I feel like LIFE just gets in the way. I have all these plans to post and be able to come back here in 20 years and remind myself of what I've been able to get through! What major obstacles I've been able to overcome!
BOSTON: Well we made another trip out to Boston. This time to see Rheumatology, Motility, and Dermatology. Rheumatology determined that she's good to go for now, but if any symptoms or signs pop up, she needs to return YAY!!! Dermatology diagnosed her with Rosacea. Since the cream they gave us is currently working, we're okay to stick with it. If there's a point that it stops working, they will switch her over to an oral medication as well.
Motility. While I do like the doctors and think they're nice, I am beyond frustrated. They are trying to tell us that her being so constipated that she needs to be hospitalized every 6 weeks is behavioral. That her need for Miralax, dulcolax, colace, and senna, and we still get pebbles is behavioral. I, as a mom, am NOT accepting that as an answer. I expressed my frustrations with her GI here, who also agreed with me that she wanted to rule out everything here first. She will also be conversing with a GI at Columbia University to see what her thoughts are.
Every day I am learning something new about the food industry. Today, from a fellow (and veteran) FPIES mamma I learned of a reason why we may have failed raisins but passed grapes a year ago. Turns out... RAISINS are OFTEN made using SUNFLOWER OIL! We are acute to sunflower oil! Who knew!
I have a love-hate relationship with those memory apps and reminders from Facebook and Google. They either remind you of the happy or of the sad. Today it was bittersweet. Up popped this photo (below) of my Littlest daughter Kennedy. Kennedy was one-year-old at the time and she had just had a reaction to some Cheerios. We ended up in the emergency room and then unfortunately she ended up admitted because she could not keep anything down.
I say that this was bittersweet for us because it got me thinking that the last time she was admitted to the hospital, well for a FPIES related event, was actually that time. Meaning she has gone an entire year without being admitted to the hospital for any sort of FPIES related issues which to me is a massive WIN!
So today we celebrate. We celebrate the fact that, even though my kiddo still has to avoid a bunch of foods, she has made it an entire year without having to spend time in the hospital for something that has to do with her food related issues.
Moral of my story- LISTEN TO YOUR MOM-INTUITION- My daughter was just discharged after 5 days in the children’s hospital. On Labor Day she came down with a few spots on her feet, then on the rest of her body within 2 hours. She went to bed and woke up with them even more wide-spread all over.
I can’t explain why I had a feeling initially that it wasn’t HAnd-Foot-and Mouth (HFM), but it was last Tuesday that I had that feeling. I called the pediatricians nurse line who said they don’t see kids with HFM & to treat the symptoms.
Tuesday night I still was uneasy because the spots didn’t match the photos I was seeing of HFM, I called the nurse line again and they said the same thing.
Wednesday morning she was so much worse, lethargic, and the spots had all turned to blisters from head to toe. By 10am I knew this was not normal and demanded for her to be seen. They got us in at 5pm.
Immediately upon walking in, the pediatrician called for two other pediatricians who all agreed we needed to go to the ER. We walked into the ER and were immediately put into isolation 30+ labs done, monitors everywhere. Turns out my daughter had a potentially life threatening reaction to a virus, one of her normal meds, or Tylenol (not sure which) called Stephens Johnson’s Syndrome.
Fast-Forward 5 days, we are headed home now. She is still going to be stuck in isolation at home for infection risk, and her skin is falling off in sheets where she had blisters (25% of her body).
PLEASE if something isn’t settling with you, push push push to have someone look into it. Our story turned out best case, but I hate to think that if I hadn’t pushed for her to be seen how badly it could have turned 😞
Welp, my kiddo got a Cheerio. The sitter is amazing and we've basically never had an issue with food there, ever. She got a Cheerio today. The sitter (again who's fabulous) sent me a message right away that at most she got one and at best she only licked it. Welp based on my social media groups I'm in, many moms would have responded with horror. "OMG IM ON MY WAY HOME, MY CHILD MIGHT DIE" or "SEND ME PICTURES OF HER EVERY HALF HOUR AND IF SHE SO MUCH AS COUGHS CALL 911". I find that I tend to be in the minority though as my response is "eh just one? I'm 99% sure she'll be okay since she only reacted to 5 before. Let me know if she starts puking and I'll come get her". I find that if I can remain calm, I can eliminate massive amounts of anxiety, worry, stress, headaches etc.... Especially considering this isn't the first time my little one has gotten something that she shouldn't and definitely won't be the last. We can be the best parent's in the world, but kids will still be kids.
Okay so if you're anything like me you know that kids get sick. They get colds, viruses, etc... What they don't typically get is pneumonia twice in 10 months. Well that's what faced us with my oldest, P, this year. She had pneumonia in November and then again three weeks ago. So I made an appointment with the pediatrician to see if there's something more here. She agreed that blood tests would be good, so she ordered the typical CMP, Sed rate, CRP, etc... All came back within normal limits. So we shrugged it all off.
One week later, we are at the allergy clinic for a follow-up & nutrition consult and I mentioned it to her (AMAZING) allergist who wanted to run some more in-depth labs. She ran a lymphocyte subset test, pneumococcal IGG test, Tetanus IGG test, CBC, and all the IGG, IGA, IGM, IGE tests. Lo and behold, she had very low pneumococcal titers, low IGG, and low Natural Killer Cells.
Step 1: get the pneumococcal vaccine booster
Step 2: allergy is consulting with the immunology clinic to see if they want to see her or if they're okay with redoing the labs in a few weeks and seeing where we're at then.
Time will tell what our next plan is, but HOPEFULLY the pneumococcal booster will fix some of our issues!
Well we had the allergy appointment for my 6 year old on Wednesday. She has been off of Dairy and gluten/wheat for two years now, but hasn't really gotten all that much better. The middle of the night vomiting is controlled, but she still needs to use Zofran once to twice a day, which is insane to me. Allergy agreed. They had a very interesting take on it all and I 100% agree! Their plan is below.
Allergy has noticed that they've had a few FPIES kiddos who were taken off of wheat/gluten and got a little better but not hugely better. Gluten and wheat free foods are typically made of oats, rice, corn, and soy. Those COULD be what is triggering the kiddos issues. So here we go their plan is to take her off of the top 4 FPIES foods. Dairy, Soy, Rice, and Oats. AHHHHH
In the past few days I've been trying to figure out how to successfully take those four out of my 6 year old's diet. It is proving to be a challenge! So to help me track this a little easier, I'm making a page in the products section that is Top 4 FPIES free foods!
Hi there! You may wonder who I am, the person on the other side of the screen. Well my name is Caitlyn. I'm mom to three & step-mom to one. The kiddos are 8,6,4 &1. Our 6&1 year olds were the two blessed with FPIES. My 6 year old is only (now) Acute to dairy and wheat. The youngest is a hot mess with 9 safes, and a million fails plus a few IGE's to top it all off.
We are very blessed though! Yes, we may have some medical challenges, but overall, we live an amazing life and I am excited to share it with you all!
Hi there! I'm Caitlyn. I'm mom to three kiddos ages 7,5 & 2. My 7& 2 year olds were the two blessed with FPIES. My 7 year old is only (now) Acute to dairy, wheat, soy, and rice. The youngest is a hot mess with 12 safes, and a million fails plus a few IGE's to top it all off.
We appreciate your support!
© www.FPIESKitchen.com, 2018. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to www.FPIESKitchen.com with appropriate and specific direction to the original content.
2.1 Our website contains general medical information.
2.2 The medical information is not advice and should not be treated as such.
3. No warranties
3.1 The medical information on our website is provided without any representations or warranties, express or implied.
3.2 Without limiting the scope of Section 3.1, we do not warrant or represent that the medical information on this website:
(a) will be constantly available, or available at all; or
(b) is true, accurate, complete, current or non-misleading.
4. Medical assistance
4.1 You must not rely on the information on our website as an alternative to medical advice from your doctor or other professional healthcare provider.
4.2 If you have any specific questions about any medical matter, you should consult your doctor or other professional healthcare provider.
4.3 If you think you may be suffering from any medical condition, you should seek immediate medical attention.
4.4 You should never delay seeking medical advice, disregard medical advice or discontinue medical treatment because of information on our website.
5. Interactive features
5.1 Our website includes interactive features that allow users to communicate with us.
5.2 You acknowledge that, because of the limited nature of communication through our website's interactive features, any assistance you may receive using any such features is likely to be incomplete and may even be misleading.
5.3 Any assistance you may receive using any our website's interactive features does not constitute specific advice and accordingly should not be relied upon without further independent confirmation.
6. Limits upon exclusions of liability
6.1 Nothing in this disclaimer will:
(a) limit or exclude any liability for death or personal injury resulting from negligence;
(b) limit or exclude any liability for fraud or fraudulent misrepresentation;
(c) limit any liabilities in any way that is not permitted under applicable law; or
(d) exclude any liabilities that may not be excluded under applicable law.