Our Teddy Bear's Journey

Theodore was born with renal failure. This is his story.

Clinic and Hematology

on March 19, 2013

We had clinic and also an appointment with hematology last week. It was just an odd day. Normally I have appts in the mornings, so I get up at 4ish, pump, load up the car, wake the kids, drop off the kids, and drive out all before most people have left for work. I like that. I get done in Iowa City shortly after lunch and pick up the kids mid afternoon. Time to rest and pump and do the Diaper Bag Empty and Repack routine, meds, wash pump parts, etc. before dinner.

Wednesday, we had 1:00 and 2:00 appointments. I got home after dinner, and yet we still didn’t quite have enough time before we had to leave to get any amount of school completed. I was just off all day.

Consequently, I forgot to ask hematology a REALLY important question.

They had no concerns with his labs, and offered a few potential answers for his constantly high platelet counts. Also the added reassurance that they’d have to get a lot higher before anyone got worried about him. The main concern is that you don’t want to start clotting off in the OR while they’re hooking up your new kidney. Teddy’s Protein C and Protein S came back higher than normal (which is not a concern, from what I read online) but since it’s really important that all of this goes well, checking with hematology was a prudent step. Protein C and Protein S help tell your body when to STOP clotting. His are high, so that ends up meaning that he has more of the protein that tells your body to stop clotting. So he would tend to clot less than the average person. This ends up being a good thing.

Now what I forgot to ask about was MTHFR, which is a genetic mutation that I have that affects clotting. MTHFR tends to make you clot. But it tends to make you clot through having higher homocystine levels, and his homocystine levels are normal. So, the research I’m doing has been challenging (because, SHOCKER, not too many people are publishing research on Toddlers With MTHFR Receiving A Kidney Transplant), but ultimately seems to say that MTHFR (the A1298C mutation) would not, on its own in the absence of hyperhomocystinemia, tend to cause a problem.

However, you know, I’m limited to PubMed and a very few free access medical journals, and I’m not a hematologist. So I meant to ask. And I didn’t. So I’ve emailed and am awaiting a response.

Teddy’s NOT been tested to see if he has MTHFR. Based on my understanding of genetics, there’s a 50% chance he inherited one defective gene from me (I am heterozygous, so I only have one defective gene – Teddy could have gotten that one from me, or he could have gotten the healthy gene). I’m not 100% certain it’s relevant to his transplant. I was originally freaked out after talking to another mom whose kid lost his first kidney to MTHFR clotting, but really the research doesn’t seem to support any level of freaking out. I’m going to trust the hematologist in this.

(regardless, I’m going to have all of the kids tested at some point before too long. They need to know and I need to know. Particularly Genna, but all of them should know if they’re passing along defective genes.)

 

Clinic appointment was fine. Nutritionist we’ve been seeing was just temporary, she’ll be leaving and we’ll meet the new permanent one next time. I didn’t post about my big phone blowout with this nutritionist, but she wanted me to switch Teddy from blenderized food to a “whole foods based” formula after transplant because of the risk of food-borne illness. Let’s note that the “whole foods based” formula’s first ingredient after water is sugar. There are so many things wrong with that whole conversation, I can’t even begin to get into it.

His labs are pretty good, PTH shot up to over 1000 all of a sudden, though. And his potassium is low, so I’m actually giving him some carrots in his blend and I feel so… naughty. I told our nephrologist I could give him some avocado and she was like, “um, don’t get too crazy with the potassium.”  Funny thing is, I’ve already been cheating on the potassium as it is. I don’t do the crazy high foods, but I’ll do some of the foods on the “high potassium” foods lists. He’s always been fine.

She suggested there’s a possibility that he’s just losing his ability to hold on to potassium, and is peeing it all out, too. sigh. Nature of the beast……..

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