Hello I'm New

Angelica - posted on 04/28/2009

Hello Bridget, I definately know excatly what you are going through. My 7 year old was diagnosed about 6 months. But like Sarah's son my little boy also had a series of test before he was diagnosed. My little boy has vocal tics right now which at times i feel horrible because I feel like I can't do anything for him and I think that it bothers him. He just received some medication (chlonidine) which he's been taking for about 5 days now, I do hope it helps. But I also agree that you should go to another neurologist. You can also signon to tsa-usa.org that is the web site for the tourettes syndrome association. They can help you find a doctor. I hope this helps. Angie

Kimberly - posted on 04/26/2009

Hello, you are not alone and we were also thrown into this dx without much info or help. I agree with the posts. My daughter, Faith, now we realize probably has been displaying symptoms even in infancy but we didn't see it until what we thought was normal 4yr old stuttering became worse, temper/personality changes, incontinence, headaches, and other symptoms that we thought were either seizures or stroke symptoms. At the time, when things were really bad, she was falling down and using wrong gender names (calling mom and dad backwards), pronouns were all messed up, writing went from right to left and backwards. She was doing alot of finger drumming or flapping and has this warping chirp sound in her throat. She also was dx with OCD and developmental delays esp fine motor and possible asbergers but really the OCD and the TS rages are the most difficult to deal with on a daily basis. We also had EEG's and sedated MRI's to rule out tumors and seizures and strokes. She also has a heart condition that will need surgery for hopefully not until she is an adult and had an immune system issue for about 2 yrs but that is better. We also thought that stress in the house over my infant son being diagnosed with this rare histiocytosis dx called Juvenile Xanthogranuloma that left us seeing numerous docs including oncology for possible chemo tx.....well obviously, we were crazy here during that time and just thought she was expressing her stress with the stuttering and behaviour changes but this was not to be the case. Anyway, sorry enough on that.......educate yourself on TS and the rest and take things slow.....you will figure out what can likely set him off...although not always be able to avoid it or they change it up on you. We also were instructed to have a complete psycho/social/physical eval through the county's early intervention program. It is alot of paperwork and appts but well worth it if he would qualify for services. My Faith receives speech once a week through them in a group stuttering session with other kids her age that stutter although none have TS......this has given her confidence that she isn't alone and there are others that have "bumpy" speech plus while they have session the other mom's get to wait in the hall with our other little ones and can chat....kinda a little support group in itself. She also was receiving speech weekly through CHOP but we just last week were discharged for now. Also, she starts Kindergarden in the fall and this week we go to see the speech therapist at the elementary school for an eval and I am still waiting to hear from the school psychologist on what other evals they will want to do.......this all came about from a Transitions mtg between the county and school recently. Also, it seems very important to have the IEP's in place esp for the school.....now you home school but it still might be worth your while to check into all this because if your child would qualify to receive services....they may be able to provide it either at home or at the school (his home school assignment) or with the county. Again, I am new to all this and haven't gotten into school yet to know more how this works but you are your child's best advocate and if you don't ask/push for answers/help you won't get them. Also, it sounds like your child is very frustrated with how the TS and OCD are effecting him. I have found that Faith just doesn't know what to do sometimes.....esp social delays and you have to be his teacher and also let him know you support him and love him no matter what but that you do expect good behavior from him and you will need to be clear about what is expected and what the consequences are for not listening. TS kids are just like any other kid and will press limits and all that too but will need the extra help and support in some areas. Just remember to take a deep breath and yes you do have a grieving stage to work through and it is all normal. We have at this time chosen not to medicate but we did start the chewable omega 3s and supposedly my daughter feels better on them. We will medicate if school becomes an issue for her in the fall. Good luck and I have found alot of info and support at the mentioned sites as well. Hope this helps. Kim=)

Sarah - posted on 04/21/2009

A "strange child?!!?!?!?!" OMGoodness, that's awful! There is nothing "strange" about children with TS... all children are gifts, special, beautiful and unique. I'm so sorry that you went to this neurologist. You absolutely should get another opinion.



Your son is not strange, IF he does indeed have TS, then he is a child with a neurological disorder. But that a neurological disorder doesn't define our children... they are all unique and special.



Man, I wish I had a minute with that neurologist!



Good luck and hang in there!!

Bridget - posted on 04/21/2009

Quoting Sarah:

Hi Bridget, I understand what you're going through! It's certainly a tough road. When I first learned that my 6 yo had TS, I went through a mourning period. I then met other parents in the same situation... and that's helped a lot. Talked to my son's school nurse and asked her to share my name/number with other parents w/ kids w/ TS (you mentioned that you HS, so perhaps you could talk to your MD).

Did a neurologist diagnose your son? She didn't sound very helpful. Maybe get a second opinion and see if this next doctor can help you with support ideas and more information.

When symptoms first started, our MD ran many tests (ASO blood test to rule out an untreated strep infection, which can show up as PANDAS; a blood test for various tic borne illnesses; brain scans to rule out a tumor and a test to rule out seizures).

I've joined a few yahoo groups (tsparents and tictalkparents) and the tourette syndrome association website (TSA-USA.org) is very helpful. Additionally you can call the TSA and ask for referral information, support groups, etc.

My son isn't medicated at this time... we're managing symptoms through diet. I truly believe that the diet and supplements have helped my son. He still has TS, but the symptoms have been mild for quite some time. We've removed wheat, dairy, eggs and soy, artificial flavors/colorings. We also have seen an allergist. If his symptoms ever become as severe as they once were, we will medicate. Our neurologist has suggested Tennex.

We still deal with our son's "rages"... he's very rigid about what's right and wrong and if he doesn't get his way; look out.

You have 3 wonderful kids and you are a great mom. Hang in there and good luck! Keep in touch.

Ty so much all this info! A neuro doctor for kids is who diagnosed him. He was there because they suspected he was having seizures. When she watched the video of what he was doing she instantly said " that's not seizures thats TS" . She just almost kinda shrugged it off and said not to worry about it. That it really wasn't anything he would just be "a strange child" (her exact words). She gave us a pamplet and left, told us there wasn't any reason to bring him back to her if we chose to not medicate.  I will most certainly check into those groups. TYVM for all the info.

Sarah - posted on 04/21/2009

Hi Bridget, I understand what you're going through! It's certainly a tough road. When I first learned that my 6 yo had TS, I went through a mourning period. I then met other parents in the same situation... and that's helped a lot. Talked to my son's school nurse and asked her to share my name/number with other parents w/ kids w/ TS (you mentioned that you HS, so perhaps you could talk to your MD).



Did a neurologist diagnose your son? She didn't sound very helpful. Maybe get a second opinion and see if this next doctor can help you with support ideas and more information.



When symptoms first started, our MD ran many tests (ASO blood test to rule out an untreated strep infection, which can show up as PANDAS; a blood test for various tic borne illnesses; brain scans to rule out a tumor and a test to rule out seizures).



I've joined a few yahoo groups (tsparents and tictalkparents) and the tourette syndrome association website (TSA-USA.org) is very helpful. Additionally you can call the TSA and ask for referral information, support groups, etc.



My son isn't medicated at this time... we're managing symptoms through diet. I truly believe that the diet and supplements have helped my son. He still has TS, but the symptoms have been mild for quite some time. We've removed wheat, dairy, eggs and soy, artificial flavors/colorings. We also have seen an allergist. If his symptoms ever become as severe as they once were, we will medicate. Our neurologist has suggested Tennex.



We still deal with our son's "rages"... he's very rigid about what's right and wrong and if he doesn't get his way; look out.



You have 3 wonderful kids and you are a great mom. Hang in there and good luck! Keep in touch.