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Thanks for the info Dut, We also have a family history of autoimmune disorders on both sides. I will order the probiotics asap. On a more positive note our dd had over a year of very good health before the kidney infection. I supplemented her with natural antiviral/bacterials, vits, etc and we also used DMG. I was just looking back at that years diary, and at the same time noticed an article that DMG is an immune regulator. She was not on any abx and only had one mild tic/changed mood event. Some of the abx used for PANDAS regulates the immune system also. Maybe it could be a start for some who are struggling to get abx like we did. I'll try and post all the UK health news on this site, that I think may be of help. I know that the uk did a trial on IVIG and the results were positive with all 20 children not requiring any more treatment. Due to only a single trial being carried out and also the cost of treatment, as yet they only treat PANDAS as they would a child with tourettes. Jules

Hi Dut, I have Saccharomyces boulardii in the fridge, ready for the upset tummy that we see after certain abx. She seems fine on these - no reactions. Whould you know if I can give them to her whilst still on abx, or do I need to finish the course first. I did forget to tell you just in case you come back here. We also used a private allergy hospital who follow DAN procedures and they carry out tests that you cannot get on the NHS. It's quite expensive and they did dx her with PITANDS. They also sent stool samples to Great Plains (results came back with quite a few issues). We had lots of allergy testing there and allergy treatments. The hospital is Breakspear Medical, Hemel Hempstead (outskirts of London) They also stock quality supplements. I'm going to try low dose probiotics again, wish me luck. The last time we saw our ped he said that he felt that children were genetically predisposed to this condition. Have any other drs said the same to other parents? Thanks Jules

Firstly, thankyou for all the suggestions and comments. We have has issues with dd's gut prior to the pandas, bloated upset tummy, blood in stools, excessive flatulance. We were advised by dr to remove dairy. She improved alittle but all her tummy problems stopped about 6 weeks after going dairy/gluten free. Her ped suspects she could be a celiac. and we are thinking of trying gluten again for six weeks for a blood test confirmation once her kidney infection is resolved. With regards to having blood tests, well in the UK they look at you like you've come from another planet when you start asking for them! It was only in September when she became ill and started to tic/fever etc that her Ped gave us a hospital "passport" to bring her for swabs and other tests when she started to show signs of infection. Her bloods came back and the dr said she was showing immune problems from her blood count. A urine test confirmed a proteous infection in her kidney, and after an ultrasound they found waste matter collecting in one of her kidneys. This is how we managed to obtain prophylactic abx. Every time she has a strep infection we have swabs taken, and we are just told that yes it is strep, but never given any levels etc. They do not offer any tests post infection. When we try any form of probiotics or nystatin (which I dearly need to now because of the daily abx) we have a horrible reaction. I have tried the slow approach but she is very sensitive. However I've not tried them while on abx. The crohns connection is intresting, and we will mention this to dr. To dut, If you do come back to the UK, then I would suggest treatment at Brighton Childrens Hospital. Our ped. wrote down PANDAS? the very first time we saw him over three years ago, but he does keep reminding us that it is just a theory> however he is only one of a few drs that is aware of PANDAS. Let me know if you want our peds name. (wish I lived in the US) It was information from this forum that has helped us discuss with our dr what type of abx to use, and keflex seemed to do a great job until she started with the next infection and needed to have a high dose bacterial fighting abx. The great news is that the drs at the hospital can see the amazing results we are having, and I hope that they will treat other children in the UK like this too. We have another app in four weeks time, and I've armed myself with every PANDAS report and test that I've found to give to our ped. I've even thought about contacting Dr K to speak to our Dr regarding IVIG, but at the moment she is coping very well, and I don't want to shock our health service to much, as we have now turned a corner. Thanks for all the help Jules

That would be great, I do know that it is a genetic condition, and you can have this syndrome and not have any symptoms or pain. My mom and brother both have fallen arches and joint problems plus pain. I have it, and did not suffer with any pain until around 30 years old, but I am very hypermobile. My son suffers badly, lots of pain, flat feet, hypermobile, he is under physio, pain clinic and podiatry for special shoes to help walking. My daughter who has PANDAS, suffers no joint pain, but is hypermobile and has slightly flat feet. All I know about the syndrome is that the protein connected to collagen production is genetically affected. I would love to speak to another EDS/PANDAS mom. Thankyou Vickie Jules

Hi again, I forgot to mention on my first posting, and I don't know if there is a connection. Both my children have been diagnosed with Hypermobility Ehlers Danlos Syndrome type 3. I have mentioned this because I also found another mum in the UK with this syndrome who also has a PANDAS child. Thanks Jules

Hello all, I'm new here, but have been on the tourettes forum since my dd exploded with sudden tics at the age of 4, less than a week after a vaccine. I live in the UK, and PANDAS is not very common or understood here. We have at last found a dr here, and most importantly, treatment that is working. She has been exploding with tics, regression, sleepless nights etc, for over 3 years. The drs suggested medication for the tics, but we declined, as we could see a connection with viruses/illness and a high temp. with every onset. In Sept 09, she developed a kidney infection, and given high dose abx, followed by a daily abx (keflex). Within days the tics not only went, but all the other issues stopped. A few days ago, she suddenly developed a high temp. 39.7 and we saw a return of tics etc. Dr swabbed for strep., and confirmed throat infection, and both ears infected. Taken off keflex and started high dose of Augmentin. Tics and behaviour improved within days. Our Dr can now see the change in her when given abx. I am now a 100% convinced of this condition, because of the dramatic change in our little girl. I would like to add some thoughts on this condition, to see if anyone else has seen or experienced the following, Our dd reacts to probiotics and nystatin - (symptoms explode) could this be a reaction to the toxins when yeast dies off? Gut issues - we think she has a leaky gut - Immune problems - always catching viruses and constant throat/ear infections. (Dairy/gluten/soya free) Could I ask if any mum with a PANDAS child is RH neg. blood group, and did you have a anti D injection while pregnant. Sorry this is so long, but how many children have had chicken pox badly, with a high temp. etc. ? Thanks Jules

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.

Hope, I forgot to mention that I started a food diary and logged supplements, different enviroments, and all my dds reactions and have found this to be invaluable. Write down as much as you can, even if you don't see a trigger. Also use the search function on candida as it seems to be an issue with general health, as is with my dd. Jules

Hello Hope, I can confirm that the P/N treatment is very expensive!!!! We are 2 months into the treatment, and at the moment my dd has 16 antigens mixed in a vial. We give her .05ml three times a day before food. A book that explains P/N testing you could read is "IS THIS YOUR CHILD?" by Doris Rapp. I would buy one used as it's quite expensive. (ISBN 0-688-11907-7) I have seen no improvement so far, but I don't know whats going on inside her. To be honest i wish that I'd carried out a food allergy test first to find the worst offenders, as so far she has shown a high reaction to everything we have tested for. Because she likes a good variety of food we still have to test lots more foods and more environmental allergies. I will say that the tests take along time to carry out. When we went dairy free we quickly noticed her stammer and "mmmm" noise reduce, and then stop. We went organic and removed e numbers etc at the same time. The good advice that I've received from the forum is clean up diet and environment Find allergies go slowly, try one thing and see how your son reacts I sent myself into a spin trying to find the triggers, now I concentrate on one issue and stay alot saner! As far as the water filter goes, then I would see this as a positive thing as you are removing more nasty toxins from your sons diet. Look into the allergy testing before you commit to the P/N. I will let you know if our dd's baseline drops with any of her tested antigens in about a month. Good Luck. Jules

Hello, We have had alot of press stories in the UK about how smoking and drinking could be linked to various child disorders like autism, adhd etc. All these reports I feel have been timed just before Andrew Wakefield is to go before the GMC. I feel the medical body and governments are trying to focus our attention away from vaccines and our childrens underdeveloped immune systems. Has there ever been a study into the increase of tic disorders, PANDAS and OCD since the introduction of vaccines, especially containing mercury. I was given two ANTI-D vaccines when I was pregnant with my DD. I wonder just how much mercury we had!!!!!!!!! Jules

Hello all, I'm getting very confused about giving my dd omega 6, our dr advised us to not give her this, as we were told it would upset her gut and she had also not been tested for PANDAS, at that stage. (She since has been tested and is not a PANDA child). I've read in previous posts lots about O6, and then I came across a paper that has stated the importance of this oil. This paper also stated a ratio of Omega 6 to Omega 3 of 4 to 1. Alot of the paper was double-dutch to me, so I would love some intelligent imput here. The paper is in relation to neurotoxic syndromes, viruses, bacteria etc, and how omega 6 is required in the body to detox. The thread is http://www.health-report.co.uk/chronic_neu...c_syndromes.htm I don't know if this would connect to TS or tics, but it was really intresting about the need for Omega 6 and what role it plays. Thanks for your insights. Jules.

Hi Kim I always love your posts as they always get me thinking round corners. Dh and myself come from a family mixed with a gene pool of various conditions. You have really got me thinking. Do you think we could start an on-line survey of family medical conditions, and see if any conditions or groups of conditions flag up. I am wondering if some children can be more predisposed due to genetics. Just our close family members have Lupus, MS, diabetes, asthma, to name but a few. Do you think this would be a good idea to see if there is a common link? Jules PS I keep guessing about your profession, and I'm now guessing that you're a Doctor.

Hi Cheri, Thankyou for your reply. I have looked into reflexology, and we are going to book a course, its great as little lady loves massages. Could you please tell me a little about biofeedback as not quite sure what it is. I think she does need a very gentle form of detox, and a very safe method. thanks Jules PS I would love to try acupuncture with her, but i think she would punch someone who tried that. will have long chats with her thou

Hi, I have found a great recipe book with over 400 meals, that are great for childrens taste buds. All recipes are casin,gluten,MSG,aspartame and DGA free. They are easy to follow and you can save lots of pennies cooking from scratch. The book is called "The AiA Gluten & Dairy Free Cookbook" by Marilyn Le Breton, and I have seen the book sold used on Amazon. It contains lots of snacks and good ideas for school lunches. Let me know some of their favourite foods, and I can post some ideas. Jules

Hello me again, Sorry, got my facts wrong the MCT oil we use is from Vitamin Research Products, not kirkmans. Jules

Hi C.P. Lots of people in the UK use MCT oil as a candida treatment, and I've read lots of posts that say they have found it better than other remedies and medication like nystatin. You can chill it and then use it as a spread on toast etc. Kirkmans is one brand that I could suggest to be pure and of good quality. Hope this helps. Jules

Hi Lurker, That sounds like a very intresting theory, and thinking about it, nature must of given these little nasties some important role in the body. We need to have a long chat with our Dr about heavy metal testing and detox. I have read that hair testing can show heavy metals, but because she is showing asd symptoms I know that these children hold on to heavy metals, I must read posts on heavy metal testing and see if they are available in UK. Thankyou for mentioning this, and I would love to read article. Jules

Hello hh, Sending you a cyber hug from the UK. I'm a new member too, and have found this forum brimming with wonderful people. You touched a nerve when you mentioned that your heart is breaking. I used to run to the bathroom to have a good cry, when I first saw my dd explode with painful tics. Now I give her lots of kisses and cuddles, and reading this forum has kept me positive that I will find the triggers, and improve her health. Take one day at a time, keep those cuddles going, Jules Mummy to a beautiful little girl, whose smiles light up the world.

Hi everyone, I have been looking into a connection as to why my dd starts with tics and asd symptoms every time we try and kill off yeast. I need to thank Kim for putting me onto this theory, and can I run this idea by everyone to see if I'm on the right road. Good news first, tics and symptoms are reducing after stopping yeast treatment. Hope this makes sense; When the yeast dies it produces a mass of aldehyde toxins. The body then uses its stores of molybenum and pantethine to rid the body of these toxins. The body then runs out of these two important nutrients. Pantethine however is used in the manufacture of acetylcholine, which is a very important neurotransmitter. This neurotransmitter then stops functioning due to the lack of pantethine ( which I think is also vit B5 but is sold as pantothenic acid). This may trigger the tics. Also the adrenal gland is affected, by the lack of pantethine, an anti-stress nutrient. When this gland works insufficiently, the symptoms can be allergies lowered immune function anxiety (could this be the reason for the hyperness) and depression (dd also becomes tearful and moody, not usually her nature) The lack of molybdenum in the body can also cause an excess of copper, tungsten and other nasties. Then we also have a sulfate problem causing even more toxin build up. Result-maybe more tics. Lack of normal sulfation seems to be a big problem with asd children and adults, and dd starts stimming during die-off. This is where I need to gain all your experience in supplements, I have first introduced cod liver oil for the vit A at normal RDA dose Added 5mg of pantothenic acid to build up stores in body (may increase up to 10mg if we see no reaction to this) Choline citrate at 7mg (to go to 14mg) for the supplement to make acetylcholine for neurotransmitter With regards to molybdenum, we are going to supplement at RDA as she is so dinky (17kg). However will include foods rich in natural molybdenum that she is not sensitive to. When we have followed this path for a few weeks, we are going to start the yeast die-off again, very slowly. We have to kill this overgrowth off as I feel this is an important factor for her gut health. Does anyone see a connection that I feel may be the trigger with having tics with yeast die-off. Thanks for any insights and suggestions. Jules

Hi Kim, Thankyou for your very quick reply, I will visit site once my little monkeys are in bed. Our Dr is away on a conference at present, so the best thing that I can do is look for any other treatments. Looking back at her food diary, i cannot see any triggers, however our dr has told us she is highly allergic and can aquire new allergies. I'm not sure if I should pull her off all her supplements, and start again slowly, but she has been on these for over a year to improve her immune system, and we have had no side effects. Once again Kim thankyou for your time, and I will keep you updated. Jules

Hi Kim, I posted not long ago with regards to my dd and nystatin starting tics and hyperness. We stopped the nystatin and probiotics and when the tics died down we started her on natural candida treatment (yeast aid from kirkmans) Everything was ok to start with, then the temp. returned and the tics/hyper/stimming started again. We had only started on a very low dose, but there seems now to be a clear connection. I've stopped the yeast aid, started salt baths and keeping fingers crossed. You very kindly mentioned that you could post some threads in the direction of the autism site, can I please take you up on this offer. Thankyou so much for your help. Jules He knows not know where he's going for the ocean will decide It's not the DESTINATION It's the glory of THE RIDE

Hello, I would just like to send a big thankyou and hug for all the suggestions to try regarding an explosion of my dds tics. We are now trying a natural candida treatment from kirkmans called yeast aid. We also started molydeum for the die off toxins and two days into this treatment our little one is tic free, and the hyper symptoms are disappearing. Her tempature has also returned to normal. I have stopped feeling like i'm having a breakdown which is a great relief to my family. Thank heavens i found this site, bless you all Jules

Thanks for your replies, Our little one had a bad reaction to her first baby vac. so we backed off and started again when she was four with a single measles (no thermasol). She has been on and off antibiotics for along time. At the time i did suspect a problem with her immune system, but dr. just kept saying all children get up to 12 viruses a year. I should have gone with my instinct on that one. it is very hard in the uk to find a DAN dr. but we have found a biomedical allergy dr (private) who is great. this dr feels that the measles could of damaged her brain, and attacked her already weak immune system. Most of the tests carried out are sent to the States. We have not carried out vit/mineral tests yet, as dr feels yeast is a big problem. We are also trying to treat all her food allergies as her live blood test had excessive amounts of allergen cells. dr said when her gut flora is healthier, we'll go onto next issue, and recommended no more vaccines. Our other problem is that it is hard to find supplements here, so i import things from US. (wish i lived over there) What i can't get my head around is why she shows autistic symptoms when she starts ticcing, has anyone noticed anything like this? i have found an english product called mycocurb, is that the right product. thanks again for your help and advice, jules

Thanks Cheri, We are trying Epsom salts bath 3 times a week with lots of bottled water, and after the baths she is soooo calm with very mild tics and sleeping well. Our Dr thinks that she has had an allergic reaction to nystatin and probiotics, so she is having a natural candida treatment made up for her weight. The Dr also feels that she has an infection that she is fighting which is not helping. her immune system seems to be very low so we are trying natural ways to improve this. We don't have any tic/tourettes family members as far as we know, however her grandad was adopted. her daddy cannot stop shaking his legs and fidgeting when he is relaxing....drives me mad. Our little one has been lacto free from 12 months old, due to swollen tummy, excessive wind etc. however we have found out that she is now allergic to dairy. At two years old she caught chichen pox and was very ill. Within months of getting better she started to stammer badly. I feel now that this could have been a tic, as the stammer came and went. She has a long history of virus after virus, and i do think there is a connection with her immune system and the tics etc. i am home schooling at moment as she is aware of her tics (we call them our wiggles) , but misses school and is falling behind. Cheri, do you know of anything that i could give to her to help with the die off? Thankyou so much for your reply, Jules