his formula and occasionally water in his mouth. He body doesn't know what to do with this new sensation. 
Here is some more information on oral aversion.

The second day I offered apples was a tiny bit better but not by much. Pretty much the same reaction only with out the vomiting. Just a lot of fighting and gagging. I think I may have gotten about a teaspoon into him. No tears today either.
He had a little increase in reflux that day but we put it off as stress related.

Each day John would eat a little more and was a little more willing. I also discovered that if I gave him his bottle of formula between each bite of apples, the apples went down smoother. He didn't have a chance to register the apples on his tongue.
John's reflux was getting worse and he threw up one morning. We were starting to get concerned that he was failing apples but kept going because a lot was going on and stress has been known to cause him to have EE and reflux symptoms before.
We decided to not give him any apples over the weekend and he didn't have any symptoms over the weekend. When we started giving him apples again, he started gagging and coughing again.
I emailed Dr. M. and asked if we could stop the apples. He approved. I also asked him if we could trial sweet potatoes next for two reasons. One being that John LOVED them when he had them before we eliminated all foods, and two being that they puree so smoothly that I think they will be easier for him to handle with the aversion.
Dr. M said to give him 7-10 days to make sure the apples are out of his system, then to go a head with the sweet potatoes. It's been 8 days today so I plan on starting the next trial on Monday.
So apples are a temporary fail. We will trial them again once we have some same foods under our belts and get a handle on this aversion.

Now. I left everyone hanging last time, I know. I'm sorry. I'm about to fill you in though.

About three weeks into John's therapy (OT, PT, and ST) all three different therapist pointed out different areas that John was showing muscle weakness. Physical noticed it in his left leg, Occupation noticed it in his left arm, and Speech noticed that he talks out of the right side of his mouth. He has consistent muscle weakness on the entire left side of his body! It's as if he's had a stroke at some point! They sent a letter to John's pediatrician and he, then, sent us to a pediatric neurologist.
The neurologist we saw, Dr. B, who is the head of Ped's Neuro, agreed that there is some weakness and that we need to check out what's going on in John's brain. He scheduled us for an MRI for a month later. It is an hour long procedure in which John would have to be perfectly still... John is 18 months old.... meaning he would require sedation.
The scheduled the MRI for Wednesday June 27th. My Mother and Grandmother drove 10 hours to be with me so that Doug wouldn't have to take off work. I talked to the nurse the week before and explained that John could NOT have any medication with food products in it, and explained why. She seemed to understand and, I assumed, put it all in his chart.
We were scheduled for 12:30 and since John was being sedated he couldn't have anything to eat after 7:30am. So we go in there, me stressed, John hungry. They put some numbing cream on his foot and arm where they planned on putting the IV. They chose his arm and put it in. He screamed until he threw up. I held him and he fell asleep while we waited for them to take him to get the MRI done. They had not given him any medication at this point. He just fell asleep, I suppose, from exhaustion from crying and not eating. 
The Dr. came in and told me that the medication they were planning on using had egg and soy in it.... I said "no, he cannot have that. He is allergic to egg and soy". They looked at me like they could not understand. I said that I had explained all this to the nurse on the phone. The Dr. said that it wasn't in his chart and still seemed to not understand why I wouldn't let them inject this medication into my son! I told them I would not be comfortable unless they got approval John's GI who manages his disease. So they called Dr. M's office and left a message. Then they just sat there and stared at us, my mom, my grandmother, and me holding my sleeping son. I don't even know how long we sat there waiting but at some point they said that they would have to just reschedule us because they could not get anesthesia and the only sedation they could give him, he was allergic to. He also said that John's allergies were not in his chart. 
He was diagnosed in that same hospital! I told the nurse when she asked about allergies! She even asked, "so, he can't have egg?" Also, if it wasn't in his chart, why did the Dr. come to tell me about the soy and egg in the medication? Is that just standard? Or did he see that he had an allergy and knew they had messed up?
Either way, they took the IV out of John's arm and sent us home. It felt like we were being sneaked out the back door.
No apology.

John has now been rescheduled for tomorrow at 6:30 am with anesthesia. Doug has taken off work, I have had to reschedule a lot of appointments, including his follow up appointment with the neurologist where we would have gotten the results of the MRI, which was scheduled for the 3rd. 
If they had not messed up, we would have some answers by now! Now we have to wait until the 10th to know what, if anything, is going on.

Until then, we have dropped PT, John is far above the curve physically, according to his physical therapist's evaluation. We have also dropped speech. John has 10+ words in his vocabulary and I feel like we are doing okay with out feeding therapy. We don't want to push him to do things he's not ready to do. When he's ready to eat, he will eat. I will continue to offer acceptable foods every day at home and see how it goes. So unless the neurologist finds something on the MRI that makes him think John needs or will need more PT or ST, we are going to stick with an hour, twice a week, of OT.
She will work on the aversion some, work on his fine motor skills, and is helping us get John drinking from a straw or sippy cup and off the bottle. 

Long update I know. I wish I had a weight and height update too but we've not been in to see the pediatrician lately, which is fine by me. I think he is due for an 18 month check up and shots though so I should have his stats to update soon.
I will also, of course, update about the MRI findings as soon as I get them.