mommy11

mommaonamission... i wondered about you and your son and often and even sent you a private message a few months ago. glad things have improved : )

Hi Mom on a mission- I was wondering how you and your guy were doing. Glad to here things are going much better. It seems like alot of our children were hitting a rough patch at the same time. Keep us posted.

Hi Noelle- Take comfort that you are not alone. Read Sheila's book, it will give you hope. Ask questions and remember each hard time (waxing) will pass. My son was diagnosed 4 years ago and to be honest I still have a tough time. There are a lot of people here who can offer you good advice or just comfort you during the tough times. I have come to realize that my sons tics bother me more than him or his friends. I try my best to just reassure him that he is totally normally he just has "habits". I always try to make sure he never feels guilty about ticcing, and it isn't who he is just something he does sometimes. To be honest though, I still break down often on the rough days and just hope he is one of the lucky ones and we see a decrease with age...My son will be 9 in March. Hang in there.

Great news!!! I am so happy to hear of the decrease.

I am giving him a very low amount. .5 mg and we are having such great results. I mean he is falling asleep within 10-20 minutes...we used to go through hours of frustration every single night. Both of us usually ending up in tears....

My sons DAN doctor recommended I give him melatonin at night. My son has always had a really hard time falling asleep at night and when his tics are increased (which they have been the past 4 months) its even worse. Anyhow, I don't know if it is just the extra sleep or if the melatonin itself is helping decrease his tics a bit, but i am seeing a difference. Any thoughts? They are still there, don't get me wrong, just a bit milder....

Hi Mom- Just want you to know I have been following your story and I am sorry things have gotten worse. Has the Clonidine helped at all? Hopefully, this is the very peak of your sons TS and soon it will just become less and less. Just want you to know there are people out there thinking of you and your family. Happy Holidays to you.

Along with all of these...appointments, tests etc...My son has said to me, "Mom why are we doing this, I told you my habits do not bother me" Part of me feels like after all of these tests I should let it go and just hope for the best. I feel like maybe all of this is bothering me more than him. I really just want to get some sort of handle on it before it gets any worse.

My son has had the following tests: Amino Acid-Urine EEg Metals-Hair Yeast-Stool IgG Strep Test Complete Blood Count I have bought Sheila's book...I have tried elimation diet, I am constantly reading up on anything I can get my hands on. I currently have my son on a and am seeing minimal results after 4 weeks: good Multi vitamin extra B no colors etc Omega 3,6,9 Calcium Mag Zinc Combo Taurine Again, I feel at a loss. His tics are mainly motor and often. His waning periods are less and less. He has had some shouting vocal tics, but not constant (yet) I just feel so discouraged that I can't find a cause that makes things worse and am being to feel like supplements just won't work for us....

Amino acid levels were checked and hair for metals...i am just at my wits end. i want to help my son and i just feel helpless right now...

3 weeks ago we had our appt with our DAN doc. Everything under the sun has been tested. So far nothing has come back abnormal. What if there are no allergies, yeast issues, sensitivities etc....Is medication inevitable?

This is great news! I hope your son continues to improve.

Thanks for the tip. They are going to have to extract his tooth next week. Poor little guy. I feel so bad for him. Hopefully, soon after that infection is gone he will slow down a bit. Again, thanks to all of you for everything! Happy Thanksgiving!

Thanks so much to both of you. We have an appointment for my son on Monday with a DAN doctor. I also just found out yesterday that my little one has an abcessed tooth!!! One thing after another....I am curious if that has someting to do with why his tics have been so intense.

Hi Chemar- Would you be willing to give me some specifics on the side effects that your son experienced with Haldol? My sons dad and I are going back and forth on if we even want to consider meds...I am trying to make an argument.

Hi Mom- Just curious how your son has been. I have read your posts with much interest and hope your son's vocal tic is waning....My son has had an array of tics the past 6 weeks pretty consistently. He is 8 and a half. Up until this point his TS has been fairly mild like your guy. Thoughts and prayers are with you and yours... Mommy11

I thought it was great, however I watched it alone and won't be showing my 8 year old any time soon. He has not yet realized that people could possibly look at him different or tease him for his tics. I don't want to scare him. I also worry about the "copy cat" tics. I did buy a copy to loan out to his teacher, (and future teachers) his friends parents, and his grandparents.

Chemar- I saw the special on HBO and ordered a copy to share with my sons teacher and friends parents. My son didn't watch though, as he does not yet realize that he would ever have a tough time, socially because of his tics. We act like they are no big deal in our house and so far his fellow 3rd grade friends have been very forgiving... Its funny, I thought nothing could be worse than watching my son shake his head all day until he started yelling out of the blue! None of the tics are any fun to watch or listen to, but he is such a happy sweet kid they don't seem to bother him one bit. I hope we are lucky enough that his TS does improve when he moves into adulthood. We have alot of years ahead of us...Again, as always, I appreciate your kind words.

I sure do appreciate all of your responses. My sons head shaking tic has decreased and he seems to be waning. He has still had a couple of bouts of shouting each day for the past 12 days. Its loud, and so bizarre to me. My newest OCD obsession is my sons behavior, guess I at least know where his TS came from. I guess the scariest thing right now, is every time he does a tic or a new tic I just wonder if it is going to become severe and constant. Wonder if I will have to keep him out of school...Its so tough. I find myself thinking of my son as a "ticcing" time bomb and I am afraid I am not enjoying him like I used to. Anyway, thanks for all advice and thoughts. I will definitely work with a dr, to get the best results possible. Ronna and Chemar, Curious....how old are your boys now?

thanks so much chemar!!! You have been so helpful! the above was recommended to me on an over the phone consult. I do have an appt with an actual DAN doctor though.

The following have been recommended to start. 5HTP, Taurine, Rhodiola Rosea, SAM-e, and L-theanine.

I started my son this morning on a powder supplement that contains extra B Vitmains as well as extra Mag and zinc. Also Omega 3, 6, 9. I am still waiting on the Amino Acid Supps that I have ordered. Does anyone have a recomendation for a good childs amino combo. I am starting to think the ones I ordered aren't coming!!!!

Chemar- The doctor did offer meds Orap...From everything I have read about it, it does not seem like a route we want to go on. I am going to start my little guy on vitamins and amino acid therapy. I need to make sure I exhaust every single option before considering medication. Doesn't Orap seem a little extreme to try on him first?

Carolyn- I am going to demand Amino Acid levels be checked today at our Neuro appointment, even if they have to be paid out of our pocket. Thanks so much for all of your feedback. It is very much appreciated.

Hi Gina- I have no advice for you, but I have found some sort of comfort in reading that I am not alone this very second, if that makes any sense. I hope this period passes quickly for your son. I have a feeling I will be spending a lot more time on these boards.