Tics are causing sorrow!

[mar]

So ds has been ticcing lately. Yes I have noticed and yes Am very sorry for him. But today comes home from football practice and see his lips red and is making facial twitches with lips and says its cold out and it bothers him. I see the licking and red lips lips as he is telling me something and he saids it's better then being crossed eyed. He has been crossing his eyes and I would think this is better. But this just killed me because he would rather do eye tic then have red lips. This is so hard to see him struggle! He has been doing so well and has gone downhill with the tics. I hope his. Lips get better. I guess just the pain of seeing your child suffer is wrong. I constantly have that feeling of what I could do. Just venting some what.

Mar

[AmySLP]

Not that this solves the problems of the tics, but my daughter had the lip licking tic & I found that if I put Vaseline on her lips heavy every night, it helped a ton to keep on top of them. It's actually so painful for them- I remember my daughter had such issues with eating beause her lips burned so much from the constant chapped state from the tics she had at the time.

[EmilyK]

So ds has been ticcing lately. Yes I have noticed and yes Am very sorry for him. But today comes home from football practice and see his lips red and is making facial twitches with lips and says its cold out and it bothers him. I see the licking and red lips lips as he is telling me something and he saids it's better then being crossed eyed. He has been crossing his eyes and I would think this is better. But this just killed me because he would rather do eye tic then have red lips. This is so hard to see him struggle! He has been doing so well and has gone downhill with the tics. I hope his. Lips get better. I guess just the pain of seeing your child suffer is wrong. I constantly have that feeling of what I could do. Just venting some what.

Mar

I really empathize - been struggling this week watching my DS flare up again. Makes you want to stomp your feet and yell about it not being fair just like his little brother does!

[Missmom]

So ds has been ticcing lately. Yes I have noticed and yes Am very sorry for him. But today comes home from football practice and see his lips red and is making facial twitches with lips and says its cold out and it bothers him. I see the licking and red lips lips as he is telling me something and he saids it's better then being crossed eyed. He has been crossing his eyes and I would think this is better. But this just killed me because he would rather do eye tic then have red lips. This is so hard to see him struggle! He has been doing so well and has gone downhill with the tics. I hope his. Lips get better. I guess just the pain of seeing your child suffer is wrong. I constantly have that feeling of what I could do. Just venting some what.

Mar

Is he on abx? Can you get a doctor to rx him anything? Abx help my sons tics. It usually takes a few days to get into his system but gets him to about 95% better. He has also had the lip licking. We used heavy Chapstick. My son is always extremely bothered by the blinking tic when it happens because it hurts his eyes to blink so hard and so much. I know it is awful. I feel your pain.

[beeskneesmommy]

I feel very sad when I read this. I am sorry. My son is only 6, but his vocal tics seem to be getting worse with age. Breathy exhales and thraot clearing started last April and have waxed and waned since. He has just had IVig 2 weeks ago, and although they seemed to be falling off a little, they were back in full force last bight. I cringe to think of how he will be treated by his peers as they get a little older and notice the differences. Hopefully, the impact of the IVig will continue to help him improve with time...but for you - I hear your sorrow...

[MMC]

It is very hard to watch a ticcing child and not be able to provide relief. This has been the most difficult symptom with our DS. DD has had tics as well, but her ADD is her worse symptom, and I guess it is from PANDAS. DD's tics have decreased over the years, as did mine once I got a few years past early teens. DS really struggles with his tics. If we could just get this symptom under control for him, he would be a much happier child...but have not found the complete solution yet. We are hoping time will help as it did with DD and myself.

 

He did actually just start a new med from Dr Latimer, Keppra. It is a seizure drug and is supposed to reduce tics as well. Hard to say if it is helping, but we are going to give it some more time. DS had a flair in tics a few weeks ago, when he got a cold bug. Even before he got the bug, his tics increased when DD was sick with it...so, it sure seems to be an autoimmune / inflammatory reaction. We just don't know how to completely heal or break the cycle. So, unfortunately, I don't have a solution to offer, other than...try NSAIDS twice a day, use a med in the evening such as clonidine to help relax and get to sleep, benadryl in the evening when needed.

[Fixit]

I weep as I read this. I am so sorry.

I need to state that even if the tics do not respond to ivig that does not negate the fact that they are triggerd by infection.

Just like others who are treating ocd with ivig, I cannot say that i am reading 100% recovery with that. That they either need multiple ivigs or other interventions and medications. And even with he added side items are not 100%. So to say if ivig is not recovering the tics, it is not infection driven is a big mislead. As some do get recovery of tics from ivig. UNfortunately, i think it also triggers some other path for some ticcers, or those who have had Multiple or on going infections.

 

I wanted to post as my ds was almost house bound a couple of weeks ago from progressive worsening.

 

I am not quite ready to post everything that i am doing, as i have not formulated all of my thoughts, connections and some theories(not that they are orginal either). BUt we are miles away from where we were a few weeks ago. Don't quote me on this..but he was realtively a 9 or wosrse on the tic scale, to roughly a 3 or better, give or take.

 

The only reason i am posting this statement is because it pains me(still crying)to know what you and your children are going through.

NOt saying i am still not going through it too.

 

I do not think i have all the answers for my ds yet, but i might have some correlations for ticcers. These infections have triggered some other cascade in the body, not just to the basal gangilia, but a larger disbiosis in the gut.

From finally listening to MY gUt, adding info from llm, Bonnie Grimaldi, fcefxr, stephanie2, Dr T. theories, SFmom, listening the clues that work from other people that fit my lead/gut, that make sense in my mind and some other offline friends, DS is in a much better place.

 

I will always be fighting for full recovery. I can remember him without tics. I am still shocked every morning that he has them, everytime he walks in the door and they are still not gone, when i talk to him and he hasn't had a tic in 5 minutes and one happens, I just can't believe it. I have an oh-wow they are still there reaction. He is not his tics. I know stopping them is do-able!

I am still researching as most of us are, whether we are trying to squelch rages, ocd, ts, etc...

[MMC]

Fixit, if you find the magic bullet, let me (us) know...those that have ticcers. I know each child is different. Our DS does not have chronic strep and has had his tonsils out. His bloodwork all looks good, at least the things that have been checked. He stays on Augmentin 500mg a day and has tried all the usual antibiotics while being treated for Lyme/co-infections. We just can't find whatever lingering thing that is causing the tics. He has delayed growth and puberty. We are hoping puberty and some age will help close the BBB. This seems to be what happened to me. DS is tired of going to doctors and getting blood drawn and hearing new theories about what will help him. He is 14 now and is saying, just let me be. But, I don't want to give up and want to help him so much.

 

Even this last plasmapheresis he just had this summer did not help his tics, at least not yet. Dr Latimer said give it more time. We were hoping T&A and PEX would be the magic bullet...it didn't hurt and glad we did it, but he is still struggling with tics. Although, it seems a lot of other symptoms have lessened, so maybe there is hope he will continue to improve.

[Fixit]

Fixit, if you find the magic bullet, let me (us) know...those that have ticcers. I know each child is different. Our DS does not have chronic strep and has had his tonsils out. His bloodwork all looks good, at least the things that have been checked. He stays on Augmentin 500mg a day and has tried all the usual antibiotics while being treated for Lyme/co-infections. We just can't find whatever lingering thing that is causing the tics. He has delayed growth and puberty. We are hoping puberty and some age will help close the BBB. This seems to be what happened to me. DS is tired of going to doctors and getting blood drawn and hearing new theories about what will help him. He is 14 now and is saying, just let me be. But, I don't want to give up and want to help him so much.

 

Even this last plasmapheresis he just had this summer did not help his tics, at least not yet. Dr Latimer said give it more time. We were hoping T&A and PEX would be the magic bullet...it didn't hurt and glad we did it, but he is still struggling with tics. Although, it seems a lot of other symptoms have lessened, so maybe there is hope he will continue to improve.

 

OH MMc, i wish it were a magic bullet.

i am writing down what i am doing. I've been trying to stalk a couple of moms that i think might have a realivant piece and i have a couple more dr's i am talking to, in order to continue this exhasperating journey toward healing.

 

We did pex with no avail either. Something is in the gut!!!! Or something has happened to the gut, because of multiple strep infections. His tics progressed from a simple tic, to a motor after 6-9 strep infections, with comlplete remission in between. Then from a single motor, to gross, complex, chaining, motors and vocals after 4-5 more infections that also had complete remission between them.

With that, his allergies have gotten way worse every year, NOT BETTER.

 

I am going to post what is happening here once i can write it up in a coherent sentence.

Again there isn't any earth shattering info going on. Just some pieces think i have and I wonder if they all connect. And even if i am on the right path can i get him to 100% and live something closer to a normal life. I feel like i am trying to heal a subset of crohn's disease. We are living a very restrictive life right now.

 

Remember, my other 2 boys are triggered as well, but in remission. But both of them have only been triggered 1-3 times. By their perspective ages, DS12 had been trigger 6-14 times.(no one would listen about the strep/tic correlation that i was insisting was there, and the new thinking by science of keeping tonsils just became popular and we did not have them removed until he was 10ish, should have done it when he was 5)

[mar]

Thanks for All the replys. I cried myself to sleep last night which is something j haven't done in awhile. If just kills me how things could change so quickly. He goes to football with perfect lips and comes home 2 hours later with red lips and moving them nonstop. it really hurts so deep inside because I feel like I always can help with every bruise, cut need of a hug or a shoulder to lean on. But with the tics and seeing the look in his eyes makes me want to scream because I feel so helpless!! And I could only image what he feels and is going through. It's not fair for these kids!!

Mar

[Missmom]

I read a post a while back where someone had success with folic acid supplements. I have not tried this yet but it is in the back of my mind as something to try if needed. If I remember correctly she was giving twice the reccomended daily amount and it took several weeks but stopped all tics. If anyone else has had success With folic acid please chime in.