What did you think of Miracle Workers

[Giselle]

Hi there, did anyone see the Miracle Workers episode last night about Emily Bressler and her TS? Just wanted to know what everyone thought. Her Mom mentioned that they "tried everything anyone suggested to them" but in her list of what they tried didn't say anything about diet/supplements/deficiencies etc. so I wonder. I was a little sad to see that they said her TS was the "most extreme case"- because then so is Hoyt's (when he's not on our regimen - very mild when he is). I'm happy it helped her but I wonder if 19 is too young still to know if you're going to out grow it? I was quite a late bloomer and don't think everything settled down until I was at least 23-24 - goodness I didn't even get boobs until I had a baby! Again, I'm not trying to be a party pooper it's just I feel all mixed up about it. Anyone else?

Giselle

[Guest]

I didn't think her TS was the most extreme case either. My TS when I was younger was more severe than that and I currently know several whom I met at the conference 2 years ago which are a lot more severe than Emily's. I'm glad it worked for her though. The other thing was at the end they handed her a card for a pharmacy saying that she's going to be on a lot of medications. To me that doesn't make sense. They do the surgery, but she still has to take ts meds?

 

Carolyn

[kim]

These were very interesting remarks.

 

As I was watching the show, I was trying to figure out if I would ever have the strength to try the "more natural" approach if one of my guys were dealing with that bad of symptoms. I probably would have grabbed the meds and done exactly what the Neurologists said to do or try.

 

From your posts Carolyn, I'm not quite as surprised as I am to hear Giselle say that Hoyt has been that bad at times. Just deepens my admiration for all of you who have been there, and had the courage to take a different path.

 

I had posted that I was sure I would have mixed emotions watching the show. When I saw the level of her tics, I didn't. I was greatful that there was ANYTHING that could provided relief for her. Now after reading what you two have to say, I'm feeling sick that this girl underwent such a radical procedure without ever knowing if alternative treatments would have been the answer for her too.

 

My husband and I were wondering about the medications too Carolyn. Maybe they are more along the lines of anti inflammatory, anti rejection?

 

Kim

[Sydsmom]

I found myself sobbing at first. Mostly because my daughter often says she wishes and prays all the time that she didn't have TS just like Emily did. We also saw some of Syd's tics in Emily and it was weird seeing someone else do the same thing. I was overwhelmed with gratitude that Sydnie's tics aren't as bad as Emily's were and hoping they don't ever get that bad. I'm glad she found relief but also cringed at the end when I heard about all the medications. My brother and his wife were here visiting and watched it with us and it did open their eyes to a little of what goes on with Sydnie. They've always been supportive but didn't really understand so that helped a little.

[Francois]

A little late but I'd like to add my 2 cents. I also noticed there was no mention of natural remedies or attempts to try anything natural. And as far as medicines, it would be interesting to know if she takes and what she must take--probably for the balance of her life.

 

Any surgery that is done on the human body can cause problems. There are many risks and this surgery is too new. I have heard that less than a dozen have been performed worldwide--I also wonder what exercise may do to the implant? a car accident or any violent movement---can the implant be moved? And if moved or jarred what are the consequences?

 

I am also wondering about the "computer" that she wears. How is that powered? If battery and the computer is inside the body, how is it changed? Again, another surgery.

 

I think everyone would agree that it was a success for her and hope her new life continues--but I think there are still too many unanswered questions.

[Giselle]

Kim, yes Hoyt is quite bad (when not on our regimen) - as bad as Emily when he's really going - and as far as courageous I don't know, I just thank God for red dye. That was what made me realize that if something could make him that bad then something could make him that good. I'll never forget when all this started it was the rolling eyes blinking business (boy am I ever homesick for when it was JUST that) and then we took him to Universal Studios to relax him (we originally thought this was nerves) and take his mind off his ever so stressful kindergarten. It worked until he ordered a strawberry soft serve ice cream cone. This is before I knew ANYTHING about nutrition and I remember thinking "wow, that's not the color of any earthly strawberry" It was neon RED!!!! Tasted wonderful and was eaten down to the last drip. Within fifteen minutes my son was reduced to what I would have thought was a seizure had I not already seen the eyes rolling and blinking - we actually have it on video tape as we wanted to be able to show it to the doctor we knew we had to bring him to. That very evening, through tears, I combed the web and found our wonderful Latitudes. One of the first threads I read was about how red dye made tics so much worse and the rest is history. I thank all of you wonderful people for helping Hoyt. He's ticcing a bit right now because he's had a horrible horrible (off for 10 days!) cold but is already almost back to "normal" - no vocal tics, no noticeable physical tics (except when super sleepy or sick) YEAH LATITUDES!!!!!

Giselle