Weaning, Post-TED Food Trials & MCAD

Weaning, Post-TED Food Trials & MCAD CradleRockingMama.com

It’s been a rough few weeks. In fact, there’s been so much happening that I can’t fit it all in one post, so this will be a nifty “ongoing storyline”.

To begin, we do have some exciting news! October 30th, I arrived home from work in the early afternoon. As soon as I got home, Zac asked to nurse and I complied.

Little did I know that would be the last time I ever nursed my second son. 

That night, Darrel pointed out that we had agreed Zac needed to wean almost two months before, but here he was, still nursing. Darrel was frustrated.

He’s been worried about my health on such a restricted diet, and since Zac doesn’t seem to need the breastmilk any longer, he’s been growing convinced that the continued nursing is now holding Zac back in terms of emotional development.

I wasn’t so concerned with Zac’s emotional development, but if he really wasn’t getting any breastmilk, then I really  needed to start eating more foods.

Since Zac had stopped having any active “sick” symptoms from our myriad illnesses the last two months, I told Darrel I’d go ahead and tell Zac we were done nursing.

That night, as we got the kids into bed, Zac asked to nurse. I asked him “Zac, baby, do you get any milk when you nurse now?”

He said “No.”

“Sweetie, if you aren’t getting any milk you don’t need to nurse any more. Nursing is so babies can get milk. We aren’t going to nurse any more.”

He looked sad, but just snuggled in and accepted it. He went to sleep with no problems – and no boobie.

The next day he asked to nurse, and I reminded him that we aren’t going to nurse any more. He started to cry, so I asked him, “Baby, do you just miss spending time snuggling with me?”

He nodded yes, so I told him that I love snuggling with him, too, and that any time he wants to snuggle, all he has to do is tell me he wants to snuggle and I will drop what I’m doing to go snuggle on the couch with him. I told him we don’t need boobie to snuggle.

He smiled and ran to the couch, and we snuggled for about ten minutes.

Over the next couple of days he snuggled with me frequently, but never again asked for boobie.

I went to work a few days later, and when I returned home three Saturday’s ago the first thing he asked was for boobie. I reminded him that we don’t nurse any more, and he immediately said “I want to snuggle, Mommy”.

So we snuggled, and that is that.

Zac has weaned. 

1,228 days of nursing. 

1,166 days of nursing on a Total Elimination Diet. 

I thought I would feel sad, and I think if I had done it any earlier I would  have been sad. Instead, I was relieved. As much as I loved loved LOVED nursing my boys, the truth is, I had finally reached the point where I’d had enough.

Weaning made me feel like a weight had been lifted from my shoulders! 

That’s why the very next day, three Sunday’s ago, I excitedly insisted we make a run to our health food co-op so I could pick up the first food I would trial off  my FPIES TED: spinach.

Darrel suggested it because he knows I always loved spinach and I have no leafy greens in my diet.

Even though I already knew spinach is high in histamine and salicylates, I thought trialing spinach sounded good. After all, I’m all grown up. Surely that means I can tolerate a pretty good amount of any triggers, right? Besides, I never used to have any kind of acute reaction symptoms from my food before. Only chronic. I figured it was worth it because spinach is so nutritious.

We came home with the spinach and I quickly made dinner for the family: hamburgers and sweet potato fries for the boys, and salads for me and Darrel.

It was a simple salad, just iceberg lettuce (which I haven’t trialed, but which has none of the things that are potential problems for me so I considered it safe without trialing), spinach leaves, cucumber, hard boiled egg, olive oil, sea salt and pepper.

Delicious Poison CradleRockingMama.com

It. Was. Delicious!!!

I’d forgotten how good salads taste!

We ate dinner at 6:00 p.m.

By 6:30 p.m. I started having a headache.

By 8:00 p.m. I wanted to get unconscious as fast as possible because of the discomfort I felt all over my body, but especially my head.

At 9:00 p.m., laying in bed, I spent 20 minutes crying and whimpering in pain.

Oh, dear God, the pain!

I’m not exaggerating when I say it was almost on par with the pain of childbirth. Not exactly, but dang close.

I could not think.

The overwhelming pain became my entire world.

Eventually the thought oozed through the abyss of yawing pain in my head that hydrotherapy is effective; I should take a bath.

I laid in a warm bath with magnesium chloride for about 20 minutes, which was long enough for the pain to ease back enough that I could think a little.

I hurt everywhere, but the biggest source of pain was my head, so I searched online for natural headache remedies.

If I could just make the headache better, I hoped I could tolerate the rest of the pain

Eventually I got out of the bath and oozed to the kitchen where I made some lavender and peppermint essential oil blend in tallow to rub on my temples.

Then I got an ice bag put together. (And yes, I whimpered like a wounded animal through all of these lovely activites.)

I smeared the EO blend on my temples and sat with the ice bag on my head. That offered some relief from the pain, but only if I sat perfectly still. Even a slight movement made the pain come roaring through like a freight train.

I took the opportunity of perfect stillness to text a “food trial update” to my friend (a fellow FPIES mom).

Immediately after commiserating, she asked “do you have any Benadryl?”

I said I did, and she told me to take one. “If you have MCAD (Mast Cell Activation Disorder) it will help.”

A quick look through my kitchen proved I could not find the bottle of compounded dipenhydramine I got for myself the last time we had the boys bottle refilled. Moving=pain, so I decided to take 4 of the boys dipenhydramine, since 4 of theirs equals 1 dose for adults. (Remember, each compounded pill costs 50 cents!).

I asked my friend how long it would take to make a difference, and she said as fast as a food reaction is. Since my food reaction took about half an hour to kick in, I noted the time on the clock and sat perfectly still with an ice bag on my head and waited for 30 minutes to pass.

I didn’t have to wait that long.

Within 10 minutes, I felt 80% better. 

By 15 minutes, I was 90% better. 

That was as good as it got; apparently, the indescribable physical pain has a “hangover effect”. Though my pain was 100% gone, I spent the next 3 days feeling as sore and achy as if I had worked out far too hard or survived a car accident (both of which I have done and can say the soreness was comparable to).

I have NEVER felt anything like that reaction in my life. It was absolute agony. I’ve had surgeries  that didn’t make me feel as awful as that.

I’m not joking when I say the only time in my life that I felt more physical pain than that Sunday night was during childbirth.

Consequently, Monday morning found me calling to make an appointment with a MCAD specialist for myself and the boys.

It’s quite clear I have MCAD, now. No more pretending I don’t or hoping it isn’t severe. I have it, and it’s not good. I need help. 

And MCAD would explain a lot of what goes on with the boys, too. They need help, too.

Unfortunately, the pediatric MCAD specialist is no longer taking new patients, so I was unsuccessful in getting an appointment for the boys. I’ll keep searching for someone to help them.

Oh, and my appointment? Not until September of 2016.

Thank God I have my friend (fellow FPIES mom who also deals with MCAD) to help guide me through food trials this year!

That’s more than enough for today. I’ll finish the rest tomorrow. 

So what’s new with you? Have you ever had a food reaction like this? How did you deal? Did it make you scared to try new foods, too?

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7 Responses to Weaning, Post-TED Food Trials & MCAD

  1. dkaj says:

    Carrie, can I ask how you sourced a MCAD expert? I take my dd to an allergist/immunologist in my local state and whenever I bring up histamine intolerance, he changes the subject. even asked for testing for sulphite intolernace related to my dd’s reactions, and once again, he acts like it’s very rare. Of course, it’s not IGE per say, but the reactions are from the mast cells. Anyways, what type of specific doctor did you search for. If I remember correctly, you are in Arkansas – is that correct. What specific questions did you have to ask to source the correct doctor? TIA.

    • Carrie says:

      Hi Deborah!

      OK, the short answer is: I didn’t. I totally used a friend who has MCAD’s recommendation and am going with it. I trust her implicitly re: all things medically bizarre, so I’m comfortable with that. I’ll send you an email with specifics. I don’t like to share too many specifics about other people online. 😉

      • dkaj says:

        Thanks Carrie! I too react to spinach. But, my inflamation goes towards my gut and possibly gallbladder, I don’t know. Same thing with green onions, horrible pain, but I can do the green part of them which is advised on the fodmap diet. I have foods I react to on both the histamine and fodmap lists so what others are saying about all of these conditions falling under some mast cell issue makes sense and from what I’ve seen looking at all of these food lists, fodmap, histamine lists, and sulphites – is that I see that they all overlap on some of their foods. Good luck and I’ll look for your email.

  2. Rebecca says:

    Are you going to discuss MCAD more in the next post, I tried to go back and figure out more, but the initials are new to me.

    • Carrie says:

      I think I’m going to have to! LOL It’s new to me, too. For a quick tutorial, MCAD stands for Mast Cell Activation Disorder, and it’s a general term that encompasses the several mast cell issues (mastocytosis, mast cell activation syndrome, etc.) that exist. I don’t know what subset of MCAD I may have, and that’s why I need the specialist.

      This has been on my radar for a LONG time…at least 1.5 years now, if not a little longer. But it’s not something I can self-manage, and I’ve felt like I was barely staying afloat at times the last few years. Adding another complicated medical issue to my plate just made me want to curl up in a ball and cry. I “ostriched” the theory completely, rationalizing that I would handle it if and when it became clear we needed to handle it. That day finally arrived with the spinach reaction.

      Apparently, some MCAD specialists are positing that things like FPIES, Fructose Malabsorption, Salicylate Sensitivity, and Histamine Intolerance (among other things) are not diagnoses by themselves, but actual SYMPTOMS of MCAD. Hence, if I can get the MCAD under control for me and the boys, it *may* improve or even eliminate all these other things we deal with.

      But it requires a knowledgeable specialist to deal with it, a large battery of tests, AND the only way the tests will work is if you are actively reacting when they do them. We needed Zac to get safe foods so desperately, I never wanted to spend any time forcing him to react in order to have these tests run on him. I figured once his diet was broad enough to be limited but sustaining, I’d broach the issue. We’re there now, too.

      So I’ll be heading to the out of state specialist in September and eating cantaloupe and spinach while walking through the perfume section of the nearest Macy’s before racing to the lab before I want to die in order to get my blood drawn. Fun Fun. LOL

      That’s basically all I know about it at this point in time. Once I’ve learned more, I’ll share it in a post. I just didn’t want to leave you hanging until that happens, because, who knows when that will happen! LOL

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