jjschwartz

Okay, I am going to open myself up here and become vulnerable. I have not heard anyone talk on this subject since I have been researching TS, ADHD, OCD and anxiety and I am wondering if at all you have experienced some of the same, you might be comfortable sharing. My grandson’s father has been in prison 9 out of the 12 years of his life. All drug related charges. He has been involved with methamphetamine since he was 16, so obviously he used at the time my daughter got pregnant. She was not using but had used in the past. She remained sober until Austin was 18 months old and then took off one night and left me with him and basically did not resurface until she was arrested 4 years later. She has now celebrated 9 years in recovery and that is a great accomplishment for meth addicts as their recovery rate is very low. Have you ever had anyone or heard of anyone connect meth use with TS and/or the other disorders?

I have been using Natural Calm (I don't think it is the same company). Also massage the bottoms of his feet with Lavender Essential Oil for relaxation at night. Recently I brought my grandson to a naturopathis doctor and we are awaiting the results of some tests and then are going to try some type of homeopathic remedy that works with the adrenal glands that if I remember correctly is part of the endocrine system which creates epinephrine that in turn works with the dopamine levels in the brain. I am just learning so don't quote me, but I will let you know when he starts and what happens.

Yes Chemar that would be nice. I wouldn't know how to do that. (Thread) I appreciate your words of advice/wisdom. The one thing that comforts me about the 'homeopath' (I don't know if that is the correct wording - I just looked at his business card and it says American Naturopathic Medical Association Board Certified Naturopat -)maybe there is a diffence - I am not sure) he has a grandson with TS who is now in college and has treated him, so I feel pretty confident in him. But I do appreciate your input and I agree that there is so many out there and we do have to be careful no matter what type of treatment we seek out for TS and the related disorders. I really believe that my GS is exhibiting such a greater level of the ADHD/OCC symptoms more now than before. I think I read age has something to do with it??? He will be 12 in January. Oh Yay - let's add hormones on top of everything else. All I have read over and over is how we have to educate the school. And I have made quite a lot of progress in that area, but there is still a long way to go. The one thing I am grateful for is GS's Spec Ed teacher contacted a person that works with schools and is experienced in training school staff in TS/ADHD/OCD. He is coming in to our meeting next week when we discuss GS test scores and he is also going to monitor GS in the classroom, visit with his teachers and myself. He will then be coming back and him and I are going to facilitate together the peer training. I have the HBO documentary, I Have Tourettes, But it Doesn't Have Me. We will show that and talk to the classes. And then he will also be coming in to do an in-service with the teachers. So I guess my 'pushing' is getting us somewhere. I also became a member of the National TS Assoc. and am getting alot of info from them for myself and for GS. Thanks again, Jennifer

Thank you and Thank you again! Yay! You are out there I spent many hours today researching on the National Tourettes Syndrome Assn. website and many others. Wow there is alot of information out there. I just can't seem to get enough information. I have come across a lot of things.I was learning about the endocrine system and how the adrenal glands that produce norepinephrine which affects the dopamine levels and the brain doesn't utilize the dopamine that is created. Also how information is passed through the brain - a person with TS doesn't have the 'braking system' to stop certain impulses and responses that should be blocked from getting through. And if the information that passed through which in turn causes a tic, if it is a positive response the brain is more likely to allow that to 'slip through' again. All of this is very subconcious but has an effect on how the tics wax and wane and the environments in which they are better or worse. Our experience at the Cranial Sacral Massage Therapy and Reflexologist determined that his endocrine system was very week including the adrenal glands. Then the homeopath diagnosed the same area. We are waiting on some test results and then will put him on some homeopathic medicine which will regulate the dopamine levels in his brain. I think we are going to see some major changes soon. I also will continue to work on diet. As I work with his school and the IEP, I think I have come up with an idea. My GS has never been explained to about TS and how his brain works and what an IEP actually is. I am sharing with him much information and am going to show him the basics of the IEP (not the details) so he has a visual as to what it is. I can't imagine what he thinks it is in his mind. Maybe if he has more of an idea of what it is all about, he will be acceptive of it and not exhibit such defiant and negative behavior towards it. Well, there we go again....I can never say things in just a few words. Thanks for hearing me out! Jennifer

Thank you for your response. I guess I have been frustrated in my search for answers and recommendations. I didn't mean to sound disrespectful. Your explanations help me to understand better and learn things I didn't know. I will continue to search and hopefully in my research will be able to help others also. I am working on so many things for my grandson, and I think the frustration lies in the fact that I may only have this school year to provide as much help as possible and the school year is almost half over already. Again, thanks for your support. I will continue to read and research.

I have posted a few times in this forum and it seems like there is never a whole lot of feedback which is what I am really looking for. When I look at the stats on the right side of the list of postings you will many times see a huge amount of 'Views' and rarely any 'Replies'. Why is that? People are reaching out for help and we need more interaction. Thanks.

Thank you for your response. We started some cranial sacral massage therapy and reflexology about a month ago. He has had 4 visits, but now we are holding off for a while because we also saw a homeopath and we are waiting for some tests to come back. He picked up on the same areas that the other therapist did. The adrenal glands and the endocrine system which if I understand correctly help with the balance of dopamine and other neurotransmitters in the brain which can be areas of dysfunction in children with TS. I am excited to get on some homeopathic remedies and see what happens. In the mean time, I think I would like to get my GS into some Cognitive Behavioral Therapy which will definately be a challenge. My prayer is that we can somehow break through this wall he has up and begin to understand that this help he is being offered is for his best interest. He is willing to try almost anything for help outside of the school. I suppose also after spending Christmas vacation with his mom, there will be an adjustment period getting back in the routine. Thanks again.

I have searched this website high and low and do not find anyone who has addressed or discussed the area of my concern. My grandson is living with us this school year, he is in 6th grade. He has TS/ADHD diagnosis and is now exhibiting alot of anxiety and some obsessive thought patterns and behaviors. He has fought the "IEP" ever since it was put into place when he was in 1st grade. I can not comprehend why he would not want the help provided for him. He says he doesn't need the help and can do it on his own and we have tried a few different things and he is not capable at this point. He doesn't like school, but it is probably because he can't perform at the level of a 6th grader. His reading is at about a 3rd to 4th grade level. If it is an issue of being 'embarrassed' I guess I can understand that, but he has never given any indication of that. He just plain thinks he is capable of doing it and does not want help. It makes things so hard because he will get stressed and then out comes the behaviors that I get phone calls about. The school is new this year for him and we are in the process of writing a new IEP. He currently has accomodations and modifications in place. The teachers are not knowledgeable about TS and it has been a real struggle. So, not only am I trying to help the school understand TS and how it affects my grandson, I am also trying to get my grandson to understand that this is all in his best interest. Some of the things that have been happening are: a para told him that she didn't believe his whistling was a tic and after 3 times of asking him to stop he was sent to the office and the superintendant told him the same thing. She also told him that 'choosing not to listen' was not TS. Another one of his teachers, after asking my grandson to stay on task and focus 3 times took the test from my grandson, ripped it up in front of the class and threw it in the garbage. I addressed this with the teacher during a meeting with him and he had no response. He also told me in that same meeting that they (the school, I am assuming) is losing credibility in me because I am using TS as an excuse for all of my GS's behavior. Wow! I am feeling pushed up against a wall, but I know I have to remain calm and work with them because this is all about the child and what is in his best interest. I have been trying to explain to them the deep complexities of TS and the associative disorders and they keep wanting to put him into this nice little special ed 'box'. TS does not allow for rigid guidelines. They need to learn how to 'color outside of the lines' so-to-speak. The special ed teacher is finally bringing in a specialist from some cooperative here in MN and he is going to attend our after testing / pre-IEP meeting and he will also be monitoring GS, talking to his teachers and paras and myself. I ordered the HBO documentary 'I Have Tourettes But It Doesn't Have Me" DVD and asked if I could facilitate a classroom viewing and discussion (grandson said it was time to educate his peers, he did not want to at first - remember this is his first year at this school). I ordered the National TSA themed bracelets to hand out to all the kids. The school will allow me to do this in collaboration with the representative from the cooperative. That is okay though. Then the rep is going to come back into the school and do an in-service for the teachers. So, I have made some progress. I am not sure at this point if I want an advocate to attend with me because I have heard that the school gets pretty jumpy when you start going that route. I am sorry I went on and on, I just needed to vent. But back to my original question: has anyone ever had or heard of a child that turns away with such determination the help that is available to them? Thank you for listening and I sure hope someone out there has some ideas, suggestions or a miracle to pass my way. To all of you, Thank you!

Please help. I am dealing with my grandson who is living with me this year. He is in 6th grade. I have been trying to educate the teachers and/or special ed teachers about Tourette Syndrome and the co-occurring ADHD and anxiety. From what I have read this is very common. The Tourette forum seems to be more focused on tics and right now I seriously am more concerned about the ADHD part of his disorder. His teacher is beginning to get somewhat demanding with how he expects my grandson to act and partipate in his class. He is saying that 'by now he is expected to do more'. The teacher doesn't seem to accept the fact that my grandson cannot sit still for 75 minutes during math and continually keep eye contact and focus. But then I question myself and wonder if I am wrong in thinking that my grandson is incapable of doing this. Does anyone have any help for me?

I am sorry if I am doing this incorrectly, but I am learning the ropes of the forum. I had started a topic a while ago on learning disabilities in the school setting. I added more to it tonight, but want to make sure that you see it, since it is such a deperate plea. So I am posting this also. I didn't know if anyone would see it since it was added to a previous post. Please bear with me as I learn. Thank you, Jennifer

I must say I am experiencing the end of a day that has me about over the brink with frustration. I said to my GSon's Special Ed teacher before I left today that I would rather see him tic all day than have to watch him struggle with his learning disabilities. This was said from sheer frustration. I am assuming that his learning disabilities are due to the Tourettes. Is that wrong? He is in 6th grade and is reading at a second grade level. He is failing. I met with the teachers, special ed dept, social worker and para before school started this year to inform them of Tourettes and how it affects GSon's learning abilities. None of them have had experience with Tourettes and this is a new school for GSon. My frustration level and stress is about through the roof right now. My GSon brought home his math worksheets and tests for the first half of the semester last night and he had an F for a grade. He has been given a chance to do make up assignments and correct problems. In the light of that I went to school with him at 7:30 a.m. this morning. I talked to his teachers, sat through several classes, cleaned out his desk (organization is not in his world), took notes and just watched and listened. We left school together at 2:30 and went outside in the yard for some fresh air and diversion before we began 4 hours of homework. Yes, 4 hours with just a short break to eat. Surprisingly he had no tics during this time and only became distracted a few times. That is a total of 12 hours today alone mostly involving school and school work. I don't know if I can keep up this pace. And to top it off he didn't even get close to starting his Reading packet, he only has 2 out of 13 pages completed. When I try to explain to the teachers about Tourettes I can assure you they can see the tics but as far as explaining any learning disabilities they all look at me and say they think he is capable but he just chooses to waste time in class when he could be working on assignments. AAWWKK! I do not want to be naive here and have my GSon 'playing' me, but truthfully, I don't think he can do this. His brain is not functioning properly. On a positive note, his evaluation for his IEP starts in November but takes about 6 weeks. His current IEP is based on OHI. He was one point from qualifying as learning disabled. I think that will change this year. I am also checking into a specialized school for reading and math therapy that works one on one with students for 2-3 hours per day and then they still participate in regular school. If his medical insurance doesn't pay, I won't be able to, it is $68 a day. He is such a smart, handsome, very well liked boy. Kind and loving, it just breaks my heart when he calls himself retarded. He isn't and I tell him that. I just keep pushing forward in helping him, but I am so exhausted. I am 56 years old and not used to this. He will be with me for only this year and I am trying so hard to get him help while I have him. Please answer: is it the Tourettes causing such learning disabilities? Thank you. Jennifer Am I wrong in thinking his learning disability is due to Tourettes or is it just one of those 'possibly ailments' that may accompany Tourettes?

This information is very valuable. I used her recommendations.

You have found a great place to start. I came on board here only a month or so ago and have found so much valuable information and the forum is a great place to join with others for help, ideas and encouragement. It is all so overwhelming when you first take the plunge and begin the steps of change. As I have been encouraged here, just keep moving forward. I have a plan that includes a huge list of items, but realistically in my situation I can not condemn myself if I can't do it all at once. I have started by adding the Natural Calm liquid vitamin/mineral combo, and slowly making some dietary changes. I have been doing this for about two weeks and have not seen his tics reduced but I will keep going forward. I encourage you to stay on board with this forum and keep trying. It is lifestyle changes and that is always something that we have to strive to focus on every day. One day, one step at a time. Jennifer

Thank you for letting me know this. I wasn't exactly sure if I had done it correctly.

I hope I did this right. I set up a poll above this post asking your opinions on the flu shot. I personally do not get it. I was wondering about my GSon with Tourette's.

Thanks to the responses I received from my first post. It is with sincere appreciation that this forum is available, especially to someone so new as I am. 1) I did some research for my area and contacted one clinic only about 2 hours a way that I think I will start with for some initial testing. The Doctor is an MD and DO who is a strong advocate of holistic family medicine. I am wanting to have some allergy tests done and some blood work done. Who knows what else. 2) I am also going to try some chiropractic care since his tics can be so strong it could possibly throw this skeletal system out of whack. 3) I ordered Sheila Rogers book, Natural Treatments for Tics and Tourette's. I have been reading and researching as much as possible. 4) I started last week giving him a dose of a liquid multivitamin called Kids Natural Calm by Natural Vitality. I had to start somewhere. It includes 24 frutis & veggies, Omega-3 DHA & EPA Vitamins and Minerals, Natural Calm magnesium citrate (240 mg), calcium and Amino Acids. It is gluten free and and all the rest of the 'free-of' ingredients. He takes this in the evening. 5) I purchased some Lavender oil and massage his feet at night to relax him. 6) I purchased some ground flax seed and sneak it in different foods he is eating. I read somewhere that the Omega 3 from Flax is better than from fish oils for tics. 7) I am in the beginning stages of trying to eliminate food additives and food dyes. And as much dairy and gluten as possible. I know this seems like a head-long leap into what may seem like too big of an undertaking (setting myself up for failure) but I am trying to be flexible and realistic in this as possible and only do what I can. These are some of my goals and I have started a log to try and monitor what happens when and with what? One of my biggest concerns is school. Grandson is 11 years old, 6th grade. He has had an IEP since beginning school. To make a long story short. I do not know if the school is capable of teaching him with his disability. Along with his Tourette's he has ADHD and some OCD and anxiety. There are so many components to his learning ability and his needs that it is so difficult to get the education that he needs. He is in a new school this year which is helping because this year he is living with me and I am relentless. I will continue to pursue every avenue possible to get him help. I have provided the staff with as much information as possible and I am exercising my 'rights' to get them to make adjustments to his IEP. No one at this new school has had experience with Tourette's. There are things that my GSon is just not capable of doing and I am wondering how any of you have handled the school experience. I do not want the school to just keep shuffling him through the system and have him grow up and not have the education he needs. I went to visit a specialized school today that runs a very intensive program along with keeping the student in traditional school. It is two hours a day. Short term is 3-4 months, their recommendation for my GSon would be 2-3 years because his scores are so low. She told me that they can teach him how to learn successfully. It is a one on one with student and teacher. It sounds like a great program and the special ed teacher at his school recommended I take a look at it. The cost is extremely high but supposedly because of his diagnosis some or all would be covered by insurance. So.....what have you done in regards to your loved ones learning disabilities and school? I would love some input, feedback, suggestions, etc. I have been reading some of the things out of Sheila's book to my GSon and he is enjoying learning more about his disease. And knowing there are others out there like him seems to help him accept it better. I told my husband that in the span of our lifetime, one year is such a minute period of time, but with my GSon this one year means his whole future. We only have one year with him until he goes back to his mom. I am praying for a miracle. I appreciate in advance for anything you have to share with me. Thank you. Jennifer

Sitting here watching my 11 year old grandson tic, I am disheartened. In my search for help I came across this website and am very encouraged from what I have read so far. My question is in regards to several statements I read about finding a doctor to work with when beginning a supplement regime and other steps such as allergy tests, diet changes, etc. What 'type' of dr should I be looking for. My grandson is living with us now and has some very extreme circumstances that have exacerbated his tics. I am ready and willing to do whatever it takes to help him. I am hoping this website/forum will provide me with direction and encouragement. Watching him in school and trying to help him with his homework has me so concerned. I shared with him tonight some of the things I was reading, and I asked him some questions. I am trying to get a feeling for how willing of a participant he will be. We talked for a while and I told him about this website and this forum. He was so precious, he asked if I would please post on here the question, "Will my tics ever go away forever?" I told him I would post the question and then we prayed. Your research is our benefit. Thank you.