New to TS, OCD, ADHD...HELP!

[momto3ts]

What a relief to find you all!! A brief summary (I'm sure it won't be, I like to ramble). But if you don't mind taking the time to read I would love some help.

 

My 8 year old son was diagnosed in June with Tourette Syndrome (complex), OCD and ADHD. I had already had a sinking feeling by getting on the computer and reading. Although I felt that I needed a professional to tell me. Upon leaving that appt. with the Peds. Neurologist I had a prescription in hand for Zoloft.

 

My husband and I were takin' aback that there was no discussion, no alternative? The frustration grew over the next couple of days tring to figure out what to do. We had that prescription filled but happily never gave it to him.

 

Unfortunately for us, we realized that he had been having tics for quite a while (we can look back now about 12-18 mo.s) but chalked them to being odd kid behavior, or "he's just a boy", and to think we were just completely annoyed (I'm embarrased to say).

 

In April, before a Spring Break vacation my son was diagnosed with Strep, no big deal, as I thought. While I don't think he has PANDAS, his symptoms of OCD and ADHD came on quite suddenly. And noone in the family has Tourette's

 

His grades dropped considerably the last quarter in school and began vocal tics once school got out (increasingly louder). That's when we finally opened our eyes and so he was diagnosed.

 

We are now on a organic diet, trying to get blood work done. We are so nervous that school starts next week. Ya know you thinnk you have all summer to find help and I still haven't. My Neurologist said straight up "Unless you want to medicate him, I can't help you". WHAT????? My Ped's. Dr. is hesitate on getting blood work done and checking on levels of misc. items. WHY????

 

I have ordered so many pamphlets from TSA and i also bought Sheila Rogers book (haven't completely finished it yet).

 

My biggest frustration is in what order do I do things? I have read you say DAN Dr.'s, or Intregrative or Environmental...Where do I find these Dr's?? Is Organic the right thing to do or should I try something else first? We have had allergy testing done. I realized that we are also facing major ADHD.

 

My other issue, I can't for the life of me figure out his triggers. I am so impressed reading everything today ( I have been reading all of your entries for about 3 hours) and how you all know triggers. I have been keeping a journal since the middle of July. GREAT!!! What does that do? There is nothing that is the same. Why one day is great and you hear nothing and the next he is uncontrollable.

 

It just makes me so sad for my son, I also have two other children and they see him dealing with this also, it just hurts.

 

I'm not really sure why i wrote I guess I needed a sounding board and maybe some help. If anyone has an answer or a magic pill, ha ha ha, or a clue of how I am supposed to do this, I would appreciate hearing from you.

 

mother in need

[kelly]

It was actually great to read your post. I could have written the same thing. My son is 4 1/2 and diagnosed with chronic tic disorder. I barely know what that means. For some reason doctors don't seem to be that concerned with this disorder, nor do they offer much support or guidance. I left the pediatric neurologist with no more knowledgable then before I went. Heck, everything she told me I already knew from the internet. They haven't dianosed it as Tourettes only because there are no vocal tics yet, yet? No mention of diet, no alternative treatment, nothing, just medication for when he gets older. Which means he will have this when he gets older? I barely got an explanation as to what a tic is and how it happens, just that it would likley not go away amd may in fact get worse in time. So after greiving for the loss of my son's "normal" life, I decided that couldn't be it. I read Shelia Rogers book and then joined this website. I read many of the posts and felt for the first time, a bit of hope. But like you, I have no idea where to start or how. I am anxious to start, to be able to do something that may be able to help him. Right now I feel so powerless everytime I see him having an "episode". So I hope we can both get some answers from your post. I am in the process of figuring out his triggers. I have eliminated TV effective today since that seems to be a big trigger. Unfortunately the others are boredom and fatigue, so I don't know how to deal with that. I too fear school beginning. He will be attending 5 full days a week, and I don't know how he will handle that. We already had some problems last year with three days.

I am grateful for any information anyone may have that can help me in any way. And I don't know how evryone else deals with this, but for me, I spend a lot of moments on the brink of tears, which is not who I usually am. Please tell me it gets easier.

Kelly

[Chemar]

Hi momto3ts and Kelly and welcome to you both

 

I know just how overwhelmed you both feel as I have been there myself. So glad you have found this site and Sheila's excellent book before going down the tortuous medication road!

 

I dont have a lot of time to post right now and so I will be back again either later tonight or tomorrow with a bit more detail (also sure others will jump in with their welcomes and views)

 

However, one thing really jumped out at me from your post momto3ts...........why dont you think your child may have PANDAS?

all the signs are there that it really could be a PANDAS situation:

exposure to strep, sudden onset of complex symptoms, no family history of TS...............

 

anyway, I really cant post more now but I do encourage you both to keep reading here on the forum and also on the Latitudes main site too...........

check the "Finding Medical Help" sticky thread too at the top of the forum and I will quickly bump up a couple of helpful threads for you as well

 

a quick word of encouragement to you both..........so many come here feeling just as you do, and discover that there is SO much reason for hope and optimism as there ARE ways to help your children without risking the nasty side effects of the "brain drugs" .........so, as I always say.......just take it a step at a time toward the light at the end of the tunnel

[samsmom]

Hi to everyone

I just read these messages and really wanted to post a reply. I've been looking at the posts on this forum for a few months now but have never contributed before. So I'm really a newbie like you! It's late and I'm tired, and I'm not even sure how this posting works, but I just couldn't switch off the computer without letting you know that I understand 100% how you are feeling.

 

Our youngest son developed symptoms of TS in June 2005 - he was 4 1/2 years old. I took him to the doctor and the first question he asked was if we had any family history of TS. We don't - something like this was never even close to being on our radar.. It was devastating. I, like you, spent most of that summer either in tears or on the verge of them. I just felt as if my little boy was reaching out to me from the end of a long dark tunnel and I just couldn't reach him. I would wake up every morning thinking for a second that it was all a bad dream, then realizing that it wasn't, and not even wanting to get out of bed and face the day..

 

A year on, I can only tell you that everything is so much better. Even though we have not really seen any improvement in his symptoms since the initial onset, the things that have made it easier for us are:

 

1. Just adapting to a 'new' life. Once the shock of what's happening to you starts to die down (I promise that it will), you just get used to the way things are. The symptoms do wax and wane so you do get periods of relief. My 12 year old told me last week that he doesn't even notice the stuff that Sam does any more (and he's a pretty self-conscious kid). We are all so much more calm about it. No magic stuff here - it's just time moving on and allowing you to adapt... It WILL happen.

 

2. Reading, reading, and more reading. Doris Rapp, Sheila Rogers and many more have written so much of interest. Just search for Tourette on Amazon and you'll find plenty to start with! Sometimes, some of the stuff that you read can make you feel bad, but keep at it. Whilst it won't all apply to your child, it just opens up your mind to all the possibilities and helps you to create a big picture in your mind that you can then break down into smaller chunks to work on (that's how my brain likes to work anyway!)

 

3. Finding this website and forum. I can only echo what so many people here have already said. You do have to do all of the work yourself. We have only been offered medication by the 'traditional' doctors that we have seen. A few weeks after Sam's symptoms first started, we called the doctor on a Saturday morning in panic as he was slapping his chin down on his chest almost every few seconds. We were given a prescription for Klonopin - the doctor told us he had to recalculate the dosage several times as it was way over what would normally be prescribed for an adult for anxiety, and he was concerned that he had got it wrong. We took the prescription but, thank God, never gave it to him. How could we sedate our 4 year old son with such a huge quantity of this stuff? Shouldn't kids of that age be out running and playing and loving life? It was a heartbreaking few days but it led us down the path of finding other ways. The information that others on this website share with us all is an absolute GOLDMINE. Be prepared to sit and read and absorb for hours and hours. I have a file full of notes from it. It will be SO worth it! I have done this over the last few months and only now feel ready to tackle the issues that I think relate most to Sam. The temptation to jump in and make changes straight away is huge, but we found it better to take things slowly and keep track of what's happening. Do keep going with a daily log. Although I couldn't see anything clearly at the beginning, I can see things now in the notes I wrote back then. Now I can look back at things that happened a couple of weeks ago and start to see some possible connections. I think you do almost have to live with this for a while to get a good picture of what's going on with your child.

 

4. Finding a good doctor. I gave up on our primary care doctor for Sam - he wasn't interested. We have a new pediatrician who is much more in the know about this kind of thing. I was also able to find a good Environmental physician close by (check for one of these on www.aaem.com). I had already taken Sam to a normal allergist who discovered that he had a huge allergy to grass - and gave us Zyrtec... Interesting, as his symptoms first started in the spring, and also worsened again in spring this year. So instead of popping the pills, we turned to the environmental guy and got more detailed pollen testing done by him. We have started a course of sublingual drops aimed at desensitising Sam. Next, we are going to start the tests to find out what other more subtle food or environmental allergies he may have. As we do have quite a family history of allergies, that seemed like a good place for us to start.

 

5. Being open with others about the TS. I have found that people have been incredibly kind and helpful when we have told them about Sam. I think it's so important to spread the word about this syndrome and to make sure that people understand why Sam does what he does. Most people just don't know much about it. I have been sharing around my video of the HBO documentary "I have Tourettes but Tourettes doesn't have me" with other parents and teachers. As a parent of a TS child, it can be hard to watch, but it's SO helpful to others to understand that these are normal kids who just want to be treated like everyone else (it recently won an Emmy, I believe). I'm hoping to have everyone at Sam's elementary school (he starts Kindergarten next week - gulp!) watch this soon. I just think it's better to be up front with others rather than have them look and whisper and speculate about what's going on with him.

 

So, although things may not look any better to others than they did a year ago, I feel positive about where we are. Just getting to this website made me feel that I had one foot on the right path, and with enough little baby steps and maybe the odd diversion, we can start to move in the right direction.

 

Please don't despair. Just getting to this point means that you are starting to take control of the situation, and it's a good feeling to start to take measures that could potentially help your child.

 

OK - so much for the "quick" reply! Now I'm just going to try to post this... Here goes...!!!

[kim]

Hi Kelly, momto3ts and Samsmom,

 

Samsmom, I have to tell you what a super, awesome, wonderful post that was

 

Congratulations on trying to find out what the source of the problem is for your children. I'm doing the same thing with my two boys, ages 9 and 13.

 

I personally think that we all found this site for a reason. Thank you for deciding to share all of your stories.

 

Again, welcome. You're in good company!

 

Kim

[Chemar]

Samsmom...welcome to Latitudes and thanks so much for sharing your very encouraging and insightful post

 

mom23ts and Kelly

I hope you have found good info in the threads I bumped up last night and do just keep asking questions

 

we have a great group of members here who have accumulated a wealth of experience and knowledge and who share it freely and caringly!

[kelly]

Thank you to everyone. All your posts have helped me, now I am going to try and use the information to help my son.

I still wish every day that a doctor is going to say, Oh, that's not ics, that's Blah blah, and we happen to have a cure for that. But I guess that's just something I have to deal with.

My son's tic has ben present for a little over 1 1/2 years. It has always been the same. I read a lot of tics change, but his hasn't. They come out mostly when he is watching tv, bored or tired. If he is playing or swimming, nothing. He can sit and play a game and never do it, but then later do it 5 times in a row. His tic involves his face, clenching hands and arms and if standing, jumping. It happens all together. It's like a yawn gone bad. Has anyone had motor tics for a long time, then developed vocal and diagnosed with TS?

And does this sound like a tic anyone else has had. And should I do or say anything when it is happening?

I also think my son's behavior is being affected, but it's hard to tell if he's just being a brat or if it's something else. And I don't think it makes it better that I treat him like he has a fatal disease, being easier on him, which I'll only admit here.

 

It's nice to have this place to talk and ask questions. I think it's helping me get over, "it's not fair" and "why did this happen to my family". Which I know I have to do in order to help my son and keep my family stable. I sometimes feel comsumed with my son and I know I am neglecting my daughter. It's a balance that we need to find it.

 

Again, thank you.

[Chemar]

Kelly

just to encourage you even more.......the fact that your son has had motor tics without any vocal for over a year lessens the likelihood that he has TS.....also, in the vast majority of cases, nonspecific childhood motor tics disappear as the child gets older. So your son may well fit into this category, especially as he doesnt seem to be showing the waxing and waning so characteristic of TS

 

however, even if the tics do persist and even if TS does develop.............be assured that he can still enjoy a full and very happy life. Tics can be frustrating, and yes,sometimes painful (physically and emotionally/socially) but they do not need to be the be all and end all of life.

 

Honestly, the best gift you could give your son is to try to "ignore" the tics, and not let him know that you even notice them. This will make things a lot easier for him, and will also enable him to feel just like a regular little guy. Rather just do your special care more in the background.......keep records and try to identify triggers and eliminate things that may be causing problems, but do it subtly and as unobtrusively as possible. It is SOOOOOOOOOOO important for a child never to feel that they are being deprived of something (therefore in their mind being punished) for ticcing.

 

Also, as far as behaviour goes, dont let up on sound parenting and discipline. Yes, certain allowances have to be made when our kids have issues they cant help (this is especially true of TS kids and those with OCD and ADHD etc) but it is still your responsibility to prepare your child to be able to integrate into society, and so gentle but effective discipline and guidance re bad behaviour is essential

 

Most of all Kelly, dont become obsessed by your son's tics. It isnt good for him, or you, or your daughter and husband. remember too to take time for some R&R for you! A burned out mom aint no good to anyone in the family

 

(((hugs))) to you Kelly, and to momto3ts and samsmom......... and to all the moms (and dads) reading this who are feeling worn out and weary. Give yourselves a pat on the back because just by being here and trying to learn about all this, you are showing what very special parents you are.

[momto3ts]

Hi to Everyone,

 

I just wanted to say THANK YOU for all of your responses. I, too have been reading the forums for days and just finally registered to send my last post. I have never done anything like this before...I am so happy I did.

 

We all have so many different situations and can come to the "table" with ideas, tips, information and encouragement. I'm so thankful to have found Latitudes and this forum. It's hard to call up your girl friend or your mom and vent or discuss the latest thing you read or the lastest tic thats happening. Nobody understands unless you are faced with it. Although now I have found a comfortable place to go and to ask questions or bump ideas off you. Can i say thank you enough????

 

Thank you to Kelly, Chemar and Samsmom....Your post was amazing, it brought tears to my eyes as I was reading it.

 

I'm just so saddened that my son is going through this. Along with his tics which are both motor and vocal (and loud), his ADHD has increased so rapidly, it just makes me so sad. And very nervous for school, we'll see what happens next week.

 

I also have two other daughters and certainly don't want them to be ignored or looked over because my son is going through this, but it's so hard when all you want to do is read, read, read, to find an answer. I guess I am actually looking forward to school so I can atleast reasearch during the day.

 

Thanks for listening, I will be back often and plan on continuing the search, I hope you don't mind if I throw out the occasional question time and again.

 

Momto3ts