More Pieces to the Puzzle

Over the past 2 days we travelled back to Knoxville/Maryville, TN to see Dr. Barry Sunshine for Benjamin's allergy and health issues. It was a productive visit and I am hopeful that we have put together a few more pieces to the puzzle of Benjamin's health.

We have spent the last month testing, observing, journaling, backtracking, and just generally trying to get our bearings on the status of Benjamin's new level of health. It has been an exciting month of new experiences and successes, but also an exhausting one. It has been a long time since I have felt the daily anxiety of not being a knowledgeable expert on his care, but with so many changes to his status quo I have definitely engaged in a lot of guesswork and close scrutiny over the last 5 weeks.

We had a few minor complications over the last few weeks, mostly episodes of wheezing or shortness of breath, which were easily remedied by the use of his inhaler. My main concern with breathing issues has always been to figure out where they are coming from (so we can avoid triggers and medicate less), but this time it was especially important to me to determine what was causing these reactions so I could capture a sample of the allergen which would enable Dr. Barry to actually deal with it. Thursday and Friday I really felt like my vigilance paid off. I was encouraged that most of the environments I created samples for (Chick-Fil-A, dust from our vacuum cleaner, etc.) did actually show as allergens and he was able to fix them. I know I wasn't able to capture everything (for example the grass I collected from our yard was not an allergen, but I know he is bothered by something when he goes to play outside), but I think we should have a better month.

All of the food reactions he has had this month have been minor, but because I have been hyper-vigilant I did bring in some foods I suspected based on small observations like red spots on his cheeks, possible slight swelling of his eyelids or mild wheezing. Almost all of them did actually create a reaction. Things like brown rice, a waffle, and the sandwich he eats every Wednesday night before we go to church all caused reactions. The interesting thing about these foods was that when combined with an enzyme in his saliva (amylase), the chemical reaction between the two actually created the allergen. This was a different issue than had been treated last time and, in fact, Dr. Barry said this was a new pattern he had discovered since our last visit. Almost all of the remaining food issues we discovered were due to this reaction between the amylase in his saliva and the food itself. That is so fascinating to me! Just a couple of days prior we had tested peanuts for the first time. As Dr. Barry instructed me, I approached it very cautiously, first applying peanut butter to his finger and, when this caused no redness, swelling, or itching, to his cheek, then to his lip. Each of these tests was completely symptom free, so I finally put a tiny smear on his tongue. Within a minute he had symptoms of a reaction - sore throat, itchy mouth - what he calls, "that milk feeling." Thankfully the treatment plan I have used before for milk worked and nothing more serious happened. When Dr. Barry tested peanut butter the pattern that displayed was this same amylase reaction, which makes perfect sense considering it wasn't until the peanut butter had contact with his saliva that it caused a problem. So he was able to fix all these patterns.

Besides peanuts, the only other allergy I knew was still present was milk. The pattern he discovered for milk was due to another enzyme, gastrin, which is released in your body when you even think about food. He treated this pattern Thursday and that evening we gave Benjamin some bread that had milk as an ingredient and even spread it with a little bit of real butter. I made him take it slowly with a minute or two between bites, but he handled it just fine. Later in the evening I gave him a small slice of cheese, to which, again, he had no visible reaction. In the morning I tested a dab of milk on his lip, as I had earlier in the month. In the earlier test he reported that the dab made his lips feel funny and that the feeling gradually spread inside his mouth. This time he felt nothing. A little while later I even had him take a small sip of milk, wanting to try to draw out any reaction that might occur before our Friday morning appointment. Nothing happened. Friday morning he did re-test the gastrin/milk combination and found that it was still present (he called it "stubborn"), and so he re-treated it, but it seems obvious to me that it was releasing its hold since I couldn't detect any physical reaction to all the various forms of milk he had ingested in the past 18 hours. We have continued to give him small amounts of dairy yesterday and this morning and have not seen any symptoms!

In addition to the allergies, I also decided to mention some of Benj's other quirky issues to Dr. Barry to see if he thought any of them were related or treatable. One of the major issues I have been concerned about for the past year has been stammering. He has always had a bit of an issue with this, but recently it has become much more pronounced (as well as less age-appropriate). I feel quite certain that this issue for him is not one of mechanics or ability, but rather related to concentration and focus. He suggested several possible remedies: first, the vast improvement to his overall health will help with some of these issues of "spacing out;" second, an addition of a high quality fish oil supplement to his daily regimen will help brain function; and third, he suggested and we completed a laser therapy treatment which he thought may help to stimulate the language areas of his brain. He also recommended the laser therapy to possibly help with an occasional issue he has with eye crossing. (The basic procedure was that they scanned a laser back and forth along certain areas of his head while he talked and also moved his eyes around for about 5 minutes per area.) I'm anxious to see if the laser treatments help!

Seth was also treated for his environmental allergies. He was allergic to pretty much everything Dr. Barry tested him for, but he said after his appointment he did feel different, but it's obviously going to be a process to see any improvements in his symptoms. It will be interesting to see how this spring affects him.

We are so thankful for all the support, help, and encouragement we have received through this process and we continue to give thanks and glory to The Healer who is answering our prayers and bringing healing!

Dr. Barry

by Benjamin

A couple of weeks ago Daddy, Mommy, and I went to Tennessee because a doctor who could help me with my allergies is there. We went with Mrs. Stephanie and her son Kolton.

When we got there we saw Dr. Barry. He was very kind and he treated me very gently. I held my arm out and he firmly pushed down on my arm while holding a minature bottle near me which had something I was allergic to in it. Then he would gently pat on my back and erase the allergy from my body. It took only a short time. While he was doing it I felt scared at first, but after awhile I felt more calm. We went to Dr. Barry every morning for three days.

On the third day we went home. I was sad to leave Tennessee, but I felt more healthy. Now I can eat corn! We are going back to Tennessee at the end of March and I can't wait!

When I Was at Jillian's House

by Leila

A few days ago I went to my friend, Jillian's house! Daddy, Mommy and Benj went to a doctor far away. I stayed at Jillian's house for three days.

It was fun, great, and fabulous! Me and Jillian played with ponies. Every lunch we had an inside picnic where we watched "My Little Pony" while we ate lunch on a blanket on the floor. One afternoon we went to Jesse's school. Me and Jesse built with some blocks in his class. Every night me and Jillian slept by each other on the floor.

The last day me, Jillian, and Jesse went with their mom to Bunko. Daddy, Mommy, Benj and Talia met us there. I was sad because I left the ponies Jillian gave me at her house. But after Daddy said we were going to have Dominos Pizza for dinner I was happy to go home.

Christmas in Minnesota

by Talia

Have you ever been on a long drive in the car? Our family has! Our family went to Minnesota at Christmas time. It was a long, long drive. It took one whole day. We left early in the morning and when we got to the hotel it was late at night. When we got to the hotel all the kids were sleeping.

The next few days we met lots of family. We met aunts, uncles, and cousins. Happily, even Mima and Papa were there. We went to Aunt Donna's warm house for a little bit every day! On Christmas Day the whole family was at Aunt Donna's house. We ate dinner there. Then Santa Claus came! Santa had a huge bag on his back which was full of presents for different children. Everyone got plenty of presents. I got to talk to Santa and even sit on his lap. When we weren't with family we were at our fun hotel. We got to watch TV, eat breakfast at a special restaurant in the hotel, and swim.

One day we woke up early. Mommy and Mima dressed us and then we got in the car. It was terribly cold. Then we drove the long, long way home. When we got home it was past bedtime. I missed our wonderful family, but it was good to be home.

Hanging Out at the Hotel, Drinking Hot Cider

Breakfast at the Hotel Restaurant

Santa & Leila

Santa & Channah (not crying!)

Santa, Benj & Talia

Family

Children of the Cousins

The Popcorn Video

In case you missed it on facebook...

What's Next...

Yesterday was Benjamin's last appointment for this round of treatment.

I left off guessing that Benj would want to try cheese at dinner Thursday night. I gave him a couple of options, cheese being one, but in fact he wanted to eat the meatballs that were in our plans for dinner and which contained egg. By the end of dinner his plate was clean, but he had only eaten part of his meatball. He said it made his mouth feel funny, but as it was a pretty spicy meatball he concluded that it was just the spices. However, a little while later we noticed his eyelids were very slightly swollen and there were bright red patches on his cheeks. Within a few more minutes the redness was gone, but his eyelids remained just barely puffy.

He was a bit restless during the night and when he woke up in the morning he was also struggling slightly with his breathing. The asthma response was very mild, but in the past any breathing issues have only escalated with time. I tested his air flow with a meter we use everyday and he was only slightly below normal, but not in the "caution zone" and certainly nowhere near the "danger zone." Our appointment was early, at 9:30, I decided not to give him any medication so the doctor could evaluate the response. By the time we left the house, an hour later, he was no longer struggling at all for breath. Previously he has NEVER kicked a breathing issue without the use of his meds.

We brought the meatball that had caused the reaction the night before to the doctor. On the way it also occurred to me that the house where we were staying had some plug-in-type air fresheners that could have been part of the asthma response.

The doctor asked about our experience with trying another new item and we reported the slight response to the meatball. We gave him the meatball and he tested Benjamin's muscle response to it, which showed that he was still allergic to something in it. Using the same procedure, he strengthened Benjamin's response to all the ingredients in the meatball. (There is no way to know what ingredient caused the reaction.) Based on my limited understanding there are at least two possibilities for why he reacted: It could have been a new "pattern" to one of the same allergens (I'm not clear on exactly what this means, it's just the language the doctor uses.) Or it could have been a reaction to an ingredient he has always been allergic to, but that we didn't realize because the more major issues were obscuring it. It makes sense to me, based on what I have learned, that it could be that with the big things out of the way and his body already more healthy it is responding to things it just previously didn't have the health, sensitivity or strength to respond to. I'm not sure.

We also talked about the asthmatic response that morning and my theory about the air freshener. He confirmed that the ingredients in air freshener were strongly suspect and tested him for an ingredient common to all air fresheners, which he was indeed allergic to. He pointed out, however, that we had been staying in this house for 3 days and it took him until the 3rd morning to have a response, which was very mild. I also remembered later that we didn't go to the house for the first time until after Benj's first appointment, which obviously was the most dramatic for the beginning of his body's healing process. The way this all played out encourages me that it is reasonable to believe that he really is stronger already.

We talked about next steps, which include a follow-up series of appointments in a month (shorter next time - only 2 days of visits), and testing out various foods until then. We have a plan for the safest way to test out some of the more volatile allergens (such as milk and peanuts). We will start out by putting a tiny bit on his finger and if there is no reaction progress to a tiny bit on his lip, followed by a tiny bit on his tongue. We plan to take the testing process very slowly and methodically. The doctor assured us that if he does react it will be much more mild than previous reactions and he instructed us to bring a sample of anything that causes a reaction to our next visit.

After our appointment we went to a restaurant and allowed Benj to eat part of his hamburger with a  bun (something he definitely could not have before, primarily because corn syrup is often used in packaged breads) along with more Heinz ketchup. He didn't have any kind of a visible reaction, but when we returned home (after a 4-hour car ride) he reported that his belly hurt. Although the bun is suspect I think it could have also been the long period of sitting and/or the general emotional upheaval of the last several days.

One final encouraging experience to end what has turned out to be an enormously long post! Thursday afternoon I peeked my head into the room where Benj was having his rest time. He was playing with Legos. I told him I was going to go on a little walk and asked if he wanted to go with me. It's important to note that Benj is characteristically reluctant to go outside and I can not recall him ever agreeing willingly to go on a walk. His face lit up, he jumped up and said, "Yeah! That's sounds like great exercise!" On our way out of the yard he picked up a stick and as we walked he was running along, whacking bushes and rocks and generally expelling lots of creative little boy energy. There are lots of factors which could have caused this burst of outside bliss, but it is clear to me that that afternoon Benj had the energy to just be a little boy which he simply just did not have a couple of days prior.

Going forward I am anxious to see how our hopes and initial observations play out against time and real life. We just don't have enough hard data yet to know if and how this has truly helped him. The initial results have been a mix of huge encouragement and cautious questions. I think there is still more healing to take place in Benj's body, but I am so hopeful that it can happen.

This Feels Like a Dream

We took Benj in for his second visit with the applied kinesiologist today. He asked how Benj was feeling, how he slept last night, and how everything went with his experience trying something new. Benj reported that he feels great, slept great, and that everything went smoothly with the popcorn last night.

In talking with my friend I had learned that we might go in today and find that there were new patterns or viruses that needed to be addressed that would only show up after the first one was fixed, so we were prepared for complicating factors and more treatment, but as the doctor checked him using the allergens he treated for yesterday, Benj remained strong for each one. He found no new issues. We did remember a couple of other things to test for and treat, which he easily did, but other than that it was a pretty straightforward, short appointment today.

Benj started taking the professional quality vitamin supplement the doctor recommended today and we still need to get him one specific vitamin (riboflavin) for some skin irritation at the corner of his mouth caused by a deficiency, but overall not much new happened.

We are immensely encouraged that so far he has not had any complications. We gave him regular ol' Heinz ketchup at Chick-fil-A for lunch today. This is something that in the past has caused him hours of major tummy pain because of the corn syrup in it and he was 100% fine. We plan to test something new at dinner tonight. I haven't asked him yet what he wants to try. My guess is cheese.

Thank you for your prayers and support, friends. So many of you have been invested in Benjamin's health and allergy issues in various ways from cooking special meals for us to keeping him safe in the church nursery. Please continue to pray that anything else that needs to be resolved will come to the surface before tomorrow's appointment. We will keep you updated!