I feel like I want to cry

DixieDarlin wrote: My heart is breaking for my oldest. He has had Tourette's Symdrome since kindergarten, or at least that's when we noticed it and he was diagnosed with it. Every now and then, his tics will get worse and we go back to the neurologist and he changes the dosage of his meds or switches around the way he takes them. Well, the last time wasn't quite a year ago. Usually the meds make the tics go away all together and no one would even know he had Tourette's unless we told them.
He has an appointment Tuesday but I'm really worried. I have never seen his tics this bad. He's making several different noises very frequently and jerking his head. I sat in the living room last night and cried, listening to my baby in his room making sounds that he couldn't control. My heart just breaks for him. I'm so scared that his neurologist is going to tell me that there is nothing else that they can do for him.
I have bombarded God for 3 years to please heal my child of this. I just can't understand why it has to be him. I'm listening to him tic right now and it's killing me but I don't want him to see me crying.
Last year, Santa Claus hand delivered their gifts. There is a man that we know that for a very small fee, he will come to your house on Christmas Eve, dressed as Santa, and give your child their gifts and sit and talk with them for 20-30 minutes. So last year we thought the kids would enjoy it. After he gave them their gifts, he was talking to them and asked if there was anything else they would like. Jared looked at him and said, "Can you cure my Tourettes?" I broke down crying. Santa told him that he couldn't, but he promised that he would pray and ask God to cure him.
Other than this, he is very much a normal little boy. He's a straight A student, very mature for his age, wants to be just like his daddy, has lots of friends, and is an awesome little football player. I love to watch him out there on the field because he is unstoppable, if I do say so myself lol. Every year, he amazes his coaches. He went to football camp this summer and they had some of the Saints players come help out. When they were getting their football camp shirts autographed, Duece McAllister looked at me while he was signing Jared's shirt and said, "I have been watching this kid all day and he's going to make one hell of a football player. Whatever you are doing to encourage him, keep doing it because he's awesome."
Anyway, that's beside the point. I just needed to vent before I explode. It hurts DH too, as it would any parent. Thanks for listening.

kit_kats_mom replied: That's so hard. I'm sorry you are having to go through this. I cant imagine having to watch my child suffer from a disease...any disease...much less one that just begs other kids to tease. Kids can be really mean and having a difference that manifests itself outwardly can often make someone a target. I have delt with a few people with Tourettes in the past though and it can be frightening to witness if you dont' know what's going on...probably even if you do know. s it possible that maybe he's just having a stressful time right now and that's causing the tics to be worse than usual? Just curious.

It sounds like he is well adjusted and dealing very well with it though. I'm sure he knows that you are doing all that you can to help him. I hope that the doc has some good news. If not, at least it's not a fatal disease right? Could be worse.

Hugs. I

MommyToAshley replied: I am sorry your son has to deal with this disease. I can only imagine how helpless you must feel. I will keep your son in my prayers. Hopefully he just needs his meds adjusted again. Please keep us updated on how the appointment goes.

Hugs to all of you!

jcc64 replied: Hi and welcome. I'm sorry that you're feeling so down about your son's situation. I don't know a whole lot about Tourette's, although my son has a good friend who has a pretty severe case, along with ADHD and OCD (apparently they often occur simultaneously).
While I don't share your experiences with a child with a neurological abnormality, I think we all have wondered "why me" about something in our lives, and wished and prayed horrible things away from our loved ones. Someone once said to me, we cannot control our reality, but we CAN control our reaction to it, our attitude about it. It sounds simple, but I found that very liberating. I don't think it's productive to put so much energy into wishing the disease would disappear, b/c I believe Tourette's is chronic, and you're only setting yourself up for disappointment.
Rather, I would focus on things over which you have some control. It sounds like you must be doing something right, your son seems to be flourishing in every other way. If you're concerned about the other children's reactions to your son's tics, perhaps you could "educate" them yourself. My son's friend's parents used to do workshops for the teachers and staff at his school, so they were sure they had the most up to date info on the disease. They also would do a presentation for his classmates, so they would understand what was happening with him. As far as I know, the kids were very mature and patient and I know of no incidents where he was stigmatized, at least in school. The sports will also really help him with his confidence and social maturity, don't you think?
Anyway, I'm sorry you're having a hard time, and please let me know if you'd like to contact the family I was speaking about.

momof2girls replied: It broke my heart to read your post Im sorry that you and your son are going thru this, I dont know much about out, I just wanted to let you know your in my thoughts and prayers, maybe the medication needs to be changed in dose or something, they can do so much these days!

Hugs to you!!!!

Shannon

DansMom replied: Our office manager has a son with Tourettes, and it's been heartbreaking over the years to watch their struggles. I don't know if this is encouraging or helpful: as a young teenager, her son was able to get off the many medications he was on by learning to control (but not eliminate) the tics through biofeedback. Of course, the mom had to pay for him to go to a specialist in this field, since it is not covered by any HMO. It was expensive. He learned over the course of a half year to control a video game using his brain waves (electrodes were in place). After that, he learned to relocate his tics if they were expressing in a way he didn't like (vocally, for example). He could make the tic move to his foot or another part of his body. They removed his medications one by one over a long period of time. I've met him several times and have not seen any sign of the Tourettes. It's possible that you have to be a bit older to be able to participate fully and willingly in the training, I'm not certain.

Before the biofeedback training, I remember her saying that his tics were made a lot worse by eating anything with red dye in it (red pop or koolaid, for example) or food containing nitrates. I don't know if there's any medical backup for this. I hope it's not annoying if I'm offering information you already know about.

Not everyone trusts the biofeedback approach, as it is not a standard treatment---if you are interested in finding out more about the biofeedback approach, just e-mail me and I'll find out what I can from my office manager.

Mistydiane replied: ((HUGS)) Tecia you know I am here for you girl if you need to talk!!!
Love ya sweetie!!

coasterqueen replied: I'm so sorry. I can't even imagine feeling helpless and not being able to help my child. I wish I could do something to make everything better. Ugh. Don't we all. It's so hard when things are out of our control and we wonder why can't we do something about it with all this technology out there.

Your son will be in my thoughts and prayers.

DixieDarlin replied: Thank you all so much.
Misty, I love ya too, girl!
DansMom, thank you SO MUCH for that info! I knew about the red dye but had never heard of the bio feedback training. I will DEFINITELY look into that!
His appt. is tomorrow. I will let you all know what the dr. says.
Thanks again, you guys!

Kirstenmumof3 replied: I'm sorry you have to go through this. Our son is getting tested for ADHD and a tick disorder as well. I don't know what to say, I hope his appointment goes well and that they will be able to give you some answers!

A&A'smommy replied: wow what an amazing little boy! He is going to get more and more awesome with age so watch out your going to be VERY busy going to ALL his football games!!! I wish God would heal him too and I know this sounds weird but if he doesn't right now its for a reason...... I know you wish you knew what that reason was right NOW we all would, but whatever it is, its going to amaze you beyond anything you could possibly amagine! I bet he is going to bless a bunch of people... I can see it now as he as already made me feel it! sorry for going on so much I probably made no sense.... ((((((BIG BIG HUGS)))))) for all you have had to see your children go through your amazing mother for loving him so much that you shed tears all good moms do!

DansMom replied: Tecia, here is what Pam (my office manager) sent me in e-mail. I thought it best to post her own words, since she is the one who experienced the treatments first hand.

Tracy, The website is: www.eegspectrum.com

It is nationwide. In fact, there are only 2 psychologists in Ann Arbor
who offer it. I can highly recommend it from personal experience. We
were able to pull Josh off of all medications and he was on some heavy
duty stuff. I fought this poor doctor tooth and nail when he wanted to
pull him off meds because I was so afraid that it wouldn't work, but he
now takes nothing for the Tourette's and has just a minimum of tics that
are hardly noticeable. It was a godsend for us. It is kind of freaky
because someone is in there tampering with your childs brain, but the
results are amazing. My dentist also sent her son after I told her
about it and she was delighted with the treatment.

DixieDarlin replied: Thanks, DansMom. DH and I will be sure to check out that site.
Alyssa's mommy, I appreciate your support. ((((HUGS))))) right back at ya!