Life Is Just So Daily

Tuesday, February 18, 2014

Gripey Guts: MSPI Update. {LONG.}

So, I haven't blogged about Eliette's MSPI in a while.

Recap: MSPI stands for Milk Soy Protein Intolerance.

We've had to introduce foods slowly to her... She's done great with:
butternut squash, zucchini squash, sweet potatoes, regular potatoes, broccoli, apples, pears, blueberries, beets, spinach, asparagus, rice cereal, mixed grain cereal, homney, bell pepper, and peaches.

She *may have had a reaction to green beans.
She *may have had a reaction to green peas.

So, she had a GI appt today at 9 months. I previously would have said that she definitely had a reaction to green beans, and had NO reaction to green peas. After talking with Dr. W, that may not be the case... With the green beans, it may have been at a time that she was on antibiotics for the first time, I can't remember. The reaction could have been to an ingredient in the antibiotic, not the green beans. With the green peas, the eczema spots that popped up behind her ear and on her thigh may have coincided with the peas, but I don't know. I didn't mentally put them together, so I just don't know. Ugh!!!!!

BUT, there's so much to blog about in the recent health/healing/illness that's been going on with Eliette. About a week or two ago (don't hold me to that timeline b/c things have been soooo crazy here lately): Eliette came down with a stomach bug. Diarrhea, vomiting, all the good stuff. When she was getting over that, she started acting like she didn't feel good.... she was refusing foods even though they were offered several times a day, and would only nurse for about 3 minutes at a time...then she'd pull off and refuse to eat. So, I took her to the doctor. Dx'd with strep throat. This is the 2nd time in her short little 9 month life that she's had strep throat. {As an aside: I have two streppy kids. One cell of that bacteria can float down the street, and you can be certain that it will land on my doorstep. My kids will get it.} Anyway---she was put on generic Omnicef on Friday. That's when the diarrhea began, and it did not let up. Got to the point of passing stringy, bloody diarrhea. I didn't initially freak out because you know---abx and diarrhea can just go together. Even when it got bloody, I didn't freak, I just was instantly thinking, "We are starting this whoooole process over again. Oh my goodness. There must be dairy in that medicine somewhere." So, I started looking online for the ingredients in the cefdinir suspension. I couldn't find anything... I called the pharmacy. The pharmacist did some research and called the manufacturer: soy. There's some minute amount of soy in the generic suspension of Omnicef and it may have torn up my baby's guts!

Ugh..... all of this was on Monday. What else??? Oh, so she had a total of 7 diarrhea diapers that day, and I swear it seemed like 5 of them were before noon! I think that we were actually at 5 total around 3 in the afternoon, but to say it was a rough morning is such an understatement.

The other kicker: she was supposed to have her 9 month check up on Monday morning & get shot #2 on her flu shot series (at this age they have to get 2 injections; she's already had the first one). Well, bright and early Monday morning, I go ahead and cancel the appointment because she hadn't been fever-free for 24 hours, as required for the flu shot. So, I rescheduled the appointment for Friday. It was probably 5 minutes after our previously scheduled appointment time when the bloody diarrhea started. Yes, I can totally admit that I had one of those: ARE YOU FUCKING KIDDING ME moments. Sadly, it would be the first of a few of those moments over the past 48 hours....

I can happily report that my husband came home to help me. School was out for President's Day. I had two kiddos at home. One was feverish and streppy and had bloody diarrhea. Needless to say she was a whole ball of fun, and her ass was chapping by the second. I could NOT keep the diaper rash at bay. I would just run her little hiney under the water....and we ended up letting her soak in baking soda baths to help soothe her tiny hiney. The doctor changed her antibiotic to a different drug based on the pharmacist's recommendation for it being dairy free, beef free, and soy free (Eliette's current dietary requirements) and still providing adequate coverage against strep.

Went to the pharmacy to pick that up.
"Did they give you a coupon to go with this?"
Ding-ding-ding! Red flag, why don't you go on up now???
"No."
"We're gonna call your insurance one more time to verify coverage on this."
"Okay, did I give you the new card? Oh, wait, you probably have it from last time."
.....
"Okay, you're copay on this is $100."
"That's my CO-pay?"
Yeah.....

So.....that was all yesterday.
Today? Eliette went in to the GI doctor today. The bloody diarrhea could be: c-diff, or truly a reaction to the small amount of soy in her medicine. Ordered a c-diff stool test. As I type this, I have frozen baby shit in my freezer. Do you have any idea how weird that is? It's so weird. It's in a bottle, in a zippered bag that they gave me, and in another bag that I declared necessary by myself. And why do they require that I collect it, freeze it, and then bring it in? Don't they have a flippin' freezer? Anyway....I've gone off on a tangent. Frozen baby shit will do that to ya....

So, if the c-diff test is positive, then we will NOT know if it was the c-diff that caused the colitis, or if it was allergic colitis from the soy in the medicine. If the c-diff test is negative, then we can safely deduce that it was allergic colitis from the soy in the medicine.

I'd really been hanging my hat on the hope that Eliette would outgrow these food issues, because I've been told by the doctor and by other mothers that most kids do. Here lately, we've been trucking along, thinking and saying, "I think she's outgrowing this." Her reflux seems resolved and we don't give her the Nexium any longer. She just seemed to be doing fine, and then stuff like this flies up out of nowhere. Dr. W previously told me that we'd go through the introduction of baby foods slowly and go one...at....a....time.....and depending on how that all went, then she'd be able to predict if Eliette will outgrow this or not. Also, I'd heard that many babies who have this outgrow it by 9-12 months. Well, we're at 9 months, and we've had this hiccup... when we talked about it today and talked about the differences between true allergies vs. intolerances, Dr. W says that it's just too soon to know which way she's going to go.
:(

The other thing: soy and dairy being ingredients in medications. This is an issue for people with severe food allergies. This never even crossed my mind. I never thought to fully research the inactive ingredients in her medication as a source of something that could potentially hurt her. Well, let me assure you: her record at the pharmacy is now flagged with this information, and every new medication she starts will include a line by line consultation with the pharmacist to go over every single ingredient. We also discussed how at times, the only available medications that may be safe for her would have to be compounded just for her, and that can be very expensive. At times, if she needs a medicine, we may have to do the risk vs. benefit debate, and knowingly give her medications that may cause this horrible colitis, and treat the colitis in addition to treating the primary illness. THAT I can't imagine. I can see how miserable my daughter can be when her stomach is hurting so bad and her guts are bleeding inside. I can't imagine having to knowingly give her medicine that will cause that. So....then of course we talked about prevention of germs/illness and being hyper-vigilant about the cause. What may cause an easily treated illness in Gage may cause a very expensive or very painful to treat illness in Eliette. As is this strep throat. $10 copay for antibiotics for Gage, vs. $100 copay for antibiotics for Eliette, all after her tummy troubles and multiple dr visits and stool cultures, etc.

So....now when I pick up Gage from school, he will have to change his clothes, wash his face and wash his hands before interacting with his sister, per Dr.W's recommendation. Childcare at the gym? Not right now. Nursery at church? Not right now. Right now we've got to get well, and stay well and appreciate that if she gets sick, our treatment options may be limited, expensive, or painful. So again, the focus is on healing and health.

And the other kicker of the day: Gage has strep throat.
He doesn't even have tonsils or adenoids any longer! Even when he has strep, his throat doesn't hurt now. That's right.... His primary symptom? Coughing. So, he can cough a couple of times, and you think nothing of it, or think it's allergies... You certainly as a well seasoned mom don't go running to the doctor with every sniffle, cough or sneeze... and then you learn that with every cough he was spewing microscopic streptastic bacteria on surfaces and things that our daughter puts in her mouth.

Gage has strep.
Eliette has strep.
Gage is on antibiotics.
Eliette is on antibiotics.
They're both on pro-biotics.
I've been to the pharmacy 3 times since Friday.
We got a diaper delivery on Friday and they're almost gone now.

I'm exhausted from the past couple of days and my husband turned to me tonight and said, "my throat is hurting a little."

...all of this and I haven't even touched on a situation that I've had with my hip....that'll just have to wait 
for another day.

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4 Comments:

At 9:46 PM , Blogger Rikki Hester said...

This might sound totally crazy but I have started using essential oils and I was skeptical at first but for what i have needed them for...they have actually worked. They have one for digestive health and they have one for diaper rashes....and..

I am sorry you are having such a hard time.....

:(

 
At 11:41 PM , Blogger Christy said...

Oh no, how stressful... sounds very intense. I sure hope everyone improves soon. Poor little kiddo's! Stay strong mama!! xxx

 
At 6:11 AM , Blogger LauraC said...

Man, what a ton a ton of things to keep straight. I'm glad she has you as her mama, to navigate all of this and make sure she stays healthy.

 
At 7:54 AM , Blogger Patty said...

I am so behind on blog reading! I hope the kiddos are doing better this week! xoxo

 

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