10 month old with new diagnosis and a question...

Hello! My daughter was recently diagnosed with FPIES to cow's milk in all forms. Her first episode was back in July at 6 months old when we started to wean from breast milk and introduced formula (less than 2 oz). Amazingly enough, the ER staff diagnosed her with a "milk allergy" and sent us our way (we thought they were crazy at that point as she had consumed formula at 1 week old and 1 month old without reactions). Three weeks later it happened again, and that's when we started to explore other things it could be. She was finally diagnosed last month after a third episode (after blood work revealed no allergy to milk, little did we know that had nothing to do with FPIES) when we gave her mashed potatoes that contained milk and butter.

My question/concern...ever since she was born, she's been congested. Initially the answer we got was that newborns were always congested. As she got older, though, it was always "just a cold." For sure, since July, she has been constantly congested. An ear infection here and there, a few courses of antibiotics that work while she takes them, then the congestion and runny nose come back within days of being off the antibiotics. On one occasion her white blood cells were elevated as well. Her skin tests were negative for nuts, dog/cat, milk, soy.

I was never dairy free while pumping. She has also had eczema, and facial "rash" which they said was dermatitis. Could the constant congestion have anything to do with the FPIES? Or just a coincidence? She's been on Alimentum since August, and exclusively for the last week since my freezer stash of milk ran out.

I'm just trying to figure out if the poor thing has just had cold after cold after cold, or if it could have something to do with the FPIES (I know it's not a typical presentation).

 

Thanks!!!

Original Post

My 3-year-old was diagnosed with FPIES at around 7 months, when he reacted to squash, rice and sweet potatoes in the same month.  He also did not react to cow's milk or dairy through my breastmilk, although he did react to cow's milk and dairy after he tried it.  We had several "milk allergy" tests, but they also came back negative as is typical with FPIES.

My son had the cold after cold after cold problem from about 9 months until he was 2 and a half.  He once had a cold for 3 months straight.  We were told by doctors it was normal, but I never thought so.  I am guessing that FPIES kiddos have a weakened immune system and pick up more viruses.  We brought him to the doctor every couple months, because I was worried about complications and an endless cold can also be an indicator of a more serious condition (particularly combined with a higher white blood cell count).  

Today my son is doing better at age 3 and not picking up quite so many viruses.  We also have his FPIES symptoms better under control, which might have helped.

My son has a facial rash that comes and goes particularly with weather changes.  I never got it diagnosed as it is not severe.  It doesn't seem directly connected to FPIES.  (He did once have a rash as part of an FPIES reaction (cow's milk)- it was a red dot rash spread throughout his legs.  He also breaks out in hives when he has multiple spider bites- I banned him from playing in the kitchen cabinet after that- toddlers!)

Hope that helps!

Congestion is a very typical part of “chronic” reactions for FPIES as is eczema.  The research for FPIES is still in the infancy stage. My oldest is now six and still has severe FPIES. When he was diagnosed elevated blood counts were not considered a symptom and we got sent for SO blood tests and work up because of his elevated counts caused by reactions. Now elevated blood counts are on the list of diagnoses symptoms.  The doctors are just learning about this illness and the research is all still being performed. 

Look into chronic versus acute reactions. Most reactions via breast milk though not all present as chronic symptoms. They may then have an acute reaction when given the food orally.

Your child may have just been reacting to dairy you consumed but it could be literally anything else as well even a spice!

good luck!

 

Agreed with the above...chronic FPIES looks very different from an accute reaction. My son is 7 and gets swollen tonsils and congestion, as well as a fever with severe reactions. He did well on Alimentum, but my youngest, who is 3, has FPIES to corn so couldn’t tolerate Alimentum either ... he has a typical reaction if he ingests corn, but with the Alimentum, because it was broken down, he wouldn’t vomit but have severe eczema and rhinitis. We switched him to goat milk with addendums goat colostrum and he has done amazingly well with that!

Jess posted:

My 3-year-old was diagnosed with FPIES at around 7 months, when he reacted to squash, rice and sweet potatoes in the same month.  He also did not react to cow's milk or dairy through my breastmilk, although he did react to cow's milk and dairy after he tried it.  We had several "milk allergy" tests, but they also came back negative as is typical with FPIES.

My son had the cold after cold after cold problem from about 9 months until he was 2 and a half.  He once had a cold for 3 months straight.  We were told by doctors it was normal, but I never thought so.  I am guessing that FPIES kiddos have a weakened immune system and pick up more viruses.  We brought him to the doctor every couple months, because I was worried about complications and an endless cold can also be an indicator of a more serious condition (particularly combined with a higher white blood cell count).  

Today my son is doing better at age 3 and not picking up quite so many viruses.  We also have his FPIES symptoms better under control, which might have helped.

My son has a facial rash that comes and goes particularly with weather changes.  I never got it diagnosed as it is not severe.  It doesn't seem directly connected to FPIES.  (He did once have a rash as part of an FPIES reaction (cow's milk)- it was a red dot rash spread throughout his legs.  He also breaks out in hives when he has multiple spider bites- I banned him from playing in the kitchen cabinet after that- toddlers!)

Hope that helps!

Thank you so much for your feedback. Our kiddos sound almost the same in regards to symptoms! My daughter is constantly sick with the elevated WBC and it does make me so nervous (no fevers though, so the docs are never as concerned). For several months (around 4-6 months) she also had a distinct facial rash which they just called atopic dermatitis.

Murphy posted:

Congestion is a very typical part of “chronic” reactions for FPIES as is eczema.  The research for FPIES is still in the infancy stage. My oldest is now six and still has severe FPIES. When he was diagnosed elevated blood counts were not considered a symptom and we got sent for SO blood tests and work up because of his elevated counts caused by reactions. Now elevated blood counts are on the list of diagnoses symptoms.  The doctors are just learning about this illness and the research is all still being performed. 

Look into chronic versus acute reactions. Most reactions via breast milk though not all present as chronic symptoms. They may then have an acute reaction when given the food orally.

Your child may have just been reacting to dairy you consumed but it could be literally anything else as well even a spice!

good luck!

 

So interesting! Thank you so much for your response. I'll be adding this topic to my research.

Ameador1 posted:

Agreed with the above...chronic FPIES looks very different from an accute reaction. My son is 7 and gets swollen tonsils and congestion, as well as a fever with severe reactions. He did well on Alimentum, but my youngest, who is 3, has FPIES to corn so couldn’t tolerate Alimentum either ... he has a typical reaction if he ingests corn, but with the Alimentum, because it was broken down, he wouldn’t vomit but have severe eczema and rhinitis. We switched him to goat milk with addendums goat colostrum and he has done amazingly well with that!

Thank you!!! I'll be contacting the allergist to discuss this further...she tolerates the Alimentum from a GI standpoint, it's just the congestion that's worrisome. I appreciate the advice

It's not normal. . . It's an allergic / sensitivity  reaction to something.  I was told the same thing from the dermititis/eczema / acid reflux /ear infection.  Make a very detailed list of everything that hasn't and has caused an obvious trigger (package type, brand, every ingredient).  Cross reference through to figure out what it is until youre set.  I don't know what butter you use but I only buy Finlandia (no added anything whereas others you will find weird stuff).  During food testing, stick to the same product . . . Not all are equal.

Franny,

Thank you. It should be a fairly compact list, she's had limited intake, basically just breastmilk, Alimentum, and Gerber baby food. It just seems so constant, and because we never knew about the FPIES/allergy situation, I never went dairy free, and for the last month she's been eating just out of my freezer stash with Alimentum to supplement. It also seemed to ramp up right around the time she had dairy for the first time, and has been going ever since. I'll be reaching out to her allergist, thank you again!

Thanks everyone.

I contacted the allergist who recommending trying Zyrtek for a month. Otherwise it is most likely just several colds. I will continue to keep track of what foods she's had and how it effects the congestion. I appreciate all the feedback

JESS: what would the more serious condition be with prolonged cold symptoms and elevated WBC?

Hi TSF,

I apologize- what I meant was prolonged cold symptoms and elevated WBC AND on/off fever could be something more serious (a whole list of conditions it could be- I can't really speculate).  

We thankfully didn't have the fever piece except when tied to a clear virus, so the doctors were not that concerned.

Since my son's symptoms ebbed and flowed, we think it was a seemingly endless series of viruses.  We did not have any complications from the endless colds- though his symptoms would tend to go in the chest (coughing) rather than in the ears.  Croup (seal-like bark) was a nasty virus by the way.

We didn't link his congestion to FPIES/specific foods, but it seems like others had that problem.  We did however link his reflux problems/symptoms to FPIES food fails.  So, it seems every case of FPIES is a bit unique.  

I've come to believe that ANYTHING is possible with FPIES, so just track everything.  For example, my son reacts to anything in a can (he's allergic to that type of packaging- not necessarily the food inside).  Even if the doctors don't believe me, the FPIES family usually does, since it seems we've all seen a lot.  : )  

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