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bev

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Posts posted by bev

  1. I was diagnosed with MS in early 2002, and totally detoxified of mercury by 2005. My therapist, Jeff, who later died in an accident, told me I was still in danger of getting candida, which can be caused by parasites that feed on mercury. If I continued the same treatment I would have stayed healthier, but by 2008 I was in a wheelchair, and a blood test showed I was allergic to candida, and many other things. A couple months ago, I was told I should take pau dearco herbal tea for my candida. I remembered Jeff had me take it a couple times before, got some, and it felt soothing to my stomach. Should I continue steadily taking the tea, or have breaks occasionally? Should I monitor the effects somehow? Is there any best brand of pau dearco? Sorry for boring you with my story.

     

    Hi,

    Sorry - I cant answer your question - but I just wanted to say I am thinking of you and that you are not boring anyone - you have very real concerns and I am hoping that someone with more experience can help you. Best wishes. Bev x

  2. hi bev

     

    glad to hear things have been improving tho sorry you are having to deal with waxing again

     

    the answer is yes and yes and yes :wacko:

     

    stopping a supp that has been helping can result in a waxing

     

    and

     

    eating junkfood, especially after a long period of pure food, can also be a trigger. I have no idea what McDonald's puts in their food but I do remember it as being a major trigger for my son, both re tics and gut issues

     

    and yes, as kids (especially boys) with TS enter the hormonal years, it seems the tics wax too, likely due to the dopaminergic effect of steroidal hormones

     

     

    you mention there were a number of reasons for stopping the taurine

    not knowing what those were makres it hard to say whether you should start it again

    but if none were serious issues, then I would think it may be worthwhile restarting the taurine and see if the tics reduce again which would indicate to me that his system needs it

     

     

    Hi Cheri,

    The reasons I stopped the taurine were that my son is diabetic and i had read that it can lower BP and also lower blood glucose levels. I also read somewhere (cant remember where now) that for one child it actually made things worse. But after I posted the message I decided to put him back on it as things were quite bad after the macdonalds food etc.

    I have chatted with him today and explained that, for now, we need to keep his food 'clean' and he understands. I am guessing the macdonalds food contains msg and various other 'nasties' so will keep away from it for now.

    Is there a list of 'clean' foods available on here I could look at? I nearly bought some ham today at the deli - but then thought it may contain preservatives and other things - but i do need these sorts of things for sandwiches for school lunch - any ideas? I noticed also that bacon has preservatives in!

    I was of the impression that age 12 was the peak 'tic' age and that things mostly started to get better rather than worse around this age group. So are you saying that things are likely to get worse as my son goes into puberty?

     

    Thankyou for your reply - very helpful.

    Bev x

  3. Hi all,

     

    I havent been on for a while as things had seemed settled (still ticcing - but not too bad). Anyway, for various reasons I decided to take son off taurine 3 days ago. Today he has started with more tics (same tics just more of them) and I am wondering if its connected to the taurine? He also ate a Macdonalds meal tonight and am wondering if this could also have had an effect? He normally eats very healthy 'free from' food - but just gave him a treat. Would stopping the taurine show a marked difference? I am thinking I might start him back on it tomorrow - any advice? He also just turned 12 x 2 weeks ago so wondering if his age is something to do with it? Thanks. x

  4. Hi all,

    I just wanted to thank the people on this forum for having a forum! I live in the UK and if it wasnt for this forum - I would not have 'met' with the lovely 'jewels' - also from the UK. We spoke on the phone today and she has helped me understand so much. My son had an infection and she told me which antibiotic would be good to try in case he has PANDAS - so I went armed with all the information (you wouldnt believe how little our docs know about pandas) and ready to beg for the antibiotic, however, he just gave it to me anyway - the right one! Hopefully it will be of benefit - but if not - at least i have tried and maybe can rule some things out.

     

    So thankyou forum members - i would be lost without this place. And thankyou Jewels - your amazing. Bev x

  5. Hi Bev,

     

    Ring up your surgery and ask for a nurse appointment. They will do a swab test if you ask and you don't need to go into details about PANDAS etc. but make sure that you ask for a deep throat swab. Also ask your nurse for a 48 culture and not a 24 hour one like they usually do here.

     

    If they try and put you off, you can always play the diabetic card, and maybe a little naughty by saying that he is really complaining of a sore throat and I don't want to end up with him not eating etc.....

     

    If it does come back as strep be prepared with the abx used on the PANDAS forum and ask for one of those or they will just give you penicillin. I know what a fight it is, but our surgery regularly check lots of children with swabs now.

     

    hope this helps

     

    Jules

    HI JUles,

    Nice to hear from you again! I didnt know the doc would test for strep if i asked. What do i say my reasons are for testing because as far as i know they wouldnt give abx for a sore throat? If it is strep - what does this prove? What are the abx they use for PANDAS - i get so confused reading all the PANDAS things to be honest and i dont always recognise what is an antibiotic and what is a test! What is the difference between the 24 and 48 hour culture? Sorry for all the questions - as you know i am fairly new to all this - so need as much inforamtion as i can get. Also, if i ask for a different abx - what do i say is the reason?

     

    Many thanks. Bev x

  6. Hi Bev

     

    by strep test I dont mean the advanced PANDAS testing...I mean just to ask for a throat swab strep culture so that you can see if there is active strep associated with the sore throat. The kind of strep test routinely done by doctors

     

    Hi Cheri,

    I see what you mean - I thought you meant for PANDAS etc. The problem here is that if you ask for a strep test for a sore throat - the Doctor would laugh you out of the surgery! They dont normally give anything for things like sore throats so they take the view that if there is no treatment required - then there is no test required either.

     

    Yesterday I had to ring the GP for some antibiotics because my son had a slight infection from his canula (insulin pump) and I was worried that this may turn nasty and send his sugars high. The nurse said she wouldnt give me any without seeing it first and gave me some topical antibiotic cream instead. She did offer an appointment, but as my son spends so much time at clinics and hospitals i knew he wouldnt be keen to go and would rather be out for the day. Over here they dont like giving antibiotics routinely as they take the view that if you can fight it yourself then this helps to strengthen the immune system.

     

    Did you have any thoughts on the homeopathy? Thanks. Bev x

  7. so sorry to hear he is ill bev.

     

    whatever the root cause of tics, it certainly does seem that, with some exceptions, kids seem to tic more when they are ailing. It is most likely the immune system reacting to the illness and so somehow triggering the tics.

    This would be an excellent time to try to get a strep test as well just in case!

     

    hope he feels better soon.

     

    Thankyou Cheri,

     

    I did think about a strep test - however as we are in the UK it is easier said than done! There is only one PANDAS doctor and you have to book an appointment months in advance!

     

    Today I went to see a homeopathist and she has given me a tincture for my son to take with water. It contains chamomile,Balm, and Scullcap. I will give this a try and see what happens. She also gave me a rub for his neck containing a few essential oils that should help to relieve the stiffness he is feeling. She did seem to know her stuff and wants me to go back and report if there are any changes etc.

     

    I will let you know if i see any results.

     

    Thankyou again Cheri - your very kind. Bev x

  8. I think I may have found out why tics have increased. My son had slightly sore dry throat for the past 2 days, and this morning he has woken and his blood sugars are 15 which is very high and always indicates an infection or illness so needs more insulin. I think being ill has triggered more tics. Will the tics subside to previous levels when he is feeling better? Thanks for any advice. x

  9. bev, it depends on his age and body weight, but he already is pretty much on adult dose of mag and taurine already

     

    have you tried soaking a washcloth in warm epsom salts and letting it rest on his neck? is he doing epsom salts tubs? that is w good way to increase magnesium without having to ingest more

     

    he could be in one of those mysterious waxing modes, or may have been exposed to some trigger. Is he excited or stressed about anything? (apart from the tic increase of course) Exposure to any chemicals/pesticides/perfumed stuff?

     

     

    Hi Cheri,

    Thankyou for you reply. I had sort of thought he was on a high dose. He is approx 39kg and he is a slim build - he is 11.

     

    We have only tried the epsom bath once but unfortunately he had a hypo whilst in the bath and then afterwards he couldnt sleep! But, i dont know if he had the hypo because of the bath or if he was going to have one anyway! Also, he was starting back at school the next day so this may have contributed to the lack of sleep problem!

     

    I did try the mag rub on his neck and he liked it - not sure if it stopped anything - but i will give it another go.

     

    Not sure if he has any new triggers because we are on half term from school - i suppose it could be that he is spending more time at home and there may be a trigger in the house?

     

    He did tell me 2 days ago that he feels 'odd' and he found it hard to describe. He said that he felt like crying and felt very emotional about something but not sure what it was.

    I am wondering whether he is a bit depressed. He has needed lots of hugs and cuddles and although he always says he loves me - he has been saying it over and over for the past week. He even held my hand today at the shops - in public! He normally would not do this - he is 11 and worries about what people will say!

     

    His friends had a get-together this week and he wasnt invited - i think its because of the diabetes - people seem very scared of it. I played it down a lot and told him we could have a sleep-over in the next couple of weeks so he didnt feel bad - so not sure if this has upset him more than i have realised.

     

    The only other thing i can think of is we had soot falling from out chimney and had to have the chimney sweep out to clean it all out this morning - can soot be a trigger do you think?

     

    Thanks. Bev x

  10. HI all,

    After having son on supplements for 3 weeks - he had shown a great improvement in his neck and facial tics.

     

    But over the last 2 days his neck jerk has got a lot worse and his neck is really sore. His facial gramace has also started again. He has been eating all organic and no rubbish in his foods for 3 weeks now. He is taking 500g magnesium, vit B, probiotic, and taurine 500g per day. Can I increase any of these - or is he on the maximum amount? Thanks.

  11. YES, thanks for sharing!

    Lots of plans and dreams here, so move out of the way, silly elephants!!!!

     

     

    This week our son certainly proved that. He was a finalist in the 5th grade declamation contest (public speaking). He has mostly vocal tics. He wasn't concerned about doing it at all. I was a wreck! He was being judged on how he handled his nervousness as well as the speech part! He didn't even want to practice the night before. He just got up there and did his thing and wowed us all! He took First Place!!! Proud, proud mommy moment!

     

    I totally know this was God's way of telling me to relax and that my son has many gifts and talents and that he has what it takes to face his challenges. I know God is watching over him and all our kids!

     

     

    Hope,

    That story is just beautiful - thankyou for sharing with us all. I do think that all our children have a special *gift* - not in a way that people recognise as a *gift*. I mean that our children are all so strong and dynamic in the face of what they have to deal with on a daily basis. I know my son is the happiest, most cheerful child i have met (a bit biased maybe)- and he finds happiness in the most unusual things. He is the most thoughtful of all my three children and he is the youngest!

     

    Your son sounds wonderful and strong and you have every right to be a 'proud mommy' - he is a star and you too. Well done to your son from me. Keep those elephants at bay! Bev x

  12. This poem was posted on another site - nothing to do with TS - but i thought it had a ring of truth about it and thought i would share. :mellow:

     

     

     

    A while ago, an elephant moved into my living room.

     

    This is the story of my reaction then, and now:

     

    " Oh no! What the heck is that?!?!? Is that an elephant? What is it doing in my living room?! That doesnt belong here! I want it out! My living room isnt big enough for that thing. It's making an awful mess!

     

    Whats that? I have to take care of it? I don't know the first thing about elephant care. No one in my family has an elephant in their living room.

     

    Ok, to be honest, Im afraid of it, I dont know if I can take care of it properly. What if I screw it up? what if I fail?

    Can I run away from it for awhile and think about things?

     

    Oh, there's others with elephants in their living rooms too? So they would understand right? Even when others dont.

    And there's books on elephant care? Thats good I like to read

     

    Ok then all right, I'll do my best to take good care of it. When will it leave?

    What do you mean you dont know?!

     

    Ok so I have to take real good care of it and you dont know when it will leave?

     

    Dr Faustman? Whos she? Will she be able to make it leave my living room?

    Well at least someones working on that, thats a comfort.

     

     

    Today:

     

    The elephant is still there in the living room. Most days it stays over in the corner, quiet, leaving us plenty of room to live our lives around it. Some days it will try to lumber out in the middle of the room and get in the way. I just give it some extra attention and then gently shove it back there where it belongs.

     

    Elephant, I may have to accept your being in my living room but I dont have to like it or you.

     

    Just stay out of my boys way, he has lots of plans and dreams and you will never be allowed to get in the way of them.

  13. bev,

    I don't recall how long your son has had tics, but I am glad that your doctor told you that. just because a child has a tic or two doesn't necessarily mean it will be tourettes. For ts to be considered, the criteria is motor and vocal tic occuring for more than a period of one year without at least three months of being tic free. the tics do not have to occur simultaneously, or constantly, just be present for at least a year.

     

    As far as the changes you've made, and them having a beneficial effect, is wonderful. I don't think it matters wether it is tourettes or a transient tics, for tics are tics, one way or the other. I think it is wise to look into the environmental causes for tics and behavioral problems first, as it can help a great deal as you are seeing now. Look at as many factors as you can, and note what seems to help and what doesn't.

     

    Thanks for posting this and what you have tried. it actually reminds me tht I have fallen way off the wagon, altho I had to because my son is currently underweight for his age. but I think I can tighten up on some things again and may try an overhaul soon, as I can attest tht things were probably more than a bit better when we were on a more regimented diet and supplements. Mly advice, if something is working, stick with it.

     

    Faith

     

    HI Faith,

     

    The tics have been there since august last year, but he did have throat clearing since he was about 7ish - not sure if this was a habit or tics though! I am taking things slowly as i dont want to get confused with what is working and what isnt. Obviously i dont know how long he will be like this - so take the view that a healthier diet is best anyway as he is diabetic on a pump etc.. He is also slim, but i make sure he gets enough of the 'healthy' carbs' to help him grow etc. I think boys tend to be slim until they hit 14 or 15 and then start to bulk out - so not worried about his weight really. I am sure you do the best by your son - and if you have let things slip a little - dont feel guilty about it - family life can be exhausting and i think its ok to have times when things arent so intense. The fact that you recognise this is a plus! I have only been dealing with this for a few months - it must be draining if you have dealt with it for longer. I also have to deal with diabetes - which is a whole other world! But i just tell myself that my son needs a childhood and memories of things that other children do and we shouldnt let the tics or the diabetes rule us! Take care. Bev x

  14. Hi all,

     

    I am feeling confused today. I rang sons phsycologist to ask for a referral to a tourettes specialist (think there is only 1 in the UK) - and he asked why. I said I want to rule out PANDAS and dont want him labelled as he hasnt actually been diagnosed as tourettes etc..

    Anyway, he said that he didnt think my son has tourettes - he just has tics! He said that my son would not be able to sit still at all and that he would have an obvious vocal tic if he had tourettes. Also my son doesnt display any of the other tourettes traits like OCD or ADHD etc..

     

    He thinks its transient tics as opposed to tourettes.

     

    I started son on supplements 2 weeks ago and have seen a big improvement, also cleaned up his diet considerably - mostly 'free from' foods and organic and no msg.

     

    So, my question is - Can transient tics benefit from supplements and diet changes - or is it just tourettes that benefits from these changes?

     

    I am giving him magnesium,taurate,vit b, and probiotic at the moment. He did have a head jerk - but since taking these things and eating better food it has improved considerably. I would say that his neck jerk rated as a 10 before and now its about a 2 or 3. His tummy tics have also reduced from about an 8 to a 2. He is 11 and has had tics since august last year. Previous to this he only had throat clearing since he was approx 7 or 8. I am wondering if he has reached the peak of tics because of his age and they are starting to decrease - or whether its the change in diet and supplements that has brought this about.

     

    Any advice welcomed. Thanks. Bev x

  15. Hi Bev,

     

    I have just sent you a PM with the name and full address of our ped in Brighton. I've had some sleepless nights with my dd, and I missed your forum post.

     

    Dr T, e-mailed me with the names of 2 UK experts in PANDAS, and I've forwarded them on to you.

     

    Thankyou very much Dr T for the info.

     

    Let me know if you need any help.

     

     

    Jules

     

    Hi Jules,

    Thanks so much for all the information - I have sent a reply with more questions - sorry! Also thankyou Dr T! Bev x

  16. You're not butting in! If you have info on anything, it's good to share. That's how we learn from each other. My son, when taken every 6 hours, it was only for a week. When I did once a day, that maybe lasted a couple weeks. Now, that he's recovered, if I see questionable behavior surfacing I may only give it for a day until I can see if there's reason for alarm.

     

    I know some parents on here give it daily for longer periods of time. Perhaps they will chime in on whether any testing is done to ensure no problems are occurring from daily use. I, admit, I don't think I'd feel comfortable giving my son it daily indefinitely. That's just me.

     

    Does your GP suggest never giving children Ibuprofen?

     

     

    Hi Vickie,

     

    The GP's here do advise letting children and adults take ibuprofen, but they are very cautious about taking it for too long. I think they mean if your taking it without an end in site - this is when it becomes dangerous. I would think that giving it for a week or two would be fine - but anything longer and i think your risking stomach ulcers and all sorts of internal conditions. I only know this because i thought i had a stomach ulcer last month and had an endoscopy to check it - it turned out to be acid reflux. But the consultant told me i shouldnt take ibuprofen as i may now be susceptable to stomach ulcers as there is a weakness. He then went on to say that NSAIDS (ibuprofen) are the main trigger for breaking down the stomach lining and causing stomach ulcers. I dont mean to cause offence to anyone - but it is worth thinking about if giving it on a regular basis to a child. Bev

  17. HI all,

    I am giving my son (11) magnesium. taurate, vit B, and probiotic. He has taken these for 1 week now and i have seen a bit of improvement, he also says that he *feels* like ticcing less. So, what is the next step? What would be the next supplement to give to him - I want to do things slowly so i can tell if something is upsetting his system. Many thanks. Bev

  18. There is another poster "lola" from the UK. You can search in the keyword section to pull up her profile. I suggest messaging her since she hasn't posted in awhile. If you go to their profile, you can send a message and that gets bounced to their personal email so they'll know to check it.

     

     

    Hi Vickie,

    Thanks so much for that info. I have sent a message. Bev x

  19. I think if you take Ibuprofen and a steroid at the same time there's a chance it may affect the lining. I am not sure on the specifics. If your child gets queasy after taking it, give milk prior to the Ibuprofen to coat the stomach. As for frequency, I have given it full dose every 6 hours (except while sleeping) to my son for a week when he wasn't doing well. After that, I've tried to limit how often I give it. Sometimes even once a day is enough to ease his PANDAS symptoms all day. I've read other parents have experienced good results with only one dose a day.I say try to give the minimum. For my son when he was needing it every 6 hours, it took 1/2 hour to get in his system and began wearing off at the 5 hour mark. If you don't see the PANDAS symptoms creeping back at the 6 hour mark, then hold off and see how long the easing of symptoms last. I would say, don't give it if they don't need it.

     

    Right now my son doesn't need Ibuprofen. The only way you'll know if they can be fine without it is by not giving it and see how they do. If I see any questionable behavior surfacing, I will still give him a dose. For me, I would think it's easier to hold off bad inflammation before it occurs rather than trying to bring down what is already there.

     

    I have heard some kids cannot take Ibuprofen. I don't know what happens to them and the reason they cannot tolerate it.

     

     

    Sorry to butt in - but i was told by our GP that taking ibuprofen for any length of time can be dangerous and even cause stomach ulcers! Are you certain that it is safe for children to take regularly? Bev

  20. Hi,

    This is a message for 'Jewels' from the UK. I am also in the UK and cant find anyone who understands even the smallest thing about tics - have been offered clonidine - but no diagnosis etc.. I was wondering where in the UK you have found the help for your child? Would it be possible for you to give me details of the Doctor you have found? Many thanks. Bev

  21. Hi all,

     

    Son has been taking taurine,magnesium, vit B and probiotic for 1 week now. There has been a small improvement in the neck jerk. He is still doing it - but its not as violent and he also said he doesnt *feel* the need to do it as much. I am keeping my fingers crossed that there will be more improvement over the next few weeks. How long did it take for others to see any improvements? Also, I realise we arent giving him the full list of supplements that you all give, I just wanted to start slowly just in case something reacted with him. He was taking flax oil - but he hates it and also i did think that it seemed to make his neck jerk a bit worse (although he did only take it for a few days - so no real proof).

     

    Can anyone advise me what supplements i should start adding now - or do you think i should give it a few more weeks on this regimen? Many thanks. Bev

  22. Hello all,

     

    I posted on this forum after my dd exploded with tics after a vaccine at the age of 4. I just wanted to update you all on how we are doing, and also say a big thankyou to everyone that gave me support and help.

     

    Being in the UK has proved very difficult in getting any biomedical help or testing, so I followed the advice on the board regarding improving her diet and helping her immune system.

     

    We have won on the allergy battle, and our dd is not suffering constant tummy problems, but we had regular explosions of tics etc, every time she had an infection or virus.

     

    In Sept 09 she started with a kidney infection and her tics exploded again. Her ped. started her on abx, then daily abx (Keflex) , and after 3 days she was symptom free of tics, regression, not sleeping etc, etc.

     

    Four days ago we had to rush her to the drs with a sudden temp which went up quickly to 39.7 and the dr confirmed infection in throat and both ears. (swabbed for strep) She was put on high dose abx, and paused her daily Keflex. She once again started with tics but 3rd day on abx and they have once again gone.

     

    We have at last found a dr that understands PANDAS and has seen the transformation when on abx.

     

    Our little girl is now the happy child we used to have that never stops singing, dancing and laughing. We know as parents that we have along way to go treating this new condition, but we are now on the right path at last.

     

    I want to thank everyone who helped me when going through the dark times at the beginning, and I do believe that if I had not found this forum then we could of not been as strong in fighting this.

     

    This forum helps so many parents because of the caring and educated people here.

     

    Keep being the wonderful parents and people that you all are....

     

    Many, many thanks Jules.

     

     

    Hi Jules,

    I am in the UK and would be interested to know about the doc your referring to? My son has tics - no diagnosis yet - but as you must know the UK are somewhat behind with treating TS etc - so i am interested in anyone who has knowledge of PANDAS etc. I understand if you dont want to give the doc's name. Bev x

  23. bev

    chiropractic and acupuncture have always been very helpful for my son's motor tics

     

    you can also make your own epsom salts cream to rub in to neck (or any other area where tics are focal point)

    My son actually prefers a washcloth soaked in warm epsom water applied to the neck, and resoaked and repeated for about 15-20 min

    here is my recipe for making the cream (courtesy of mrsD)

    Mix some epsom salts(about a tablespoonful) into water on a plate, use as little water as possible, then mix it into a cream of your choice. (I used Aquaphor--because it is designed to

    accept water without liquifying).

    I use a tablespoon epsom for about 1/4 cup cream

     

    here is a more recent and very innovative method for just magnesium cream

    http://neurotalk.psychcentral.com/post608661-182.html

     

    however, mag sulfate as in the epsom salts has additional benefits to just mag alone, as the sulfates have their own effect in conjunction with the magnesium effect

     

     

    Thanks Cheri,

     

    Funnily enough when we were coming home in the car today my son asked me if there was anything i could rub on his neck as it felt stiff. I was wondering what would be the best product - so great timing - thanks again! Will let you know if it helps. Bev x

  24. Hi all,

     

    I was having trouble trying to find taurine etc at our local health food shops so went into a little village and found a wonderful 'holistic' shop that sells everything you could ever want! Anyway, I told the owner what it was for and he said to also give my son a probiotic. He said the drinks you can buy in the supermarket werent any good because once you have drunk them they lose their effect by the time they hit the stomach etc - so he showed me a tablet form of a probiotic which i have bought which is slow release and works better. For those who use probiotics - do you use tablet or drink form? I have also bought a better quality as he said the one i had was slower to absorb - apparently its an oxide and i should have been giving one that ends in 'trate' as its a better all-rounder.

     

    I am also taking my son for a neck and head massage with oils next week as he has started with a neck jerk and his neck is sore. Are there any oils i should avoid that may trigger tics? Many thanks all.

     

    Also, is there a particular treatment/vitamin that helps with neck jerks? Thanks. Bev x

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