My daughter has FPIES. And for the last few months we have gone symptom free, for the most part. We avoided trigger foods and opened up to new recipes and were able to introduce home made and store bought paleo pizza, muffins, and crackers (all wheat, oat and rice free), to Lillian.
Today I sit here in my living room with a head ache. I feel like a failure, but I know we will find the answer soon.
Last month, my daughter started to have horrible diarrhea. It would come and go, I would go back to only feeding her eggs and toddler milk and it would clear up, and then we would feed her again and it would come back. We have a trigger food that we are having a horrible time identifying. It could be anything…
It’s been a month and her stools have still been off. She started to get blisters with her diaper rash. I tried a few different brands of butt paste and they just didn’t work. So we finally took her in to her doctor for an RX. We have a butt paste that is compounded now, and we are hoping to see improvement with it. (Insurance did not cover this, but we thankfully can afford the $65 price tag).
I feel overwhelmed…and I will tell you why.
The doctor and I had a talk about my daughter’s FPIES…and that we usually get vomiting with a reaction…not just diarrhea…
She was tested for it last year, but soon after, I found out from a friend that since we are on a gluten free diet anyways, the tests would be invalid.
This was brought up again yesterday at the doctor’s visit… retesting is not an option right now. My daughter is FPIES to Oats, Wheat, Rice, Pineapple and Broccoli. That means, if we wanted to test for Celiac we would have to introduce her to a gluten product, most likely wheat, which makes her vomit profusely and causes her to go limp.
I won’t put her through that.
Now kids CAN out grow FPIES, and her last reaction to wheat was January 2019. It was a reaction to licking a spoon, that was used to put DRY cream of wheat in a bowl. It had the DUST from the cream of wheat… not even a tsp. And she threw up for hours….
We are not scheduled for a food trial until January 2021. Her doctors felt that she was severe enough to wait until she was at least 3 years old.
So no test – no wheat – no testing for Celiac right now either. BUT….
Why do we think it might be celiac?
So lately I have been getting bold… instead of getting items that say “gluten free” I have been relying on the ingredients list. I thought, well… many people say they can have this item and they are FPIES to the same stuff we are ….
It has been since I introduced these items that we have started having issues…. the ingredients don’t say wheat but they could have contamination…
FPIES is vomiting – or bloody stools… usually. Not just Diarrhea…
Celiac includes the diarrhea and various other things as well – BUT both the GI and PCP said it was a possibility since we are very careful about exposure, that if these items had enough gluten to make her sick enough to just bother her tummy a bit – we may get this reaction.
The goal is – to only eat ‘certified gluten free’ foods.
Which is hard. For us.
My daughter has a rice allergy…. please look in your local gluten free section and tell me what percentage of foods my daughter can eat….
So I have to go Gluten free – but ….with a Paleo twist…
It’s possible…we just have to be VERY picky.
My head hurts today.
I feel like everything I do doesn’t make a difference. I feel alone. And I feel like my family thinks I am the crazy mom.
I have good friends – and family but they don’t live this (with the exception of my friend Kerri, who also has a multitude of food allergies, I am thankful to have her to complain to). *Waves to Kerri*
I am looking for Paleo recipes that I can fit into my schedule – that I can make certified gluten free – so we can see if we can get rid of these tummy issues with my daughter. We are currently trying to rule out any other possible issues until we can get her tested for Celiac… but until then we have to live the life. As if she has Celiac.
To all the moms out there – or if you have celiac or other food allergies – let me know your struggles – let me know where you shop. What do you do?
I am also on another journey with my other child, Calvin. For personal health reasons we are trying to cut milk and soy out of his diet… and milk is not too hard to cut out but soy…. god help me SOY is in everything….
Living soy free – is nearly impossible. Unless you make everything yourself.
But here I am a home schooling mother of 1, toddler mom of 1 other, and I do still work from home PRN as a medical coder online. I am expected to keep the house neat, teach my children, take care of our pets, and be a loving wife. I suffer from migraines, severe depression, social anxiety and today I feel sad… I feel self pity. I just want to cry.
I know what we are going through is small compared to what others go through – but it’s my struggle. As a mother – it’s hard to see your child suffer while you try to figure out what is going on inside of them.
I have an amazing MIL and FIL who have been supportive of me – and I think them for that. They remind me that I am a good mom.
We still haven’t gotten an apology from my BIL/SIL for the horrible thing they said about my son (when they kicked him out of a group get together, see my older posts for that information). So their support is non existent right now. My own mother is very supportive. I wish more of my family lived closer.
Update on homeschooling: We found a program over a month ago that is working for US. It’s called Acellus Power House, Home school. It’s online. I also just bought my son a subscription to curiosity stream and he is loving it.
Sorry for the rant – I just feel overwhelmed today.
Last week, my husband bought me the new Canon 90D DSLR. I am very excited to try this camera out – but I also ran into some difficulties involving the RAW format CR3 files.
First of all – the CR3 files can no longer be “previewed” in my Windows 10 file browser, and my Photoshop Elements 10, cannot open my RAW format files. I am trying to work around it and update the raw files to 11.4, like most of the internet has suggested, but I may just need to upgrade my Photoshop account completely it seems.
So, I have not fully been able to play with photos YET in Photoshop. I am hesitant on buying a new version of Photoshop because I am stuck in my old cheap ways….
“But Donna, you have a brand new fancy expensive camera, why not just spend the money?”
Well my dear readers, I work PRN — that means as needed. So my paycheck is rather small. And since the camera was a gift from my husband to me, for our 3 year wedding anniversary, I didn’t really go out ready to spend a lot of money on camera stuff.
I am also trying to prepare for Christmas and Thanksgiving coming up here in the states. *SIGH*
I mean I probably will buckle down and buy Photoshop CC with Lightroom (or what ever the cool kids are using now a days).
Crappy RAW file issues aside – I did get to play with some JPEGs and I was playing with all the fun “in camera” tools that are provided… and I must say this camera is very nice. I still have a Canon 30D and a Canon Rebel 3Ti as well, which I may look into selling so I can get a new lens. So keep an eye out for those to be on ebay eventually. I tend to keep all my cameras and then they don’t get used and I want SOMEONE to use them, SOMEONE to love them.
I sold my Canon 10D a few years ago and I hope the person who bought that one is enjoying it still, it was in great condition.
I am going to plan a trip to some places with more colors (New Mexican ones, such as old town, and other holiday functions coming up will allow me to practice more with this camera!)
Since I drive past old town Albuquerque twice a week, I think I should be able to stop by and take some test shots soon. I love when the stores put up luminaria in the winter (wait and see).
So far, I have noticed this new camera is amazing at pulling in light where its needed. I have had issues in the past with older cameras not picking up light, there is NO issue with this currently.
I wish I had this camera for my most recent vacation to Yellowstone, but my husband did not know about my “wish” for a new camera, until mid trip. He and I were talking about it – and I sort of got the hint that my anniversary gift would be something camera related after that.
Are you looking to get a new camera? The Canon 90D (BODY ONLY) this is NOT INCLUDING the lenses, is about $1,200
You can check out this camera on Amazon :
https://amzn.to/32cobQ0 <– click the link to check it out
I personally bought mine at Best Buy because I had some issues getting the correct camera from other websites for some reason – but I know most people prefer Amazon.
Tell me what kind of Camera you currently use. Are you Nikon or Canon? I started off with Canon so…I just never switched. Now all my lenses are Canon so I find it hard to switch. *Shrug*
*Includes Affiliate links*
It’s not as hard as I thought it would be. But it’s also not easy. It’s like having an extra child…. Who pees outside.
Ranger is a good dog. That I am 100% sure of. Why his owner had to get rid of 3 dogs…. I don’t know. But I’m glad we found Ranger. He is older than the shelter said he was… They said the owner said he was 6. The vet said he’s closer to 8. That’s fine with us.
Gwendolyn, our first dog, is getting used to sharing. Sharing love, sharing toys, but right now she really cares about food. We are showing and training the a dogs that we have enough food for both of them… Gwen gets a bit touchy when she thinks Ranger will let a treat before her. So we are working on that.
The dogs are both very good with my kids so far. Gwen was always good but I didn’t know how she would be with Ranger around the kids. Shes fine.
Ranger will not go potty outside with out Gwen. I’m not so sure why he won’t… But so far he will only go outside in the back yard with her. If in put him out side alone he will just sit by the door until I bring him in.
We need to schedule his teeth cleaning for next month. I told my husband, no matter what, Ranger is getting his teeth cleaned because they are not looking nice. And they smell.
Ranger has lenticular sclerosis, in both eyes, because he’s old. And that’s fine, it doesn’t seem to bother him yet. But at least we know.
Learning to care for an older dog is new for me, but we are up for the challenge. We wanted him and we will care for him. He’s doing great in the crate, on day 3 he will go in with out much of an issue.
He’s house trained. He’s not really leash trained, he gets startled walking down the street when people are coming by and he tugs backwards. I’m getting him a gentle leader like what Gwen has. Actually both are getting new leaders. I’m used to Gwen pulling… Not the other way around. But I do take them on two walks a day. It works and their energy level is more manageable.
Gwen has calmed down a little. I think having Ranger distract her is a good thing. She was a bit much. She still is.. But she’s behaving better now.
Being a 2 dog house, with 2 kids, and a cat… Is fun. It keeps me busy. But I’m happy. The kids are happy. My toddler is in love with both dogs and cries for them at night. Ranger is bonding with my son… It’s really nice.
I don’t think we will ever be a 3 dog house. But I think 2 is a good number.
My twitter followers and facebook friends should already know this but I finally have time to make a small post about our new family member, Ranger – the Irish Terrier!
Yes, you read that right… we now own TWO Irish Terriers! Gwendolyn and Ranger get along great. Most of you know Gwen by now, she’s 2 1/2 and is a pure bred Irish Terrier, she’s been an only dog since we got her, until now.
I heard of Ranger via facebook, the Irish Terrier Rescue Network was trying to find someone to foster him, while he was still at my local shelter. I decided that I wanted to see him for myself. I really don’t want to foster…I would prefer to own. So I met him, and saw potential. He was shy, shaking scared, but he was not aggressive. He tolerated me touching him, and I decided to see how a meet up with Gwen would go.
I brought Gwendolyn with me to the shelter that same day and he came out wagging his tail when he saw me and Gwen. That was it… He started opening up from then on with me.
Background: Ranger was dropped off with 2 other dogs, so they knew he was good with other dogs. They think hes 6 years old but we just confirmed at my vet that he’s AT LEAST 7. (We don’t care about his age, we just want to help him live a healthy happy life.)
So do you want to see Ranger?
I want to also share this…..
This was his before… when I FIRST met him…
So you can see the changes… I am so happy I found him. We have only had him 2 days but Gwendolyn is getting along well with him. My kids love him. And we are working on getting to know him better. He is a bit shy and jumpy but is not aggressive at all. He has let me shower him, and check his teeth out. We already had a vet appointment and established that he has slight Lenticular Sclerosis in his eyes, which is normal for his age, and they said it’s nothing to worry about right now since it’s not bad with him.
He also desperately needs his teeth cleaned, so in about a month or less… I will pay for that to be done. His breath could kill a bull. Freaking – omg. But we will work on that. I got him a tooth brush as well – which I will introduce soon.
Above is a photo of Gwen (in the front) and Ranger (in the back) on their morning walk. I bought him his own harness, as I didn’t get one yesterday for him. Today he has a fancy new grey one.
So far our only problem is getting him to pee…. I got him to eat finally and drink water. And he doesn’t LOVE his crate yet – BUT he won’t cry in it. So at night time, getting him inside the crate is a bit rough but he doesn’t complain once he is in. We have been trying to show him that Gwen goes in on command and we praise her – and I praise him every time he goes in his. I finally got him to take treats from me – so I think that will help improve this process!
The kids have been slowly been introducing themselves to him – he doesn’t seem to mind them now. They made him nervous the first day but I think everything did. I am just thankful we found him.
Tell me about your adoption story! Gwen was raised as a puppy by us, so adopting an older dog is very different but I am so happy to have another dog to join our family. That and the fact that Gwen is over the moon once she saw I brought him home, makes me really happy.
I got all my photos loaded to flickr from my phone and my camera! And they are here to share! You can either hoover your mouse over the photos and it should let you click back and fourth through all the photos OR you can click on the photo and enter the album on flickr. Which ever your browser will let you do 🙂
So enjoy those photos if you have never been or if you are looking to visit!