At the end of August, I flew home in a frenzy because Zac drank some of his brothers almond milk and had an FPIES reaction.
Only a week later, just as his heinie had started to heal from that, he ate some cat poop. Sigh. The bloody diapers began again.
Weekend before last, we were excited to see two days in a row with NO poopy diapers. Surely he was getting back to baseline and we could finally retrial the Alimentum RTF!
Until Sunday the 15th. That night he gave us another reaction diaper full of who-knows-what. This time, we don’t have a clue what he ate that set him off.
All we know is that it has now been nine days and he’s STILL not back to baseline.
See the picture at the top? That is a triangle magnet that came with the Magna-doodle we bought Jed to practice drawing his letters. Zac chewed and gnawed on it enough that he actually ATE THE MAGNET! I’ve found some other interesting things he’s eaten over the last month, too:
The top of a carpet sweeper.
Jed’s SHOE.
So no, we really don’t know what he ate this time that set him off. All we know is, we still can’t re-trial the Alimentum RTF yet.
I swear, our GI and Allergist are going to wonder “What are they doing? The child still hasn’t been trialed on any foods?” when we get there next week.
Yes, our follow-up appointments in Atlanta are scheduled for next Monday, and we really don’t have much in the way of progress to talk about with either doctor.
No new foods for Zac, no home-based egg trials for Jed.
Sigh.
I really, truly believed we’d be further along than this by now. FPIES sucks.
Well, if all goes well, we’ll be pouring some Alimentum into sippy cups for Zac to chug down when we’re in the doctors offices next Monday. Then we can at least show that – hey! We’re TRYING, PEOPLE!!!
Compounding the issue is the fact that as long as Zac is nursing as much and as often as he is, there really is no way for me to pump extra milk for him. I haven’t been “free” from a nursing session long enough to pump in 24 days!
So if the Ali isn’t safe for him…well, we’re about 85 ounces short of pumped milk when February comes as of today.
<shakes it off> Well, as Scarlett says, “I’ll think about that tomorrow.”
In other news, Darrel and I are busy preparing goodies to sell at a Festival in two weeks! Darrel’s Mom decided to get a small booth at the festival, and invited us to join her to sell Darrel’s pictures and my necklaces.
We’ve already attempted to sell our wares at a craft show earlier in the year; it wasn’t a total wash, but it didn’t go nearly as well as we would have liked.
So I decided to branch out and make more stuff to – hopefully – attract more people in to the booth.
I’m busy making t-shirt scarves, seat belt pillows, different necklaces, bracelets, button bookmarks, and other miscellaneous goods, while Darrel has been ordering prints at reasonable prices in hopes that people will buy a “ready-to-hang” photograph of his.
It’s a small outlay of money, but I truly have confidence we will re-coup our investment and make a good profit, which we have undoubtedly already spent. Did I mention we’re flying to Atlanta next weekend for more doctors appointments?
This is all while I have a few ideas ruminating in the back of my head, and for these other ideas, I need to ask for your help.
I’ve thought about writing some e-books; some I want to offer for free, some I plan to sell. So I’d like to ask for input on the following ideas:
- What do you wish you’d known when you got your childs FPIES diagnosis?
- What are the best things you’ve learned about FPIES during your journey? (diagnosis, treatment, reactions, medications, food, anything you found to be the most helpful things you learned!)
- What do you find most challenging about cooking for FPIES/Food Allergies and the rest of your family? (Multiple meals, cross-contamination, meal planning, grocery shopping on a budget, etc.)
Obviously, I’ve been thinking about this a great deal on my own, but your input would help clarify what would be most useful for a book. I really, truly appreciate your help!
If you could take a moment of your time to share your thoughts on those subjects, please leave a comment on this blog post or on my Facebook wall.
Thank you SO MUCH!!
__________
So, that’s our little world. How was your weekend?
Hi Carrie, I just read your post and it sounds like you have a very active little boy considering all the food issues. My two children both moved nonstop when they were little. I couldn’t turn my back on my daughter, as she was always into something. I had to “lock my house down” because I just couldn’t keep up and had to get some kind of life back where I could get something done. Survival of the Fittest per say. Have you thought about putting an alarm of some type of his bedroom door? I don’t know if there is such a thing that you can purchase on line, but it would be better than putting a lock on it where he can’t get out (thinking of fire safety issues here). You could probably get an alarm of some type for the room with the kitty litter also. Maybe like a motion sensor (granted it would go off everytime the cat enters the room.
On another note, considering the different things your little lovey keeps chewing up, have you taken him to a more natural path type of doctor to have him tested for heavy metals or anything like that? One just wonders what ingesting those products is doing to his poor little system. it might be worth checking into if you have any good referral sources as I know crossing over to the “Alternative Side of Medicine” can be a little nerve wracking if you don’t have some good recommendations. Hopefully, everything he has eaten, has gotten out of his system, but I’m not just talking lead that conventional med docs check for through the blood, I’m talking more heavy metals that can wreak havoc on our bodies also.
On another note, my daughter had MSPI when she was a baby, which came up on skin tests, but blood tests were negative and when we went to the hypoallergenic formula (we did Nutramagin) it did help alot, but her reflux got worse, so that’s when they put her on reflux meds. We didn’t do PPI as a baby, but did the liquid Zantac. It tasted horrible, i am not going to lie, but we put it in a syringe and just squirted it into the back of her mouth. Her eyes would water each time but after 8 months of H_LL everynight, that was the first time she slept through the night. One thing I will say about the hypoallergenic formulas, is that when you get to this level, the sugar content in them drops substantially compared to the regular formula’s. ( Do some researching on the different brands and many of them hide the amount of sugar so you don’t know. Enfamil does on their website tell you the percent of corn syrup solids in them. I know you are breast feeding, so sugar probably is not an issue here, but I wanted to send you the nutritional info on the Alimentum so you can take a look at it. http://abbottnutrition.com/brands/products/similac-expert-care-alimentum
Then, google Nutramagin (Enfamil) nutritional info. Both of them drop substantially in the amount of corn based sugars. (This makes me really wonder about sugar in general being a culprit to alot of this stuff). I did notice the Alimentum does have Carrageenan in it, which is not good for the intestinal lining. Have you researched to see if there are any hypoallergenic formula’s out there that are low in sugar and without the troublesome ingredients and that are organic – ones that don’t use GMO corn (pestisides – another gut disruptor). If there isn’t one, that’s a million dollar market waiting to be taken.
Also, Carrie did you child get thrush alot as a baby? Just curious? My daughter did several times and I still think yeast overgrowth is a culprit to her constipation. If so, sugar feeds yeast, so it would make sense and yeast leads to leaky gut which brings on multiple food sensitivites and intoelrances. Thus, I’m going to start my DD on a yeast fighting diet and try some natural foods known to kill yeast. AND, I’m cutting way back on sugars. Dr. Mercola (Love that doctor for his natural approach to managing health) just posted an article today saying 25 gms max of sugar for everyone, and people with GI issues, should cut back to 15gm’s max a day. If this is what is considered optimal, why are these formula companies putting such large amounts of sugar in their formula’s – oh let’s see – who profits from this. NOT all these poor babies and their MOM’s/Dads whose hearts are breaking every day because their children are in pain. And for those of us who have genetic tendencies towards GI disorders, are having to deal with much worse symptoms.
OK, sorry for my book, but sometimes it just feels good to vent and get my thoughts out. And, if you want exposure for research on FPIES, maybe your organization should contact Dr Mercola or Dr OZ to see about getting on the show. Wouldn’t that be awesome!!! And, make sure they talk about all this sugar in the formula’s. Granted, i know most FPIES mom’s are breast feeding, but it would be good info to share so the public is aware. Just really makes we wonder if this is why there is a rise in allergies all together (from environmental to food allergies). Here’s Dr Mercola’s post – it’s about the health benefits of garlic for fighting off viruses and bacteria in the gut but go down to the section about sugar and fructose: http://articles.mercola.com/sites/articles/archive/2013/09/23/garlic-health-benefits.aspx?e_cid=20130923Z1_DNL_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20130923Z1
Hiya Deborah! Whew! That’s a lot to digest. We’ve gated off the living room from the rest of the house and basically, Zac “lives” in there except during baths and sleeping. The problem is that he eats things we never would suspect of being a problem, and we can’t remove all toys from the boys lives! Especially considering they can ONLY play in the living room, they need to have stimulation from somewhere. They’re certainly not going to get it from exploring the house! So we keep learning the hard way about different things Zac will eat and removing them as necessary.
I’m very interested in looking into the “alternative” or “natural” healing methods, but, as you say, it can be intimidating if you don’t have good recommendations. There’s a lot of completely fraudulent stuff out there, along with the good stuff that just sounds a little whackadoodle, but from the outside looking in it kind of all looks the same! LOL So yes, I’m interested, but I don’t really know where to start.
I hear moms talking about getting vitamin levels checked, for example, but have no idea how to request that. It doesn’t seem to be something most regular doctors do.
As for sugar, well, at this point we are limited on formulas to ones that do NOT have any corn proteins in them whatsoever – even broken down. He’s reacted to every formula we’ve tried that has corn in it from any source and in any form. That basically leaves us with Alimentum RTF; it’s the only one in the U.S. that doesn’t have corn syrup as its’ base. So I’m not exactly able to be picky about sugars or anything else due to his physical restrictions.
The Ali has 4% sugar, which is incredibly high (it’s the second ingredient on the list, after water and before the hydrolized casein!), and it also has carrageenan, which I’m not thrilled with, as I know that is an intestinal inflammatory agent. But again, it’s that or nothing, and we only need formula to ‘take the edge off’ his hunger, so to speak, so…unfortunately we sort of have to give it a shot.
The hope is that he’ll do well with is and we can move back to food trials; I intend to continue BFing for as long as necessary, until his diet can sustain him without it. But it would be lovely to have the formula as a “tummy stuffer”, since I don’t think the BM is enough for him any more. And being able to go back to work in February would be the answer to a prayer, and we can only do that if he has a formula. There’s no way he’ll have enough safe foods by then to sustain him without my BM.
Where did you find your natural healers? How do you know if one is good or a fake?
Thanks for all the information; there’s a lot of good food for thought in your comment. I really appreciate it! Hugs!
Hi Carrie,
I don’t have a “natural healer” yet. I tried out one on myself, and he was really pushy. When I went in there, I asked him to do the SIBO breath test on my DD and he wouldn’t. Just told me he could tell me (without any tests of course) that my daughter has yeast and probably bacteria both overgrowing and then wanted to “put us through his supplements). One of them was digestive enzymes, which I do believe in, but we had to use “his” brand, when I told him I already had Enzympedia brand at home (called Digest spectrum). And, I know from reading on alot of the Autistic sites that this is what these mom’s are using for their children with good success. Now, my DD is not autistic, I just go to their sites for info because there is a ton of good info out there, and I am one of these mom’s that is scared to try anything on my kids without reading from a bunch of different reliable sources that a product has helped and parents give their first hand experience with products. Then, I try them myself first, to see how I react to them, before giving to my kids. It’s just too scary as a mom to hand stuff out to them, because even “all natural” doesn’t mean it is safe for everyone (esp when people have allergies and food intolerances). The other thing is this chiropractor guy who I saw started me on 4 supplements all at one time. I do not believe in doing that at all. That’s just too many things at once, and a person wouldn’t be able to decifer if they are having a reaction, which one is causing it. Then, when he was going to recommend a supplement for my daughter’ constipation, I asked him what was in it, he said “you can read the label when I give it to you”. I didn’t like his pushiness and with my DD fructose malabsorption, I have to know what is in things. Thus, I ran and didn’t go back to him.
I live in the NE and there’s only one other person in town I may check out, but haven’t gotten up the nerve to do it yet. Plus, the gal I talked to at their front desk wasn’t familiar with SIBO at all or fructose malabsorption. Thus, I ask myself then, why do I need them to recommend things and take more of my money. I’ve read enough lately, I just need to put my own plan into place. But, my daughter doesn’t have FPIES that I know of. She’s never had the diarhea that many talk about with FPIES, she’s constipation based which I really think is being caused by yeast.
On another note, it sounds like your formula is like you said, the best you can get. 4% sugar is not much at all compared to the regular formula’s out there ( some have upper amount of 50% corn syrup solids). And, like you said, at this point, you’ve got to get nourishment into him. And that’s great that there is no corn in this formula. Sounds like you’ve got the best one you can to try. I will keep my fingers crossed that it works for you.
In regards to natural healers again, I think you are in the southern states – maybe Georgia area??? From what I have read, Portland, Oregon tends to be the hub for natural path doctors. They have a really good university out there. Or, you could try to see if there is an Integrative GI doctor in your area. If we had one where I live, this is who I would go to with my kids. Integrative means they practice both conventional and holistic health and they specialize in GI medicine and are actual MD’s. Maybe you could google Pediatric Integrative GI doctors in your area, just to see if they have any other recommendations. Also, I would ask your doctor about digestive enzymes. You would want plant based, but your doctor would need to recommend based on your child’s food allergies and food intolerances. Best wishes Carrie and I hope the formula works for you.
I can’t see your wares in the Etsy shop. Will you check the link? My mom wants a nest necklace with 2 blue and 2 pink “eggs” in it. If you will get that on the shop, I would love to get it for her for Christmas.
Thanks, Rebecca! Apparently my listings expired and I missed it. Oops! I renewed them, and I’ll get your necklace made and posted within a week. Thanks!!
Carrie,
Oh I can relate! I have the 9yo who sneaks everytime we fail a trial. She’s like a freakin drug addict! And sometimes she actually looks like one! Anyway, we were back to baseline and this mom (whose been dealing with this for YEARS) used the wrong tongs on her chicken! (at least that’s my best guess) We are STILL dealing with that and it was 2 weeks ago… the steriods we have to give her to stop the reaction cause her mouth sores to flare. She has one bleeding in her mouth now, so then she stops eating! I think I’d love to go back to breastfeeding before I knew about any of this.. I remember those days….
Right now we are on the Elecare Jr Vanilla but going to the GI at the end of October to ask if we can trial something else. Why? Probably because I am crazy but she needs another alternative. I am HOPING he’ll let me do the splash, but here’s the kicker she’s highly intolerant to fructose. To the point the docs at Mayo thought we’d cheated on the test and fed her grains… UMM no.. she’s highly FPIES to those….
Anyway we shall see, but you are NOT alone, we don’t eat non food items but I sometimes think cat poop might be an improvement to the pieces of bread, pop tarts and other stuff I find.. oh wait, I don’t find them the dogs do!
Thanks for being on this journey with the rest of us! I think we’d all go a little insane if we weren’t in this together!
Katrina
Katrina,
Oh my goodness! I can’t imagine. YOU are SuperMom; dealing with FPIES and fructose intolerance for 9 years! I bow down to your awesomeness. Really.
He stops doing this when he is trialing a food, and unlike Jed and so many other FPIES kiddos out there, he’ll eat things even when they make his tummy hurt. He’s SO desperate to eat! I feel like dirt, keeping food away from him. Mealtimes are becoming especially horrific for us.
I’m trying to find a way to reconfigure my pantry to put a door that can lock on it. Between Jed already digging through the cupboards and Zac getting older and soon-to-be scaling baby gates, we’ve got to find a way to keep food away from them. I wish open floor plans didn’t exist; then I could just lock the kitchen. Sadly, that’s not possible in my house. 🙁
Yes, fellow FPIES Mama’s are about the only thing that keeps my sanity (which is questionable anyway) some days! I’m so glad I found you amazing women! Thanks for your kind words, and for sharing your story.
Carrie
Hi Carrie, I read the above posts, but just digesting them has left me unable to even process an educated response! My daughter has FPIES and at 14 months has five safe foods and Alimentum RTF. Quinoa is safe and I made your Quinoa teething biscuits but think I failed them miserably. They were not crispy they were actually quite soggy and bland, not that my daughter knows anything else other than bland 🙁 I too feel the doctors will look at me funny when in three months I only trialed 2 foods!!! my daughter is now putting everything in her mouth also and I as you never know what is causing her reactions. I am curious if you or any fellow bloggers know of a relation with FPIES and external vaginal yeast infections? My daughter gets fungal rashes externally quite often. Thanks moms.
Dawn
Hi Dawn! Hmm…about the biscuits, maybe try baking them longer? The dough should be moist but not overly runny; sticky is what mine always come out to be. Also, be sure to roll them out fairly thin. About 1/8 to 1/4 inch thick. LOL Yes, bland is probably just about the right flavor for these! Just the flavor of the quinoa, after all! Once they’re safe, some spices and seasonings are exactly what these biscuits need.
I’ve never heard of a connection between FPIES and external vaginal yeast infections, but I know there are a lot of FPIES Mama’s who have struggled with candida overgrowth before. I’m sure candida either causes or isn’t helpful for external yeast infections. It all goes back to gut dysbiosis; if the bad bacteria outnumber the good, weird things happen in our bodies. One of those is an overgrowth of yeast.
Has your daughter ever had any antibiotics? Since those kill off ALL bacteria, I noticed Zac seemed to be at his very best, health-wise, after his Rocephin shots. It’s something I’m mulling over in the back of my brain right now, too.
Thanks for sharing, and I hope your next batch of biscuits turn out better. Email me if you’d like more help! mama (at) cradlerockingmama (dot) com.
Hugs! Carrie