we FINALLY have a diagnoses

twoasone1

After 9 months of testing, we finally have a diagnoses that answers why DS has been labeled failure to thrive and refuses to eat anything but a little bit of Pediasure.  He has severe Eosinophilic Esaphagitis disorder.  He now has to go through additional testing to determine the next step for his treatment. I wanted to let everyone know because I think there are a few others who were or are in the same boat as my DS.  Here is the website for more info on it if anyone is interested. It is www.apfed.org look under the about EE tab for more info.  

kle+spd

I'm going to look into this! We have similar issues with DD! Thanks for posting!!!

We have a GI dr and now a pulmonologist as she is starting to have lung issues. They think she aspirates from the reflux!

THANKS!

 

lwrigley2000

So happy you finally got a diagnosis and can get some answers. Good luck!

AfterAll

Glad you got some answers... that must have been scary/frustrating.  Hopefully you will get a course of treatment soon... he is adorable btw!  It is always interesting to me that no matter how "little" a baby is they still have nice round faces.

kit443

I am really glad you have a diagnosis and I hope now things start to improve.

H4'sFan

I am glad you finally have a diagnosis. He is adorable, BTW.

P.G.&A.M.

Glad to hear you have an answer. I've read a bit about EE. I hope you find foods your son can tolerate and are able to get his weight up. Can your son tolerate Pediasure? I know some can't due to the milk proteins in it and they end up on Neocate, which we've had to use for my son.

 We've been dealing with FTT and so far peds GI specialist is holding off on endoscopy while my pediatrician has been pushing for it. We've been to peds GI, allergists (DS had some food allergies), many blood draws, ect... My little guy fell off the weight chart, got back on with periactin, and now I fear he's slipping back off. It's frustrating having a child who doesn't really eat.

 On babycenter.com there's a failutre to thrive group and there are some mom of kids with EE there. I think I may have also seen an EE posting on Special Needs.

cranberry27

kle+spd:

I'm going to look into this! We have similar issues with DD! Thanks for posting!!!

We have a GI dr and now a pulmonologist as she is starting to have lung issues. They think she aspirates from the reflux!

THANKS!

 

I would feel like a bad Speech Path if I didn't ask if your GI did a scope to examine for reflux signs on her vocal folds (cords).  That can help diagnose.  It can be really hard to see reflux aspiration on a swallow study with a speech therapist, but if you have any way of predicting when she refluxes I would strongly strongly strongly suggest it.  Some people will treat without really knowing if it's happening or not...if you can find out for sure I would highly recommend it.

coconutbug

I'm glad you got some answers!  It is so frustrating not knowing why LO won't eat.  I'm going to look into EE to see if it might apply to DS, who barely eats and is FTT too.  Hope your DS's treatment goes well!

MelissaMc22

Oh my goodness!

There is a girl on my local board who just got this diagnosis this week too. She is so overhwlemed with the whole situation. She hs been having allergy issues for 9 months with her LO.

You should contact her, I know she would love to talk to you!

If you are interested, could you email me? I would really like to get you her contact info,

Melissamc22@yahoo.com

And I am also sorry you are having to deal with this too.  I hope the diagnoses helps ease your mind a bit.

 

ohfour

So glad you guys finally have a diagnoses and can start to move forward.

twoasone1

Thank you everyone.  It is a relief to have some answers, but scared at what it could mean for him.  I hope everyone else who is wondering about their LO's asks their GI specialists about it because it is a relatively new found disorder and some doctors are unaware of it apparently.  From my understanding, the only definitive way to diagnose it is through an upper g.i. scope and biopsy.  Good luck everyone else who are in similiar situations.  

kle+spd

cranberry27:

kle+spd:

I'm going to look into this! We have similar issues with DD! Thanks for posting!!!

We have a GI dr and now a pulmonologist as she is starting to have lung issues. They think she aspirates from the reflux!

THANKS!

 

I would feel like a bad Speech Path if I didn't ask if your GI did a scope to examine for reflux signs on her vocal folds (cords).  That can help diagnose.  It can be really hard to see reflux aspiration on a swallow study with a speech therapist, but if you have any way of predicting when she refluxes I would strongly strongly strongly suggest it.  Some people will treat without really knowing if it's happening or not...if you can find out for sure I would highly recommend it.

Thanks! Yeah we did an Upper GI already and it was hard to catch the reflux. But that is when they became concerned with her lungs bc the xrays showed pnemonia. Since then the focus seems to have shifted with the doctors but they are telling me is all related. She had RSV at 3 1/2 months too...so not sure if the lung issues are from damage from that or the reflux. But it all seems to be related (reflux, asthma, excema....) so we are waiting on allergy tests and will then see about more GI tests....