Sunday, February 28, 2010

Getting To The Bottom Of It

I have been convinced for some time that something else is going on with M. When I describe the regression over the past two years to doctors and professionals, they all agree that it does not make sense to have regressed so greatly after the age of four, and that the transition-though certainly hard on him-cannot be the only reason for all of this.

I was convinced last Spring that we'd find something in the panel of tests we did with the genetics team. He has so many features of fragile x, but alas, no answers there.

I switched to a new biomedical team last October and the developmental pediatrician I work with is a very thoughtful man who really listens to my concerns. Though he is a bit baffled by it all as well, he is totally open to and in agreement with pursuing all options to get to the bottom of this.

You may recall us venturing down the road of PANDAS. M had several bouts of strep throat this past year and always showed great improvement of skills and behaviors while on antibiotics. We drew ASO titers (blood testing for strep levels) and they were <6; thus in the normal range. My next question for the doctor was whether or not M could be having seizures without us realizing it. The answer was that this is absolutely possible. Yikes. We had a neurologist back on the mother ship that we were very displeased with. He spent very little time with us over a three year period, and basically dissuaded us from doing some of the bigger neurological tests because 'we probably wouldn't find anything.' A few days ago I met with a very different pediatric neurologist who within five minutes told me that we absolutely need to do an MRI and an EEG to rule out Landau Kleffner syndrome, which I had ironically discovered just the day before our appointment. This is a very rare syndrome, but at least we could treat him with anti-convulsants and possibly get back a little of the boy we seem to have lost.
We will also do another big blood draw to retest for some metabolic disorders as well as test M's thyroid levels. It is a strange thing to hope that they find something in at least one of these tests, but that is where I am these days...hoping to find an answer to SOMETHING.

And if they all come back negative, our next discussion will be along the lines of prescribing resperdal or abilify to M. I did not want to go down that path, but I feel like we have exhausted our options at this point. Even our developmental pediatrician--a man who fully believes in treating with vitamin supplements and diet, and who wrote a book about treating ADHD without drugs--suggested that this might be something M needs in order to lead a more fulfilling life. Sigh.

So hopefully we will be able to schedule these tests fairly quickly and with little to no gruff from the insurance company. I am not looking forward to the fact that we will have to use two different sedatives for the MRI and the EEG, so please keep M in your thoughts that he has no adverse reactions to either.

I will keep you posted.

Friday, February 26, 2010

A Lot On My Mind

I think about blogging every single day, and yet it is hard to take even a few quiet moments to gather my thoughts here. 
I am really trying to use the word 'balance' as my mantra for this new year.  My stress levels are at times feeling quite unmanageable, which I know is not healthy.  It's all about control, and feeling like I have so little of it is not something I am suited to accept.

As many of you know, I have rescued quite a few pets through the years and spent my six years in Austin fostering dogs through the amazing Blue Dog Rescue, and working with local shelters. 'Animal rescuer' became a part of my personal title that I was proud of; a title that made me feel like I was doing something good and important in this world. It was beyond a was a commitment to making the world a better place.

During college and in the years shortly thereafter, I adopted a total of five pets: three dogs and two cats. You may recall this past summer when I lost my sweet, sweet Daisy dog to an aggressive form of cancer, and the number of pets became four. Four pets in a house ill-equipped for any pets at all combined with the stress of raising a child with special needs equals even more stress. I wasn't the type of pet owner I wanted to be and have felt incredible guilt at my frustration with the animals. But we chugged along as we always have, because it is my firm belief that you adopt an animal for life.

That is, until one of my cats began peeing all over my house last summer.

I adopted Jade as a naive college student. I would go to the local animal shelter constantly to the point where they no longer required me to have an employee escort me to the kennels. One day, I came across a bright orange tabby cat with six, tiny orange kitties and two, totally-out-of-place, gray and white siamese mix kittens. It turned out that the Mama had her kittens in the same dumpster as a Siamese and for whatever reason, these two misfits were left to fend for themselves. And, so, as is often the way in the amazing world of animals, the orange tabby selflessly gave her milk to the two Siamese mixes who needed that in order to survive.

I learned that the kittens would be available for adoption in two days, and I returned fairly soon after the shelter opened to see that all of them had been adopted except for one of the Siamese mixes. She was tiny and sniffly and anyone in their right mind knew she probably wasn't going to make it. But since the staff knew me to be a giant sucker, they told me that they'd just give her a shot of antibiotics and she'd be just fine. The part they neglected to tell me was that she was only two weeks old and would have to not only be hand-fed, but would also have to be assisted in all things, including simulating a mother cat licking her to make her go to the bathroom! A few days into her new life with me, I noticed her tummy swelling to obscene proportions. Fortunately I had enough wits about me to call a vet who explained she could have basically imploded from the pressure if I hadn't called them sooner. Great! Fortunately it required nothing more than remembering to occasionally, ahem, 'massage' her with a warm washcloth.

Jade was always very elusive. She was social only with me, and even then, only at certain times of the day. She adored the dogs, though, and was the pet project of her bossier older feline sister, Kahlua. It was clear, however, that even when you adopt an animal as young as she was, you can't quite take the feral out of a feral-born cat.

I'll spare you any more of my ramblings and bring you to the present. I made the decision to euthanize Jade yesterday. It was absolutely one of the hardest things I have ever had to do. I don't 'kill' animals...I rescue them! But the strain of cleaning endlessly peed upon carpet has taken its toll on the entire family. One of the boys' bedrooms has not even been in use for months because I got so fed up that I actually tore a large chunk of carpet out of it and threw it away. Who lives like this? When we got home from a six-day vacation Wednesday, the wetness in our master bedroom was so unbelievable that I knew we couldn't do this any longer.

I had taken Jade in three months ago to rule out any medical conditions that could make an almost 15-year-old cat who'd never soiled outside of her litter box start this sort of behavior. I was so hopeful they'd find a urinary tract infection or something else that was either treatable, or would give me a clearer conscience about euthanizing her. But neither occurred. For some reason, Jade wasn't happy anymore. She spent nearly the entire day curled up underneath a fleece mat inside her crate in the laundry room and came out only at night to wreak havoc on our bedrooms.

And so, because I could not see any other areas of stress in my life that could be eliminated, and because SOMETHING had to give around here before I have a full-on breakdown, I chose to end my cat's life.

I can only hope I can be forgiven for such a thing.

I know those of you who aren't animal lovers will think that is insane to worry about...and those of you who are will hopefully say a little prayer that her passing was quick and painless, and that she forgives me.

And then...there were three.

Thursday, February 11, 2010

The Sun Is Shining

I thought this fact was worth noticing every once in awhile!

Which reminds me...I need to occasionally remind myself of the sunny things in my life; especially those things that on first glance may not seem so sunny, but really are.

-M can feed himself.  It makes me a tiny bit crazy that he still mostly opts for using his fingers. And even though a ton of his food ends up on his lap, the floor, or smeared on the lenses of his glasses, he is feeding himself.

-M can walk.  I feel like I spend much of my time holding onto a limp-gripped hand that relies way more on my back muscles than his own to pull him along, but he is walking.  Before he began to do so at nearly two years of age, I yearned for any sort of independent walking.  I need to remember that.

-M loves watching movies and television.  It's that thing a modern Mom hates to admit given the general population's theories and opinions on tv and our children, but this is one of a very, very short list of things that my boy finds pleasure in.  But you know what...he is happy when he's doing it.

-M knows how to use the potty.  Even though he has taken a step back over the past six or so months and wets himself a few times each week; and even though he still has to wear a diaper at night; he never has a bowel movement in his pants and has worn big-boy underpants during the day for nearly two and a half years.  Trust me...this is huge.

-M loves to eat.  I worry that his low muscle tone and lack of desire to exercise will contribute to him becoming more overweight.  I also worry that he has developed a wee bit of a food obsession through some of the behavioral training they are doing in school.  BUT...M enjoys many types of food.  The same cannot be said for many children with autism who may only have a handful of different foods they'll tolerate.  He is a good eater and eats a huge variety of foods.

So like my 'Thankful Sundays' which seem to have gone by the wayside, I need to throw in the occasional
post where I look at things on the bright side.

It could always be worse, right?!

Monday, February 8, 2010

Damn You...

...beautiful town with your beaches and trails; your people I adore; your weather and festivals; your pumpkins and sea glass; your harbor and your farms; your ideals and openness.

Damn you for giving me those weekends where I think, 'but what if...'

Damn you for having such awful schools.


Saturday, February 6, 2010