Friday, July 31, 2009

To medicate, or not to medicate

Today was the last day of camp for C. It was his first time going to day camp. For that matter, it was his first time attending anything other than school. We've never been comfortable leaving him alone with anyone who might not be capable of supervising him properly. He really can be that challenging. Also, he's such a homebody that he really isn't interested in going out and interacting with other humans some days.

Camp Shalom changed all that for us. He loved it. His only complaint is that it doesn't last the rest of the summer. We enrolled him in the two-week camp on the advice of our educational consultant, the wonderful Jill. She was, as always, right - it was exactly what he needed. Camp Shalom focuses on social skill education for kids with ADHD, Aspergers, and/or High Functioning Autism. Social skills training is so important for kids on the spectrum, because social skills are what they lack. By teaching him these skills, we can help C interact with other people more effectively.

The other thing we do to help him interact with others is medicate him. C is on two different ADHD medications - Concerta (stimulant) and Strattera (non-stimulant). This is the combination we've come up with after working with his pediatrician for several years. His pediatrician has worked with thousands of kids over the years. Out of these, he's only put eight on medication before they turned five years old. C is one of those eight.

When we tell people how old he was when we started him on medication, they're usually shocked. Most of the rest knew him before he was on the meds. Anyone who's seen him off the meds (in the morning or evening) know why he's medicated. It makes sense to them. He needs the extra help the meds give him. His impulses are controlled to the point that he can concentrate. At least, that's what I thought. When I talked to the counselors today, they were surprised to learn that he's on medication. They thought for sure that he was on a medication break. These are trained counselors with experience working with kids like him. I don't know whether to be amused or concerned. I guess concerned - if he can't concentrate with the help of medication, then what the heck do we do?

I read a great article on medication options the other day. It's a rarity to find an article discussing medications in a fair and balanced way. I'll be referring to it again in the coming weeks before school starts as we work (again? still?) to make sure C has optimal assistance in focusing on his schoolwork. I would love to be able to ditch the medication (the co-pays alone are a good reason to want off it), but I don't think it's a viable option for him. Anyone have a magic wand handy?

Monday, July 20, 2009

Music Monday

This is the first song we played today and, really, it is this sort of expectation I would like to set for every day. You should always know that you are blessed and lucky.

Another day, another diagnosis

If you know our family, or have read this blog often, the first thing that probably came to mind upon reading the title of this entry was "ok, what does A have now?"

If so, you're right. It's not that she's a sickly child, exactly, it's just that she seems to accumulate rare conditions at a faster rate than the rest of us. Certainly, she's had more diagnostic tests than the rest of us combined. We've started to look at it as her way of ensuring we have enough material for the annual holiday letter. What else could it be?

A had her first formal diagnosis soon after she joined us. As is often the case with her, first she had to go through a lot of testing and multiple-doctor consulting before they finally put a name on what she has. A name isn't exactly necessary, except that it gives us a way to identify the set of symptoms that she has so that we can get help treating them. The name most certainly does not define her. In fact, the only name that comes close to defining her is the nickname that her father gave her: The Reigning Queen of Pink, Grand Duchess of Fluff, and High Protector of Barbies. I suppose that calling her a "hausfrau" also works (her favorite gift ever was the vacuum cleaner her aunt gave her), but it lacks that je ne sais quoi that the other nickname has. Besides, it's spawned another nickname - her great-grandmother, also a fan of pink, is now known as the Queen Mother of Pink.

That first diagnosis was Incontinentia Pigmenti. Try saying it three times fast, or even spelling it without looking at the word. Never heard of it? You're not alone. Most doctors we see last heard of it in medical school. Whenever I encounter someone who has heard of it, I practically weep with joy because I don't have to explain it. Someday I'll write a post all about it - I've always found it comforting and fascinating to read about others' experiences with the condition. I should give back. For now, I will tell you that it means that she had a weird rash as a baby. Since then, the main effects have been cosmetic. She has alopecia (bald spots) on her crown. Most of her teeth are missing and some of those that exist are peg shaped. According to the dentist, she had 14 baby teeth and will eventually have 12 adult teeth. According to my calculations, we will need to win the lottery so that we can afford to buy her some teeth some day. To her credit, when people ask her what happened to her teeth she just tells them that mommy and daddy are going to buy her some teeth when she's older. At six, this isn't such an issue. As she gets older, she may feel self conscious. I hope not. She's fierce and we've taught her to revel in her individuality.

The next big way she made her mark was to lose a kidney. The OB swears that the ultrasound taken when I was eight months pregnant shows two kidneys. The ultrasound taken last fall only shows one. We've had her check under her bed, in the closet, etc., to no avail. Who knows. She also now has a kidney stone in that solitary kidney. We found that after she peed pink on Mother's Day of this year. After a visit to the ER, we followed up with her nephrologist. I explained that A was clearly suffering from pinkatitis. A was thrilled - even her pee is pink! I love that she finds joy in what other kids would be freaked out by. We're still monitoring/treating/pondering the kidney stuff.

While the kidney issues were ongoing, A was also complaining about stomach pain. Some were tempted to write it off as kidney stone pain. I didn't think so and luckily we have a good working relationship with her pediatricians. They ran some more tests and eventually referred her to a gastroenterologist, who ran even more. Another wonderful thing about A is that even the tests no longer freak her out. Blood tests are a piece of cake and peeing in the cup is de rigueur for a doctor's office visit.

We talked to the gastroenterologist about reflux, which didn't seem to fit. Allergies seemed more likely, except that she'd been re-tested last year and had negative skin prick tests to the foods she'd tested positive to a few years back. In the last few months, she'd been back to the allergist for a cough that disappeared once we removed soy from her diet. Before that, the allergist had her do a trial run of Zantac and took a chest x-ray as a precaution. The x-ray was clear, but showed an enchondroma (benign tumor) on her rib. We're following that with an orthopedist and wondering how she managed to develop yet another condition.

The stomach pain had kicked into high gear shortly after we removed soy and substituted lactose-free milk. We took that out and the pains subsided, but didn't go away. The gastroenterologist took all of these events into consideration, along with the negative results to the testing he'd ordered, and concluded that it would be best if we bit the bullet and had him perform an endoscopy to check out her insides.

The endoscopy was scheduled and we prepped A by telling her that the doctor would put her to sleep before he took pictures of her insides. She told me that she'd need to bring some books with her because she always reads before she goes to sleep. Seriously, I adore this kid.

The endoscopy was relatively easy. The most painful part was the $250 co-pay. The best part is that A got to see pictures of her insides, which were pink! Life can't get much better than that.

Now, I'm a research fiend. I must know everything about the topic I am obsessed with at the moment. This serves me well with her IP, since I often have to educate doctors about it. I've been asked by more than one if I'm in the field. LOL So, it shouldn't be particularly surprising that I had researched her symptoms and come to my own conclusions about what she had. The doctor seemed a little surprised when he called on Thursday and told me that A has Eosinophilic Esophagitis, and all he got in response was "ok". I eventually had to tell him that I'd done my own research, which made the rest of the conversation fairly simple.

Less simple is what follows. She has an appointment with their EE clinic to have further testing by the allergist they work with. She'll probably have to go on an elimination diet. We will certainly have to remove the problem foods completely from her diet.

Upon sharing news of her latest diagnosis with others, one response I got was 'Oh, how awful, she won't be able to eat anything' - basically, her life will suck. Sure she'll be able to eat. We'll just have to adjust the types of foods we make for her. Our food bill may suck, but her life won't. If we have anything to say about it - and we have plenty - she'll just look at this as another fun adventure. She's brought us on so many already. What's one more?

Saturday, July 18, 2009

The gall, I tell you

Summertime - it's our vacation, right? Not so fast. It's hard to have a fun vacation when you don't feel well. It's also hard for the kids when their parent doesn't feel well. None of this makes for a fun or even active summer break.

The day before school let out, I ended up in the ER with severe stomach pains. I thought it might be my gallbladder, but the doctor said it was kidney stones. Fine, then - off to the urologist. He said that kidney stones were an issue, but he thought that, given where the pain was, my gallbladder might be the problem. Back to square one. An ultrasound showed sludge and the urologist sent me off to the surgeon. The surgeon helpfully described it as a "sludgeball" (BUMD said that it sounded like something the kids would call each other) and said he'd remove the gallbladder. The first available surgery date was two weeks later. In the meantime, I was told to just eat a bland diet. Easy - for those not doing it.

One definition of gall is "something bitter to endure." That pretty much accurately describes living with a malfunctioning gallbladder. Eating hurts. Not eating makes me feel unwell too (although it's great for weight loss). We were supposed to meet friends for a BBQ in Canada. We'd made fun plans to tour parts of Montreal, Quebec, Massachusetts, and Vermont. All of those plans were cancelled.

Needless to say, it hasn't been a fun summer so far. However, surgery was Tuesday and I've been feeling better since. The kidney stones still need to be dealt with, but that will wait for now while I recover from round one.

Things are looking up in the kids' lives as well. C starts two weeks of summer camp next week. He should have a blast. During the second week, K is going with her grandfather to visit family friends in Colorado. She'll get to be an only child and do some hiking. She's very excited. A is excited too - during the days on the second week, she'll be an only child too. She's having fun dreaming up all of the activities she and I will get to do alone, together.

Maybe, just maybe, our real summer has just begun.

Saturday, July 4, 2009

Saturday in the Park

It's the Fourth of July - how can I pass up the opportunity to play this song?