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Irinaphelps1

Looking for help in London, UK for boy with verbal and motor tics.

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Hi everyone and anyone

 

My 5 year old son has been experiencing both verbal and motor tics on and off for 1.5 years. Each time, just as they peaked, they quickly went away. However a new "episode" started 1 month ago and the tics have been more frequent and more aggressive. We have seen neurologists and had basic allergies tested (he has anaphylactic allergies to ALL nuts and seeds). We are desperate to find an environmental physician or any expert who can help us find possible causes and triggers, anyone more learned than me. I have spent days and weeks reading everything i can find on the topic ...so i know the tests that i think need to be done but i also know this is'nt my specialty... my son deserves someone who has experience with this.. not just me piecing together various bits of data .He is a very sensitive and gentle boy who is getting progressively more anxious as he struggles to deal with his body jerking hundreds of times per day.

 

would anyone have a recommendation for a doctor or functional clinic in London, UK who can help us?

 

a million thank yous in advance

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Hello. We are in Scotland and looking for the same. In the meantime I have spoken to the GP over the phone and he has arranged blood tests for our 8 year old son to check for deficiencies and celiac disease. My son has been complaining of sore stomach for the last 2 years and we had him at the GP who put it down to stress at school but we are thinking it may be more now. The GP reluctantly agreed to include tests for wheat and dairy. When I mentioned holistic practitioners/dietician he was quite dismissive which I expected really. This is a start I guess. I'd be interested to hear if you find somewhere as we would travel. It completely overwhelming and frightening I know. Good luck.

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I'd post but I don't know anyone I'm afraid! That doesn't mean there isn't anyone, it wasn't really tics with me, more OCD or PANS-like stuff, which I haven't found anyone for so far. I'd be interested to hear if anyone else knows anyone, either about tics or PANS.

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Hi -- I have referred people to this clinic located in London. It is the only one listed in the UK on the American Academy of Environmental Medicine for referrals.

 

http://breakspearmedical.com/

 

FAQ http://breakspearmedical.com/faqs/

 

Unfortunately I haven't heard back from those referred, with positive or negative feedback.

 

I will check with someone else in the London area who may have an additional suggestion and get back to you.

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I've sent a note to my contact and still waiting to hear back.

 

What would you think of phoning Breakspear Medical and let us know what you learn -- maybe find out if they have successfully treated tic disorders, or what they offer? It would be helpful to have more info on that clinic. But up to you of course. . .

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Another place you might try is British Society for Ecological Medicine (formerly British Society for Allergy, Environmental and Nutritional Medicine, which gives a better idea of what they actually do). Their web address is http://www.bsem.org.uk/ I came across them only recently and have contacted them to ask if they have anyone on their list who deals with PANS/Lyme/mould sensitivity (that being what I'm currently trying to investigate myself), no reply yet.

 

Unfortunately the "Find a Practitioner" thing on their website has a problem - you're supposed to be able to search by speciality, picking from a list of specialities, but nearly everyone seems to include every speciality on the list next to their name, so I think there's a mistake somewhere.

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I contacted the organisation suggested and they have given a list which may be helpful. Unfortunately none in Scotland but perhaps there might be scope for some telephone consultation. I was going to cut and paste the list on to this reply but not sure if that is permitted. Can anyone advise?

 

Our own situation seems to be getting worse. It is the first day of the school holidays and we were hoping that our sons tics would start to reduce but they have actually escalated. His shoulder shrugs are not there today but he has facial tics every 2-10 seconds. Where he was distracted before with conversation he is now integrating the tics into his speech. It is heartbreaking. I have introduced omega 3, magnesium including baths and massage oil. The only difference seems to be that he is finding it easier to fall asleep. His tests came back normal for celiac and still waiting on wheat and dairy allergy tests returning. He is not really bothered by the tics but is noticing that he feels stressed/angry at school in particular. We are trying to stay positive and focussed but it is overwhelming sometimes :(

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Hi - I don't see why it should be a problem to post the list, after all they have a "Find a Practitioner" section on their website where you can find contact details of all their members so it's not like you're giving away any secrets.

 

I haven't had a response to my e-mail asking them about PANS yet, I wonder why they replied to yours and not mine which was actually earlier? But after a long series of e-mails I've got a possible lead on that from somewhere else, so please pray for it to come to something (and actually help).

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Hi MatthewsMum, Please feel free to post the list. Maybe it will be good starting point for people.

 

I still haven't heard back from my contact (but it was in London area). Will ask again.

 

I'm sorry your boy is still struggling with the tics. Since he complains of stomach issues, have you tried taking him off dairy completely for a three week trial, regardless of what testing may or may not show?

 

Have you ever noticed that he is worse after certain foods--or any exposures?

 

(Love Scotland, my mother was from Glasgow. Where are you?)

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Hi all, I have unfortunately lost the email with the list of practitioners due to updating my phone and losing my previous emails. I have sent another email and will hopefully hear back soon and post the list as soon as I get this.

 

First day off dairy today so will see how this goes. The sugar free has been tough with signs of withdrawals including anxiety and depression, but a brighter mood today so hoping this is lifting. No cracked it in any way as tics still there. School goes back on Monday so that will be another factor to consider...

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This list of UK integrative practitioners was provided to me by the British Society for Ecological Medicine. I was told that might not all treat children; as forum members find this out, maybe we can add that detail to the list. None in Scotland were listed. They should all have some experience in nutrition and environmental medicine.

 

From Sheila Rogers DeMare: I'm grateful to MathewsMum for acquiring and sharing this list, as we have lacked this resource for the UK. Please note that ACN and Latitudes.org is not responsible for the services of these practitioners and we are sharing it in good faith that the client takes responsibility for finding someone who can best help them.

Dr Nick Avery
MB BS LRCP MRCS MFHom
(Physician for Integrated Medicine)
Address: 106 Stockbridge Road, Winchester, Hampshire, SO22 6RL
Tel: 01962 856310
PA tel: 01962 856310
Email: enquiries@thenaturalpractice.com
Website: http://www.thenaturalpractice.com

Dr Prem Bajaj
MD, PhD, MBBS, FCGP, MMedS, M.S.c. Pain Management, DPM, Dip Med Ac, Dip CBT-Hypnotherapy, DPH, DHA
(Physician, Medical Acupuncturist and Hypnotherapist )
Address: 114 Kingshill Avenue, Northolt, Middlesex UB5 6LQ
Tel: 07424 192078
Email: pbajaj@modernhealthltd.com
Website: http://www.modernhealthltd.com
Assessment and treatment of patients with allergic and environmental diseases, Chronic Fatigue Syndrome/ME, fibromyalgia, allergies, autoimmune conditions, chemical and food sensitivity and chronic infections including persisting viral infections and borreliosis. I am also an expert in acupuncture and hypnotherapy.

Dr Damien Downing
MBBS MSB
Address: The Medical Centre, 144 Harley Street, London W1G 7LE
Tel: 07718 483484
PA tel: 07718483484
Email: info@newmedicinegroup.com
Website: http://www.newmedicinegroup.com
Environmental Illness, Detox Therapy, Nutrition, Lipid Therapy, Allergy, Genomics

Dr Charles Forsyth
MBBS FFHom
(Ecological and Homeopathic Physician )
Address: North Cottage, 11 Dovers Green Road, Reigate, Surrey, RH2 8BU
Tel: 01737226338
PA tel: Office open 09:00 - 12:30 on Monday to Thursday; otherwise please leave a message on the answerphone or email.
Email: office@dr-forsyth.com
Website: http://www.dr-forsyth.com
Whole person, integrated, ecological and homeopathic medicine. Please see my website for a more detailed description of the way I work.

Dr Dee Marshall
MBBS MFhom
Address: Biolab Medical Unit, 9 Weymouth Street, London, W1W 6DB
Tel: 07738 009978 (Appointments)
PA tel: PA Claire Watkin : 07958 163013
Email: info@wellnessmedical.co.uk
Website: http://www.wellnessmedical.co.uk
I use a combined holistic and investigation-based approach. Particular interests are environmental illness, allergies and sensitivities, digestive disorders, Chronic Fatigue, Adult ADHD and Aspergers. Treatments used include Nutritional therapy, detoxification and complementary methods.

Dr Franziska Meuschel
MD ND PhD
Address: Biolab Medical Unit, The Stone House, 9 Weymouth Street, London W1W 6DB
Tel: 07946552064
PA tel: Daksha 07946552064
Email: admin@drmeuschel.com
Website: http://www.drmeuschel.com
Coming from a background of allergy and intolerances, I see mostly patients with CFS/ME and all associated conditions. My special interest though lies in the disorders of the gut.

Margaret Moss
MA UCTD DipION CBiol MSB
(Nutritional Therapist )
Address: 11 Mauldeth Close, Heaton Mersey, Stockport, Cheshire, SK4 3NP
Tel: 0161 432 0964
Email: margaret@nutritionandallergyclinic.co.uk
Website: http://www.nutritionandallergyclinic.co.uk
I specialise in complex chronic illness, seeing people who have been to many practitioners without success. I use changes in diet, nutritional supplements and relevant lifestyle changes.

Dr Sarah Myhill
(Private General Practitioner)
Address: Upper Weston, Llangunllo, Knighton, Powys LD7 1SL
Tel: 01547 550331
Email: office@doctormyhill.co.uk
Website: http://www.doctormyhill.co.uk

Dr David Owen
(Physician for Integrated Medicine)
Address: 106 Stockbridge Road, Winchester SO22 6RL
Tel: 01962 856310
Email: enquiries@thenaturalpractice.com
Website: http://www.thenaturalpractice.com

Dr Julia Piper
(General Practitioner)
Address: Private GP.com Ltd, LE2 2LF
Tel: 0116 270 0373
Email: drpiper@privategp.com
Website: http://www.privategp.com
Specialising in Functional and Nutritional Medicine.

Dr Jens Rohrbeck
DRCOG M.Phil Dr Med
(General Practitioner specialising in Functional and Ecological Medicine )
Address: 4 Eastmead Court, Eastmead Lane, Bristol BS9 1HP
Tel: 07584 719348
PA tel: Iren Kun - 07584 719348
Email: info@dr-rohrbeck.com
Website: http://www.dr-rohrbeck.com
Arthritis, Rheumatism, Asthma and Eczema, Chronic Fatigue, ME, Fibromyalgia, High Blood Pressure, Hyperactivity, IBS and Colitis, Menstrual and Menopausal Disorders, Migraine, Headaches.

 

ADDITIONAL:

 

This name came from a forum member October 14 2016

Sarah Davies,Cenacle Treatment Centre,
224 Dialstone Lane, Offerton, Stockport.
SK2 7LE
"She is a functional medicine practitioner, is happy to treat vegans and ocd/mental issues."

 

Edited by Sheila

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On 09/02/2016 at 3:52 PM, Irinaphelps1 said:

Hi everyone and anyone

 

My 5 year old son has been experiencing both verbal and motor tics on and off for 1.5 years. Each time, just as they peaked, they quickly went away. However a new "episode" started 1 month ago and the tics have been more frequent and more aggressive. We have seen neurologists and had basic allergies tested (he has anaphylactic allergies to ALL nuts and seeds). We are desperate to find an environmental physician or any expert who can help us find possible causes and triggers, anyone more learned than me. I have spent days and weeks reading everything i can find on the topic ...so i know the tests that i think need to be done but i also know this is'nt my specialty... my son deserves someone who has experience with this.. not just me piecing together various bits of data .He is a very sensitive and gentle boy who is getting progressively more anxious as he struggles to deal with his body jerking hundreds of times per day.

 

would anyone have a recommendation for a doctor or functional clinic in London, UK who can help us?

 

a million thank yous in advance

I believe there's a consultant neurologist at St. George's hospital London called Dr Jeremy Stern who takes a special interest in tic related disorders... He's also familiar with PANDAS as a diagnostic consideration. I was originally advised to see him when I reached out through a series of emails, but his care is restricted and limited to children, which is why I've sought Dr K. Hope this helps...

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