The Updated link....more than FPIES!!

 
November 10, 2012 4:29 PM

I recently connected with a neice who lives 1500+ miles away. Thus I am new to this segment of medicine. I started researching Fpies so I could support her in this journey. Her son can eat nothing! Neocate, water and ice. Apparently even a few crumbs sends him into shock and the E.R.

So I started digging on line and came across another condition which I think could be the likely villian and am wondering if anyone on this site has had a doctor follow this possibility.

Its called MCAD/S.

Mast cell activated disorder/syndrome

It is not reconisable on standard tests, such as those for FPIES.

Although the tests are the same (blood/biopsies/bonemarrow/throat/intestines etc) the lab methods are different and extreamy specific. Meaning they MUST be looking for MCAD to find it.

So have any of you had doctors look for this?

Has it been ruled out?

 

Another question, I see alot of kids with the gastor tube and backpack for feeding. What are the pro's and con's?

 

To me it appears it would give my neice and her son a better quality of life vs. 20 bottles per 24 hours.

 

To the experts who may read this, what is the difference between Fpies and MCAD in the various gastrointestional tract?

 

What if a patient had MCAD in all segements of the tract? It seems to me it could explain my neices sons issues, what do you think?

 

My father died of a MCAD, and I'm about to be tested for it.

 

Finding a box to place your child's health issues in is a very powerful emotion. But if it's not a perfect fit, is it the right box?

Last edited by CrazyAuntRosie November 21, 2012 6:47 PM
 
 
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November 11, 2012 3:26 PM

Hello!  So sorry to hear of your niece's family struggles.    There has been discussions about mast cells being involved with FPIES for some kids, speculations among other family members in the support boards off and on over the years.  I'm not sure if/how their doctors have ruled it out but our ruled it out by biopsy for mast cells on every scope my son has had (along with looking for eosinophils, etc) to be sure we're not missing something co-existing with his FPIES.  

Mast Cells- or mastocytosis seems to be even just as little understood as FPIES....they may be connected or different- I, personally, think there is still much to learn (about both).  
Please keep us posted on what you learn!!  

 
 
 
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November 17, 2012 4:08 AM

I just got on the midwest Fpies site. There is reference to 'families' having their diagnosis changed from fpies to mcas/d. Seems to be alot more being done in this region of the county connecting the dots for some families.

 
Last edited by CrazyAuntRosie November 18, 2012 1:12 AM
 
 
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November 18, 2012 1:59 AM

I attempted to share my online research with my nearby FPIES community. Seems I caused quiet an uproar as that particul site is apparenty limited to exchanging the battles families face and the exchange of information referencing MCAS was quit literally seen as an attack.  I thusly removed all my posts and ending up blocking my pm's as they moved there to have 'private conversations" I wish I had made one final post before giving up. I suggest those with open minds google" Mast cell activation and FPIES" If one does they will find over 6000 posts to read through. Interestingly this very site has a listing on that page yet I haven't found it actually on this site yet! Due to the obvious lack of interest by the very people who need to be made aware of the latest research (as the dr's most are seeing assumingly aren't) attacked me personally for trying to enlighten them, someone else ( apparently with more sugar than I) hopefully will have the courage to broach the subject soon.

 

Regretfully due to their specific personal attacks on a messenger of information and hope I was left no choice other than to jump ship. I almost wish I hadn't deleated my posts as I'm certain I will definatly be misquoted. Oh well. The personal pm's and board postings triggered my own medical issues to the point I just returned from the E.R.

 

I hope someone reads this and guides others to the 'Mast Cell Activaion and FPIES' links. Over 6000, yet only one parent even attempted to support the theory. With all the pm's from the people with out enough back bone to speak on board, my frustration led me to pushing this one insightful person away as well. She admits she is covertly trying to get other families on board - from the board - to accept the possible connection to MCAS. It's seems to me that with over 6000 links...it's a tad bit more than idle conjecture.

 

I may not have a child with FPIES thus I do have more time to research the issues. As I'm confined to bed with ample time I dare assume I have done more digging on this than alot of others. Roughly 40+ hours a week for the past 4-5 months, but I have learn't nothing???

 

How many more children and families will cling to FPIES unaware of the cases re-diagnoised as MCAS/D with a completely differant treatment plan than food trials. It breaks my heart. Maybe I'll try again next year, maybe I won't. After all I don't have a child with FPIES so why should I care?? I just hope those who sent me packing don't end up some two years down the line, another two years of suffering, only to say 'I wish someone would have told me sooner"

 

Someone did.

 

 

 
Last edited by CrazyAuntRosie November 19, 2012 3:00 PM
 
 
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November 21, 2012 7:00 PM

I am here again due to a recent turn of events. The little boy I spoke of is currantly in the hospital with kidnay failure. I haven't had the oppotunity to talk with his mom, but she did send me two texts today:

   "Michaels in the hospital, with kidney failure he may die" 11/21 @ 12:31pm

 

   "On his death certificate it will read kidney failure, failure to thrive or hypovolemic shock. NOT FPIES, though FPIES caused all three"  11/21 @1:04pm

 

In a later text she states it not Masto either..so I'm assuming this test was  done?

 

 

 

 

 
 
 
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November 21, 2012 7:10 PM

I can't help but feel I need to reiterate, if the shoe doesn't fit don't wear it!

If your mama's instinct says 'I think there's more to it" do whatever you have to due. Kick, scream, jump up and down yelling fire if the doc you're seeing isn't 100% positve it's only FPIES.

 

Michaels cause is a worst case senario. Alot of kids will just have FPIES as thus far that remains Michaels only diagnosis.

 

Not saying mama did, just an example to all not to get used to the normal everyday FPIES reaction - the next one could be worse...becoming life or death as it is right now for the little man I never met.

 
 
 
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November 21, 2012 11:02 PM

Update on this little man....as of 7:17 Mama and him we're heading home.

 

This is the text I recieved:Looks like .....will be coming home, levels were all off due to severe dehydration. Waiting to hear from specialist for more info. Please just take it easy on my FPIES family, they are my shoulder to lean on.

 

Please think about this situation so you are never placed in her position. Having read for many, many hours on various sites, I wish I would have directly told mom to print off the pamphlets and always have a complete copy of her son's condition with them everytime they leave the house. A great deal of time, money, fear and heartbreak was experianced today that could have been avoided by one and all had this information been immediatly handed to the doctors in the first few minuutes of arrival at the hospital.

 

Someone needs to come up with a advise letter parents can print off just for themselves. There is alot of info out there on FPIES and beyond. One site offers tags to put on zippers & stuff so everyone will know a child has FPIES.

 

Thousands of kids are temporairly lost in a store every year...To calm them they are often given a treat, a sucker, a juice ect. Without tags an FPIES child would be at great risk should they every wonder off.

 

Check more sites, read more blogs. I've put in over 700 hours since July on FPIES and beyond. Something I hope every parent will do.

 

Due to all the drama pointed my way for trying to share what I've learned and as I do not have a child with FPIES ...(so I know nothing)

 

Good-bye and good luck to each and every FPIES parent & child.

 
 
 
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November 21, 2012 11:17 PM

You bring up an excellent point about the need to carry info about FPIES with you and even on your child's person in the event of an emergency. In fact, on our site we have a copy of the emergency room letter for parents to print out and carry with them when they need to take their little ones. You will find this at the link below, in addition to an ER bag checklist and a link to the PDF print out "About FPIES" for medical professionals and families to use as a resource:

http://fpiesfoundation.org/emergency-care/

 

In addition, you mention the need for a label/sticker of some kind to accompany a child with FPIES in the event of separation. There are some great options out there: medic alert is a wonderful system for a medical ID bracelet for little ones with complex medical issues. http://www.medicalert.com/ One of the ongoing fundraisers for The FPIES Foundation is through the company "Label Your Stuff." Families can create labels for bags, food containers, clothing, etc alerting others of an allergy alert. We got some of the lablels for my daughter's preschool supplies and they have been wonderful. http://fpiesfoundation.org/ongoing-fundraisers/ Another great idea I have seen mentioned on the boards is an information sleeve that attaches to car seats in the event of an accident. http://www.topoftheline.com/me...rt-seatbelt-tag.html

 

I am very sorry to hear about your nephew and hope that he can be on to brighter days ahead. The CBC levels can certainly be concerning during a severe FPIES reaction-- I am glad that he is on his way home. 

 
 
 
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November 22, 2012 11:39 AM

Thank you for sharing these important links.

 
 
 
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