Severe screaming Tic

[cara615]

So for about a week now my son has developed a screaming tic which happens about every 5 -10 seconds. Its unnerving and hard to live with. He also has about 5 other vocal tics which he alternates with the screaming one.

 

So we went back to the holistic doctor because everything we started on a month ago has made things WORSE. The results of our ALCAT came back and my son is allergic to corn. Obviously its a sensitivity because he has no reactions to it other than eczema and possible inflammation in his gut which we can not see.

 

So now we need to eliminate corn which is impossible as you may well know because its in everything.

 

We are stopping the magnesium and taurine cause those are not working either and we are starting on 5-HTP.

 

My question is, since his tics are so severe right now, should i expect it to remain like this or will it go back to being very mild as it once was. I am so scared for him and myself right now.

 

I just need some hope.

[logismum]

Hi

 

Just wanted to let you know that my sons high pitched, ear piercing scream (my ear drums were so sore and ringing) did decrease. For us about a week after it started it did lessen in how often it happened and then eventually the volume of it did as well but it was probably a couple of weeks before it totally dissapeared

 

My son also reacts to corn and it is hard to get it out of the diet at first but take just take it a day at a time.

 

Also wanted to say that at first i had my son on about 3 different products from our natropath while trying to do massive diet changes, it was hard for me and harder for him. I ended up deciding i had to calm down and take it slow and steady and get back to basics. For us due to candida/leaky gut being a big possibility i decided to first get the diet under control, eliminate what i had to and watch for triggers in other foods. I then took him off everything and started again, Again for us that was dealing with the gut first even though our natropath wanted to deal with that 5th down the list i knew it was important. So my son has candaplex, a probiotic and a really good multi vitamin, Thats it for now and he is doing well, If he didn't have his vocal "Ah" tic every now and then no one even know he had tics. I believe for my son most of his improvements are due to the diet changes. We still have lots more to investigate and test for because i believe he has some allergies or intolerances but things have definitely improved since the start of the year.

 

Over time you will work out what your son needs and what works for him but it really does take time. I tell myself i need to allow at least a full year to figure out this jigsaw puzzle and fingers crossed at the end i can work it out.

 

Not sure if that helps but i hope it gives you some encouragement

[Chemar]

Screaming tics are really so hard! We feel for you and your son.

My son did have it in the early days after his TS dx and helped a lot by a short term course of l-Carnitine

 

5HTP elevates serotonin and is usually helpful for OCD or tourettic OCD in those that tolerate it...but I am not aware of it being used just for tics per se?

 

Please remember that *if* this is TS...you are going to have periods of waxing and sometimes you may not know exactly what is causing them...it is a characteristic part of TS

 

Going corn free is not as hard as it initially seems...my son has been corn free for many years now....he did not test positive for any allergy to it, but it was clear he was sensitive.

[cara615]

Thanks for the replies. I do believe that he displays OCD like behaviors as well. He picks his cuticles, has to touch certain things 7 times, bits the inside of his mouth, has to have blue plate, blue whatever, has to be first or he gets upset. Etc. etc. anxiety is his big trigger and if seratonin can relieve the anxiety then maybe we can get some relief??

[cara615]

We had company over yesterday (a friend and her nephew). I am wondering if all that excitement combined with school ending and kindergarten starting and allergies are causing this severe behavior. He is still screaming today but is using more of his grunting vocal instead of the full on screaming. We are seeing a neurologist tomorrow at 2pm just to get a dx and see what he has to say. I believe in the holistic method, its just that we have been working on things for over a month and everything is worse. Maybe I have increased his anxiety with all the diet changes/supps and HANDLE therapy. Maybe he is feeding off all my anxiety. There are so many things to consider. Out of all the mothers in the world, I am the WORST one to have been dealt this hand. I do not respond to these things well and am in a deep depression right now. i may need some of that 5-HTP as well.

[logismum]

I'm going to ramble again!

 

I totally feel where you are at, I really was there only a couple of months ago and so many others on here have been there in the early stages to. Yes things got worse before getting better for my son and also when it comes to my kids i am the biggest sook. I'm also an over thinking and major researcher so i made myself physically and emotionally sick with all of this. I couldn't eat, i Couldn't sleep - i still don't get much now. I'm always thinking about it but it is gettting lesser.

 

I pray to my angels and talk to my dad who has passed all the time asking for guidance. I tell myself that this happened to my child and our family because for us we needed the lifestyle change, our son needed the new eating, the clean living and the universe knows i won't ever, ever give up on my child.

 

I hope you can find the strength to keep going, You are doing a great job just by being on the forums, asking queestions, taking your son for help. I have faith that in a year from now the situation will be majorly improved for both our sons.

 

Take care

[cara615]

You are so kind and your posts make me feel better We are the same. I am now 98lbs and wake at 3am every morning. Its not good. I know I need to take care of myself. I went to Whole Foods today and got many things that I "think" are corn free. Some contain xanthan gum or ascrobic acid. But I have to start somewhere right?

 

By greatly reducing corn will I see results or does it have to be COMPLETELY eliminated 100%?

[mar]

Cara 615

You are not alone . You and your son will be fine just keep strong. I lost 15 pounds the first year. J couldn't eat, I could not sleep, I woke up every morning with this scary feeling of dread thinking to myself will I make through the day. You will be okay just stay strong and eat. My son needed 28 things eliminated at that time not corn of course. But in the beginning we I did the best I could. You start off slow and be gradual. I think back now and now realize how crazy I was. Start off with limiting as much as you can. Remember are children will not have an emergency reaction and have eaten this their whe lives. From what I have seen taking a food product out wait and see. Every little helps and in my case it was not overnight. It took months of diet and then you notice certain things and vitamins but over time it makes a difference and you will be patting yourself on the back!! Keep strong and do what you can. Do not beat yourself down bc you are here and you are learning and you are trying! Your child is lucky to have you as a mother?! aniexty and excitement is a trigger here also. Over three years later I now wish I could lose 10 pounds:) I am a very stressful person also and have also felt like why me I can't handle this. You will trust me because it's your child.

Mar

[cara615]

Mar - how is your son doing now? How are his tics? From what I read holistically and western medicine wise, nothing will really get rid of the tics. This is something I am have a very hard time coming to grips with. I keep having panic attacks and if you have ever had one, you know how it feels. Like you are going to die. I am in a very bad place right now. I know I need to be strong and I am trying to. We see a neurologist today just to get an offical dx and see what our options are. I plan to stick with the holistic route as well. But I need hope that we can live a normal life with the occasional tic. I think I can deal with that.

 

Today his tics are lessening. Still screaming and yelping but its more intermittant. It was so bad this weekend, that he didn't even talk to us. He just kep ticcing all day long. About one a second. For a 5 year old to act this way is beyond alarming. Makes me scared for when he is 10. If its this bad now then at 10 he could be incapacitated by them.

[Chemar]

Cara

I am going to share something with you that was a big wake up call for me about 14 years ago when my son's TS tics began to manifest big time......... I was in a very "woe is me, woe is my son" phase and I know I was making things worse for all of us as my distress was causing him stress and so intensifying his tics and OCD etc etc etc.......

 

Someone wisely told me to "get a grip...it is TICS, not cancer or some other terminal illness!" They suggested I go read a forum that was for parents whose kids had terminal diseases ....and how those parents were treasuring every moment they had with their kids....

It left me realizing that I was allowing the tics to dominate our lives, and steal precious time from my son and our family.

Once I got my own emotions and reactions under control, I saw the first real improvement in my son. It also gave me the ability to begin to find the treatments that have so helped him over the years, because I was focused and not in a blind panic all the time, trying everything that I heard about without really knowing what i was doing!

 

Please know I do understand how you are feeling....but your son having tics is NOT the end of his life, or yours. My son is now in his 20s and his tics are an almost negligible aspect...and have been for some time now. So know there is much reason for hope and yes, this too will pass. As my avatar shows, there IS light at the end of the tunnel...keep your focus there and not on the darkness.

 

That wise friend also told me this...which I have in a thread here.(click to read)

It's OK To Tic

[cara615]

Just got offical dx of Tourettes + OCD from a neuro that specializes in espilepsy. I wasn't thrilled with him. He thinks my son's tics are very severe (obviously because this is the worst its ever been). Its been pretty mild up until now. He wants to put him on Clonidine. I declined for now because we are on the homeopathic regimen. But as you can imagine, that appointment was very very traumatic for me.

[logismum]

Glad you got the dx for your son, Will help with schooling and anything else that is available to you by having it. Some Dr's also haven't seen a lot of cases of ts so what they think is severe may be what another dr thinks is mild. It may even help you to watch some youtube vidoes of others ticcing so you can see the difference in ticcing scale.

[cara615]

I decided to start the NAC instead of the 5-HTP. Been hearing good things about this and Yale is doing a big study on its affects on tics right now. Results into be published in July. I just gave him 600mgs and his vocals have calmed down. Maybe just coincidence.

[Chemar]

(((Cara)))

 

It will be ok

 

Sadly, most of us know the "not happy with neurologist" feeling!

 

Personally, I would avoid clonidine, though I know some have had success with small doses of it, but also depends on the brand of clonidine.

 

You will find a lot of helpful info for getting school assistance as TS is classified a disability for education under ADA

 

Just remember that even if it is TS (and no, the neurologist cannot be 100% sure!) there is still an enormous amount that you can do to make things better. But just take it a day at a time, try to keep a journal so you start to understand triggers etc.

 

We are all here for you.

[cara615]

Thank you all. (Tears)