I Don’t Know What To Do

It was another long night with Zac.

At the end of yesterdays post I wrote about Zac’s sudden weird eye swelling late Sunday night/early Monday morning.

So yesterday I spent a TON of hours on the phone with pharmacists and doctors.

Both boys are now scheduled to see the allergist in a couple weeks for retesting.

The compounding pharmacist says he can make more dipenhydramine for the boys, since we only had one dose left and it was dosed for lighter weights than the boys are now.

I also learned that the compounding pharmacist can use quinoa flour as a filler in the boys pills, which means they can use the machine to make the pills instead of hand crafting each one, which means the cost per pill will go WAY down!

Zac’s eyes were still a little red and puffy yesterday morning, but he had no eye discharge and was otherwise ABSOLUTELY PERFECT.

No, seriously.

For the first time in over a week, he had NO runny nose. It was as if one dose of benadryl was enough to fix his cold. So weird!

He was full of energy and playful all day long and didn’t rub his nose or eyes once.

But he had two poops that I think were mild reaction diapers. They were mushy and stank of that nasty, sour, “buttery popcorn” smell his early FPIES diapers had.

As soon as we got in to bed last night, he started rubbing his nose vigorously. It looked just like how he’d rubbed his nose and eyes the night before.

He struggled to go to sleep but finally went down.

Twenty minutes later he woke up crying.

I nursed him, and he went to sleep again.

Less than an hour later, he was up again. This time, screaming.

He screamed. For two hours straight. 

He didn’t want to be held. He didn’t want to be put down. He didn’t want a bath. He didn’t want to nurse. He didn’t want to eat.

He was rubbing his nose a LOT.

So we gave him another dose of dipenhydramine, hoping it would help him pass out.

It didn’t.

He kept screaming.

No matter what we did, he kept screaming.

If I carried him, he screamed.

If I walked with him, he screamed.

If I stood with him, he screamed.

If I sat with him, he screamed.

You know you’re losing it when you beg your two year old to “Please, baby, please tell me anything to make it better! Just answer yes or no! I’m begging you, baby!”

He also didn’t want to bend at his waist. Whether sitting or standing, he refused to sit or do anything other than plank and kick.

This is where Darrel and I have divergent opinions. Darrel thinks it was a temper tantrum.

I think it was pain.

I’m willing to concede that it turned IN to a temper tantrum after about the first hour, but in the beginning, I believe it was straight up pain.

But from what, I don’t know.

We finally got him to sleep again at nearly 1:00 a.m.

Fifteen minutes later he woke up again.

I passed out while nursing him that time, but based on how I feel this morning, I think it’s safe to assume he woke me frequently throughout the night.

And this morning, my throat feels like it’s on fire. Total strep or tonsillitis feeling in my throat.

Just. Freaking. Great.

Because I’m supposed to leave for work tomorrow and haven’t called out sick ENOUGH from work lately, right?

I don’t know what to do.

I don’t know what’s going on with Zac.

If I can manage to get my throat under control enough to go to work, I have to go. We’re broke. We have to have the money.

And it will be one of the hardest things I ever do. Leaving Zac when he’s obviously not doing well will absolutely kill me.

I’m just at a total loss about what is wrong with him.

Is this a normal kid thing? An FPIES thing? A seasonal allergy thing? A temper tantrum thing? Is he reacting to dipenhydramine? Is he reacting to one of the 5 foods he’s still eating? Is it a histamine thing?

This is the first time in his life where I not only have no idea what is wrong, but I have no idea what to DO to try and figure it out.

When he went into shock at 7 weeks old, I didn’t know what was wrong, but I knew we needed the hospital.

When he’s had FPIES reactions before, I knew what he was reacting to and that avoiding the food and giving him some time would fix it.

This is a total and complete mystery and I hate it.

And 5 days of highly interrupted sleep with a screaming baby giving me terrors of IgE reactions has turned my brain into mush and pushed my body to its limits.

Other than stripping his bed and washing all the linens, I really just don’t know what to do.

Anyone have any brilliant ideas? Please?

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21 Responses to I Don’t Know What To Do

  1. dkaj says:

    Boy Carrie, that sounds just like what we went through with my dd for years before figuring some of her stuff out. She would itch her nose and say it burned. Well, she had reflux going up into her sinuses and would end up having fevers and getting sinus infections. Sometimes she would throw up mucus. It was horrible. This was so hard to sort out because she does have some environmental allergies also. I am glad you are going in to see the allergist also. One thing I’ve noticed on alot of these boards is that many people with GI issues also have environmental allergies too. My dd’s allergist told me once that we really needed to stay on top of allergy meds during high pollen season because this is when reflux would get worse. He said they didn’t know why, but they see this pattern. I swear the pollen circulating in the air makes everything worse. My dd suffers from reflux also. We did some reflux meds for a short time, but we got her off those and haven’t gone back. We have figured out that her worst triggers for reflux, but we are heading back to allergy doc also because I want to do some more skin prick tests on her for cocoa, shellfish, and corn. I suspect my dd has what is called histaminos. If you ask me, I think there is connections between all of this GI and environmental allergy issues. Check out The Low Histamine Chef blog. This is not FPIES related, but you might be able to pick up on some good tips. Best wishes and hang in there.

    • Carrie says:

      Thanks, Deborah. Someone else mentioned the Low Histamine Chef to me today, too; guess I need to go check it out. I know Zac has histamine intolerance, at least on some level. I’ve just never seen anything like the last few days before!

  2. Oh Carrie! I read your last two posts and totally feel for you. Will be praying for your little family.
    I do have a few thoughts though. Kyle (my former FPIES kid with classic rice/oats) has EXTREMELY sensitive eyes/nose issues. The light bothers him, but when he gets a cold, it’s full on chaos. He is screaming because his eyes are watering, and sometimes they get so red and puffy that he is just downright miserable. I think seasonal allergies are to blame too. When it’s a cold, he gets what my husband calls a histamine type reaction. So, it almost looks like crazy hay fever/allergy issues and sometimes we DO give him benadryl even though we know it’s just a cold. And, it HELPS. I’m puzzled by it a lot too. Sometimes, I will swear he is getting a cold, and after three days of runny nose, and watery eyes, it’s over without another single symptom. Weird.
    I know my seasonal allergies are CRAZY right now. I’m taking a nasal spray and a claritin daily, and still have headaches, scratchy throat, etc. It could be that he just has some seriously bad hay fever going on? At least I hope that’s what it is. I also wonder if he was having some sort of hay fever issues and then just continued to get more and more agitated the longer he was awake because he was overly exhausted. How quickly do you go to him when he wakes up? I know how hard it is to stop doing that when you are constantly worried about vomiting, or heaven forbid and IgE reaction!
    We’re taking Chandler, our youngest to the allergist again next week because he has had two swollen face/eye reactions in the past 2 months. Not sure what’s causing it. I THINK it’s animals, but one time it happened while at the shoe store…Allergies suck!
    Also, send me a message on FB if you’re interested in a work from home job. I might be able to hook you up with a blogger that needs help and is willing to pay someone.

    • Carrie says:

      Thanks, Meredith. 🙂

      We’re pretty quick on our “Zac alert” time. LOL He very rarely cries for long before we get him. And when his eyes swelled shut, I was laying RIGHT next to him.

      I’ve never seen any signs of environmental allergies in either of my kiddos before, though I have been surprised at that. Everyone else in my family is crazy sensitive to season changes! So I guess it’s to be expected. Just…so sudden and so severe and out of the blue is kind of scary!

      I’ll send you a message! Thank you!

  3. dkaj says:

    Here’s a link to another FPIES site and mast cell issues and histamino’s and histamine intolerance. http://onefpiesday.blogspot.com/2014/04/mast-cell-activation.html

    • Carrie says:

      I’ve heard about MCAD often on the random boards I’m on, but never suspected MCAD for Zac. The symptoms people described didn’t really fit him. MTHFR, however, fit a little more. So I haven’t looked into MCAD very much. I guess I’d better start looking, just in case, huh?

  4. dkaj says:

    Carrie, so to keep posting, but come over to the FM site you are also a member of. There is some new info and mast cell issues that I think all of us as parents need to be aware of for protecting our kids.

  5. I’m sorry that I don’t have any suggestions I just wanted to let you know that I’m thinking of you and hope this passes soon. It does sound kind like awful seasonal allergies to me, but I’m no allergist. I will also warn you that some kids have a paradoxical reaction to benadryl, meaning that it does the opposite of what you would expect. It turns my little guy into an absolute monster. So that might help to explain the continued screaming and possible temper tantrum after the benadryl. That’s all I’ve got – I’m sorry. That helpless feeling is so horrible!

    • Carrie says:

      Thanks for the reminder, Cathy! Benadryl used to turn me into the Tasmanian Devil when I was a kid. (Now that I’m an adult, it knocks me right out, but…no fun for my mom!)

      Jed always goes lights out on benadryl, but this is the first time we’ve given it to Zac. The first night he went to sleep. The second night he screamed for hours. So I don’t know what to think. But thanks for the reminder; Zac might be more like his mom than I’d like on this one!

  6. RPCVmama27 says:

    This may sound stupid, but the casing the pills are in, are usually some sort of vegan type of material… do you know what they make the casing out of? He might be reacting to the actual capsules the medicine is packed into?

  7. Caroline Wrightson says:

    Hi. I am so sorry. I know what you are going through. My son is one and has FPIES. I’ve been following your blog and you have helped me a ton. Have you looked into homeopathic remedies? Is that something that would be safe? My son seems to tolerate them. I have arnica for pain (you could use it too for your elbow) arsinicum for FPIES reactions, but nux vomica could be another. My son has seasonal allergies although the allergist says he doesn’t. I give him a strong infusion of nettle tea and that helps. It’s also loaded with vitamins and minerals so good if it could be a safe. Also, I can’t remember if you are doing or tried the GAPS diet. That’s what I’m working on now…it’s hard and I feel lost. FPIES is so tough. My son has been doing the screaming in pain just as you described…I’ve noticed it related to intro of new food and you won’t belive this, but the moon.

    • Carrie says:

      Hi Caroline! I’m so sorry you’re dealing with FPIES, too. It’s rotten. But I’m so glad I’ve been able to help in some way!

      I love the idea of homeopathic remedies. One thing I’ve learned the last two years, though, is that food is powerful medicine. My personal ignorance of different remedies has kept me away from a lot of homeopathic stuff. For instance, I’ve always messed with making my own hand scrubs and lotions, and always added mint EO’s because I like the smell of mint. I recently learned, though, that mint is suggested for women trying to DRY UP the breastmilk supply! Ack! That’s the LAST thing I want to do! So until I know more, I’ve decided it’s safer for me to stay away for fear of making another potentially dangerous mistake.

      I do want to know more, though, so thanks for those suggestions. I’ll look into them to decide if I think they’re safe enough to trial. 🙂

      Wow – a friend of mine uses stinging nettle ALL THE TIME and can’t recommend it enough! With two of you suggesting it, I think it’s now been officially added to the list of foods we must trial on Zac!

      GAPS is tricky. We wanted to do GAPS on Zac, but at first he had no safe foods. We started lamb broth, but eventually he reacted. We don’t know for certain whether it was the lamb or something else, but that derailed our GAPS plans at the time. Now that we know of Zac’s histamine intolerance, that makes GAPS even more tricky. To really get the most out of the broths, they need to simmer for a long time. But that releases more histamine, which means it would be bad for Zac’s HIT issues. I could make the broths for less time, but then they wouldn’t be as healing. See? Tricky.

      It’s so funny – when I read your comment I asked another friend (who has been dealing with FPIES for longer than me) whether she’d noticed the moon correlation and she said “Yes, but it sounds crazy when you say it.” LOL I’m not surprised; though there’s little hard proof that the moon messes with things, there’s a ton of anecdotal evidence. And we did just have that Blood Moon this week, so…yeah. Interesting. I haven’t noticed it myself, but I haven’t been tracking the moon cycles with his food trials, either. Good catch!

      I’m sorry your son is screaming in pain, too. I’ll pray he feels better soon. Thanks, Caroline! I appreciate your comment!

      • dkaj says:

        Having worked for some years in a mental health hospital, I can tell you our admission rates always went up with the full moons. They also say that the maternity wards fill up when it’s a full moon- but not sure on that one. There’s also supposed to be some correlations with the tides of the ocean. some day I would love to read into all of this further. I would have to assume maybe the Farmer’s almanac has some thoughts on all of this or other cultures.

        • Carrie says:

          As a Flight Attendant, I can attest to the fact that when things are especially crazy at work (cancellations, delays, odd mechanical problems, bizarre passenger situation, etc.), someone will ALWAYS say “Is the moon full?” And 9 times out of 10, when we check, it is. Plus I’ve heard similar stories from police officers and nurses for years. So I wouldn’t be surprised in the slightest. I’m with you; one day I’d like to study more about it. 🙂

  8. Tina sun says:

    Hugs hugs hugs!!

    I’ve noticed my Dax is rubbing his nose raw lately too. I couldn’t figure it out but the comments here gave me something to think about.

    I hope the boys feel better soon and the work shift flows by smoothly.

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