Sunday, February 14, 2010

The Good, the Bad, and the Scary.

Well, life has been busy and chaotic the last 6 weeks or so, and that's my excuse for not updating my blog... and I'm sticking to that excuse.

Where to begin? Dallas started karate class about 4 weeks ago, and it so happens that the twice-weekly classes are back-to-back with his therapy appointments right after school, so he's been a busy, busy kid. And not one complaint. He's even taken to doing as much of his weekly homework packet that he can in one day, so that he's freed himself up for his activities.

He already earned his first orange stripe and is well on his way to his second, and only 4 weeks in. I am really, really proud of him. And he's pretty pleased with himself too.

He also received his 2nd quarter report card and came home with STRAIGHT As again! Even in citizenship. We are over the moon! He's doing very well in school, and everything is finally coming together for him. He's still struggling with reading - and may always - but he's hanging in there and doing his very best and it shows. He actually loves school now. What a change from this time last year!!

He's had a few setbacks behaviorally (coincided with the full moon too ... no surprise there!!) but the cycle ended really quickly and did not escalate to the levels we have previously seen. Two days of rapid-cycling behavior, 2 rages, and one day afterwards of depression and lethargy. Not too bad looking back, but still hard at the time on all of us...especially HIM. He hates being this way. The meds continue to work for him. It's not perfect, but it's more than we had ever hoped for, and miles from the dark place where we thought he'd need to be hospitalized. So far from that. He's more an more like a "typical" little boy with some attitude at times.

As of today he's doing fantastic. He even overloaded on Valentine's candy and sweets today and still... great. He's been extra cuddly and loving lately as well. I soak all that love right up whenever I can get it. It was a good Valentine's day. :-)

Now for the worrisome end of things: Dallas saw a pediatric endocrinologist on the 5th of February for a sizable swelling in his neck and for concerning thyroid blood levels. More extensive thyroid blood panel was done that day, and a thorough exam and consultation. We waited 9 months for this appointment, so we were grateful to finally get in, and the doctor was wonderful. The wait to be seen was 9 months after referral. His pedi had said to expect a year's wait, as there are only two pediatric endocrinologists in this entire region. The best of the best doctors too, I'm sure, but still crazy. It turns out the endocrinologist is being very aggressive and ordered a thyroid ultrasound. We were told following that may likely be a radioactive iodine scan and/or needle biopsy. The dx was goiter- unspecified, and the endo took one look at his neck and said that was all enlarged thyroid. I know that thyroid cancer in young children is rare, but I am scared. We have no biological history to go on, and he has all the red flags. Yep... I Googled like an idiot.

His numbers on previous thyroid lab tests his pedi and pdoc ordered were elevated, but not alarmingly, so he was probably pushed to the back of the list as not urgent. Now that he's been physically seen and examined by a specialist (and not just lab tests results on paper), they're stepping testing up more quickly. That makes me happy and scared at the same time. If we have to do the needle biopsy, which is likely, I have no IDEA how to explain this to my extremely needle phobic son...

The endo also asked if he was being seen by a neurologist as well as his pedi and pdoc. He seemed to think that with all of Dallas' issues and unknown history, it would be beneficial. We've had both his pedi and pdoc (and therapist) say that they didn't think it was necessary, but now I question whether we should have pursued that anyway. Or if we still should.

One thing at a time I guess.

Interestingly, the endo did not seem to feel that any thyroid dysfunction he may have is likely causing his behavioral issues or presenting as bipolar or anxiety. He says it may be making some of those symptoms more acute, but not causing them. He did say that some meds can cause thyroid regulation issues however. I was kind of hoping we could throw out the whole nasty bipolar I dx and all the meds and hell that comes with it, and instead give him some thyroid pills.

One of my friends whose husband is hypothyroid and who has done a ton of research, today mentioned how I've told her how much Dallas craves salt. I mean REALLY craves salt and salty foods (addicted to Ramen and Beef Jerky, licks salt shakers, tries to salt already salted foods, etc...) and mentioned that maybe he has some genetically-caused iodine deficiency. That question was never asked in consultation, so I hope maybe she's onto something and lab tests will show this is an easy fix w/ iodine supplements maybe...?

We had the ultrasound done on Friday the 11th of February.

There is "something" there, even to my uneducated eye. The sonographer consulted with the radiologist after the scan, asked us to stay in the waiting room, and called us back in for a re-scan with the pediatric radiologist present. He told her where to scan and take images, and kept saying "right there", "that one", etc... as the lumps and darker spots were showing up on both sides. No one could tell me anything positive or negative. We will have to wait for the endocrinologist to give us the results, and tell us if we have to do a biopsy. I'm more than a bit freaked out.

Hoping for answers soon...


Erin said...

I am so curious and what the findings of the testing is going to be. I struggle with thyroid issues myself and have family history of bipolar. I really wonder how the 2 are connected.

I wills say that I am a lot more stable since going on synthroid.

Anonymous said...

The large red spot on the left slide resembless crosssection of blood vessel; the halfmoon red and blue lines may suggest the outline of the 1.2 cm nodule without internal blood flow.