day 11 of fever but i am optimistic for possibly no reason

So this morning Miss A woke up at 7:30ish having slept for about 14 hours, not counting her half-hour of waffle eating last night. She got out of bed and went straight to the sofa and laid down again.

We went to our 10:00 appointment with the pediatrician. He came in and said, "So, I just met with Dr. Hematologist-Oncologist, and you need to give him a call. He'll be in contact. You need to move onto the next steps, because we don't know what is going on with her blood work."

Naturally that wasn't great news to me. This first step was to test for rare metabolic disorders that make it so B12 can't be absorbed into the tissues, and it just sits in the blood. Since her B12 levels are now more than twice the "high" limit of normal, I thought that sounded about right. Because the other options are ??? and cancer.

Her pediatrician ordered a chest x-ray, and then we left. On the way home Miss A said she was so tired, and she looked like she was falling asleep. It was 11:30. She'd been up 4 hours after sleeping almost 14. This is NOT my kid. Miss A has never slept that long before, not even when she was a toddler or baby. This is a kid who doesn't sleep.

The pediatrician called at 12:45 to tell me she has walking pneumonia. He prescribed her something that should have her feeling better by Monday, if the pneumonia is bacterial and if her fatigue is due to the pneumonia. He was careful to stress that the pneumonia is not the cause of her insane blood work.

Our pediatrician is older than we are -- maybe mid- to late 40s? -- so I don't like it when my kid's blood work is doing something he's never seen before and that he has no idea how to handle. That just doesn't sound super.

I had a work call at 1:00. I couldn't find my magic token that allows me to log into this clients' secure network (or something) and the project is crazy-confusing and I was a little distracted. Then halfway through the call the hematologist/oncologist called and I decided to hope everyone would think I had my line on mute and I clicked over. He said her blood work showed she doesn't have the metabolic thing, and should be able to metabolize B12 just fine. He said we should let her take the antibiotics and see how she feels and then recheck her blood in a few weeks. Or we could go ahead with a bone marrow aspiration thing, but he felt there was a low chance of finding cancer.

He said the kids he sees who end up having leukemia are usually fairly ill and don't get better, so if she improves he wouldn't recommend pursuing the bone marrow test. But if she shows signs of progressive fatigue, looks pale, has ongoing fevers, or develops easy bruising or bleeding, we should test.

Of course, in my head, she slept 14 hours last night and doesn't want to do anything but rest; she looks like hell and is very pale; and has had a fever for 11 days, but okay.

I asked if he would do the bone marrow test if she was his kid; he said he'd wait. So that's what we're doing.

After we got off the phone I felt elated! I'd been expecting to get very bad news today, so I felt great! We had a reason she is so very sick, and hope that she'll get better! We have "I don't know what this is, but I don't think it's cancer!"

Then Jason pointed out that we still have no idea what is causing her blood levels to be so far out of range, so we really know nothing except that it's *not* the most benign thing they'd suggested. But if she gets better we go back in 3-4 weeks and check all her blood levels again, and take it from there.

i would like a prescription for an internal numbing cream, please

Today is DAY 10 of fever. I think she topped out at 100.6 today so they're going down... she usually has a lower temp than 98.6, though.

So while her fevers are improving, I do not think her health is. She perked up a little yesterday morning at the dr., until her blood draw. Since then she's been down again. She laid around all yesterday and fell asleep on the sofa around 7:30. Tonight she fell asleep at 5:30, slept until Jason woke her at 7:15, ate two waffles, and asked to go back to bed. And she did, by about 7:45.

She also looks like hell.

I called our regular pediatrician because I had the thought that even though her lengthy fever and abnormal blood work are linked in my mind, maybe no one else is paying attention. She didn't have a real fever at the specialist's office yesterday, and for all I know her pediatrician is done with us now that he's passed us along. So I called and the nurse agreed she needed to be seen again, so we go in at 10 tomorrow morning.

I am still clinging to some rare gene mutation or something being the cause of all this, but in innocently trying to look up how one treats a condition of being unable to metabolize B12, I found an abstract from an article published in a medical journal that said B12 levels above a certain threshold, more than 95% of the time, are because of something scary and cancer-y. And Miss A's levels are well above that threshold. But as I told Jason, our new rallying cry is WE ARE THE <5%!

I felt calm and fine today during the day, but once the kids and I got home from speech I suddenly felt very alone and uncomfortable. There's no one I can talk to about this. I can't sit around researching stuff all the time. I am distracted enough that it's hard for me to be patient when dealing with important problems like, "He looked at me," and "He farted and it smells," and "She thinks she's older than us." I'm forced to just sit with this and I don't like it.

Where is my mfing blood work? Why is it that Dr. House never has to wait a week for lab work? He can analyze every blip of a person's DNA from the smell of their pee or the way they blink. Where is my TV super-doc? Why can't I have a human laboratory at my disposal?

i'm living on adrenaline and gummi bears and it's working for me!

What's up, bitches! I am flying high tonight for no reason other than a calm and soothing pediatric hematologist. I woke up this morning and made responsible phone calls to insurance and looked up pediatric hematology. Then I made the realization that all these pediatric hematologists are actually pediatric hematologists-slash-oncologists.

Ohhhh.

I called and they didn't have anything until February, then I told them today is Miss A's 9th yes NINTH day of fever, and they made us an emergency appointment at 10:30.

Oh. Again.

By the time we arrived at the hospital I was fighting off a panic attack. Luckily the staff in a pediatric hematology-slash-oncology department are clearly well trained in bedside manner, because everyone was ridiculously nice and I want to be friends with them. But only outside of work.

The doctor himself soothingly told me that there are some rare metabolic disorders that affect the way B12 is synthesized, so he first wants to test those metabolites. (Or something.) Then if that comes back looking normal, we will check her blood every so often for a while to see if things even out. Then if they don't, we do a bone marrow test just to rule out myeloproliferative disorders, which are pre-leukemia conditions. He said this all so reassuringly that I felt calm and awesome and not at all like, "Wait if the metabolic disorders are so rare that there's little on Google about them but leukemia isn't especially rare, what do those stats look like for us?" And "But what if we can't rule them out? And where did you go to PR school because you are amazing!" I didn't feel those things until later. But I feel pretty sure the metabolic disorder is going to be a win. And I am assuming it is easy to treat and fix, and therefore feeling pretty good.

Then the nurses there applied numbing cream to Miss A's forearms so she wouldn't feel them collecting her blood. Blogworld, this is a minor miracle. Miss A did not do well with her first blood draw, since her lack of contact with reality gives her superhuman strength. It's like finding yourself on another planet with less gravity, so you're like a superhero. That's Miss A, except substitute "reality" for both "planet" and "gravity."

Then after her second blood draw she started to pass out in the parking lot and Jason had to carry her to the car, and she's talked about it every 15 minutes since. So the prospect of a third blood draw wasn't appealing to anyone. But oh my gosh this numbing cream!! The nurse said I can ask my primary care guy to write us a prescription for it and then apply it myself at home. If only I had easy access to my brain. Anyway, the needle didn't hurt but Miss A got woozy afterward anyway for about an hour.

The nurse also said no news is good news, which was soothing indeed since I was supposed to get a call about some of the blood work today (and didn't) and other tests are supposed to take up to a week. Sigh. So, now we wait.

breaking news: at least one of my girls is not [necessarily] malnourished

The pediatrician called this evening with the results of Miss A's follow-up blood work. Important to note when reading this post is that Miss A first spiked a fever last Tuesday night, and she still has a high fever. Today was the 8th day of it and she fell asleep very early so I imagine tomorrow she'll be sick again too. We took her to the dr. Monday, they thought it might be the flu and did her follow-up blood draw to check B12 and folate levels. And now you're up to date.

Miss A's B12 levels are not low. In fact, they're twice the normal level. Her folate levels are also high. Her red blood cells are still enlarged. Her dr. doesn't know what to make of this combination of results, so he's referred us to a pediatric hematologist.

Naturally I consulted Google. I prefer to have more information than less, so the frightening aspects of Google don't bother me. What does bother me is when I find almost nothing, despite using all sorts of scientifical terms like "cobalamin" and "macrocytosis" and "haptocorrin" and "serum" and other words that contain multiple instances of every vowel, including Y. The other problem is that when people talk all scientifical that is almost as boring as when people use marketing lingo, so I find myself zoning out partway through the articles I actually paid to download because I was desperate for anything that didn't point me to a page all about leukemia.

Basically the blood work is telling me Miss A has the body chemistry of a lifelong alcoholic.

Those of you who work at hospitals or smarty-pants schools or departments of health, or those of you who just know anything about blood work or science or Google or pediatric alcoholism or excessive vowel use, feel free to weigh in on my blood work conundrum.

i fear the state may be underwhelmed by my parenting skills

Howdy, blogworld! I wanted to give you an extra day to let it sink in that I have possibly starved to death several hamsters and a school of fish, and I have a child with Failure to Thrive, and another child who is so severely malnourished that she is experiencing neurological symptoms along with stunted growth. HOLY CRAP! I seriously thought I was reasonably good at the very basics of parenting, like feeding and bathing and clothing and  whatnot. Apparently that was a delusion (vitamin B12 deficiency?) and I super-suck at all of this! And while the boys are reasonably good-sized, they probably have some food allergy that causes the dark circles under their eyes. And P has the most godawful gas if he has regular dairy products, so I buy him lactose-free milk but all our other dairy stuff is just regular.

Sigh.

So anyway, I withdrew Miss A from her regular school today. I wanted to write to you about my impressions of the charter school when I enrolled her there last week.

The school is in an old building. The kind of building I went to high school in before a school split and new building my senior year. It was built in the late 1940s, and has lots of cinder block. It feels homey and, to me, like a school ought to feel.

When they buzzed me in, a swarm of kids about Miss A's age were running down the stairs, arguing about something that had happened in gym class. There weren't any teachers. If you have spent much time in an elementary school lately you'll get how weird those two sentences are.

At our local elementary school, classes are escorted by a teacher at all times. There are multiple pep talks before, during, and after any trip through the halls, about being quiet and holding a bubble in one's mouth. As a person with a very small pack of kids, I really get why it has to be this way. But I liked that the charter school kids were trusted to move through the building without an escort, and I liked that they didn't have to be quiet.

Kids were in and out of their classrooms, too. As the admissions coordinator gave me a tour, kids would yell, "Hi Mrs. C!" and come out of their classes to hug her. No one yelled for them to come back, and all of them seemed to go right back. That was also a big difference from our local school.

I got to see the art room, which was being used for a violin lesson at the time. Four kids of different ages played a simple piece on the violin, very badly. I was relieved to see that Miss A will still be allowed to suck at things she's only beginning to learn. I guess I had a small worry these would all be super-geniuses who've been playing concert violin since age 2. I want her to be challenged, I guess, but I don't want her to be intimidated. Actually, I don't even care about her being challenged. I want her to be happy. If challenging work accomplishes that, fantastic. If sucking at the violin does that, super. If homeschooling does it, that's great. If being tranquilized so she can receive B12 injections does it, that's acceptable too. I worry that we're getting to a point where she needs to pull out of this, or it will become who she is.

I know none of us is locked into being a certain way, but I'd love to see her functional sooner rather than later.

In other news, Miss A auditioned for another musical and got a part -- a bit bigger than the role she got last time. Last time was good for her -- I forget if I ever managed to write about it but I could see her expand over the three months of practices. It was interesting to watch.

She was home sick today -- legitimately sick, with a high fever -- on her last day of classes at the local school. She wasn't bothered by having to miss her last day. She's, unfortunately, missing her transition day at the charter school tomorrow, but they said I can stay with her the first hour or so on Monday to ease her in. I'm excited to see where this and some B12 shots take us.

i am about to usher in world peace with my recent discovery

So blogworld, after a series of phone calls and approximately 40 minutes (total) spent on hold, I was able to get Miss A's blood test results (that I was supposed to get on Thursday).

The only thing that was abnormal in her results is that her red blood cells are enlarged. Her dr. wants her to come back for another blood test, to check B12 and folate levels.

Naturally I googled, and OH MY GOSH MY DAUGHTER MIGHT NOT BE CRAZY AFTER ALL!

Miss A's diet: crappy
Miss A's favorite vegetable: iceberg lettuce
Miss A's typical daily caloric intake: negligible
Miss A's preferred foods: unknown

Symptoms of B12 deficiency:

• delusions
• paranoia
• headaches
• problems with impulse control
• depression
• mental confusion
• nausea
• loss of appetite
• weight loss
• diarrhea
• constipation
• fatigue
• very pale skin

DING DING DING! She is delusional at times (and not in the way all kids are delusional and believe they are princesses or superheroes), and extremely paranoid. She's been complaining of headaches and stomach aches for a couple years. She has a lot of GI issues and is pale like Snow White (Maybe the Evil Queen wasn't trying to kill her after all! Maybe she was B12 deficient and paranoid!) and complains of being tired and needing to rest during the school day. And her explosions are an impulse control thing, for sure.

Symptoms of folate deficiency:

• loss of appetite, weight loss
• mood disorders
• irritability
• GI problems
• behavioral disorders
• slowed or stunted growth
• fatigue
• headache
• difficulty concentrating

Again, ding ding ding. 

One of the sites I read noted that folate deficiency is commonly found in manic-depressive patients. Jason and I talked this weekend about whether Miss A might have bipolar disorder, because she definitely has manic or hypomanic episodes in between her rages or meltdowns.

Another note: B12 deficiency is common in people who've taken heartburn medications long-term, because they cause problems with B12 absorption. I don't know what "long-term" is, but Miss A took medication for acid reflux daily for the first year and change of her life. 

I cannot wait to get Miss A back in for this blood test. She is less enthusiastic, and might in fact need to be tranquilized. She is becoming more like a young preschooler or a toddler during her meltdowns; we sometimes have to pick her up and move her to where we tell her to go, like a toddler who goes limp when he doesn't get his way. She doesn't say words, just, "Nnnuh! Nnnuh!" and weird grunts... She wigged out today when she asked to get on the computer, we said we'd set her up as soon as we finished lunch, and she got extremely agitated and said, "But I want to do it NOW!!!!" Um, hello toddler stage! 

Oh also I can't shower anymore when Jason is not here because I'm back to worrying someone will kill or maim someone else during that 10 minutes. I'm back to where I was when she was 4 and 5.

So my big dream is that we can fix her with vitamin supplements (that are hopefully not injections because of the aforementioned anxiety-induced Hulk strength) and long battles over eating at mealtimes, and I will have my daughter back! Or even a glimmer of her. And maybe she'll start to grow again and avoid "severe deformity," one of the less-awesome side effects of folate deficiency.

IN MY DEFENSE:

• we only eat wheat bread
• I bake with whole wheat flour, to the detriment of my baked goods
• we have a lot of vegetables around
• we don't do iceberg lettuce 
• I make her eat a piece of whatever vegetable is for dinner
• ketchup counts as a vegetable
• so does pizza

I'll let you know how it all shakes out!

preliminary data on blood-letting looked promising enough

On Tuesday morning Miss A had blood drawn so her pediatrician can test to see wtf. Miss A did NOT like that. She hasn't had shots in several years, and her last blood draw was before she can remember. A nurse and I had to restrain her.

Tuesday evening she said, "Mom, do you know why I've been nicer since my dr appointment?"

I thought to myself, "Because it was only 10 hours ago and most of that time you were at school?" But I said, "No, why?"

And she said it was because she didn't want to have to get blood drawn again.

Hmm! The doctor/barbers of old might have been onto something! Perhaps the blood draw had leeched out her bad humours!

Miss A continued to keep it together last night, and then completely lost her shit tonight. First I asked everyone to get their jammies on right after dinner, but instead everyone chose to take everything in the boys' room and pile it in front of their door as part of some complicated game. Then I told her she had to help them clean their room if she wanted to watch "House of Anubis" at 7. That upset her, because she didn't feel she deserved to have to help with the clean up. She began to throw a screaming/kicking/stomping/throwing/slamming fit in the hall.

I forget what happened next -- I think I told her she could clean up her room instead, and that made her even angrier. So then I said she was out of luck and should just get her pajamas on and climb into bed.

Enraged, Miss A intensified her screaming/throwing/stomping/kicking. All the while, the boys and Haney are cheerfully cleaning up the mess all four of them made. Because Miss A can't calm down on her own, I suggested she take a bath, and after that she was calmer.

Until Jason got home. And I don't know what all happened then, except she didn't want to go to bed, and then Haney was talking or singing to herself which interfered with Miss A singing to herself, so Miss A came down from her bunkbed to thrash her. Jason stopped her three times, and finally she was set off into another sobbing and screaming fit that lasted until about 9:45, when Jason went upstairs and got her calmed down while I worked.

So she spent most of three hours having a fit. It exhausts me just dealing with her, so I can't imagine how exhausted she must be. And Miss A's new school will have her out the door an hour or more earlier than she leaves now, so we have to figure out a new afternoon and evening schedule. Forbidding her to play with neighborhood friends would allow us to get things done at a comfortable pace, but I feel like she needs that free play time. Then when she and any of her siblings place nicely together, I don't want to disturb that -- that's pretty much what I live for. Aside from those things we need to fit in homework (emotionally charged and requiring my undivided attention), dinner prep, eating, kitchen clean-up and baths, and somehow a two-hour period of time for Miss A to unwind before going to sleep. There aren't enough hours in the day!

Tomorrow I go to officially enroll Miss A at her new school -- I'm very excited. And very hopeful this will bring some sort of positive change.