Chemar

Yes, we had been using many alternative things as it was clear something was not right with my son. He was already seeing a naturopath and homeopath, but we had not yet formulated any fixed plan as were mainly doing various testing. He was on some homeopathic drops and pillules. His exacerbation happened just bf Christmas 1999, shortly after his 10th b'day.
 
We were very against getting medications when the TS/OCD dx came in early 2000, as we have always been holistic in our health perspective, but sadly, when things were eventually so very severe for my son after more exacerbations, the combo of the school, the neurologist, psychologist and psychiatrist scared and bullied me and dh, and persuaded my then 11yo that it was the only way he could have any quality of life so the year of the medication nightmare began.....ugh, I still struggle to think back on that year
 
I thankfully found a copy of Latitudes magazine at a friend's house in late 2001, when my son was in severe withdrawal from the meds, even tho under physician care. I learned from there about Bonnie's plan for her child (long before she had Bontech supps) and I found her then yahoo page with her supplement list. Took it to our naturopath and the rest is history...things kept getting better even tho we still have had the ups and downs that living with neuro and autoimmune illness brings. The Crohn's threw us a curveball (symptoms began in 2004 but correct dx only in 2006) Son has always had digestive probs tho, since infanthood, and one of his early dx from the naturopath was "leaky gut syndrome" and candida overgrowth, along with Epstein Barr virus.
 
 
 
quote in my signature says it all: "When Life brings you to your knees...you're in a good position to pray!"
 
honestly, God alone knows the mess I really was inside. I was totally terrified and felt hopeless for my son's future. Only one thing got me through that time. Prayer. I know I found that Latitudes magazine as an answer to prayer that day. I had been begging God to show me the way to help my son.....and I was finding it in those pages.......I eventually joined the forum to share the success we were seeing as a way to "pay it forward", and that is why I am still here

Hi
We noticed an almost immediate improvement for the vocal tics when we started L-carnitine.
However we were advised to not go above 500mg per day even though my son was adult weight & a young teen then

Hi
I replied to your post on the TS/tics forum

Hi
I am hesitant to comment when there is PANS involved as there are so many variables included then....but when my son had loud yelling tics, l-carnitine was very helpful.
We also always found acupuncture, Epsom Salts baths & Bach's Rescue Remedy helpful when any tics ramped up

This is the Thorne Multi my son prefers https://www.thorne.com/products/dp/basic-nutrients-iii-without-copper-and-iron
He doesn't take this in place of magnesium, but rather due to it's comprehensive supply of the basics, especially the Bs, minus the copper & iron which he doesn't tolerate well.
He still gets high magnesium via his diet and transdermal epsom salts (magnesium sulfate)
The decision to reduce supplements in favor of foods was one he made as he got older. He still takes additional supplements as needed for his specific requirements.

Hi Chemar,
 
Thanks so much for the response, and the resource, glad to hear that your son is able to manage without the use of meds! It seems that a well maintained diet is a good basis for reducing symptoms. I recently got a blood test from my doctor to see what i'm deficient in (i was interested in the magnesium levels, and b vitamin counts), but I recently read that a simple test isn't an accurate method of determinng true magnesium levels. A few articles I read claming that a RBC serum test (Red blood cell serum test) is the best way to determine how much magnesium actually is stored in your cells. It's a fairly common test, so i think it would be good to see where i currently stand. The reason being that I've also read that too much magnesium intake can cause harmful affects to your liver, so i wanted to be cautious.
 
I'm thinking that I will start off with a chelated magnesium supplement / natural foods magnesium dosage along with either a B complex or just B6 supplement and see where that goes. I've also cut processed sugars and aspartame from my diet to see if that has any effects.
 
Will update you to see how that goes.
 
Thanks again for your advice!

Welcome to the forum fluxvi0lin,
My son is in his late 20s now and been dealing with TS since a youngster.
 
He's had a lot of success keeping his TS under control with good diet and supplements as needed over the years, as well as an avoidance of artificial additives and other things he has learned are tic triggers for him.
I have an older thread documenting some of what has been helpful to him http://latitudes.org/forums/index.php?showtopic=687
 
He used to take extra magnesium supplements, but for some time now he has relied on his excellent multi from Thorne Research (without copper & iron) plus a diet rich in magnesium foods & Epsom Salts baths or footbaths for transdermal Magnesium
 
My son doesn't do well on B complex but has high B's in the multi which he has no adverse reactions to like with a B-Co
 
Like you he initially tried meds (Haldol & others) but horrid side effects so went "alternative/complementary/holistic etc" and never looked back

Hi Trish
 
I have posted a number of times that my son cannot tolerate B complex (neither can I, nor can my husband)
 
My son takes needed Bs individually ie. inositol, B12 and P-5-P(B6) and gets the rest of his Bs from a royal jelly supplement as well as his food.
He no longer even takes a multi since the one he was on is discontinued, as he found the same was happening with other multis he tried as with the B complex. So he now takes special teas and incorporates vitamin/mineral rich foods to provide him with those nutritional needs

Hi
You could always take evening primrose separately if not available in a combo?
As this thread is from 2004, I really am not sure what blends are available now.

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 http://www.drsarahdavies.co.uk/ "She is a functional medicine practitioner, is happy to treat vegans and ocd/mental issues."  

Hi mcturro,
 
It's quite frustrating when doctors insist that allergies can't be involved with tics. They are following the lead they take from conventional medical sources. Unfortunately, the medical community in general, and the Tourette Syndrome Association (which recently changed its name to Tourette Association of America) in particular, has failed to look into this, despite many reports from physicians and the public that link the two, and research that points in that direction.
 
An identical twin study supported the role of the environment in Tourette's many years ago, but unfortunately there has been a real failure of the medical community to explore this important issue. The long-standing message given to the public and physicians that TS is solely genetic is now giving way to more focus on environmental factors. But the progress is very slow.
 
You've really been through a lot already, going from doc to doc and ruling out PANDAS/PANS. Now you need to find answers.
 
We don't know what percentage of people have traditional allergies (like grass allergy, mold allergy, milk allergy) that are affecting tics, nor what percentage have sensitivities to a wide range of other agents that don't fall under the category of traditional allergens. Toxins also have the potential to affect tics.
 
Your pediatrician might say the same thing about pesticides as he did about allergy just because he hasn't read a study about it. Yet it is such common sense that most pesticides function as neurotoxins and directly impact the nervous system with the potential to cause tics, tremors, seizures, and more. .
Resourceful parents like you are left to forge a way on your own! Thankfully you have the motivation and open-mindedness to do so.
 
Yes, thankfully some people appear to outgrow their Tourette's. Many people also outgrow traditional allergies (and food reactions, as Wombat pointed out). Yet at the same time, some have allergies that surface as adults after not being troubled previously, and some adults develop Tourette's for the first time in the their later years.
 
As you would know, allergic response can depend in part on what part of the country one lives in at a particular time, whether someone moved from a clean house to a moldy house; there are so many factors that aren't on people's radar when they find that tics or allergies are getting better or worse. Hormones can play a role as well. One major exposure to a toxic substance can render a person hypersensitive to low levels of exposures.It can be very individualized, and not easy to sort out.
 
Dr. Doris Rapp released an excellent book a few decades ago called Is This Your Child? which had a subtitle about discovering and treating unrecognized allergies in children. She was the first to widely promote the concept that children could be reacting in a negative manner--both in behavior and in academics--to foods and allergens/chemicals in the environment. Dr. Rapp included symptoms of Tourette syndrome in her findings.
 
When parents--and doctors such as the two you went to--don't "recognize" that there is a potential for a connection to tics and allergies/toxins/foods, then they don't look for the connection nor do they ask families about any connections they may have observed on their own. And worse, they often discourage parents from looking for a link between tics and environmental exposures by telling them it is a waste of time. Meanwhile these doctors have no helpful answers to give when it comes to tics.
 
We never say that everyone with tics or Tourette's has allergies. But we do know that for many people, there is an important connection that should be looked into--and that learning about this can be very helpful in treating the symptoms of Tourette's and avoiding exposures that can aggravate the symptoms. If there is no connection, then so be it. But if there is, learning of it is a real godsend.
 
You could share these article summaries with your pediatrician since you said he likes to read. The first was a small study, the second was large.
Association of Tourette syndrome and obsessive-compulsive disorder with allergic diseases in children and adolescents: a preliminary study
RESULTS: While only one-fifth of the control subjects had allergic diseases, more than half of the children with TS and/or OCD had comorbid allergic diseases. Positive skin prick tests were greater in OCD patients compared to control subjects. There were no significant differences between the groups in terms of eosinophil counts or IgE levels. Among the allergic diseases, while allergic rhinitis was diagnosed at significantly higher rates in TS patients, eczema was significantly higher in OCD patients compared to control subject. CONCLUSIONS: This preliminary study shows an association between allergic diseases and TS and/or OCD. The results revealing differences in associations between types of allergic disease (rhinitis or eczema) and neuropsychiatric disorder (tic disorder or OCD) need to be investigated in further studies with higher numbers of participants, and immune markers should be examined.
 
Here's another one:
Correlation of Tourette syndrome and allergic disease: nationwide population-based case-control study.

CONCLUSIONS: Our data showed significant correlation between allergic diseases and TS. Risk also increased with number of allergic comorbidities and with age. Further studies on the mechanism of neuroimmunology of TS are required.
 
- - - - - - -
 
Hang in there and please don't feel lost. (You can feel overwhelmed though, we all did in your situation ) And don't feel hopeless. With the right doctor you can move in different directions and find more answers. The professionals you have been to simply couldn't help you. But there is much help to be had.
 
 
Do you want to tell us more about your child? .

I would like to clarify my position on posts that offer Facebook links, as I have been the subject of criticism by someone related to this issue and believe there is a misunderstanding.

A couple of weeks ago a newbie member asked in her first post about finding a PANDAS doctor in a particular state. Rather than providing information so that this mother and others could benefit, the new member was directly instructed by an advanced member to join a Facebook page she was involved with, and all the benefits of doing so were extolled. I took exception to that approach and made the post invisible. I explained my concern to the advanced member.

Facebook communication is a great resource and we certainly don't have any problem with people learning about Facebook sites through the Forum. In fact many threads on this Forum specify Facebook pages.

What we would appreciate though, is that if someone asks a question, rather than immediately drawing that person away from the Forums to join a Facebook page, please provide answers on the Forums and then feel free to include info about a relevant Facebook page.

We often hear from people who tell us they are grateful for the Forums because they don't get on Facebook at all (believe it or not!) and they are looking for help right here. We want to meet the needs of everyone, and we want to keep the Forums strong for the benefit of all.

Many will recall that we were the first to have a PANDAS Forum, beginning in 2008. Controversies were raging and it took a lot of monitoring to keep things on track. My hope now is simply that helpful participation continues.

We greatly appreciate everyone's help in keeping these Forums strong. You are the ones who make it the valuable resource that it is.

Hi and welcome
The type and dose of magnesium is important for optimum absorption and use.
 
I second the value of Epsom baths, even a foot bath is good!

Hi and welcome.
 
We do have members from the UK so am hoping one of them may see your post and be able to provide the info you need.

We had an excellent developmental pediatrician who evaluated my son. He was so very discreet in discussing the tics and was playing a "catch" game with my son while evaluating. He was great!
 
The neurologist....not so much as he said things in front of my son that he should not have and intensified his tics etc.
 
So it really does depend on the doctor.
My son was 10
Having someone close who can spend time with a younger child while you discuss details is a good idea. But the doctor does have to be able to observe and evaluate the tics, so it is a fine balance.

Hi
I just got back from work so wanted to also add that with supplements, good and pure are essential but that does not necessarily equate to expensive
 
I know many Integrative/Alternative etc physicians do often also sell the supps and many are excellent, but often there are other brands also pure and effective that do the same, or even better job! Here's a site that compares and does testing, though their lists are not yet comprehensive but growing https://labdoor.com/
 
I know some people with allergies avoid B12 due to histamine, but my son has always found it essential, and he takes it with only the P-5-P form of B6
But it *must* be the methylcobalamin form, not the poorly absorbed cyano form.
He has never been able to tolerate B Complex, and so takes the Bs needed for him individually and gets the rest in a good Multi
 
I do hope you get answers. Whether or not PANDAS is there, there are still other triggers for tics so it is great you are sleuthing to uncover potential triggers

Hi
How good to hear that Sheila's book and the website/forums have been of help to you.
 
It's good that you are working to eliminate allergens etc, but I do wonder about the dismissal of PANDAS? As far as I know, a family history of tics (even TS) and the existence of allergies does not exclude the possibility of PANS/PANDAS? I would want a second opinion on that! Especially with the fact that the ASO was high? Maybe also post on our PANDAS forum to get input from the parents there. They are very up on all the latest info, testing etc

Hi sbechtel and welcome to Latitudes/ACN
 
what you describe does sound like OCD
It can be treated with medications, but these sadly bring many potential side effects. Cognitive Behavioral Therapy (CBT) is one of the most effective ways to help people with OCD and is done with the aid of qualified psychologists. There are also over the counter supplements, like Inositol, samE and 5HTP, used with vitamin B6, that can bring much relief by elevating serotonin, which is usually deficient in people with OCD.
Always a good idea tho to have a physician provide guidance before giving anything to a child
 
here are some useful websites that I have put together on OCD and its treatment
http://www.latitudes.org/forums/index.php?showtopic=1963
 
hope that helps you find some answers

Hi and welcome.
 
There are a number of posts here on braces (and indeed dental work per se, as was the case with my son) aggravating tics for various reasons, including metal sensitivity and also TMJ issues.
 
There are some people with tics that seem TMJ related, and who have been helped by specialized mouthpieces
 
It's not an area I know enough about to comment much, but hopefully if you do some searches here you'll find the other info, and perhaps others with more knowledge can assist you

Hello dswm. I wanted to welcome you to the forums and offer my sympathies for all you are dealing with. It is no wonder you are overwhelmed. The relentless coughing in itself is so much to deal with, and then anxiety, ER and doctor visits, plus medications on top of it all.
 
You are to be commended for all the reading you have done, and all the doctors you have seen. It is clear you don't want to leave any stone unturned in your search for help.
 
Your description of the terrible feeling that it was as if the child you knew had died is sometimes mentioned when an underlying infection is causing a severe neurological reaction. The abrupt change is dramatic and distressing.
 
Other very significant environmental insults can cause similar symptoms.
 
The FluMist has been associated with a range of side effects, and tics and other responses have been reported by parents on these forums. It is difficult to know of course if that was the precipitating cause in your son's case.
 
With all your googling you may have come across the term PANDAS or PANS. Here is a brief summary that you could check out and consider in light of your son's case. summary.
We have an e-book on the topic here.
 
Did any of the doctors prescribe an antibiotic at any point, and did you see any change in symptoms with that?
 
Just wondering -- have you tried taking him off of milk and eggs as an experiment to see if it takes the edge off? Not that this is the ultimate cause, but it might be worth trying to see if it helped to any degree.
 
Also, since it is respiratory related, it is important to use all the approaches one normally would for allergy/asthma in the home.
 
Does your family have any history of asthma or allergy?
 
Since you seemed to find magnesium helpful before, you could consider warm epsom salt baths if your son would be OK with those.
 
Of course the key is to get to the main precipitating factor, and if it is an infection that will require additional testing.
 
I know you will be hearing from other parents with specific suggestions. With the holidays, parents are sometimes more tied up than at other times, but I am sure people will want to help you with you difficult situation.
 
Hang in there, and I look forward to hearing back from you.

Hi Phyl.....I have always benefittd from your P&A postings on Brain Talk so very good to see you here too
 
Our evals were initially two-fold....both lab tests as well as a method known as Radiogenics...somewhat controversial in this country tho covered by med.insurance in the UK i believe.
It was quite uncanny as to how we would get the status of the parasites and viruses from the radiogenic eval, and then the lab reports would come in and confirm......eventually we relied on just the radiogenics and then had final lab results to confirm the all-clear.
 
The team that do the radiogenics also did accupuncture, reflexology and biofeedback, along with the homepathic remedies, and introduction of the careful dietary and environmental changes, plus guided us on the supplemental needs.
The entire appraoch was very beneficial, but it wasnt till we followed Bonnie's supp guidelines fully that we saw the incredible tic reduction that he now has.
 
My son declares tho that NOTHING brings him greater tic relief and overall well-being than the period immediately following accupuncture.(seems to last a good 3-5 days!)

Hello
I am bumping up your first post so others on this forum can respond

http://www.organiclifestylemagazine.com/scientists-against-vaccines-hear-from-those-who-have-done-the-research/
 
For those on facebook who want more info https://www.facebook.com/vaccinetruth
website http://vactruth.com/

Very interesting article!
 
http://www.organiclifestylemagazine.com/scientists-against-vaccines-hear-from-those-who-have-done-the-research/

Hi
yes, magnesium taurate is the chelated form of magnesium with taurine.