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Eosinophilic Esophagitis



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amother


 

Post Sat, Feb 02 2013, 7:48 pm
Are there any other members here with kids with this condition. My son was diagnosed a few months ago and I am still trying to find a pediatric gastro that I am comfortable with. I am also not so happy with the standard approach of repeat endoscopies every six to eight weeks. Especially since my son is pretty much almost symptom free although his diet is pretty limited. Does anyone have a recommendation for a gastro in the nyc or nnj area?
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amother


 

Post Sat, Feb 02 2013, 9:29 pm
I think that Dr. Karen Francolla in Hackensack has a special interest in EE. She is super nice.
I don't know what her approach to management is but I bet she takes the parent's feelings into account.
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amother


 

Post Sun, Feb 03 2013, 7:05 am
Chop in Philadelphia deals with this.

I know parents who travel from NY to Chop as the care is much better.
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amother


 

Post Sun, Feb 03 2013, 7:41 am
Is Chop very into the repeat endoscopies. It would be good to know what he can eat but I very concerned about the idea of him having 15 endoscopies before he turns 5.
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amother


 

Post Sun, Feb 03 2013, 8:07 am
I know my friends child does get many endoscopies, however she does has a sever case and is on a feeding tube.

My friend did a lot of research and found that Chop was the best place to go in the Tri State area. Now she did her research about five years ago so things could have changed.

You can go for a consultation and decide if the doctors are a good fit for you.

It did take a while for her child to stabilize and also to adjust to accepting that the child had a chronic illness and it wasn't go to go away.

I want to add besides for the EE the child is developing wonderfully and is even above age level in some areas. She goes to school, camp, extra curricula activities etc.

Refuah Shileima to your DS.
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TSmom




 
 
    
 

Post Sun, Feb 03 2013, 9:25 am
My son has EE. We started at Dupont and moved to Hopkins. I highly recommend traveling to Dr. Wood (he is allergy FYI) at Hopkins. I will never go anywhere else. We live in Philly and I won't go near CHOP. I know to many kids they made very very sick. Their approach is backwards I found. Some don't but whatever. They are very into pulling foods and loads of scopes. At DuPont we got an initial scope. We did the standard trying Prevacid (sp?) and re-scope to confirm it was EE. After Dr. Wood between skin testing, blood work, and extensive conversation he came up with a list of foods for us to avoid. Others I know he had them go solid free and put on formula. Depends on the findings from the tests and convo. Three months later we re-scoped. Dr. Wood was spot on with my son's triggers. He was clear. At the time he was 1 so Dr. Wood said no food trialing until after his upshern. He was so healthy at 2.5 we got to trial 3 foods. Unfortunately only one was a pass. We did not have to scope though for any of them because the fails were clear cut fails and the pass was so clear cup- continued to grow, no pain, no bloat, no other symptoms at all, not even minute ones. We are in the middle of a trial now. He keeps getting sinus infections but not from the trial so we have had to put off the scope. We are pretty sure its a pass but because there are some questions we will have to scope as soon as he is healthy enough to. He is a thriving 3.5 year old who is symptom free now. At 1 he was one of the sickest kids Dr. Wood ever saw. Terri his nurse is beyond amazing and one of the most valuable resources I have ever found.
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amother


 

Post Sun, Feb 03 2013, 11:16 am
Dr. Mirna Chehade at Mt. Sinai in NYC. We have had a consult with her and she was very thorough, knowledgeable and also nice with the kids.

I am sure there are negative anecdotes about every program,
but fwiw, I have also heard of a number of negative experiences at CHOP. We have not been there.
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amother


 

Post Sun, Feb 03 2013, 1:07 pm
Op here- I had a consult with Dr. Chehade and although she seems competent, I found her to be very cold and tough. Have you actually used her? It also seems like she is very into doing endoscopies every 2 months and I am not sure I want to go that route.

TSMom - your post was very hopeful. Is Hopkins in Baltimore. I dont think I want to travel that far. Is there any group in NYC with the same approach?

Thank you everyone for your posts. Those of you with kids with ee do you find that they have outgrown some of it over the years?
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TSmom




 
 
    
 

Post Sun, Feb 03 2013, 1:17 pm
I don't honestly know as we are in the middle between NYC and Baltimore. Dr. Wood is the number 1 ped allergist in the country and we trust him so much. For us the ride is well worth it. Also, Dr. Wood is very good about not making you run in. We do a lot of our communication over email and on the phone. We have once a year appointments. He is totally cool with us scoping closer to home and having the results sent to him. They are used to people coming from out of town and work with you. We have chosen to do our next scope at Hopkins but its not necessarily needed. EE is still knewly acknowledged by doctors. Many claim they understand it but I have found I know more because Hopkins educates me.

You can ask at kidswithfoodallergies.org... they are loaded with resources.

My son has not outgrown anything. EE is not outgrown. However, with good diet management he is thriving.
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Mishmish




 
 
    
 

Post Sun, Feb 03 2013, 7:46 pm
I'm the amother who also had a consult with Dr. Chehade--No, we have not used her beyond that first visit (we were getting a second opinion on EoE). It looks like EoE is ruled out for my kids for the time being, although it's something we will need to continue to monitor. Anyway, I found her demeanor to be very similar to many other doctors we have seen in the NYC area. I have found many to be on the abrupt side of things. If my kids did have EoE at this time, I think I would want to be at one of the research centers--Mt. Sinai is the only one that I know of in the NYC/North Jersey area. Knowledge is advancing quickly and I would want to be with the doctors who are on top of it and my personal feeling is that is more likely at a research center. YMMV.

I second the kidswithfoodallergies.org recommendation. There is a sub-forum on EGID with many knowledgeable parents, several of whom are in the tristate area. A number of families on there go to Hopkins and highly recommend the group there. Another is in Connecticut and has a group there who they really like--not sure if that would be too far for you.

Several families that I know of have found it worthwhile to go to National Jewish in Denver for a consult, although that is obviously a much bigger trip, and then follow-up with a more local group once a game plan is in place.
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TSmom




 
 
    
 

Post Sun, Feb 03 2013, 9:50 pm
We have been to NJ twice in Denver. They saved my kid's life. They are the reason why my son got a diagnosis of EE by the age of 1 which is almost unheard of.
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amother


 

Post Mon, Feb 04 2013, 6:15 pm
TSMom - I know ee cannot be outgrown but I was under the impression that just like kids outgrow their food allergies, kids with ee eventually outgrow many of the foods that trigger the ee
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TSmom




 
 
    
 

Post Wed, Feb 06 2013, 10:48 am
We were told the opposite. That the chances of that is slim but there is a chance they could grow into more foods being triggers as well as other things like environmental triggers.
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