Skip to main content

Search

Reply

Re: Can't find formula to feed my baby, please help

My Little Man ·
Hello Hulya, So sorry you are going through this, I do hope you find a formula your little one can tolerate; or are able to keep your supply up. I know just what this feels like, my little man did not tolerate any formula's either. We made one (which supplied what he needed in calories but not all micro-nutrients- it was a constant struggle to get the nutrients he needed. Also wanted to let you know, this thread was posted on the Foundation Facebook to ask for additional support and...
Reply

Re: Food Trial Plan?

My Little Man ·
You can make little 'dots' from her safe foods -- use a piping tool or a ziplock bag and pipe/drop dots onto safe surface and freeze or dry. We did that when my guy was little. I have been seeing a lot of recipes out there for it - food allergy community and non-allergy. Also, Chee-Cha puffs are a great finger food snack - they are just potato and salt. If you wanted to trial potato next, anyway. Call the company and they will likely send you a sample bag- they are really great- even mention...
Reply

Re: Fever reducer advice northern WI

My Little Man ·
Hello, I live in Southern MN and we have used Walgreens with great success. I just took some FPIES information in with me and asked to speak to the pharmacist directly and explained what my son needed. They do a dry powder of the med with calcium carbonate and put it in a capsule (which I believe is made from pine bark- which our son tolerates but we don't use the capsule anyway- just empty it into safe water and give it to him). Do you have a compounding Walgreens? Or, maybe this Walgreens...
Reply

Re: IV Nutrition

My Little Man ·
Hello Jax, My heart goes out to you as I have been in your same situation....my little man has a very similar story -- making my own formula and IV nutrition. TPN was hard, but unavoidable when he had villious atrophy after a soy trial, so he had it for 5 weeks in the hospital to heal the villi. He then had to go on TPN again later that year when we couldn't find any new safe foods and he started refusing to eat his few safes- including peaches which provided his only source of Vit.C so he...
Reply

Re: Anyone else in my area?

My Little Man ·
Hello! I know there are other members of the groups that are from Australia. I know I've met some great momma's on the boards from there over the years. Some are on here, some on Facebook and others on babycenter. Also, have you connected with this group? FPIES Australia: https://www.facebook.com/FPIESAustralia It looks like there is also a support group page for FPIES Australia on Facebook. Also, this mom is from Australia - her daughter has FPIES as well.
Reply

Re: Exacerbation chronic FPIES?

My Little Man ·
I replied in your other thread. Do you keep a food journal? It does sound like something isn't quite right in his gut...
Reply

Re: Gio' and David Ronan, a chronic FPIES

My Little Man ·
Hello and welcome Jane, but so sorry you have to be here. You have been through so much with your little guy! I am wondering- did you say he started taking Nutramagin? Or trialed it and not taking it? I'm wondering if that is causing some chronic issues? If he was sensitive enough to react to broken down dairy in your breast milk, he may be sensitive to have some symptoms/reactions from the Nutramagin which is not completely elemental but hydrolyzed to be tolerated by many dairy allergic.
Reply

Re: Could we be heading in the right direction?

My Little Man ·
This mom isn't in NZ but is in Australia: Maybe connect with her and see if she has resources specific for NZ? https://www.facebook.com/AllergyFreeCoach Also, I've seen NZ moms on this board: http://community.babycenter.co...terocolitis_syndrome This mom is down in your area also: http://mylittlepiewithfpies.blogspot.com/
Reply

Re: Pediatric Acetaminophen

My Little Man ·
Yes, there are ingredients in tylenol that could cause symptoms or a full reaction; there are also kids who simply do not tolerate acetaminophen. My son reacted to the tylenol because of the corn ingredients but there are other ingredients that could cause issues. Once we figured this out, we got our meds compounded with a compounding pharmacy and it is amazing the difference- pain relief without worse symptoms later!
Reply

Re: Skin Prick Test

My Little Man ·
There ARE families that have experienced a variety of symptoms from SPT. We are not one of them, so I don't have any specific experience; but just wanted to reply and let you know that you are not alone. I 'poked' a momma that I know has experience in this and hope she will weigh in.
Reply

Re: Feeling overwhelmed- NEW

My Little Man ·
Sorry for the delay in my reply. My little man is on hemp milk as well! I have made a formula out of it in the past as well (although it wasn't itself nutritionally complete). What soy formula are you using? If she is tolerating the soy protein but still struggling with a formula, have you tried Ross Carbohydrate Free (soy)? We were hoping to utilize that as a vitamin supplement in the hemp milk formula but he failed it, in hospital challenge. Is she still on any of the other supplements or...
Reply

Re: Hit a low

My Little Man ·
Hello, and so sorry for the toddler jag! It is so hard when typical toddler jags strike our already restricted kiddo's!! I know, my little man goes through it too- he has a very limited diet as well and will ask to eat but refuse everything I offer (from his safe list). So disheartening, I know.
Reply

Re: soaps, lotions, cleaners and other new parent advice

My Little Man ·
Hello, and welcome. First of all- good for you savvy momma! It took us a few months to tie in the bath soaps and lotions, etc. For some kids, yes- these ingredients can pose a problem; so reading labels on everything is a good idea, in my opinion and experience....particularly of course if there is any risk of ingestion. Glad to hear the Neocate has helped her get to a baseline, the gut rest from this right now can be the focus- with this diagnosis, sometimes the gut rest outweighs the need...
Reply

Re: Is my baby having Fpies?

My Little Man ·
Hello, so sorry you had to find us here. I would say those symptoms/reactions/reaction time, etc. certainly warrant a full evaluation for FPIES by an experienced/knowledgeable Allergist or GI. If FPIES, or any other allergy, rice will need to be strictly avoided. There are alternative grains- psuedo grains, like quinoa, millet, etc. that some children have success with after trialing fruits and vegetables, even some meats (delaying grains a bit maybe?). Again, sorry you had to find us here-...
Reply

Re: New Label Neocate Jr.

My Little Man ·
Yes, I had suspected the biggest suspicious culprit is the rice but also did hear of someone talk about a potential soy contamination. And, as you state- it's all just guessing and here-say until things are looked at more closely. I know just how you feel about wanting to analyze it, I wanted to do the same with my breastmilk that we knew my Little Man was reacting to - we went cold turkey at 7.5mo. to elementals - which he also couldn't tolerate but at that point, the differential was...
Reply

Re: New Label Neocate Jr.

My Little Man ·
I am so sorry to hear of these reactions....so hard, I know. What is the thought on what is causing it? Is there a commonality? The potential for rice contamination (due to the Nutra)? I pray there is a solution somewhere....I know personally how difficult it is to not have a safe formula; although my son is doing well now, we've struggled because of the very sensitive nature of his FPIES triggers.
Reply

Re: In limbo.. help?

My Little Man ·
You mention no vomiting but then say that one of her symptoms is clear acidity vomits? That is a symptom of FPIES...acidic/bile vomit. How long after eating are the vomits? (there often isn't food left but sometimes can be- mixed in with the bile). So sorry to hear your little girl is having these difficulties...you are certainly not alone!
Reply

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

My Little Man ·
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...
Reply

Re: Can fpies be hereditary?

My Little Man ·
http://onlinelibrary.wiley.com...012.04027.x/abstract This is just an abstract available, but the Pediatrician would be able to access the entire article- there is some promising information in the article about what is being learned about FPIES worldwide, and if I remember correctly there was some discussion on the heriditibility. The short answer is, not enough is known but I personally do hear of many families now with 2 FPIES children- as the diagnosis itself increases. Sorry to hear of...
Reply

Re: Could this be FPIES?

My Little Man ·
What she said. And just to add....go with your momma intuition. Hang in there! It does get better.
Reply

Re: Fighting to help my Daughter help please!

My Little Man ·
So sorry your daughter is having these struggles. If other conditions that mimic FPIES have been ruled out (like, Eosinophlilic Disorders), the doctor makes the diagnosis based on the clinical history. Do you do a food journal? That is an excellent place to start. There are some sample food journals as well as a multitude of other resources on the Foundation's website: http://fpiesfoundation.org/for-families/ - getting started toolbox might be your first stop. It is hard to say if the rashes...
Reply

Re: We survived FPIES!

My Little Man ·
SUCH a great story!! So glad to hear! I think our little guys are around the same age, and our stories sure start out similar! So glad your little guy is saying good-bye to FPIES!
Topic

1yr. Anniversary!

My Little Man ·
The FPIES Foundation wants to thank all of you for your ongoing support over the past year. As we prepare for our one year anniversary on Aug 31st, please share with us in the celebration by joining us on our new website. You will find a variety of...
Reply

Re: Minnesota

My Little Man ·
yes! There are families doing GAPS. You can read about some here: http://gapsandkids.com/ We are in Rochester. We did a meet and greet in the cities last month, with a few families- I think there were about 8 of us or so. Are you on Facebook? There is an FPIES Midwest board there, c'mon over!
Reply

Re: Does each episode get worse??

My Little Man ·
Oh my goodness, you just wrote my son's story!! It is really close to what he experienced as well. For us, yes- reactions get worse. They "build" in his system, or he has chronic FPIES to them (underlying reactions we aren't seeing outright) and then the break and re-introduce brings on the more acute reactions. There are moms that actually build a break in to the trials to be sure they aren't having these build/chronic reactions. Wheat isn't necessarily a common trigger but a lot of kids do...
Reply

Re: Minnesota

My Little Man ·
Yeah, I'm Joy
Reply

Re: Minnesota

My Little Man ·
This is a great idea! Have you tried to get some moms together? There are at least 5 of us in the area here in SE MN.
Reply

Re: Glad I found this site!

My Little Man ·
So glad you have found helpful information! Both from your doctors, dietitian and this site! Glad to hear your little guy is thriving on a well-rounded diet. Dairy is in a lot of things so difficult to avoid, I agree!! My eldest was dairy intolerant, so we fell right back into that with my 4th, which helped but then things progressed again- which is when we found our FPIES path. It's all so complex, so glad you are on the path of healing and thriving (dairy free)!
Reply

Re: New here

My Little Man ·
Yes, we are in Rochester. Yes, our doctors are at Mayo. Although we have also seen allergists in the cities. In our experience, not many doctors truly understand all the complexities that go with FPIES. Many doctors are just beginning to recognize classic FPIES - and there seems to be so much more that is out of that realm (my son included). My son is almost 3 now. We have a GI doctor here that has helped us enormously but we haven't been able to interest any other doctor here in helping us...
Reply

Re: Dr asked when I would wean ?????

My Little Man ·
That makes much more sense, good idea to call back for the clarification!!
Reply

Re: Dr asked when I would wean ?????

My Little Man ·
These kiddo's can react to almost anything, anything with a protein or that has had a protein in processing....so, chocolate can be one of them. Chocolate is also something some babies without FPIES can find hard tolerating in the mom's diet too so hopefully it is "just" that....either way, oh my gosh- no chocolate!?! :/ How is the formula going?
Reply

Re: Just diagnosed

My Little Man ·
These stories are posted all the time, so I know they happen! We're still in the thick of it but can see his system maturing as he ages so we always have hope. How is oatmeal going?
Reply

Re: Anyone in abbotsford, canada?

My Little Man ·
http://community.babycenter.co...milies_where_are_you
Reply

Re: Anyone in abbotsford, canada?

My Little Man ·
I know there are Canadian moms! Have you posted/looked on babycenter? There is a post there labeled, "FPIES moms where are you from?" you could start with.
Reply

Re: New here

My Little Man ·
Wow, wow, wow!! This is a true testament to a mothers instinct!! Nothing beats it for sure! Thank you so much for sharing, it is very inspirational. Assuming you are in the cities? We are in Rochester.
Reply

Re: Dr asked when I would wean ?????

My Little Man ·
http://fpies.bofferding.net/elimination-diets.html
Reply

Re: Minnesota

My Little Man ·
https://www.facebook.com/groups/136247823100249/ You also might try this facebook group- lots of MN moms on there....if you're on FB. Who do you see in GI and Endo?
Reply

Re: next step????

My Little Man ·
I've heard of many families either bringing their safe foods to the restaurant or getting a copy of the restaurant's menu (so some planning ahead) with ingredient listings- even calling ahead to see about how things are prepared to see for the possibility of cross contamination (which can be just as much of a risk). Rice is a tricky one- in things you wouldn't expect! The timeframe for outgrowing a reaction is really individualized but the common timeline given is 18mo....what does the...
Reply

Re: Dr asked when I would wean ?????

My Little Man ·
Did you get a consult to see a dietitian?
Reply

Re: New here

My Little Man ·
Wow, what a journey you and your little girl have been on! So sorry you hare finding your way here but agree that talking to your doctors about FPIES may need to be explored. Unfortunately FPIES is a clinical diagnosis so there isn't any tests except ruling out other conditions that may mimic FPIES. I have heard a few babies getting Nissen/Fundo's to control what is thought to be severe reflux. If she is still experiencing the symptoms, I would also tie that into the discussions with the...
Reply

Re: Could this be fpies?

My Little Man ·
So sorry you have to join this club but you have already done so much for your daughter by finding this diagnosis and finding the steps you need to keep her thriving. I thought of this article, I put on my blog, as I read your words here- this helped me when I was at this stage so I hope it can help you now too. http://fpiesmudpies.blogspot.c...word-on-empathy.html People are usually well-meaning (there are exceptions) but just remember- it is about their own coping and not their judgement...
Topic

FPIES in older children

My Little Man ·
There have been some families recently that are looking at FPIES in their older children (older than infancy and toddlers) but posts have been scattered so wanted to direct a post for those connections. :) 
Reply

Re: New here! Need advice...

My Little Man ·
Oh my goodness, what a journey your daughter has been on! SO glad to hear you are connecting some of the puzzle pieces though. The SBBO is a an interesting tie in to the potential (probable?) FPIES in her infancy as there are papers about how FPIES is exacerbated or even "woken up" from the dysbiosis (severe) in the gut. Also interesting, for me, to note that the SBBO causes those symptoms. My son has been looked at for SBBO but when they go to biospy- there isn't enough fluids in his...
Reply

Re: Could this be fpies?

My Little Man ·
This sounds very much like something is going on and very well could be FPIES. There are other conditions that mimic/mirror FPIES in infancy and so seeing a specialists to begin to sort out if it is FPIES or another condition will be essential at this stage. The rice reaction sounds classic FPIES, the other foods could be that she will not tolerate them/have a reaction or it could be that her gut needs further rest (breastmilk or formula only) to recover from the rice reaction. Although the...
Reply

Re: Does this sound like FPIES or am I overreacting?

My Little Man ·
Hello, glad your searching led you here- there is so much more information now on FPIES than there had been in recent years! FPIES is thought to be a spectrum along severity- much like a typical (IgE) allergy is, where the same allergen does not produce the same result in 2 kids allergic to that food. FPIES is the same- it shares the common symptoms but can present itself in varying degrees along those symptoms. Your little one certainly sounds like a visit to an FPIES knowledgeable...
Reply

Re: Could we be heading in the right direction?

My Little Man ·
Yes, at this age- the symptoms can mirror an EGID (eosinophilic gastrointestinal disorder), so good they plan to rule that out, if the scope come back clean then for sure bring up FPIES to the Ped/Allergist/GI. Not saying for sure that is what it is but with these symptoms, it is something to look into. They will likely look into other illnesses to- FPIES is a clinical diagnosis and one of exclusion. So sorry to hear your little guy has had so many struggles. FPIES can be acute/classic or it...
Reply

Re: Treading Very Carefully...

My Little Man ·
Wow!! You sure took me back to those days when my husband and I were calling in sick to work as well- our little man Sam was so very sick as well and no one knew what to do or how to help- it was torture and so hard! So glad to hear he is doing well now! Also glad to hear your allergist was familiar with FPIES!
Reply

Re: CRACKERS!!!

My Little Man ·
A few blogs if you want to make your own! I've heard King Arthur flours are gluten free and just white flour (no barley). http://fpiestreats.blogspot.com/ http://yummyinmyfpiestummy.blo...graham-crackers.html http://babybeesfpiestestkitche...e-passed-part-2.html
Reply

Re: Suspect FPIES

My Little Man ·
It certainly seems like FPIES may be what you are dealing with considering that classic reaction to the sweet potatoes. Are you keeping a food journal? There are some samples and tools for writing one on the FPIES Foundation website if you need some examples. But a food journal and slow methodical trials will be in his best interest- taking at least 7-10days for food trials to observe for any reactions. A medical team is, of course, helpful but you can begin with these measures and keep him...
Reply

Re: I think my daughter has Fpies

My Little Man ·
Yes, that is why they call FPIES a self-limited diagnosis....avoiding the triggers should mean a happy healthy baby. Unfortunately there are no tests that say what triggers to avoid except the trials (although patch testing has worked for some kids to give a starting road map); so hard to risk making your child sick to find food. I found making a care plan with our medical team to be most helpful- and this included (for us), our personalized approach to trial- food logs, how many days to...
 
Post
**The FPIES Foundation does not provide medical advise, diagnosis, or treatment. ******THIS INFORMATION HAS NOT BEEN REVIEWED BY THE FPIES FOUNDATION'S MEDICAL ADVISORY BOARD.********* Terms of Use: http://www.thefpiesfoundation.org/index-9.html
×
×
×
×