Re: Feeling Overwhelmed!

Thanks for posting. Your post brought back vivid memories from when our daughter was first diagnosed about 5 years ago (she was 2 1/2 at the time). The first year was the most challenging as she was very chronic (inability to walk, could not swallow properly (g-tube), could not sit up very well unless propped up with pillows, etc..). It was devastating for us to watch her health fade so very quickly!

For us as parents of 2 small children -- one being a new born, it was a very challenging time. We were on a massive learning curve about the disease -- we wanted to learn as much as we could to be the best advocate for our child. We had to overcome our fear of medications (we learned that not doing something or not being aggressive enough could be much worse). We had to quickly just pull ourselves together and focus only on what was most important...our family. Hang in there...some it just takes time, research and patience.

You mention twice weekly solumedro for 2 months being aggressive. Like I often say...everything in life is relative! Certainly when comparing having 2 months of solumedrol pulses to not doing them at all previously...it's aggressive. When considering those IV solumedrol pulses to other JM kids, I would say it's not aggressive at all.

I will tell you my personal story only as a comparision. This may not necessarily a refletion a normal course of treatment of other kids -- we felt it was justified given how severe our daughter's complications were at the time. Remember, my daughter was chronic and really had significant muscle involvement and rash (actually several areas of open vacilitis). Initially, after we started with the traditional 3 day IV pulses and were not getting the results we were looking for. So, we once went 18 days in a row with IV solumedrol pulses. Then, we went to a traditional 3 day IV pulses weekly for over a very long time. The muscle strength returned fairly quickly (6 months) -- the rash was pesky and still is active today at times. We ended up on being on some form of IV solumedrol pulses and then eventually oral prednisone for over 4 years. It was a long and very slow journey. We had to be very patient...we've seen many kids get tappered off the meds too quickly only to seem them have a flare. We have not technically had a flare to the best of our knowledge.

How is our daughter today? She is doing very good (still some redness on the knuckles, so we are still trying to demystify that one...as it means the disease is still smoldering). Her physical growth took off after coming off the steriods -- just like the Dr's told us it would. She plays soccer and takes dance (even on the same day), she loves yoga & karate and just ran a mile at the Kids Fun Run in Washington DC. We are very pleased and proud of her.

She does have a small cataract from the steriod use. It is very small and the eye doctor believes it will entirely disappear on it's own.

During the high steriod usage, we took precautions. Lots of vitamin D and calcium religiously. Vitamin D helps the kids absorb the calcium. We also kept a very close eye on her bone density with dexa scans (Dr. P uses this approach).

As you are fairly new to this rare disease, continue to seek ideas and support from this discussion board. Also, if you do not have it already, the Myositis & You book is incredible. I wish that book was available when we were first diagnosed.

I hope this helps. Keep in mind, what worked for my daughter may not work for your child. You will need to keep a close eye on how your child responds to the various medications, track progress (or lack of progress) and any unsual things you see to have the most effective discussions with your doctor(s). You see your child many hours every day and the doctor may only see your child for only 20 minutes every month or so. You will have valuable insights to your daughter's progress that will be invaluable as you coordinate the care and treatment with your doctor.

Rhonda