JulesLou

@Irene123did you have a consultation with Dr Piper Gibson, if so what was the outcome? How are things now?

@Sheilathank you so much for all of the advice and information, I really do appreciate it. My son went for his second kinesiology session this week and she has prescribed GABA and a couple of other supplements so will see how we go. As for foods I have removed all additives,preservatives, colours and E numbers, my son only eats basic unprocessed food, ie meat with vegetables, rice and pasta. We have also gone dairy free and mostly gluten free. He also only drinks filtered water and he uses natural toothpaste and hair shampoo. Try to limit scents and strong odours around the house too. Thank you Jules

@Chemarit all makes complete sense, it is just trying to solve the mystery of what’s works. It would be a whole lot easier if there was a Dr that would give guidance and tests. We do not have spare money unfortunately to try lots of things, at the moment we are trying kinesiology, our second session is this week, everything is so expensive and then find that it doesn’t help anyway. I really do appreciate your help and advice, I will never give up on my son, there must be triggers and things that will help it’s just finding them. I do not stress around my son, we have a very good relationship and spend a lot of time together but unfortunately my husband is the opposite. My husband has a small head shake which I believe is a tic, talks to himself often and has a few other quirky things so probably my son has inherited tics from him. Although my husband doesn’t remember when his started and probably does not believe he has tics he just says it is a habit. My husband gets quite irritated around my son sometimes and so my son and I spend a lot of time out and about away from my husband unfortunately. I have spoken to my husband but he doesn’t realise how he acts towards my son, it’s not going to change so we just get on with it and my son accepts it. Thank you again for your help!

@Chemarthank you for your response, I have quickly looked at transmandibular joint issues, is this just the jaw as my son does not have any problems with his jaw. I am with you on stress and you do not always realise although having constant vocal tics is a big stress in itself so a bit of a viscous circle! Thank you for your reply about the GABA too, I am very undecided about this although it did contain skull cap and Passion flower which I have read good things about! So hard in finding some relief for my son and so unfair.

Sheila thank you for your reply and the link, I have spent hours on this forum looking for advice and trying different things. Nothing ever seems to work and still non the wiser on what triggers the tics even though have been going through this for seven years. Yes I try to avoid scented products we do not use air fresheners or scented candles etc. My son doesn’t go swimming because of chlorine, he has a very strict diet, no colours, preservatives or additives, you name it , we have tried it. He has Epsom salt baths every other night.. Drs in the uk are useless and say just find ways of coping with it! I reached out to Dr Piper Gibson who runs very costly programs for children with tics, in the US, her thoughts on GABA where, “she wouldn’t touch it with a barge pole”, not unless you have done genetic testing as it sometimes makes kids brains feel like they are on fire! life is so hard with this, I just want to try and alleviate it, we can deal with it but not loud and constantly every second, the only time it stops is when he goes to sleep 😞 I am so exhausted! Thank you for taking the time to reply!

Anybody used or have any thought on using GABA ? My son is nearly 13 and has constant lip smacking noises at the moment and I mean constant, every second and loud. We have had one kinesiology session and amongst other supplements she has suggested GABA? Any comments would be appreciated thank you.

Hi Irene123 I have been following Dr Piper Gibson for a long time. My son started with head nods at the age of 5, he is now going to be 13 in November and the tics have over the years turned into very loud vocal tics every second. I arranged a consultation with one of Dr Piper Gibbons staff which was very encouraging and sounded great but at the end of the call we were told how much it would cost and it is well out of our budget nearly £4.000.

@Chemari have not tried these yet, I did buy l cartinine and then accidentally bought acetyl cartinine this week and have been using. At the moment my sons noises are not loud but still does quieter ones and mutters or repeats words that he reads. At the moment he takes Pro ven probiotic, Wellkid calcium liquid which has magnesium. Zinc and vit D in it too, Haliborange Omega 3, Vit c ascorbyl palmitate. Vit c magnesium ascorbate (probably only getting 120g of magnesium a day with this) Viamin c was advised by the homeopath when doing remedies to flush system out. Wondering wether to now drop this (homeopathy didn’t work so no longer doing this) and change to a magnesium tablet so he is getting more maybe? We have not tried NAC or B6 yet! many thanks, appreciate all help or suggestions as no help from Dr or any other places.

@MLeeunfortunately no, a couple of weeks ago I made a Dr’s appointment as I he noises were very loud and constant but my son didn’t do the noises in my he appointment. I had asked when making the appointment at reception that I wanted to speak with dr alone but this didn’t happen. Anyway I complained and the Dr rang me a couple of days later and suggested anti depressants (i am not sleeping well and obviously stressed) for me so that I am able to cope better. This might be helpful to me but it’s my son that needs help which will then help me to feel better too.

@Chemarthis is very interesting reading and hopefully a bit of a break through for people in the future.

@evemacthank you for your help and advice, it is heartbreaking and exhausting. Can I ask how old your son was when he first got tics, were they vocal/motor or both and were there triggers that set them off. Did you use supplements and you say he rarely tics now, when did you start to see an improvement. It is great to hear that children’s tics have improved and gives me hope, it really is a tough journey to be taking when you have no idea of what is setting it off or how to help! Thank you, Julie

Thank you @SheilaI have looked Dr Piper Gibson up on Facebook and online I was just wondering if you had or knew anybody that had used her. She seems to good to be true with lots of success stories but obviously is the US and I am in the UK. Thank you for the link for functional medicine practitioners in my area, I also have this but not yet contacted anybody on it yet. I have contacted many different professionals but nobody has had success in treating tics so I continue to find someone/something that will help my son.

@Chemaror @Sheilahave you heard of this Dr please?

Hi everyone, whilst searching Facebook for Tics/Tourettes groups trying to find help/advice for my son I have come across people suggesting Dr Piper Gibson. She is in America ( I am in uk) but she does zoom calls and testing and looks into depth in what is going on to cause the tics. There are hundreds of people that have used her, does anybody know of her or have used her with success?

@MLeethank you for commenting, how old is your child, what p5p do you use and what dose please? I have heard this mentioned but have not tried it, my son only has small facial tics occasionally but has loud vocal tics at the moment and I am trying to find triggers and help for him (my son is 12).

@ChemarI live in the uk and the doctors are of no help, since Covid you are lucky to be able to get an appointment. I am really struggling to find triggers and anything that helps to calm my son. I think allergy tests would be a help so I will look into these. Everything costs so much money as doctors don’t help and have to pay privately. It is so encouraging to here everybody else’s stories of how they helped their children, I just wish we could find the answers and help my son.

@ChemarThank you, I have started to add a lavender oil to his bath but just a cheap one, may have to look into a better essential oil. My son also has vitamin c supplements, ascorbyl palmitate and magnesium ascorbate (suggested by a homeopath years ago). Will look into what you have suggested too. A few weeks ago I have taken my son off milk and cheese as wondered if this is a trigger. A while ago I posted on here as my son had been swimming and the vocals got bad after that for about 2-3 weeks before they calmed again. I think the chocolate has again set them off so hopefully with a stricter diet again they will calm again. When your sons tics we’re triggered how long were they bad before you saw an improvement? Thank you again for your help, it is so hard to find the solutions and hard for our children to deal with 😊

@Chemarhi I wondered if you had trouble getting to sleep when the tics were bad? My son’s vocal tics are loud and constant at the moment and it is taking him around one and half hours to get to sleep at night. We are doing Epsom baths and relaxing before bed, have you any advice please? After speaking to you a couple of months ago I started my son on l carnitine and that helped for a few weeks, the vocals didn’t go but calmed down but now vocals have flared up again. Although due to it being Easter my son has had a little bit of chocolate each day for about a week and so am guessing this hasn’t helped. Have now stopped the chocolate 😬

My son has vocal tics, he makes various noises most of the time, sometimes they are really loud and constant which at the moment is stopping him from getting to sleep. On average it is taking him one and a half hours to go to sleep. Has anybody been able to help their child get to sleep quicker when they have bad tics. We do the obvious things like trying to relax before bed and Epsom salt baths. Just really need to help him as he gets quite upset at night! Any suggestions would be really appreciated!

I have just looked up Lectins and it also states potatoes which my son enjoys baked potatoes and boiled potatoes. Have you had any reactions to eating potatoes? Thank you for your advice, I really appreciate any help!

Funny you should say that as I have wondered about tomatoes! Yesterday I made pizzas but used a small amount of bbq sauce and chicken (he usually has tomato paste and pepperoni). We have homemade pizza one a week and spaghetti bolognese.

Thank you again, my son has vocal tics which are noticeable but bearable but last Sunday he went swimming for the first time in ages and Monday he has started two different very loud noises so I am convinced the chlorine in the pool has started these. I am hoping that they will settle down again soon but will now look into buying L carnitine. I am also thinking about eliminating dairy to see if this helps as I have read lots of stories on this.

Thank you for your reply, when you used the L carnitine did the vocal tics go altogether or just improve a little? Also when you stopped using it did the vocal tics become worse again?

Thank you for your reply, my son doesn’t like the baths as obviously he is lying in just warm water (no bubbles) so was just wondering. Also you mentioned previously l carntinte worked well for your sons vocal tics, I have looked this up and says it is for weight loss so what actually is it and how does it help? Sorry so many questions but am desperate for something that will help!