FPIES – Food Protein-Induced Enterocolitis Syndrome

Last night my daughter started acting odd. She is generally a very happy baby girl and the only time she gets fussy is when she needs a nap. So I decided to lay her down to see if maybe she was tired. With in 10 minutes she was screaming in her room, so I went in and picked her up. She had a wet spot on her bed, so I assumed it was from crying, shes big on the tears when she does cry.

So I brought her into the kitchen where my husband was and handed her off to him so I could make her a bottle. I was thinking, “maybe she is thirsty again?” And I turned around an picked up a bottle near the sink, then I heard something. So I turned around and my husband was covered in vomit. It was on his face, his shirt, his pants, the floor… and the baby was screaming. I grabbed her up and tried to think – what could she have eaten to make her throw up?

This is my baby and I laying on the couch. She I have the towel and blanket just incase, and this is after we took the zofran. So she was not actively getting sick. But she still felt bad.

She’s got FPIES – and the only thing I can think of is a few hours earlier she was holding a tablespoon that was used to measure my son’s cream of wheat. It didn’t look like it had much wheat dust on it but she did have it in her mouth. I thought nothing of it because it was such a small amount. She reacts to wheat, oats, rice, broccoli. pineapple and corn with her FPIES. So the only think that this could be is the cream of wheat…the very small amount of dust that was left on the spoon made her vomit.

This food allergy is just so infuriating. Lillian is getting to the age where she will grab things from me, or find things that she couldn’t grab when she was a tiny baby. So now I need to make sure this toddler doesn’t introduce foods we all eat, but that she is allergic to. I wrote about FPIES in an earlier post, we are very careful with her foods, we read EVERY ingredient, we make sure if we introduce a new food to her that we watch for a reaction. Yesterday I just didn’t think that the spoon had anything on it – especially not enough to make her sick but that shows how sensitive this food allergy is.

Thankfully I had some zofran on hand from a previous visit with the doctor, when they prescribed it to her for vomiting for this exact reason. Just to have around just in case she gets food she is allergic to. She threw up again on me a few minutes later, and then I remembered we had the zofran. We gave it to her and she stopped throwing up (these vomiting sessions can last over an hour usually, but this stopped it after 10 minutes). We then spent the evening laying on the couch and she only had pedialyte after that so that she could get some tummy rest.

Her reaction usually goes like this: Vomiting 2 hours after exposure to the allergen. She generally vomits for 1 to 2 hours, emptying her stomach. Later she generally has fever like symptoms, she feels warm and looks ill. Her face usually goes very pale and then she generally gets diarrhea all the next day.

So far we had the two vomiting sessions and she started to feel warm. But the zofran helped us minimize the other symptoms thankfully. FPIES is still considered a rare food allergy but a lot of babies have it. I belong to an online facebook group for support and a lot of times doctors just misdiagnose this food allergy because the babies don’t get hives or have anaphylactic shock. But having a baby vomit for hours and then have diarrhea is not safe either. With some foods her reaction is more severe. We are lucky this was a wheat exposure and not a pineapple one. Pineapple was a horrible reaction, probably our worst.

Visit the FPIES FOUNDATION for more information

If you have a baby with this food allergy, know that you are not alone. There are groups and other families going through the same thing. Yes it is frustrating when your doctors don’t know what FPIES is …but its real.


Bonus post – Baby Dress

A cute white dress I ordered online for my daughter

Pictured above is a photo of my grandmother as a baby in a cute dress. Next to it is a cute dress I had made to closely match the dress (as best as we can based off the photo quality). Now the dress is not an exact replica. The dress was made by a woman on Etsy to closely match the dress my grandma wore.

My aunt recently sent a photo of my grandma to me – and notified me that my baby girl looks similar to her. She was correct. The face shape and nose are identical. While my daughter’s eyes resemble my grandfather’s eyes. So I decided to order a dress for her and try to recreate the photo above. I just received the dress and I ordered a white slip to go under it from another Etsy shop as well that I am waiting on. So with any luck for Valentine’s Day, we will have a cute recreation of the photo above.

Here are the links to the places I bought the dresses from, in case you find yourself interested in Crochet Pinafores or baby sized white dresses.

Link to the exact Crochet Dress I bought :

https://www.etsy.com/listing/661416594/special-order?ref=shop_home

Link to the Shop I bought it from:

https://www.etsy.com/shop/CrochetGoneCrazy?ref=l2-shopheader-name

Link to the white under dress I bought:

https://www.etsy.com/listing/530234154/infant-slip-full-slip-christening-slip?ref=shop_home_active_4&crt=1

Link to the shop I bought it from:

https://www.etsy.com/shop/SweetLittleAngel?ref=l2-shopheader-name

I love hand made items, the meaning they have is greater than some factory created outfit. After Lillian grows out of this dress, which won’t be too long since it was made to fit her now, I plan to save it for her future children. That way they can have some of her past if they would like.

Going to the Orthodontist with my son

Well it finally happened. My son’s pediatric dentist referred us to an orthodontist for a consultation. Today was our initial visit, and honestly I am not that shocked about what the plan is.

This is a pano x-ray of my son’s teeth. He’s 10, so yes he is retaining teeth and he’s also missing teeth, and don’t forget those canines up top that are not supposed to be that high up.

The pediatric dentist made the referral, I suggested my son to see MY orthodontist…You read me right. I had braces up until 2016. So I am very familiar with what goes into having work done on my teeth. I figured that my son would need work done eventually, since his teeth look exactly like mine.

He had a little fun when they had to take photos of his teeth

As you can see, my son, who is 10 years old is retaining teeth. He hasn’t lost many baby teeth, and if you look at the very top of his x-rays he has his canine teeth ALL the way up there. This is sort of what my teeth did. Except… he is missing his top lateral incisors. Yep. So we have some issues already. But with proper orthodontic care he can have a lovely smile when he gets older.

He is pointing at those canines that are way up there in his mouth

Currently, the orthodontist has decided that we will give my son half a year to see if any of his teeth change or fall out. Which is a good idea since he is only 10 years old. But after this summer, if his teeth have not changed, we will decide on pulling teeth or making any other changes.

The only issue I see us having with getting braces or doing any extensive dental work done is the fact that my son has sensory processing issues and ADHD. He had a really hard time sitting still just for this visit – but in all fairness he did run out of his ADHD pills. We might do better next time around in the summer.

It was great to see everyone in the office again – they did remember me. It was great to know that my son will be in good hands when and if he gets braces or has work done. I would like him to get this done while he is young, so he won’t go through the embarrassment I went through as an adult with braces.

The orthodontist looking at my son’s teeth on the screen
Options options options… I had the metal ones when I had braces, they weren’t too bad.

We are scheduled in July to see where we will go with this. I suggested to them that we might just pull those teeth because I didn’t lose my teeth even in my 20s. I had 4 baby teeth pulled and 4 wisdom teeth taken, and one tooth that refused to come down and had to be pulled down, and one baby tooth that has no adult tooth under it…. so my son’s teeth are not really a surprise.

Oh and get this, I found out that my son’s dad is missing 3 of his wisdom teeth too! So go figure, he is missing teeth! Braces do cost a lot but we can do this.

If you have any issues with your teeth, take care of them. Oral health is important.

Medication and Therapy

Photograph property of MyOnlySecret

This week has been frustrating. My 10 year old son has ADHD, a sensory processing disorder, and a moon disorder. He takes 3 different medications that help him with various aspects of his mental differences. We usually go through Walgreens and just pick up his medication but this month we thought we would try Express Scripts, since we have new insurance and we heard things would be easier and that it would cost less. Now I didn’t realize my son’s doctor would take a few days to order his medication, and then Express Scripts would send said medication via their slowest carrier in the world, or else I would have just told his doctor to just fax the RX to Walgreens this month….

We ran out of his ADHD medication….. (Sends S.O.S. signal)

Now I know not everyone “believes” in ADHD. But I would like to challenge you to sit in a room with my son for 1 hour…. with out his medication. Heck, he is hyperactive WITH his medication. This poor kid literally cannot sit still. He is jumping off couches, and having a hard time just “peopling”. It is hard to see him like this because we have been medication since he was a young child. We saw great improvements with medication and therapy. Now my son isn’t the “typical” ADHD that you think of when you hear about ADHD, no…. he’s the kind that literally cannot function.

My son is in special education due to his mental illness. He was a bright young child back before all the symptoms hit. He still is bright but a bit more…. aloof. He is out there with his imagination, and that’s fine. Kids can have an imagination, kids can go run and play. It’s when they can’t sleep due to their racing thoughts, the endless energy, the inability to see past themselves… it’s a lot.

I have had people tell me my son seems pretty normal for a child with ADHD. And then the medication wears off… (no literally, I had a sibling see this happen) at night time his pills wear off a bit and his inability to stay still spikes. People had this realization that I was not the mom who medicated her son for “no reason”. No we have a reason…. the reason is …. my son was not able to get an education with out medication.

This week has been hell . I knew by the time the medication was ‘shipped’ that it would be at least a day or two late – and that we would be out of pills. Now his pills for his mood disorder did come in on time, the essential ones that he takes twice a day…did not. Last night my son got ZERO sleep. He told me he kept waking up and that he is really tired today. I have been trying to make his pills last by cutting the dose in half -so at least he was not going cold turkey. But tonight and tomorrow he has no pills….

It sucks because we know they will be here either tomorrow or Friday – and we do see his doctor sometime soon – and I will be throwing an adult temper tantrum with his doctors office for taking 3 days to order his medication after we called it in THREE times.

I have been told by some friends that he might “mature” once he hits puberty, and that maybe JUST MAYBE, he might be able to stop some of his medication. It would be nice if he didn’t have to rely on medication his whole life. Life is not going to go easy on him.

I don’t fully understand this illness, but I know how it is to have a mental disorder. I have severe depression. I live with it … and that’s that.

Today I went to the doctor’s office for a cough I have had for 5 weeks now. And the nurse asked me if I had any thoughts of Depression. I said yes, but that I was not there at the visit for those concerns today. He told me to keep fighting. I think he understood that this was just something I live with, but I didn’t need medical attention for it today. He did make sure I felt safe, etc. Which I do. I am not suicidal right now. Just Depressed. I did tell him I would be making an appointment soon to get a new RX for my antidepressants though. I think that re-assured him that I was indeed taking my health seriously – I just had bigger fish to fry right now. Like being able to breathe. That seems important right?

They do want me to see a behavioral therapist though. I know I need to see one too but I feel like I only find doctors who stay for a year – and then they jump ship. My last doctor quit when I got pregnant – so … about a year and a half ago…I haven’t been seen in over a year…

Back to my son, his doctor is nice but he’s old school. It took a lot of pushing on my end to get him to not prescribe a controlled substance. We actually put my son on an antidepressant for part of his ADHD and it helped with his mood disorder. We found other drugs that we found work very well together. My son’s therapist quit last year also. Not his prescribing doctor…. his behavioral therapist whom he spoke to weekly. It sucked. We have not found a new one that clicks with us.

The only good thing about our insurance changing this year is the cost of medication. The plan we were on last year was a high deductible plan – I mean this year we are still on a HDHP but the medication is a copay. It’s separate. Which works for us – because every time I would go to the pharmacy last year I would pay $200 – $300 per medication and the pharmacy staff would feel bad for me. I reassured them that we were fine. We can afford it. We just wish we didn’t have to. But this new insurance only charged us 12.50 for 3 months of pills (this is only one rx, not all 3), but still, the cost of THREE months was less than just ONE month of pills. It is nice to have that option.

Oh and my medication? The one I want to go back on…was not covered by my old insurance… but it IS covered by the new insurance…now it’s not fully covered but… we can afford it. I just feel bad for wanting this medication… it will be 185$ for 3 months of pills…but those pills make me a better person…. so ….. yeah its worth it. I am going to get my doctor to write me that new RX soon so I can get back to being happy.

Now this post is a bit long – sorry about that – so I will end it for today – and maybe post on a lighter subject tomorrow.

But do you take pills or go to therapy… how much do you pay for your mental health or others?

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