Time for our 6M appointment w/Dr. Towbin...

[Mommyto3Boys]

Man, is it really time again for our six month appointment?? Apparently so - tomorrow we go in at 9:30 and we'll probably be there all day, what with three echos to do and three appointments back to back...

Please say a little prayer that Sutton, our youngest, turns up clear again, and that everything is as okay as it can be with our other two boys... I'll take no change over thickening in any of them.

Jeez I'm nervous... I'll update when it's all over.

[Shelly]

As a mother of 3 with HCM (all kids clear so far) I will keep you all in my prayers. I'm sure it will be a long day, but from your pics, I think you will have plenty of entertainment.

Good Luck!

[Reenie]

How did the appointments go?

[Mommyto3Boys]

Hi!

Okay, well first off.. Dr. Towbin is no longer with Texas Children's Hospital. We didn't find out until they were into the third echo - we had no idea he had left. I panicked for a little while, but we're now with Dr. Jeffries who is a very nice man, so I feel much better about everything now. It seems Dr. Towbin is now with Cincinnati Children's Hospital - he left back in December of 2008.

Sutton is still 100% clear, so that's great news. We're going to have genetic testing done in 6 months to see if we can identify the mutation and we can either clear him for good or keep a close eye on him.

Zak is absolutely the same. His septum is still 2.83 (or 2.61 if you measure it juuuuust this way - lol), his ejection fraction is still in the 70's and his heart rate is perfect. He's wearing a monitor right now to check for anything unusual and that'll come off tomorrow. So far, when it comes to an ICD, there are no indications he'd need one anytime soon. I asked the doctor when his septum would become a risk factor, or what needs to change in order for him to be a candidate and he indicated: Family history of 1st degree relatives, any symptoms (none as of now) and/or identification of a malignant gene. The malignant gene, however, is not indication alone for one, according to this doctor. So.. he said everything (aside from the HCM stuff) is fantastic and he goes back in 6 months. Also, no treadmill for him until he's 7.

Quest is absolutely the same. His septum is measuring 1.6, his blood pressure and everything else is just fine. They think they'll need to up his dose at about 14-15 years old but until then, he stays at 25mg of his beta blocker. He goes back in 6 months, is also wearing a 24-hour monitor and will have a treadmill repeated at his next appointment.

So.. nothing has gotten worse, that's a good thing. Sutton is still clear, a very good thing. Everything is still as okay as it can be, and for that I am grateful. :) Thanks to all for keeping us in your thoughts and prayers!

[mbcube]

Glad to hear that your boys are doing well!
Thanks for the update on Towbin!

[bulybuly]

Hi Marki

Great news on the boys! No changes are exactly what we with kids need to hear! Amazing that Dr. Towbin left and you didn't know, glad you like the new person.

Thinking of all of you!

Marsha

[THW]

Marki,
Thanks for the update. I'm glad to hear things went ok. I hadn't known Dr. Towbin moved, either.

Hope all keep doing well.
Theresa

[EmilysMom]

Marki-
Glad to hear it went as well as it did.
I actually did hear that Dr. Towbin moved because our doctors do research with him, and someone mentioned it. It seems like his practice should have told you!

[Mommyto3Boys]

Yeah, I'm a little disappointed that we weren't informed - I don't think he'd up and leave us with doctors who didn't know what they were doing, but it would have been nice to send out a letter to let us know... Thanks for all your kind words, we appreciate them! :)