Our Teddy Bear's Journey

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

Teddy Update

It’s been a while! Sorry! But things have been going fairly smoothly.

Teddy was admitted to the hospital for dehydration in mid-December. His chronic diarrhea combined with an increase in vomiting (probably a GI virus) to result in an almost total inability to absorb any water through his GI tract. I have no idea why this happens, but it does. He reaches a point where any fluid I give him, orally or through his tube, either runs directly through him or is vomited back up immediately. So he needed a few days of IV hydration and he was back to his regular self again.

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This was the afternoon before we drove over. He just wanted to snuggle Genna.

We had a great Christmas at home, with everyone well, it was awesome! I evidently didn’t take pictures.

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Teddy locked himself into the bedroom. That was awesome. This is him just sitting holding a dolly, wrapped up in the rug, waiting for us to get him out.

A few days after Christmas, I noticed Teddy’s hands had suddenly developed a bright red bumpy rash between his fingers. It appeared to be itchy. We assumed he’d gotten into something, but when it didn’t improve after a few days, we went to see the pediatrician, and then the dermatologist.

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Both considered but dismissed scabies and hand foot and mouth disease, and both said probably eczema, take this cream. But the cream wasn’t helping and it quickly reached a point where Teddy was so miserable that he was up most of the night crying, screaming, and scratching. It spread to his feet, legs, torso, and back. Then they started to crack and peel. After seeing some pictures, nephrology agreed it was *probably* eczema, but there were definitely other possibilities, including some kind of scary (though unlikely) ones, that are unique to transplant patients. This is why I usually run everything past nephrology – because neither our pediatrician (who we love) nor most of the specialty doctors in Des Moines have much experience with transplant kids.

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So they had us come see the dermatologist who sees their kids in Iowa City, and she confirmed it IS eczema (a particular type called dishydrotic eczema) and it’s unusual to see it in kids his age, particularly immune suppressed ones. AND she said that the two expensive creams we’d been using would not do any good at all because they’re not nearly strong enough. She gave us the mack daddy of topical creams and said if that didn’t help, we’d try an oral steroid. After just a few days of use, it *seems* to be helping his hands, but not his feet, so we’ll see. He’s still up a lot at night itching and crying.

After dermatology, Teddy had his first routine Echo, which we were checking for heart wall thickening as a result of his high blood pressure. The wait for that was *forever* but all three kids hung in there really well – I was quite proud of them. And though we thought Teddy might need to be sedated to get a good enough look at his heart, he actually just laid there all perfect. It was amazing.

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Last for the day was our clinic appointment with nephrology. They’re really happy with how he’s doing! Some of his labs continue to be bizarrely “off,” but they’re not too much off, so we’re calling it good. His blood pressure seems to be well controlled. And they don’t need to see him for THREE months! Whoohoo! We’ll continue to get labs monthly or more frequently (we’re still trying to get that prograf level under control), but we don’t have to make the drive until April!

She also mentioned that in some kids Prograf can cause an overall heightened allergic response, and you start to see kids who get eczema, EoE, allergies, etc. as a result of the prograf. (Prograf is his main immune suppression. The GI doctor thinks he might have EoE, and obviously he now has eczema.) There is another med we could switch him to – one that I find appealing because it has a much lower cancer risk associated with it, but it’s not as well-studied in kids. Prograf is sort of the Old School standard med, and the other med (Rapamune) is newer. So we’re going to think about it for a while, do more research, and we’ll see. 🙂

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And this is just for fun. Teddy loves pockets now. And he has NO concept of relative size.

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Hospital Stay, New Plan for GI

Well, last week, Mr T was admitted to the hospital for dehydration again. I don’t understand what causes this, but every once in a while he gets something going with his GI system that starts as watery diarrhea that gradually gets worse, then one day it’s markedly worse and he starts vomiting every drop of fluid I try to put in him. That leads to nothing good at all. A fluid bolus with the IV and a day of high-bicarb IV solution and he’s as good as new.

But this hospital stay was the one that finally pushed me far enough to decide to take his GI care elsewhere. We left with no definitive plan, no answers, and no followup on previously-made plans. The GI thinks he might have EoE and wants to do some testing for that, but he has to be on a high dose of omeprazole for 8 weeks before the testing. But we were discharged on the same dose. GI stopped by one time while we were there and offered no opinions, thoughts, or solutions. The GI resident was rude, and kept asking questions and then interrupting my responses. He then passed along incorrect information to the rest of the team.

EoE can be tricky to diagnose and to treat, and I have completely lost confidence in the GI team at UIowa. We decided to see if we can get an appointment with the EoE team in Cincinatti. I think we’ve started that process; I’ll update when I have any information.

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Clinic Visit

We had a GREAT clinic visit today. I didn’t even have my suitcase in the car and I didn’t bring my Just In Case bag of supplies. 🙂

We started off by popping into the clinic quick an hour before our appointment to get a Prograf level drawn. (Prograf is one of his immune suppression drugs, and it must be drawn when his next dose is due, which is at 9.) Our plan was: quick labs, then playground until appointment check-in time.  How it worked out: Hit lab at 9:10, exit lab at 10:10. Not kidding. And the phlebotomist today was NOT super skilled at finding Teddy’s veins. And his third poke, after we switched arms, he screamed like we’d just cut his arm off, so that was fun. 😦 He’s usually so good for labs with his super favorite phlebotomist here in town, with some protesting but not much… so I think it was not so much him but more her.

We discussed…

– Teddy’s labs, which are stellar. 🙂 Except his Prograf, which was really high for some reason when we did labs last week at home. (which is why we were doing them again today.) Today, after a dose reduction, the level was even higher. Yay us. So we’re reducing a smidge more. Dr. Z has learned from experience with T that if you reduce his Prograf dose what seems to be a reasonable amount, his level tends to plummet, so we’re inching down by .1 mL at a time. 🙂

– Blood pressure. Not stellar. We had tried reducing his dose of BP meds about 2 months ago, and it became apparent immediately that THAT was not going to work. (In theory, working kidney should mean his BP will eventually be normal without meds, but nothing is guaranteed.) We increased back up to not quite his old dose, but now we think that not only was that just not enough, but that he’s actually even outgrown his old higher dose. End result: now he’s on an even higher dose.

– Weight: He’s still gaining and at an OK rate, so we’re not messing with diet at all. Height, he’s also growing. 35 inches today. That’s 8th percentile for height. Last time I looked him up, he wasn’t even on the chart, so this is a huge change. 🙂

– Growths. He has this thing on his leg. But it doesn’t look like a wart, doesn’t look like Molluscum, so it might just be… a bump of skin on his leg. It hasn’t changed in any way since I first noticed it 3 months ago. But now he’s got what looks to everyone to be a wart on his foot. We’ve got a pediatrician appt in 2 weeks and we’ll get her opinion and probably have her remove it. Before you message me about duct tape or home treatment or leaving it alone, warts are viral and can be very very hard to get rid of in transplant patients. It is better, generally, to take action early than to risk it spreading. And when I say spreading, I mean… really really spreading.

– Sleep and why Teddy doesn’t. Nephrologist doesn’t think it’s related to his meds and might just be his wiring. Ultimately, it doesn’t matter, we’re not changing his meds. Life experience of other transplant moms suggests that at least some of might be related to the high prograf level. (His sleep’s been bad since his transplant, but markedly worse in the last week or two.)

– Headaches. Teddy bangs his head, which he’s always done, but it had gotten much better and now it’s worse again. This might also be related to the high prograf. And makes sense, because his banging was worst when his prograf level was at its highest right after transplant. I think he gets headaches, and he bangs his head (either on a hard surface, or with his hands) to help it feel better.

– Diarrhea and vomiting. Again, both had gotten better and now both are worse. God only knows why. I’m so sick of this topic of conversation, and yet it’s probably the one thing I discuss the most often, ever. I bet I’ve talked more about diarrhea in the last year than any other single subject. I tried putting him back on the reflux meds, and we went from 2-3 vomits a day to 3-4 a week, so that’s an improvement. We’ll see. Otherwise I’m at a loss and can’t decide if I want to get back on GI to figure something out, or just drop it and fall back on trying to wish it all away.

– Vaccines. My favorite subject. He’s a year post transplant now, so he needs to get the very few shots he’s behind on. Did the DTAP today and will hit the other one (Hep A I think) in 2 weeks with the ped. Then he’s good until he’s 4, I guess. They think I’m funny because I know literally nothing about the schedule even though he’s my third. Not that the “recommend schedule” matters to me, lol. I’m clearly going to follow my own plan anyway.

– bicarb. We finally get to reduce the bicarb a bit and see how it goes!!

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How is Teddy Doing?

He’s doing really really good!!

Labs have been pretty good. The big important kidney ones have been super as always. The rest of them are kind of iffy/great/not great. Some things are great, some things are not great. We’re working on figuring out what’s up with everything and getting it solved.

The biggest thing is that since I reduced his calories from 1400 to 1000 about 5 weeks ago, his diarrhea has disappeared. He had several days of diarrhea earlier this week, but it seems to have gone away, so I’m thinking it might have been related to travel. (We went on vacation. More on that later.) And since I’m not feeding him as much volume during the day, he gets hungry. And eats. Food. With his mouth.

Yes. Food. Mouth. Chew, swallow. He does it. Not a lot. But more than he used to, and he’s shown a great willingness to try new foods in the last few weeks, as well. Pancake. He licked a muffin. He swallowed a piece of pasta. He’ll eat an ounce or so of his blended diet (what I put in his tube) every day if I feed him with the syringe.

It’s exciting.

In the last 2 months, he’s learned how to run, and how to jump and get both of his feet off the ground. 🙂 He loves it and does it for fun. He has discovered how much he loves water play, finally evidently realizing that water is, in fact, not evil. 🙂 He plays in the sink. He insists on baths whenever he thinks of it. He plays at the water table outside. He loved the pool on vacation.

He’s very very very 2. And very very very active. In fact, we had a group meeting with several of his therapists and a new person this week and the new person kept talking about how very very active he was, and the therapists all said almost in unison, “he’s calmed down considerably compared to 6 months ago!” And it’s true. Once he learned how to walk, he was just basically moving all the time. Read a book? What? Why would I do that when I could look at the book for 3 seconds then go get five other things, and look! something shiny, and I forgot I left my car here, and there’s a ball!! Non stop. Now he will actually play with something, which is nice. But he’s still just very very very active. And Two.

He’s going to have an evaluation with a speech language pathologist in a few weeks. He’s got a sizeable vocabulary, and he can string words together into sentences. I think we can understand him better than we could understand either of the other two at this age (but that’s a really really low bar – they both had terrible speech). But he is not able to converse. He cannot or does not answer questions. There’s no two-way conversation with him. So we’ll hear what she has to say, and if it’s something to be concerned about or if he’s just at the tail end of normal.

His blood pressures have been pretty stable – enough so that I’m going to ask at our next appointment if I can try reducing his dose of anti hypertension meds.

We get to try stopping one of his meds next week. Kids are usually on Valcyte for 3 months following a transplant, but with Teddy’s congenital immune deficiency, his doctor wanted to keep him on it for a year. Then when his viral levels started climbing, she doubled his dose and so he’s been on a pretty high dose for a good long while. We’re going to stop it and monitor viral levels for a few months and if everything stays low, then we’re done with Valcyte for the time being. 🙂 Yay.

There’s another med we’re going to discuss dropping, as well, but I haven’t had a chance to research it yet.

We had an appointment with the Genetics doctor a few weeks ago to discuss the outstanding issue there, and though he discouraged proceeding with the testing suggested by the liver biopsy (in favor of waiting to see if symptoms develop), I basically insisted on doing it anyway. They were going to get started on the paperwork and draw blood for it when we’re in Iowa City next (early July). I should know by then how long it’ll take to get results. It’s one of those things, they want to see us in person to discuss results, so even after the results come back, we’ll have to wait until we can get out there for an appointment.

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What we’ve been up to lately

I’m not great at pairing pictures with blog entries – I do things in batches, including uploading pictures.

So here’s some of what Teddy’s been up to recently.

Beep Beeps
This was after our most recent clinic visit. We were ready to go, but as we were walking through the waiting room to head out, he noticed BEEP BEEPS was on the TV!! (Cars) (He’s a bit, um, obsessed.) (Notably, his second favorite movie is Fast and the Furious, just the beginning scenes with the racing.)

Eating Marshmallows
In a Never-To-Be-Repeated event, Teddy swallowed marshmallows on purpose.

Tornado
He had his first tornado alarm. Not really his first alarm, but I honestly don’t remember actually heading to the basement with him ever before. We really didn’t need to head down, but the weather guy said there were rotations over Clive (a suburb to the west) and we decided that since all 3 kids were asleep at that time, heading down sooner rather than later was prudent.

Reading
Wally read him stories. 🙂 Wally’s also been rocking him at naptime (with limited success), at his request.

Cupboard
Crawling into cupboards at Genna’s speech therapy.

Fabric
I bought this fabric to make a shirt. He stole it. Pre-shirt-ified.

Shirt
This is after I literally fought him for the fabric, which he kept pulling off my work table, to get the shirt made.

Soup
NerNer (mater) soup? Yes, please. No, he didn’t eat it. I was hopeful, though.

Chickens
I try to keep Teddy away from our chickens, since they have some specific diseases that transplant patients can get, but Genna showed him how to feed them grass through the hardware cloth on their enclosure.

Play
Of course this is my favorite part of the play structure in our yard!! Unfortunately, he can’t get up there by himself (he’s afraid of the ladder), and he can’t get down (he’s afraid of the slide).

Sleeping
He used to sleep like this ALL THE TIME. Head thrown back in the wrap or carrier, and resisting all attempts to move him to a more comfortable-looking position. And here he is, at Wally’s music studio’s spring recital, doing it again.

Shirt
Some awesome family friends sent us this Tshirt for Mr Cars Obsessed. 🙂

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Genetics

So… Genetics did a bit fat nothing after Teddy’s transplant, whereas I thought they were sending in his DNA for various tests. Nephrology finally leaned on them a bit a few weeks ago and they sent in for one test, which was for a Glycogen Storage Disorder (type 1b). Just got the call today that he does not have that.

Which, frankly, Dr. Google had pretty much already told me he didn’t.

But, anyway, $1 billion dollars later, we’re pretty sure he doesn’t have GSD Type 1 b, c, or d.

However, that still leaves the Terrible Awful that nobody’s tested for yet, and they don’t seem to want to, and at the very least won’t consider doing so until we meet in person. (Today, she said something about only having had that one appointment. Dude, what seriously do you need us for? You’ve got his DNA, isn’t your job pretty much to test it for things? I can’t think of a single benefit that my sitting in their office will have, but whatever.)

I haven’t really mentioned this beyond some offhand references to the Terrible Awful. Lafora Disease was mentioned as a possible suspect way back when his transplant was cancelled. It is both terrible and awful. It’s about the worst thing I could imagine. (more accurately, it occupies that space along with many other things, all of which win first prize for being Most Awful.) It was presented to me as just one of the things on the laundry list of potential things that could tie together a range of his issues. I looked it up briefly, freaked out, then decided not to worry about it as nobody else seemed concerned. And they said they’d check for it. So during his transplant, they took a wedge biopsy of his liver and also did a skin biopsy. I never heard the results. Then I heard that “nothing had come back.” But that was not true.

When I got a copy of his records to take to the GI we saw here in town, I saved a copy for myself and read them over. And found the biopsy results. Which were “hepatocytes with cytoplasmic inclusions which have a glassy appearance” and, later, “abnormal glycogen present with hepatocyte inclusions,” and then “hepatocyte ground-glass inclusions, predominantly present in zone 1.” And the conclusion, which made my heart stop, “the appearance, location, and staining pattern are most consistent with hepatic inclusions described in lafora disease.” “Correlation with genetic testing is recommended.”

AND THEN NOBODY DID THE GENETIC TESTING.

And I don’t understand why they’re dragging their feet. If I had to guess, I’d say it’s because genetic testing isn’t 100% accurate with lafora, and the biggest indicator will be if he were to become symptomatic, which usually doesn’t happen until 10-12.

And maybe if you’re a Genetic doctor, that course of action makes sense to you. But if you have a human soul, I’m not sure it does. I mean, you can’t say, “hey, your kid’s liver looks like the liver of someone with this awful genetic disorder, but we’re comfortable just waiting to see if he develops symptoms – maybe he never will. Have a great next decade totally NOT worrying about this for every second.”

See… I would have preferred to NOT have loooked at this at all. I’m not sure why we were looking at/for it. We were supposed to be restricting our looking to things that might impact his transplant. This clearly wouldn’t, so why was it even up for discussion? But I’m not the one who brought it up. They are. And now that they’ve opened that jar, there’s no closing it back up. I can’t go back to NOT knowing that’s what the biopsy said. And at this point, I’ll be better able to deal with life in general if I know.

So we’re headed over to see them later this month and then hopefully I’ll have convinced them that they will come to physical pain if they don’t get the results of the Terrible Awful as fast as humanly possible since it’s been ALMOST A FULL YEAR.

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Clinic Visit last week

Our nephrology appointment went well. Everything looks pretty good.

I asked about adding a magnesium supplement (his mag is always low, plus he seems to have problems absorbing vit D, which can be complicated by low mag), and she said that technically yes, he does need a mag supplement, but that causes diarrhea so she’s hoping to avoid it if at all possible.

We discussed the dietary changes I’ve tried and the results. I feel like we talked about more, but there were no major issues. We’re slowly increasing his immune suppression again, since his viral levels have all remained “undetectable” for a few weeks now.

 

Then we saw GI. We actually had to call in Child Life because he was CRAZY PANTS by this point. She was a life saver!

So.

First we talked to the resident or fellow we’ve been seeing. Then she went to talk to the “actual” doctor. Teddy and I were walking the halls during this time and noticed our nephrologist in there with them, too. She’s not happy with this, at all. And I appreciated her willingness to basically tell them that.

They basically went over everything again. They’ve been very thorough in checking for things they can check for. We should try: decreasing fruit (done it), limiting juice (done it), increasing fat (he’s sitting at 60% of calories from fat, I’m totally not giving him more fat), decreasing water (he’s at the bare minimum).

They view his diarrhea now as being different from his diarrhea when he was on Cellcept. I don’t, but ultimately, I also don’t think it really matters. Frankly, runny poop is runny poop as far as I’m concerned.

I told them that literally everything we try works – for a week, two at the most. I told them that my ultimate plan was, if something seems to work for 3 weeks in a row, then I’ll stop doing whatever that thing is and see if it gets worse again, and then re-start to see if it gets better. But nothing’s ever worked for three whole weeks.

I told them I really just don’t buy the Toddler Diarrhea thing. That I have a hard time believing this is REALLY “normal.” It’s not normal to have runny, watery, mushy poop 10 times a day every day. It’s just not. I’m sorry. It’s not. And have they really seriously ever seen a toddler with “Toddler Diarrhea” who poops 10-12 times a day every day? They danced around answering that one, but the “info sheet” they brought in (as though I haven’t been Googling this) does say “3-10 times a day.” Well… I don’t know. It also says that doing the above-listed items (no fruit or sugar, no juice, increase fat, decrease water) will help. They haven’t.

They just don’t see this as a problem.

Nephrology sees it as a problem because a) not normal.   b) no weight gain.   c) unstable prograf levels. (That puts his kidney at risk.)

GI then comes in and tells me that they think his weight gain is perfectly fine. He’s following his own curve. Um… if that curve is basically flat. He’s falling off the chart again. UNLESS you cover with your hand all of the lowest weight measurements, then he looks much better on the chart. Seriously. He covered up the low measurements, but not the high measurements. Um… I am not a doctor, but I actually do know statistics, and I know that you can’t just cover up the outliers on ONE SIDE. That doesn’t work.  ALSO? It’s considered normal to have a bunch of weight gain after you finally get a working kidney. Teddy? Not so much. I wasn’t worried about the weight immediately after transplant. None of my kids have been big growers between 1 and 2. But they both grew a lot between 2 and 3. He’s getting taller, but he’s not gaining any weight. Now, maybe that is just his normal. Maybe he’s just behind a year and right now, he’s growing taller, and at 3 he’ll start to put on weight. I don’t know.

Then he tried to tell me to stop the probiotic. Not for any really good reason other than he doesn’t think they work. Oy.

And I basically said that it’s not that I’m WORRIED about the diarrhea (because they asked me how worried I was), but rather that I KNOW that it’s not normal, and I don’t know how he can have much of a normal life (or, being honest, how I can) if he’s pooping 10-12 times a day. I mean, we went to the playground with Genna for an hour and I changed three poopy diapers. Do you realize that means that either he stays in diapers until this stops (which could be FIVE YEARS OLD, if they’re right and it’s just “Toddler Diarrhea”), or he never ever goes anywhere where he’ll be further than a few feet from a toilet. How is that possibly going to work? I mean, really.

So we left it at, follow up in 2 months. And I said, I’m not going to “follow up in 2 months” for the next 3 years. Because seriously. What the hell is the point? Literally every appointment, we go over all the things they evidently suggest to every person with diarrhea, and I say we’ve already done that, and then they say to follow up in 2 months. I mean… waste of time. So, we’ll follow up in 2 months, and then at that appointment, I’ll tell them that if they don’t really have anything new to bring to the table, I don’t plan to see them again.

Also, the GI we’ve been seeing is graduating and moving on, so another GI is taking over, but this GI doesn’t do clinic on Thursdays. Which is when our nephrologist does clinic. WHAT genius thought THAT plan was going to work??

 

We added 2 new meds. Allergy med, to see if it helps his snoring/stuffiness and to see if it helps diarrhea. (And we have an appt with allergy later in the month.) And a reflux med to see if it helps with his random vomiting and coughing. He was on reflux meds his first year, and they didn’t stop the vomiting (but with the bad kidneys, I don’t think there was any stopping the vomiting) but they made a HUGE difference in his discomfort and in the arching, crying, retching. So… we’ll see. As it turns out, we have to get that one as a capsule and I have to dissolve it in his sodium bicarb, so I get to feel like a chemist every morning. It also makes our morning med routine a bit more complex. 8:15, mix the meds. 9:00 give meds.

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Food and Poop

In the ongoing experiment that is Teddy’s diet and GI tract, we’ve tried a few things these past few weeks.

 

1) Saw a local GI who suggested a Thyroid check and also adding Benefiber, despite the high amounts of dietary fiber in his diet. Then his nurse failed to call the lab orders in to the correct lab, twice, so we still haven’t done a thyroid check. We did add the Benefiber, and it seemed to help for about 1 week. I started it April 20, and by April 21, he wasn’t having watery or even particularly runny poop any more. I took pictures. (Yes, I have pictures of actual formed solid poops. No, I’m not sharing them.) But he was still pooping 8-10 times a day. But at least they weren’t runny and messy, right? A fellow kidney mom said her experience was the same the first week of Benefiber, but the second week, the frequency was reduced.

2) Sunday, April 27, Teddy’s poop was no longer solid. Mostly mushy. 😦

3) Monday April 28, I started a pre-planned change to Teddy’s diet. I moved him to all baby food. Actually, the recipe is baby food with oil, molasses, honey, almond flour, gelatin, and milk. Another friend of mine had great success with her daughter’s diarrhea after switching to a diet similar to this, and yes I’m at the point where I’ll try random things that other people I know have tried.  Also, we’ve always had this vague plan in the back of our minds that if we’re inpatient unexpectedly and I don’t have enough blends and I don’t have my blender, we’ll switch to baby foods, but we’ve never really had any firm idea how we’d actually do that. Our nutritionist found a recipe online that I wasn’t thrilled with, but had agreed to, but we’ve never tried it. I wanted to try it so I’d have more confidence it’d work if needed.

4) Thoughts on that:

a – Monday, I used cow milk. He vomited at least half of his intake, and his eczema got much much worse. Monday night he didn’t sleep well because he kept trying to scratch the backs of his knees and elbows. Tuesday and Wednesday, I used canned coconut milk and he tolerated that much much better. Thursday, I used milk again and the eczema again got worse. I’m writing this on Sunday, and it’s still pretty bad, but not as bad as it was Thursday.
b – I was actually able to get in ALL of his calories during the day (first time ever) and most of his liquid during the day.
c – The blend was REALLY watery, which was strange, and I wasn’t sure how he’d do keeping it down, but he’s lately only been tolerating fluids when given with food (whereas before, he’s always had to have them separated). He did fine once we removed the dairy.
d – I personally prefer giving him our own blends, because he gets a wider variety of foods that way. (There isn’t baby food salmon, for example. Or baby food Eggs.) But having a plan that I know will work using just baby food and a few extras is super. Since this plan doesn’t technically have any elements that must be kept cold and it can be blended with a stick blender, it should in theory be easier for travel, for example.

5) During the week of the baby food, his poop got progressively worse, until by Saturday, he was pooping mostly liquid with very few solids, and the frequency was up to 10-12 times a day. The question remains: is this from the baby food blend, is this from the sugars (molasses and honey), is this from the dairy, or is this from his GI system trying to keep us guessing?

6) I would have liked to have a chance to figure that out. (My plan was to return to our regular diet this week (May 4) with the Benefiber and see if things improved again. If they did, then I was going to do another week of baby food but no dairy at all, and then maybe a week of regular blends but WITH dairy, and then at some point try a week of regular blends without the Benefiber.) BUT then all of our appointments at UI, including with GI, got moved up to next week, so I’m going to have some very incomplete information to take to GI. The good news here is, I seriously doubt they’re interested at all. They seem to not care one iota what I feed him as long as I’m not giving him any fruit. (which I am, FYI, because through experimentation, I discovered that it makes NO DIFFERENCE.)

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Yikes, haven’t updated for a while

So remember when I said No More Iowa City for TWO MONTHS!?!?!

Well.

So Teddy got a GI bug (as we all did) and ended up admitted for a few days about 3 weeks ago just to get rehydrated. His GI system can’t handle a whole lot of liquids, so the more I tried to rehydrate him at home, the more he just had diarrhea and I honestly believe I was making the problem worse. The ER doctor here in town (in our ONLY bad ER experience here) did labs only after I insisted (labs were the ONLY reason we went to the ER, after he’d gone over a day without peeing at all) and then wanted to send us home just working on oral hydration. Which was fine. He sent us home, I called his nephrologist myself, she got his labs, and got him a room on the peds floor at UI. It was fine. Just a few days.

Then we had to go back for an appointment with neurology. I haven’t talked much about it, but evidently his liver biopsies have both showed some concerning things that could point to a particular seizure disorder that doesn’t show outward symptoms this young, so the more I asked questions about Teddy’s breath holding spells, the more everyone started getting pretty concerned. Not necessarily concerned… more like “hey, it’s probably nothing, but I’d sleep better at night if I had to talk to neurology.” So we talked to Neurology. They had no concerns about him at this time, they feel confident it’s just breath holding spells. Everyone feels much much better now. 🙂

Yesterday, Teddy had his hearing checked. I can’t remember who told us we should take him back for a hearing check after the tubes came out, but someone did and so I took him and it was PERFECT. I might take him back for that every few months, just because having tests come out PERFECT is so super fun and not something that happens all that often.

His labs have been a little all over the place, but not too terribly awful. His prograf (drug) level has been REALLY all over the place, which is bad. We’re trying to figure that one out.

That’s about it. We go back to Iowa City at the end of this month to see Nephrology, GI, and HOPEFULLY Genetics will have some news for us by then, as well.

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Clinic Today, Awesome.

We had a great clinic appointment today. Though we have to get labs every 2 weeks for a little while, we don’t have to go back to Iowa City for TWO MONTHS. Two months. 8 weeks. Literally, we have never ever ever been to Iowa City any less frequently than every 4 weeks, and I think it’s only been maybe 4 times total that we’ve had 4 week appointments. 8 weeks. Yowsers. I’m going to forget how to get there! My tires, unflushed transmission, and gas budget won’t know what to do with themselves.

1. Teddy’s labs are stable and really nice looking. Finally, everything is mostly within normal ranges, and the things that aren’t are not panic-inducing.

2. Weight. Teddy lost a half kilo last week from diarrhea, but his labs remained good. Dr. Z said she thinks we finally have Teddy to the place where he can have diarrhea and even lose a little weight from it and not get dangerously dehydrated. Like normal people. Yay. I’m still to call if he loses weight ever again, though. 🙂

3. Diarrhea. Teddy still has ongoing diarrhea. It wanes and waxes but never goes away. I’m seeking a second opinion with a local GI doctor. Somewhat to my surprise, our nephrologist was really happy I’m taking that step. I’m just not willing to accept the UI doctor’s diagnosis of “toddler diarrhea – nothing can be done about it” without another doctor agreeing with that. When I read the symptoms of Toddler Diarrhea… it just doesn’t seem to really match up. It seems more like “Let’s Call It This Because Then We Don’t Have To Admit We’re Baffled.”

4. Vomiting. Vomiting is getting better all the time, but he still vomits. His labs don’t contain anything that should be making him vomit, so neph and I both think there’s something else going on with his GI system.

5. Eczema. Teddy’s developed Eczema on his legs and arms. I’m thinking it’s dairy, which also caused lots of problems with Wally. He hasn’t had dairy in his diet because of this, but we will literally put every food we own in front of Teddy and see if he will eat it, lick it, or even touch it, and he one day decided he’d eat shredded cheese. He also sometimes eats yogurt and he LOVES chip dip (which I let him have because he eats it with chips, and dry/crunchy is a texture I’m trying to encourage – unfortunately, he never actually eats the chips, and in fact goes to great lengths to spit them out if they break apart in his mouth). So ALL of his oral foods are dairy. Neph didn’t think dietary changes were necessary at this time, since it’s a change of seasons and the eczema could easily be something else. I’m probably going to go ahead and get nondairy versions of Teddy’s foods anyway, see if he’ll eat them, and if so, we’ll pull dairy for a month or two and see what happens.

6. Genetics. We still haven’t heard from genetics. Last I heard, nothing had come back concerning, but evidently that was because nothing’s come back, period. Urg. They’re still wrangling with insurance, and when I say “wrangling with insurance,” I mean, “not taking the time to pursue it with insurance, since they didn’t perceive this as particularly urgent.” Which it’s not, but it still needs to be done. It’s been since June. I was especially glad that our nephrologist didn’t make me feel like a paranoid jerk over this, she said that she herself has been anxious to see the results, particularly since they had mentioned some really horrible things to her that they were testing for. We agreed that we both realized that, since these things are rare, that chances were that he did not have any of them, but at the same time, now that it’s been talked about as a possibility, we both really just want to know. She brought up LaFora Syndrome, which is the one I have been calling the Terrible Awful. Genetics will also eventually hopefully be able to finally answer the question of whether he has an MCAD deficiency. If he does, it’s not presenting in a typical way, but this is Teddy and since when has “typical” ever come into play? Right now, we’re assuming he does not but yet being cautious.

7. Neurology. I mentioned my concerns over the Breath Holding Spells (BHS) and that Teddy’s going to see his ped next week about this. Late last year, Teddy lost consciousness twice in one day and was diagnosed with BHS. It’s an involuntary reaction to strong emotion that causes a child to stop breathing momentarily. In many children, it happens when they’re particularly mad, when they’ve had an injury, etc. Teddy’s has always, always happened after a blow to the head. Only a blow to the head. He’s taken some legendary falls that didn’t involve his head and cried very very hard and been fine. And he’s had some relatively minor bumps to the head that make him stop breathing. That’s somewhat strange. But the other strange thing is that he always vomits afterwards, and nothing in any of the literature I’ve found mentions vomiting. So I’m telling our Neph because she’ll get the office notes on it from the ped and I just wanted her to know, and she got somewhat concerned. (I guess some of the things they’re checking Teddy’s genes for – or not checking, as the case may be – are seizure-related.) So she said to talk to the ped, but if there was any question at all that there might be more than just regular-kid BHS, she wants us to see neurology.

8. Elevated LFTs. His Liver Function enzymes are still high. Nobody knows why.

That might have been it.

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