CF toddler diagnosed with Eosinophilic esophagitis

[datca1994]

My son is 3 years old, weighs 13 kilos and is 94 cm (about 14BMI). Since his infancy we were frustrated with his lack of appetite and knew he was not getting enough calories (about 900 calories per day). We agreed to the G-tube and he had the surgery on October 5 2009. A few days before the surgery his GI doctor conducted an impedance test, a PH probe, and a biopsy.All this to rule out reflux and the need for a Nissen fundoplication. There was no sign of reflux, instead there was swelling in the esophagus. The swelling is because of allergic reaction which causes inflammation, that is called Eosinophilic esophagitis (EE).

On Tuesday we went to the allergist find out what he is allergic to so we can eliminate those foods. While I was expecting milk and eggs (turns out he is not allergic to those two), I was not expecting Rice and Almonds! We eat rice everyday, but effective Tuesday no more!

Had we known he had EE before would we have canceled the G-tube surgery? Maybe. Probably. Yes. At least to see how his appetite and calorie intake would have improved after treating the EE.

The last thread about EE I searched for on the forum was in 2005. I thought I would put it out here once again. Granted the GI doctor said it was her first EE patient who also had CF.

Regards,
April

To learn more about EE: <a target=_blank class=ftalternatingbarlinklarge href="http://www.apfed.org/ee.htm">http://www.apfed.org/ee.htm</a>

 

[datca1994]

My son is 3 years old, weighs 13 kilos and is 94 cm (about 14BMI). Since his infancy we were frustrated with his lack of appetite and knew he was not getting enough calories (about 900 calories per day). We agreed to the G-tube and he had the surgery on October 5 2009. A few days before the surgery his GI doctor conducted an impedance test, a PH probe, and a biopsy.All this to rule out reflux and the need for a Nissen fundoplication. There was no sign of reflux, instead there was swelling in the esophagus. The swelling is because of allergic reaction which causes inflammation, that is called Eosinophilic esophagitis (EE).

On Tuesday we went to the allergist find out what he is allergic to so we can eliminate those foods. While I was expecting milk and eggs (turns out he is not allergic to those two), I was not expecting Rice and Almonds! We eat rice everyday, but effective Tuesday no more!

Had we known he had EE before would we have canceled the G-tube surgery? Maybe. Probably. Yes. At least to see how his appetite and calorie intake would have improved after treating the EE.

The last thread about EE I searched for on the forum was in 2005. I thought I would put it out here once again. Granted the GI doctor said it was her first EE patient who also had CF.

Regards,
April

To learn more about EE: <a target=_blank class=ftalternatingbarlinklarge href="http://www.apfed.org/ee.htm">http://www.apfed.org/ee.htm</a>

 

[datca1994]

My son is 3 years old, weighs 13 kilos and is 94 cm (about 14BMI). Since his infancy we were frustrated with his lack of appetite and knew he was not getting enough calories (about 900 calories per day). We agreed to the G-tube and he had the surgery on October 5 2009. A few days before the surgery his GI doctor conducted an impedance test, a PH probe, and a biopsy.All this to rule out reflux and the need for a Nissen fundoplication. There was no sign of reflux, instead there was swelling in the esophagus. The swelling is because of allergic reaction which causes inflammation, that is called Eosinophilic esophagitis (EE).

On Tuesday we went to the allergist find out what he is allergic to so we can eliminate those foods. While I was expecting milk and eggs (turns out he is not allergic to those two), I was not expecting Rice and Almonds! We eat rice everyday, but effective Tuesday no more!

Had we known he had EE before would we have canceled the G-tube surgery? Maybe. Probably. Yes. At least to see how his appetite and calorie intake would have improved after treating the EE.

The last thread about EE I searched for on the forum was in 2005. I thought I would put it out here once again. Granted the GI doctor said it was her first EE patient who also had CF.

Regards,
April

To learn more about EE: <a target=_blank class=ftalternatingbarlinklarge href="http://www.apfed.org/ee.htm">http://www.apfed.org/ee.htm</a>

 

[datca1994]

My son is 3 years old, weighs 13 kilos and is 94 cm (about 14BMI). Since his infancy we were frustrated with his lack of appetite and knew he was not getting enough calories (about 900 calories per day). We agreed to the G-tube and he had the surgery on October 5 2009. A few days before the surgery his GI doctor conducted an impedance test, a PH probe, and a biopsy.All this to rule out reflux and the need for a Nissen fundoplication. There was no sign of reflux, instead there was swelling in the esophagus. The swelling is because of allergic reaction which causes inflammation, that is called Eosinophilic esophagitis (EE).

On Tuesday we went to the allergist find out what he is allergic to so we can eliminate those foods. While I was expecting milk and eggs (turns out he is not allergic to those two), I was not expecting Rice and Almonds! We eat rice everyday, but effective Tuesday no more!

Had we known he had EE before would we have canceled the G-tube surgery? Maybe. Probably. Yes. At least to see how his appetite and calorie intake would have improved after treating the EE.

The last thread about EE I searched for on the forum was in 2005. I thought I would put it out here once again. Granted the GI doctor said it was her first EE patient who also had CF.

Regards,
April

To learn more about EE: <a target=_blank class=ftalternatingbarlinklarge href="http://www.apfed.org/ee.htm">http://www.apfed.org/ee.htm</a>

 

[datca1994]

My son is 3 years old, weighs 13 kilos and is 94 cm (about 14BMI). Since his infancy we were frustrated with his lack of appetite and knew he was not getting enough calories (about 900 calories per day). We agreed to the G-tube and he had the surgery on October 5 2009. A few days before the surgery his GI doctor conducted an impedance test, a PH probe, and a biopsy.All this to rule out reflux and the need for a Nissen fundoplication. There was no sign of reflux, instead there was swelling in the esophagus. The swelling is because of allergic reaction which causes inflammation, that is called Eosinophilic esophagitis (EE).
<br />
<br />On Tuesday we went to the allergist find out what he is allergic to so we can eliminate those foods. While I was expecting milk and eggs (turns out he is not allergic to those two), I was not expecting Rice and Almonds! We eat rice everyday, but effective Tuesday no more!
<br />
<br />Had we known he had EE before would we have canceled the G-tube surgery? Maybe. Probably. Yes. At least to see how his appetite and calorie intake would have improved after treating the EE.
<br />
<br />The last thread about EE I searched for on the forum was in 2005. I thought I would put it out here once again. Granted the GI doctor said it was her first EE patient who also had CF.
<br />
<br />Regards,
<br />April
<br />
<br />To learn more about EE: <a target=_blank class=ftalternatingbarlinklarge href="http://www.apfed.org/ee.htm">http://www.apfed.org/ee.htm</a>

 

[sdelorenzo]

Your son is the first person I have heard who has EE since I was diagnosed a year ago. I was diagnosed because food (meat, pills, etc) has gotten stuck in my esophagus and I had to go into the hospital to have them removed. I do not have cf, but two of my kids do. As your dr probably told you EE is relatively new diagnosis and it isn't very common. I really don't think drs have a lot of knowledge about what causes EE. The drs told me that food elimination and allergy testing for food basically wouldn't help EE. Although I read it can help. I guess they just have a hard time figuring out what foods people are allergic to? My ENT has me on allergy shots for molds. Weird in my opinion especially since I didn't think I had allergies. The GI wants to treat me with Acetycysteine. My daughter has inhaled Acetycsteine for years (mucomyst). So that might be an option for your son.

My daughter has always had a lack of appetite from one month old. She has had a nissen and has a g-tube at age 5. But as far as lack of appetite goes and having EE myself, I personally don't see a connection. I wouldn't be surprised if your son's eating problems has more to do with cf than EE. For whatever reason a lot of our kids just don't like to eat. Eating is the number one problem my kids have with cf. Your son and I could have different cases, but I didn't know I had esophagus problems other than things getting stuck in my esophagus at times. EE isn't painful for me. I really think 6 months from now you will see the g-tube as a huge blessing. My daughter gained 15 pounds in the first 4 months (she didn't gain any the first month!). The one thing the drs made SURE I understood was that I never to have an endoscopy again. I think they said there is a 1/50 chance of tearing the esophagus because of EE and that would be a life changing event. I was my GI and ENT drs first patient with EE too.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf

 

[sdelorenzo]

Your son is the first person I have heard who has EE since I was diagnosed a year ago. I was diagnosed because food (meat, pills, etc) has gotten stuck in my esophagus and I had to go into the hospital to have them removed. I do not have cf, but two of my kids do. As your dr probably told you EE is relatively new diagnosis and it isn't very common. I really don't think drs have a lot of knowledge about what causes EE. The drs told me that food elimination and allergy testing for food basically wouldn't help EE. Although I read it can help. I guess they just have a hard time figuring out what foods people are allergic to? My ENT has me on allergy shots for molds. Weird in my opinion especially since I didn't think I had allergies. The GI wants to treat me with Acetycysteine. My daughter has inhaled Acetycsteine for years (mucomyst). So that might be an option for your son.

My daughter has always had a lack of appetite from one month old. She has had a nissen and has a g-tube at age 5. But as far as lack of appetite goes and having EE myself, I personally don't see a connection. I wouldn't be surprised if your son's eating problems has more to do with cf than EE. For whatever reason a lot of our kids just don't like to eat. Eating is the number one problem my kids have with cf. Your son and I could have different cases, but I didn't know I had esophagus problems other than things getting stuck in my esophagus at times. EE isn't painful for me. I really think 6 months from now you will see the g-tube as a huge blessing. My daughter gained 15 pounds in the first 4 months (she didn't gain any the first month!). The one thing the drs made SURE I understood was that I never to have an endoscopy again. I think they said there is a 1/50 chance of tearing the esophagus because of EE and that would be a life changing event. I was my GI and ENT drs first patient with EE too.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf

 

[sdelorenzo]

Your son is the first person I have heard who has EE since I was diagnosed a year ago. I was diagnosed because food (meat, pills, etc) has gotten stuck in my esophagus and I had to go into the hospital to have them removed. I do not have cf, but two of my kids do. As your dr probably told you EE is relatively new diagnosis and it isn't very common. I really don't think drs have a lot of knowledge about what causes EE. The drs told me that food elimination and allergy testing for food basically wouldn't help EE. Although I read it can help. I guess they just have a hard time figuring out what foods people are allergic to? My ENT has me on allergy shots for molds. Weird in my opinion especially since I didn't think I had allergies. The GI wants to treat me with Acetycysteine. My daughter has inhaled Acetycsteine for years (mucomyst). So that might be an option for your son.

My daughter has always had a lack of appetite from one month old. She has had a nissen and has a g-tube at age 5. But as far as lack of appetite goes and having EE myself, I personally don't see a connection. I wouldn't be surprised if your son's eating problems has more to do with cf than EE. For whatever reason a lot of our kids just don't like to eat. Eating is the number one problem my kids have with cf. Your son and I could have different cases, but I didn't know I had esophagus problems other than things getting stuck in my esophagus at times. EE isn't painful for me. I really think 6 months from now you will see the g-tube as a huge blessing. My daughter gained 15 pounds in the first 4 months (she didn't gain any the first month!). The one thing the drs made SURE I understood was that I never to have an endoscopy again. I think they said there is a 1/50 chance of tearing the esophagus because of EE and that would be a life changing event. I was my GI and ENT drs first patient with EE too.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf

 

[sdelorenzo]

Your son is the first person I have heard who has EE since I was diagnosed a year ago. I was diagnosed because food (meat, pills, etc) has gotten stuck in my esophagus and I had to go into the hospital to have them removed. I do not have cf, but two of my kids do. As your dr probably told you EE is relatively new diagnosis and it isn't very common. I really don't think drs have a lot of knowledge about what causes EE. The drs told me that food elimination and allergy testing for food basically wouldn't help EE. Although I read it can help. I guess they just have a hard time figuring out what foods people are allergic to? My ENT has me on allergy shots for molds. Weird in my opinion especially since I didn't think I had allergies. The GI wants to treat me with Acetycysteine. My daughter has inhaled Acetycsteine for years (mucomyst). So that might be an option for your son.

My daughter has always had a lack of appetite from one month old. She has had a nissen and has a g-tube at age 5. But as far as lack of appetite goes and having EE myself, I personally don't see a connection. I wouldn't be surprised if your son's eating problems has more to do with cf than EE. For whatever reason a lot of our kids just don't like to eat. Eating is the number one problem my kids have with cf. Your son and I could have different cases, but I didn't know I had esophagus problems other than things getting stuck in my esophagus at times. EE isn't painful for me. I really think 6 months from now you will see the g-tube as a huge blessing. My daughter gained 15 pounds in the first 4 months (she didn't gain any the first month!). The one thing the drs made SURE I understood was that I never to have an endoscopy again. I think they said there is a 1/50 chance of tearing the esophagus because of EE and that would be a life changing event. I was my GI and ENT drs first patient with EE too.
Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf

 

[sdelorenzo]

Your son is the first person I have heard who has EE since I was diagnosed a year ago. I was diagnosed because food (meat, pills, etc) has gotten stuck in my esophagus and I had to go into the hospital to have them removed. I do not have cf, but two of my kids do. As your dr probably told you EE is relatively new diagnosis and it isn't very common. I really don't think drs have a lot of knowledge about what causes EE. The drs told me that food elimination and allergy testing for food basically wouldn't help EE. Although I read it can help. I guess they just have a hard time figuring out what foods people are allergic to? My ENT has me on allergy shots for molds. Weird in my opinion especially since I didn't think I had allergies. The GI wants to treat me with Acetycysteine. My daughter has inhaled Acetycsteine for years (mucomyst). So that might be an option for your son.
<br />
<br />My daughter has always had a lack of appetite from one month old. She has had a nissen and has a g-tube at age 5. But as far as lack of appetite goes and having EE myself, I personally don't see a connection. I wouldn't be surprised if your son's eating problems has more to do with cf than EE. For whatever reason a lot of our kids just don't like to eat. Eating is the number one problem my kids have with cf. Your son and I could have different cases, but I didn't know I had esophagus problems other than things getting stuck in my esophagus at times. EE isn't painful for me. I really think 6 months from now you will see the g-tube as a huge blessing. My daughter gained 15 pounds in the first 4 months (she didn't gain any the first month!). The one thing the drs made SURE I understood was that I never to have an endoscopy again. I think they said there is a 1/50 chance of tearing the esophagus because of EE and that would be a life changing event. I was my GI and ENT drs first patient with EE too.
<br />Sharon, mom of Sophia, 8 and Jack, 6 both with cf, Grant, 9 months no cf