Went to the GI today to talk. He thinks that Tanner probably will not make it in the study. He says that the stomach pain and distention could be from constipation (which is a real problem for Tanner). He decided we should tackle that problem and if the constipation goes away but he still has tummy pain we know it is an EE issue.
When I brought up the question of what to do about the high EOS count he informed me the only way to find the offending food is to go formula only for 3 months. This is so not what I wanted to hear. “It is only 3 months” is the answer I got when I said I cant see how we can do that. I have seen other families do it and I know it is done and it is for the best but it is going to be so hard!
We are going to take the next 2 weeks and see how he does on Mirilax for the constipation before we try to go formula only. Maybe by then we will know if he made it into the study and we can keep food but it is not looking so good.
Please keep us in your prayers! We will need them especially with the holidays coming what a time to lose food.
Monday, August 31, 2009
Not what I wanted to hear!!!
Went to the GI today to talk. He thinks that Tanner probably will not make it in the study. He says that the stomach pain and distention could be from constipation (which is a real problem for Tanner). He decided we should tackle that problem and if the constipation goes away but he still has tummy pain we know it is an EE issue.
When I brought up the question of what to do about the high EOS count he informed me the only way to find the offending food is to go formula only for 3 months. This is so not what I wanted to hear. “It is only 3 months” is the answer I got when I said I cant see how we can do that. I have seen other families do it and I know it is done and it is for the best but it is going to be so hard!
We are going to take the next 2 weeks and see how he does on Mirilax for the constipation before we try to go formula only. Maybe by then we will know if he made it into the study and we can keep food but it is not looking so good.
Please keep us in your prayers! We will need them especially with the holidays coming what a time to lose food.
When I brought up the question of what to do about the high EOS count he informed me the only way to find the offending food is to go formula only for 3 months. This is so not what I wanted to hear. “It is only 3 months” is the answer I got when I said I cant see how we can do that. I have seen other families do it and I know it is done and it is for the best but it is going to be so hard!
We are going to take the next 2 weeks and see how he does on Mirilax for the constipation before we try to go formula only. Maybe by then we will know if he made it into the study and we can keep food but it is not looking so good.
Please keep us in your prayers! We will need them especially with the holidays coming what a time to lose food.
Thursday, August 27, 2009
Endoscopy/Colostopy Results
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So most of you know that Tanner had his endoscopy/colonostopy on Friday. I talked with the Dr. today and his eosinophil counts are higher than they have ever been. He had 15 in the upper part of his esophagus and 86 in the lower part. The esophagus should have 0 eosinophils but anything 0-15 in considered normal. His colon was clean. We are basically at square one and any progress we had made is gone. Right now we have 3 options:
we can try to get into the budesonide study again. Budesonide is actually the same thing as pulmacort (used for asthma). They have made it suspension form and the idea is when swallowed it coats the esophagus and kills the eosinophils. They pros are Tanner would get to keep all of the foods that he is on and all medical tests and visits and the medication would be paid for. The cons are it is a study and the long-term effects are unknown and he could end up on a placebo. However if we do not see a change or he gets worse we can take him out of the study. My theory is he has been going like this for a year now. I don’t think that a month of two is going to make things worse.
We can do swallowed Flovent. Flovent also an asthma medication which is an inhaler. He would swallow instead of inhale the medication. With this we would still have to find the food that is causing this and take it out of his diet. Which sounds much easier than it is. And the medication would be somewhat costly.
We could take all his food away and go formula only. This would probably be my last choice because it would be devastating and he would probably end up on a feeding tube. However it would give him a chance to heal and then we could start food trials and find a truly “good” diet. This would probably still require flovent to help because diet change takes time to work.
I am torn between option one and two. I just don’t know what we are going to do right now. I will update you all when we have made a decision. Tanner has and appointment with the GI on Monday and the allergist for testing on Thurs. I should have the answers by then. Keep Tanner in your prayers
we can try to get into the budesonide study again. Budesonide is actually the same thing as pulmacort (used for asthma). They have made it suspension form and the idea is when swallowed it coats the esophagus and kills the eosinophils. They pros are Tanner would get to keep all of the foods that he is on and all medical tests and visits and the medication would be paid for. The cons are it is a study and the long-term effects are unknown and he could end up on a placebo. However if we do not see a change or he gets worse we can take him out of the study. My theory is he has been going like this for a year now. I don’t think that a month of two is going to make things worse.
We can do swallowed Flovent. Flovent also an asthma medication which is an inhaler. He would swallow instead of inhale the medication. With this we would still have to find the food that is causing this and take it out of his diet. Which sounds much easier than it is. And the medication would be somewhat costly.
We could take all his food away and go formula only. This would probably be my last choice because it would be devastating and he would probably end up on a feeding tube. However it would give him a chance to heal and then we could start food trials and find a truly “good” diet. This would probably still require flovent to help because diet change takes time to work.
I am torn between option one and two. I just don’t know what we are going to do right now. I will update you all when we have made a decision. Tanner has and appointment with the GI on Monday and the allergist for testing on Thurs. I should have the answers by then. Keep Tanner in your prayers
Monday, August 10, 2009
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland"."Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland
Sunday, August 9, 2009
Peanut butter m&m/Grapes
On Thursday Tanner found a peanut butter m&m and of course decided to eat it. I found him standing over the trash spitting it out saying "yuk it hurt my mouth." I was so scared! I dosed him with benedryl and waited with his Epi-pen for something major and....nothing. I am not sure if he just spit it out before anything major happened or if the benedryl stopped it in its tracks. Either way I thank God that he did not have a major reaction.
As Tanner gets older and communicates better we are finding that foods we thought were safe are not. On Friday we went to a family gathering and Tanner ate a bowl of grapes. Saturday he had more grapes, but this time he cam to me and said that they hurt his tongue. Later that night he said his tummy really hurt and then this morning he had some pretty nasty mucusy diarrhea. Looks like we have lost yet another food. No more grapes for Tanner.
As Tanner gets older and communicates better we are finding that foods we thought were safe are not. On Friday we went to a family gathering and Tanner ate a bowl of grapes. Saturday he had more grapes, but this time he cam to me and said that they hurt his tongue. Later that night he said his tummy really hurt and then this morning he had some pretty nasty mucusy diarrhea. Looks like we have lost yet another food. No more grapes for Tanner.
Saturday, August 1, 2009
FUN DIP/Clown
I just thought of a funny story that made me laugh a lot and cry a little inside. Blue took Tanner to the store with his the other day. They are at the check out and Tanner of course wants to buy some candy. After picking up almost every type of candy on the shelf for his dad to read the ingredents and hearing over and over "nope cant have that one" Tanner picks up some fun dip. When dad says you can have this one Tanner jumps up and down screaming "YES I CAN HAVE IT YES, YES, YES." I love those moments.
Last nigh I came home from the grocery store to Tanner the clown. So Cute!!
Friday, July 31, 2009
Tanners story
I started this blog so that I could keep all of out friends and family up to date with what is going on with Tanner and his journey with Eosinophilic Esophagitits (EE).
Eosinophils (ee-oh-sin-oh-fillz) are a type of white blood cell (WBC). Eosinophils are the least common of the white blood cells and comprise approximately 1-4% of the blood’s cellular make-up. Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.
Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines. People with EE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema. EE affects people of all ages and ethnic backgrounds. Males are more commonly affected than females. In certain families, there may be an inherited (genetic) tendency.In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve.
Now that you have some idea of what we are dealing with I will tell you our story. Tanner was breast feed until he was 9 months old. When he was 3 months old he started having reflux issues. I took him to the Pediatrician who cut dairy out of my diet. This seemed to help for a few weeks and then the reflux returned. Tanner was then put on zantac that seemed to be working.
When Tanner was 9 months old he started to refuse to nurse so we put him on formula. He immediately started to get sick. He was vomiting at least 5 times a day. The pediatrician thought maybe he was lactose intolerant so we went to soy formula. Wrong move!!! 20 min after his first bottle on the soy formula he was vomiting that continued up to 10 times a day. Back to the pediatrician we went. I demanded that we see a Gastrointerologist. The pediatrician informed me that would be a waste of time. That I was a first time mom and it is normal for babies to “spit up.” I finally talked him into giving me the referral.
Tanner was 11 months old when we first went to the Gatrointerologist. At that point Tanner had lost 5 he was now a little over 10 pounds and was diagnosed as “failure to thrive.” The GI thought maybe he had milk protein intolerance. He was then put on Allimintum formula. Allimintum is supposed to be broke down so that it is more tolerable for babies with milk intolerance. This of course did not work. Tanner was still vomiting 5 times a day and had diarrea with mucus in it.
I started googling Tanners symptoms to try to get more answers. That is when I came across a website about Eosinophilic Gastrointestanal Disorders (EGID). These disorders can only be diagnosed by doing an endoscopy with biopsy. I took all the information I have gathered to the GI and said “Tanner has this I just know he does”. The Dr. told me there was no was that this way a very rare disease and that Tanner was not sick enough for that to be it. I insisted that he do the scope. I threatend that I would come sit in his office every day until he did it. He finally gave in and agreed to do the scope.
On July 20, 2007 (Tanner was 13 months) we went in for our first scope. On July 27, 2007 the GI calls me and say “Mrs. Wood first I want to apologize for not doing this scope sooner. Tanner has EE”
Our next step was to go to the allergist and have testing done. Tanner had to have blood drawn and skin prick test. We tested for environmental allergies and food allergies. We had 2 visits where we tested for a total of 65 foods. Over 50 were positive. Tanner lost most of his diet that day. He could only eat:
Chicken
Pork
Broccoli
Tanner is doing very well now and is thriving. He still has to drink Neocate and does so out of a bottle. He is gaining weight and actually seems to be adapting well to his diet. I have had to get very creative with the food he can have to keep things different and new for him. He is a very loving sweet kid and I thank God for him everyday.
Cauliflower
Grapes
Watermelon
Berries
Sweet potato
Rice
Neocate Jr (an elemental formula. The same stuff that you would get through a feeding tube)
We scoped again in May 22, 2008 and the scope was clean. Which means he had little to no eosinophils in his esophagus. We could now review his allergy test and decide on 3 foods that he tested least allergic to and do a food trial. A food trial is when we try one new food every 2 weeks and then after 6 months we do another endoscopy to see how he is reacting to those foods. We chose Sunflower seeds, corn and potato.
Tanner seemed to be doing fine on all 3 of the new foods. No signs of being allergic. This was great Tanner could have chips and French fries for the first time in his life. He LOVED it!!! We then had a scope in January and the results were not so great. We now had to take potatoes and corn away from Tanner. This was devastating. We still cannot eat French fries in from of him with out a total meltdown. Luckily I have found some sweet potato chips he can have but they are still not that great.
Eosinophils (ee-oh-sin-oh-fillz) are a type of white blood cell (WBC). Eosinophils are the least common of the white blood cells and comprise approximately 1-4% of the blood’s cellular make-up. Eosinophilic esophagitis (EE) is an allergic inflammatory disease characterized by elevated eosinophils in the esophagus EE is a newly recognized disease that over the past decade has been increasingly diagnosed in children and adults.
Eosinophilic esophagitis is characterized by a large number of eosinophils and inflammation in the esophagus (the tube connecting the mouth to the stomach). These eosinophils persist despite treatment with acid blocking medicines. People with EE commonly have other allergic diseases such as rhinitis, asthma, and/or eczema. EE affects people of all ages and ethnic backgrounds. Males are more commonly affected than females. In certain families, there may be an inherited (genetic) tendency.In individuals with EE, the eosinophils cause injury to the tissue in the esophagus. EE can be driven by food allergy or intolerance: most patients who eliminate food proteins from their diet (by drinking only an amino-acid based formula) improve.
Now that you have some idea of what we are dealing with I will tell you our story. Tanner was breast feed until he was 9 months old. When he was 3 months old he started having reflux issues. I took him to the Pediatrician who cut dairy out of my diet. This seemed to help for a few weeks and then the reflux returned. Tanner was then put on zantac that seemed to be working.
When Tanner was 9 months old he started to refuse to nurse so we put him on formula. He immediately started to get sick. He was vomiting at least 5 times a day. The pediatrician thought maybe he was lactose intolerant so we went to soy formula. Wrong move!!! 20 min after his first bottle on the soy formula he was vomiting that continued up to 10 times a day. Back to the pediatrician we went. I demanded that we see a Gastrointerologist. The pediatrician informed me that would be a waste of time. That I was a first time mom and it is normal for babies to “spit up.” I finally talked him into giving me the referral.
Tanner was 11 months old when we first went to the Gatrointerologist. At that point Tanner had lost 5 he was now a little over 10 pounds and was diagnosed as “failure to thrive.” The GI thought maybe he had milk protein intolerance. He was then put on Allimintum formula. Allimintum is supposed to be broke down so that it is more tolerable for babies with milk intolerance. This of course did not work. Tanner was still vomiting 5 times a day and had diarrea with mucus in it.
I started googling Tanners symptoms to try to get more answers. That is when I came across a website about Eosinophilic Gastrointestanal Disorders (EGID). These disorders can only be diagnosed by doing an endoscopy with biopsy. I took all the information I have gathered to the GI and said “Tanner has this I just know he does”. The Dr. told me there was no was that this way a very rare disease and that Tanner was not sick enough for that to be it. I insisted that he do the scope. I threatend that I would come sit in his office every day until he did it. He finally gave in and agreed to do the scope.
On July 20, 2007 (Tanner was 13 months) we went in for our first scope. On July 27, 2007 the GI calls me and say “Mrs. Wood first I want to apologize for not doing this scope sooner. Tanner has EE”
Our next step was to go to the allergist and have testing done. Tanner had to have blood drawn and skin prick test. We tested for environmental allergies and food allergies. We had 2 visits where we tested for a total of 65 foods. Over 50 were positive. Tanner lost most of his diet that day. He could only eat:
Chicken
Pork
Broccoli
Tanner is doing very well now and is thriving. He still has to drink Neocate and does so out of a bottle. He is gaining weight and actually seems to be adapting well to his diet. I have had to get very creative with the food he can have to keep things different and new for him. He is a very loving sweet kid and I thank God for him everyday.
Cauliflower
Grapes
Watermelon
Berries
Sweet potato
Rice
Neocate Jr (an elemental formula. The same stuff that you would get through a feeding tube)
We scoped again in May 22, 2008 and the scope was clean. Which means he had little to no eosinophils in his esophagus. We could now review his allergy test and decide on 3 foods that he tested least allergic to and do a food trial. A food trial is when we try one new food every 2 weeks and then after 6 months we do another endoscopy to see how he is reacting to those foods. We chose Sunflower seeds, corn and potato.
Tanner seemed to be doing fine on all 3 of the new foods. No signs of being allergic. This was great Tanner could have chips and French fries for the first time in his life. He LOVED it!!! We then had a scope in January and the results were not so great. We now had to take potatoes and corn away from Tanner. This was devastating. We still cannot eat French fries in from of him with out a total meltdown. Luckily I have found some sweet potato chips he can have but they are still not that great.
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