Anyone from Michigan ?

Hello ! I am a mommy of a 13 month old , at 10 months and three doctors later I found out my son had FPIES at 11 months old. Along with my son having FPIES he also has Von Willebrands ( bleeding disorder ) . We work with a team here in Michigan @ U of M Motts Children's Hospital. I have a GI doctor and a Allergy doctor, We went on wednesday and did some more allergy testing and it came back that on top of the FPIES my son also has a full blown Egg allergy . As soon as I saw his back swell up it hit me like a ton of bricks. The doctor was talking to me about epipens and allergy action plans and what to do if this happens or if that happens. The nurse was going over epipen usage with me and it was like charlie browns teacher was talking to me I heard NOTHING she was telling me.

I am having a hard time taking this all in , I know its not the end of the world but for me its a lot to take in at one time. I wish my little Henry could get a break he has had it hard since I was pregnant with him, he tried coming at 22 weeks, 26 weeks, 31 weeks and I had him at 34 weeks,He spent one week in the NICU , he has the bleeding disorder and now Egg allergy and FPIES.

I am one lost mommy.

Original Post

I am so sorry you have had a tough road for sure.  My son is 15 months and was diagnosed with FPIES at 10 months.  He also has IgE mediated allergies to eggs, shellfish, peanuts and tree nuts.  It's tough to say the least.  I must make all of his food and bring it wherever we go.  Do you  have allergist as part of your team at Mott's?  Our nutritionist has been our greatest resource for direction of where to go with food trials.

 

Its a good thing they give you all of the allergy action plan stuff written down because I was the same way, completely overwhelmed thinking how could we have something else added to our already very precarious life!  

 

Sending you lots of strength and clarity and we remain hopeful that all of these things will resolve as our little guy gets older but in the mean time life keeps us on our toes!

I do have a allergy doctor as well at U of M and they are GREAT. It is so comforting to know I am not the only one out there with this. Originally Posted by Maxmama:

I am so sorry you have had a tough road for sure.  My son is 15 months and was diagnosed with FPIES at 10 months.  He also has IgE mediated allergies to eggs, shellfish, peanuts and tree nuts.  It's tough to say the least.  I must make all of his food and bring it wherever we go.  Do you  have allergist as part of your team at Mott's?  Our nutritionist has been our greatest resource for direction of where to go with food trials.

 

Its a good thing they give you all of the allergy action plan stuff written down because I was the same way, completely overwhelmed thinking how could we have something else added to our already very precarious life!  

 

Sending you lots of strength and clarity and we remain hopeful that all of these things will resolve as our little guy gets older but in the mean time life keeps us on our toes!

 

I'm from Oakland county!!  (If that helps at all). My daughter will be 17 months on March 22nd and was JUST diagnosed after seeing her GI dr since she was 9 weeks old.  .  .  Skin tests were positive at 12 months for turkey, eggs (all parts), and tree nuts, we 're set to re-test as soon as she goes 1 full month w/ out a GI reaction.  She see's the pediatric sub-specialty group at Beaumont RO.

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