MAGIC Convention 2011 Part 1 (LONG!)

Since I have no car at the current moment (in the shop...again) and no stroller (in said car trunk...in the shop) and its rainy outside I thought I would be ambitious and post 2 days in a row! So much was learned and happened at the MAGIC Convention that I thought it deserved its own post. The convention was in Lombard, IL which is just outside Chicago and it was really nice (aside from some billing issues we have had after the fact the hotel was really nice).

This was our first year attending the convention and I had somewhat mixed feelings about it. When we originally decided to go (back in like January) I was really excited to learn more and get to know other RSS families and meet some of the women I've been "talking" with online in real life. There is a private facebook RSS support page that I go to sometimes and there are some familiar faces who have given me advice and encouragement since Nicholas recieved his diagnosis. But as time went on my excitement turned to feeling nervous/not wanting to go as much. I had heard from a few other families who had gone in the past that it was helpful but not as helpful as you would think, that it was clique-y with the other RSS families and that there was a lot of negativity. I am not in a place where I want negativity and I had no desire to spend a bunch of money to go listen to everyone complain and have "woe is me" attitudes.

The nervousness came from a pre-scheduled consultation that I signed Nicholas up for. There is a nation-wide known endocrinologist that works with RSS kids and has been a leader in research and treatment of RSS kids for the past 25 years. Basically she is the best of the best and is the dr. you want to see if your kid has RSS. She treats out of Mt.Sinai in New York and many, MANY families have her as their child's treating endocrinologist and fly from all over the country multiple times a year to have their child be seen by her. She was going to be presenting at the conference and giving free consultations. I signed up, which was a no brainer, but then got worried that after seeing Nicholas we would find out that we had dropped the ball on his treatment or find out that he needed a g-tube or something and it would leave me feeling terrible and sad for an entire weekend. Again, not something I wanted to do, plus this dr. (Dr.H) is not exactly known for her bedside manner but she is the best when it comes to RSS so we had our consultation on the books.

Thurs. night we checked into the hotel and had a free consultation with a pediatric dentist since a lot of kids have some mouth issues/palate issues and over crowding and jaw issues that require braces and all sorts of other things. I just wanted him to look at Nick's teeth and tell us if we should be doing anything other than brushing at this point. Nick's teeth are great and coming in nicely and we should start seeing a dentist at age 2 and we should make sure to pick a dentist who has a speciality in pediatrics. Easy enough-- during this time on Thurs. they had a big room filled with stuff for kids. It was a bunch of pharmacuetical companies and medical company reps with booths with free toys and stuff for kids. Nicholas got some free ice cream, ran around like a crazy person, got some free toys and pens and notebooks and bags, etc. It would have been really fun for a kid probably 4+ (there was a rock climbing wall and face painting and balloon animals and a funny picture booth kind of thing and WII games to play) but for a 16 month old there wasnt much that kept his attention for longer than a minute or two. It was fine though since we had driven for 5.5 hours and then checked in and went to this game room place and just had an early night.

Friday was the busiest day by far-- there were speakers for Donnie and I from 8:30am to like 5pm (with some breaks for lunch and stuff). We had paid for Nicholas to have childcare provided so he was dropped off at the daycare so Donnie and I could focus on the speakers. During each time slot there were 2 different options of presentations so Donnie and I split up so we could get the most info. Donnie went to a presentation about nutrition and how to get calories in your kids without needing medication. Donnie said it was great and really informational so I went ahead and bought the speakers book so I could read it (havent gotten to it yet). I went to a long presentation by Dr.H about the basics of RSS treatment and common problems and her treatment protocols. This was great information and made me more confident that we were already ahead of the game and on track with his treatment and dr's (main dr's at this point are his endocrinologist, gastroenterologist, nutritionist, ortho and pediatrician). We then broke for lunch and Donnie stayed with Nicholas so he could nap while I attended the 2nd half of the presentations.

The afternoon had GREAT presentations! The first was on Limb-Lengthening surgery-- which I know, I know, it sounds terrible and painful and just awful. I don't know about you but when I picture this surgery I think of breaking bones and months upon months in casts and bedridden and all horrible things I wouldn't want to put my child through. In actuality it is NOT that way at all! After talking with the ortho dr who did the presentation we found out that Nicholas has a predicted discrepancy of 3-4cm which is quite a bit and definitely would need something to be done for long term treatment.

We had already seen 2 different ortho dr's in Cincy, the first told us about a procedure called epiphysiodesis which essentially stops growth on the longer leg so the shorter leg can catch up. This freaked me out for a variety of reasons, 1. we are working REALLY hard to get Nicholas to grow and I am really against doing anything that will be STOPPING growth and messing with the growth plates, 2. Why would we do a procedure on the "normal" leg and leave the other leg untreated when in RSS kids the discrepancy is caused by an undergrowth in the shorter leg not an overgrowth in the longer leg. Basically it would be treating the leg with no problems and leaving the leg with the issue alone...seems kind of backward, 3. the possible risks are serious-- permanent damage to the growth plate which could stop growth all together. The ortho who suggested this also didn't do any official measurements of Nicholas and just "eye balled" the discrepancy. He also wanted to do this procedure at age 5 (again, really random...had no explanation as to why age 5 would be the age to do). Basically I ran the other way and got a second opinion. We were really lucky to get an appt down at Shriner's in Lexington where we got much better results. The dr's had official x-rays done of his bones to REALLY see the discrepancy. She agreed that the epiphysiodesis wasnt suggested but she thought his discrepancy would probably stay the same (its currently 1.5cm) and not get larger as he grew. Therefore she just wanted to wait and see and in a year reevaluate if we should get lifts or what we should do.

The speaker at the conference talked about how in his experience with RSS kids (which is alot since most RSS kids have a discrepancy and he is who Dr.H refers all her patients to) the discrepancy continues to grow and once the discrepancy is past 2cm, using lifts for long term treatment isnt the best route to go. He said with lifts its too easy to be non-compliant and not wear them and before you know it you end up with chronic back and knee pain. He suggests limb-lengthening surgery where they basically go in and cut the bone and put a frame around it. Every day you turn the frame so that it separates the bone a tiny tiny tiny bit and as the bone heals new bone regenerates to fill in the gap. He said that it is usually 10 days of being in the frame for each cm that you are lengthening. So for Nicholas who will end up with say a 4cm discrepancy he would be in the frame for 40 days. But during those 40 days he can still be mobile and active. After that there is about another 3 months of physical therapy to make sure the muscles stretch with the new length and to just work on strengthening. He said the kids never undergo general anesthesia and that an epidural is given and afterward usually tylenol is enough for pain management in kids. The pain is essentially equivalent to a child who gets growing pains during a growth spurt which is typical in all kids. His website explains it WAY better than I just did but it really put my mind at ease. This procedure wouldn't need to be done for a while (he recommends jr.high age as an ideal time to do it) but I feel confident and ready to discuss the decision with the dr. at Shriner's when we see her next year.

This post is getting long so I am going to write some more in a part 2 section....if you stuck with me this long then....you are probably family since this is probably boring to most people BUT stay tuned for info about the teen round table and our consultation with Dr.H!