Ugh, another one of my kids has started to tic

[mythree]

I have been dealing with my 10 yr old daughter and tics since she was about 5. We have had her on a very tight regime of supplements/vitamins and eliminated artificial dyes / colours. She had been doing amazing - I almost started to relax and forget about it. I was really enjoying life again. But then she had a bad flare up before Christmas. She also started to have some OCD type behaviour. I am sure it is because she was eating lots of 'junk' food at Christmas parties at school, dance etc without us knowing. Plus the change in routine, excitement, anxiety etc.

 

But now, over Christmas my other daughter who is 5 started a constant throat clearing. She had previously had a cold so we boiled it down to her being sick before (even though in my heart I could tell it was a tic by its pattern. I just couldn't let my mind go down that path again. Well that tic did pass, but now the last few days she has started to open her mouth wide like a goldfish. Over and over again. I feel completely deflated. I don't even feel like I have the energy to do this all again, while still trying to get my other daughter back on track. She is the baby of the family too - and I know the long road ahead of us. I guess this is more of a vent then anything. UGH!!

[mommyfor4]

I totally know how you feel. Our seven yr old daughter started some vocal tics around Thanksgiving last year, we took her off dairy and they went away. Added it back voila!...there they were again. So off dairy since and tics are gone. Then the last month or so our three year old daugter has started with what sounds like a self soothing noise...hm,hm sort of thing. May just be that... as she only does it when relaxing or tired but my back is up and radar is at full. It sucks to constantly be watching the other kids and almost waiting for the bomb to drop! On the other hand, I keep reminding myself that at least if it is a tic disorder developing I am so much farther ahead this time and maybe I can minimize by taking precautionary steps...diet, multi etc. Seems to be working so far for our 7 yr. old...knock on wood! The three year old is soooo much more like her brother in every way that her noises actually trigger a bigger response in me. Holding my breath and hoping it is a passing three year old phase So I guess that's my long winded way of saying...I get where you're at and know that knot in your stomach and my thoughts are with you. Hang in there...

 

Megan

[cloudy]

Hi there

Sorry to read your update. It could be transient and pass.

We saw an Allergist at the weekend who confirmed that although my son wasn't allergic to milk products as such, it still might be worthwhile taking him off Dairy as it is a big mucas producer. He is a big milk and cheese fan. So far we are a week and a half into this and although no change as yet he is in the middle of a cold.

Hang in there.

At least you know all the right things to try.

Sal

 

Ps - Quick question - you said your daughter started to have OCD type tendancies, has she never had these before?

Edited January 26, 2011 by cloudy

[mythree]

Thanks for your replies. It is so nice to be able to come here for support from people who 'get it'.

 

Megan - I know that I am further ahead then I was with my first child for I have done so much research. But when my older daughter had her set back over Christmas it really made me realise that all I can really do is control these tics. I really wanted for her to be cured, but I dunno... I will take 95% control anyday - that is where we were before Christmas.

 

My youngest is so like her too. Except she is so much more aware. My heart broke tonight when I went up to dance class and she was having her break in the lunch room and she was eating and she kept doing the mouth stretching thing and the other kids were saying 'gross and sick you are showing us the food in your mouth, keep your mouth shut while you are eating.' Of course the more they said it the more she got anxious and the more she did it. I had to step in and distract everyone.

 

Cloudy my other daughter has had some OCD type flare ups in the past. However, she is becoming much better at talking about them. I am surprised at how much this kid holds inside and hides from everyone. The flare up seems to have calmed down. It seems overtired, over stressed and artificial colours/sweeteners really set her off.

 

Thanks again for your support.

[mommyfor4]

Lisa, I am so sorry! I think that is one of the hardest parts of all this, we can try to minimize our kids tics but unfortunately we can't always protect them from other kids reactions...that age group can be particularly blunt and prone to teasing. Is your youngest also on the multi and Natural Calm? So far the multi is not changing our three year olds "tic" but it seems to be helping with our seven year old. I think, unless it is just keeping her off dairy?...who knows. I now have all my kids taking the multi and epsom baths regularly, hoping it may have some preventative action...sometimes it all just gets overwhelming again no matter how far we think we've come. There are days I think what are the chances that he would be the only one out of four? What if they all start? Am I strong enough? Don't know that either, but like you said...talking to parents who get it and live it is such a relief. Please keep updating...

 

Megan

[evol]

I completely empathize with you. We have tic disorders on both sides of our families so when my 8 year old dd started ticcing at 4 1/2, my hopes and dreams of not passing the disorder on to my children vanished. My 4 year old son has exhibited certain behaviors at a very young age that make me convinced he will also end up with "it". I also have a 3 year old dd. I wonder, "will all three of my children have this dreaded disorder that I know I directly contributed to?" I think the worse part is just waiting for the other shoe to drop and wondering what coarse it will take. I agree that it is so emotionally draining to go through this process, and the thought of having to go down that road with another precious child seems impossible at times. I try so hard not to dwell on what might be and be fortunate for how bad it isn't. One day at a time, right?

[mythree]

Yes it is like waiting for the other shoe to drop all the time. My 7 year old seems fine right now, but who knows.

 

My 5 year old started crying this morning and asked me why does my mouth keep doing this? I'm not doing it, my mouth is doing it. I acted like I hadn't noticed. I explained it to her like I did to my older daughter when she was younger. I said 'don't worry it will go away' because she kept crying please make it go away. My older DD said 'yep - still waiting for mine to go away too. I've been waiting a long time'.

 

I'm still in that crappy place right now - so that is why I am thinking I am tired of it all. I am tired of only half listening to conversations with other adults for I can see my daughter doing a crazy tic and my heart has frozen for kids are starting to look at her. I'm tired of having to cut conversations short to 'save' my DD and re-direct things. When we go on outings with her team, all the moms are sitting there carefree chatting and so are their kids and I can see my daughter desperately trying to hold her tics in or jumping up from the table and trying to let them out.

 

Yes, my 5 year old was on the multi anyways and I have added in the magnesium and I gave her an Epsom salts bath yesterday. I think I will try an elimination diet with her. She did the dairy free one when we tried for my other DD, but she didn't have tics at the time. So I will try that one first.

 

My 10 year old seems to be doing better again. So that is a really good thing right now.

 

On a positive note! I heard my 10 year old daughter talking to my 5 year old and was giving her a big hug this morning totally unprompted by me. Just quietly saying don't worry about it, and you look so pretty today, and your mouth habit isn't a big deal. Then she was hugging her and said if you need me during the day just come up to my class. So that was really special and I'll hang on to that right now!!

Thanks for listening. Don't know what i'd do without the people here.

 

Evol - you said the disorder was passed to your children. Did you have it? If that is too personal please don't answer it. I was just wondering - that your perpective would be different having lived with it all your life and knowing all that goes along with it and then seeing your children with it. sorry if that was a personal question.

 

Megan - do you have all your kids on the dairy free diet?

Edited January 27, 2011 by mythree

[mommyfor4]

Hey Lisa,

 

All my kids drink Almond milk, no cows milk in our house! But I have not been super strict with the girls about cheese and yogurt until our seven yr. old started ticcing as well. Now we only have minimal cheese on taco night every 3-4 weeks and kefir every 3-4 days. We eat mostly by his dietary restrictions, the only acceptions being rye bread etc for the girls lunches. That may need to be the next issue but we'll wait for now as I try to limit it anyway. My husband snuck white bread into the house the last couple shops and I am suspecting that may be the possible trigger for the three year old, needless to say it's gone now (the bread not the tic), waiting to see if things clear, but I'm still unsure if hers is anything more than a toddler transient tic or self soothing behaviour. I guess my thinking is: if he shouldn't be eating these things, should any of us? Still feels like a wait and see for us...the thought of the whole family going totally wheat free feels huge right now, even though probably 85% of our diet is already. At this point I am trying to minimize the wheat and rotate as much as possible, watching for issues with the other kids. So far only my 5 year old has never shown any signs of tics. The others two girls have at some point had eye blinking(although short lived) and at least one other repetitive noise (again transient) so it's a wait and see for us. I second your Ugh!

 

Megan

[Cj60]

I'd just like to chime in that you all are amazing parents. My hat's off to you all!

The extra worry and the extra work you all go through really make things tough, but you don't back down.

Not everyone can say that! Rest assured that, in the long run, your kids are going to be well off for all of this.

 

I do my best to keep in mind that, even though it seems like others don't have their own struggles because we don't notice them, no one gets through with a free pass, so to speak. Things get tough on all of us at one point or another. The older I get the more aware of this I become, and of the fact that places like this with people like you are so important!

 

Chris

[patty]

mythree,

 

sorry to hear that your other kid has some symptoms too. it could very well be temporary.

 

in regard to your older daughter's OCD, my son has similiar issue. he started w/just tics, and i have seen some very minor OCDs that comes & go, then last summer, the OCD spiked. anyways, we had success w/NAET treating his tics, so we tried treating his OCD too. the OCD went away then came back when he started his orthod treatment. we did more NAET w/about 50% improvement, then i added inositol, B6 and a multivitamine and it seems to keep the OCDs under control. in addition, i also give him quercetin, vitD, juice plus to control his immflammatory response since my son also has allergies and asthma. i do believe that by controlling the inflammatory response & histamine it helps w/tics & OCD.

 

hope this is helpful.

[evol]

My situation is probably unique. Yes, I have undiagnosed ts. Well, I saw a doctor once at age 21 and he prescribed clonidine. I took it for a while but it made me soooo tired that I just quit. Started ticcing around 7 and turned into full-blown ts around 14. It was never really addressed growing up other than my parents telling me to stop. I think they were just too embarrassed by the whole thing. They would threaten me by saying "if you don't stop by the end of this year, we are taking you to the doctor". I didn't want to be labeled as different or come to terms with the fact that there was something really wrong with me, so that scared me. I don't think that's all bad, however. I was very social and fine with my peers and am sort of glad I didn't have that "label". My late teen years and college were the worse, probably from stress. Sharing a dorm room was very difficult without having any privacy. I tried my hardest to control it and don't think I would have so much if it was out in the open and I think my symptoms would have been more rampid. I think it's an aweful and bizarre disorder to have in that you appear normal but have to contort you body in ways so you "feel" normal. It's been personally a difficult journey but in all actuality, I get along fine, aside from a small social anxiety issue. Nothing a glass of wine can't fix. My husband's mom has a chronic tic that comes and goes and his brother has chronic tic/OCD issues and my husband has some compulsive issues. None of them ever talk about it either. My husband's point of view is that everybody has something and no big deal. I don't think he knows how bad it can get and that's where I feel like I'm carrying all the stress, anxiety and burden. Even though he was with me since high school and has seen me for who I am, I've never talked about it with him so he has no idea what I've really gone through. I've gone on so long without talking about it that is seems like I have this huge secret. This forum is the only place I've ever talked about it and it feels so good knowing there is support out there. I keep waiting for the day that I have to have the "big talk" and I have no idea how he'll react. I think that is why, for me, the stress is doubled because I not only have to deal with my children's issues but the role I play in all of it. At this point, I don't even care about myself, I just want my kids to be healthy. I would take on symtoms a million times worse if it could spare them. I haven't ever mentioned the ticcing to my dd. I don't want to make her self-conscious about it and right now it's managable. It it worsens, then I'll deal with it then. Since my symptoms didn't worsen until I was 14, I'll be hanging on for a while. I struggle every day with the question of was it right to have children knowing I could pass this on to them. It's a gamble and 20 years from now I can better answer that.

[mythree]

Thank you Evol for being so candid and honest about it all. It is interesting (and honestly scary to hear it from a person who has been there before). I really feel for you - and I really wish you wouldn't feel so responsible for your daughters tics. I know I can say to you that you shouldn't feel that way, but as a parent I know we feel responsible for any hardship our kids face. I had asthma all my life and when my daughter had lung issues as a baby I felt awful, like it was all my fault. I know that is nothing compared to what you are going through. I agree if I could take all these tics and struggles that go along with them for my kids I would in a heartbeat. I don't want this for my children. I don't want this to be something they are continually thinking about and trying to control. When I read your post - and how hard it has been for you trying to hide or control your tics all your life, it sounded exhausting. And sad, that you couldn't just sit back and relax and enjoy having a roomate and school life without having to worry about your tics and surpressing them.

Don't ever doubt your decision to have had kids, even if they have got this disorder, for along with it comes a wonderful life and a wonderful mother who will be so much more aware and strong to help them go through life.

Thanks again for your reply and all your information.

Hang in there!

[ilovedogs]

Patty,

I thought the ortho treatment was going well, I didn't realize that he had an OCD spike afterwards. I am totally debating when to put braces on my son. His teeth are so crowded and he has an overbite and the dentist is now pushing for them but I'm so afraid it will increase his tics or OCD stuff. He's been doing so well for the past 1.5 years, mostly with the anxiety as we still have the tics that wax and wane. Technically, I know we could wait forever to put braces on him but he's 12 and that's the age when many of his friends are getting them and when it seems 'popular'.

 

Just wanted to add that I agree with Chris: you all are amazing parents for doing what you are doing with your kids!

 

 

mythree,

 

sorry to hear that your other kid has some symptoms too. it could very well be temporary.

 

in regard to your older daughter's OCD, my son has similiar issue. he started w/just tics, and i have seen some very minor OCDs that comes & go, then last summer, the OCD spiked. anyways, we had success w/NAET treating his tics, so we tried treating his OCD too. the OCD went away then came back when he started his orthod treatment. we did more NAET w/about 50% improvement, then i added inositol, B6 and a multivitamine and it seems to keep the OCDs under control. in addition, i also give him quercetin, vitD, juice plus to control his immflammatory response since my son also has allergies and asthma. i do believe that by controlling the inflammatory response & histamine it helps w/tics & OCD.

 

hope this is helpful.

[HT's Mom]

I'm just curious - I have a child with PANDAS, who originally started with Tics, diagnosed as Tourettes, of course, then OCD. Turned out to be an undiagnosed strep infection and PANDAS - treated with antibiotics and virtually all tics and 100% of OCD behaviors went away.

I just happened to look at this forum and started wondering if you parents with children starting Tics check strep and rule that out?

[mommyfor4]

I'm just curious - I have a child with PANDAS, who originally started with Tics, diagnosed as Tourettes, of course, then OCD. Turned out to be an undiagnosed strep infection and PANDAS - treated with antibiotics and virtually all tics and 100% of OCD behaviors went away.

I just happened to look at this forum and started wondering if you parents with children starting Tics check strep and rule that out?

Hi HT's Mom, we personally have looked into PANDAS but our son does not fit the criteria and we do have a family history of Tic Disorder. My husband and his uncle both had undiagnosed Tourettes or Chronic Tic Disorder. My son did have strep many years back but his tics were present prior to the strep and my girls have not yet had strep at all. For us it seems to be a hereditary thing, what pulled the trigger I can't say...our son is doing well on dietary changes and a good multi and Natural Calm, may be time to look for food issues with the girls next. Our first clue that something wasn't right was his reactions to antibiotics and any and all over the counter meds. eg. Baby Motrin etc. and his reactions when immunized, he had some form of reaction every time, his baby sister seems to be similar and she is the one who seems to be developing some form of transient tic. For now we have to just wait and see.

 

Megan