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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

I fully agree that vacines save lives. The majority of people around the world have been protected from these awful diseases. However alot more research needs to go into the minority who have adverse reactions. We should not live in a world where a few pay the price for the many to be healthy. All the vaccine companies should be funding Autoimmune and Genetic studies, rather than these Drs having to beg for grants. My daughter is on the VAERS log! Her Doctor put her on it.

Thanks for those words dut. I have also had "friends" ask me "should she be going to school, as they were worried that their children could catch it" All I was trying to do was explain to a few on the suffering that she goes through. I am lucky that I have other good friends that can understand.

Your're very lucky dut, and I would stay as long as possible. If I do get positive PANDAS treatment then I will PM you all the details of Dr/hospital etc. Jules

i have just read the last sencence that I wrote, that sounded really mean and not very nice of me! All people need help, including children whose lives have been stopped with an autoimmune condition. Please ignore the last "witch" comment that I made!

Hi dut, If I was in your shoes, then I would have a US Dr that would be able to prescribe you abx. Remember to get copies of all your medical records to show the UK drs. It may be a good idea to try for a private dr here also. However we could not get abx/IVIG at a private hospital here as they are still governed by NICE. Our dds immune system has been going downhill since the start of this journey, and I feel that the PANDAS has put so much stress on her body that we are now in this position with her health. my only concerns about the UK is, even when PANDAS is proven in the medical world, the UK will still hold back and do the usual COST EFFECTIVE measures! Or wait and see if their is any side effects reported from the US before they start treatment. I really can get on my soapbox here as you can get a gastric band or a drug detox on the NHS but we cannot have the treatment to make our child better! Can you see were I'm coming from. Jules

Hi dut, Thankyou for the contact. With regards to PANDAS dx here, well its a nightmare. Our Dr has to write it with a ?. They don't insist that you take TS drugs, only offer them if you want to give them ago. Our Dr knows were we stand on that subject. NICE guidelines still do not accept that PANDAS is a medical condition as yet, so they advise Drs to treat as TS. However the PANDAS study undertaken here with IVIG states the success rate with this treatment for 20 children ended with a positive result. I will post you all the UK links. As for abx the NHS guidelines are the same, NO for PANDAS treatment. I have heard of other parents getting IVIG on the back of finding a seperate dx that the NICE people will accept. We had a chat with our GP about IVIG and he was anti it. He had to make a big point of all the "future" health conditions not yet discovered that our dd could get. But I'm sure you can remember what these gps are like, they don't even like to give out abx. On the plus side Great Ormond Street would be the place to have treatment. If our Dr cannot cut through the red tape then we are off to GOS. And...........if all else fails, we will go to the US for treatment. We had bouts of abx for the bad times, but our dr could only give long term if dd had a condition that allowed them to. It is so frustrating because so many of the drs at the hospital can see such a difference. However the abx dd is on is still a low dose compared to the US. On the plus side we can now request a 5 day course for AUG at the start of any fever and it is on a repeat. Jules

I have to say that our media, newspapers being the worst, can blow up headlines here due to our freedom of speech laws. It sells more papers and its all about money at the end of the day.

Did pregnant women in US have the swine flu vaccine. They recommended it here due to mums immune system being low and at risk?

Hi Vickie, I think this may be due to the enormous surplus that we have in this country! Lots of Drs, nurses and other health workers refused the vaccine Makes you wonder why! My dad normally has a flu vaccine, but for some strange reason he turned it down last year.

Hi Vickie, We are seeing a fantastic, experienced, Ped. The first onset that we had with dd he witnessed. He gave her a steroid blast and noticed the reduction in symptoms. We then had a go on abx which also had a positive result. Every attack makes her regress years, and then she's back to normal many weeks later and Ped also notices this too. Our UK Dr is VERY governed by the National Ins. of Clinical Medicine and as such ALL PANDAS children have to be medically treated with TS medication etc. It was only an immune system related kidney infection that we managed to get the long term abx, however we still cannot get the high daily dose that is given in US. At present I am in contact with PANDAS drs here to assist my Ped with treatment and to support him if questions are asked by the powers that be! You have to take care of the good Drs here. I thought that the extra test would support our dr more, and I also wanted to poke it somewhere to someone at our dds school as we are having a nightmare with them. I am usually a very gentle person, but the school just pushes those buttons in me. They are very concerned about how dds absences look on their school status. I cannot post my reply that I gave to the school! I'm working on the theory that everything helps Jules

Wonderful news!!!

Hi nomoz, My heart goes out to you. Our first major PANDAS onset was very much the same. DD aged 4 would run around the house in the middle of the night, screaming, switching lights on talking complete nonsense and not always using the toilet!! The screams were so loud that we feared they would wake the whole street up. I often remembered praying for God to give me the strength to get through this and help her. This was totally NOT my calm quiet child that I once had. Every child is different, so I can only give my personal experience here. We have never seen this reaction again since we changed her diet and allergy tested her (and gave her the supplements required). Going GF was a big turning point. The following PANDAS attacks were bad, and we had hyper issues etc but I can say we have not seen the psychotic outbursts again. If you can afford to go down the allergy/DAN route then this is the advice I would offer. I feel PANDAS kids are a big bag of mixed issues, and you need to look for other triggers. I do hope you move forward from this, and you are in my thoughts, keep strong and keep positive that there is help. It may be an idea to also see your Dr regarding the change of abx as some children can have an allergy to the ingredients. Hope this helps. Jules

Hello Marilina We can't get a test for this in the UK either. Please keep me posted on how things progress! many thanks Jules

Sorry Cheri, Forgot to mention pyroluria, our Dan tested for this as she said it was an important test for anyone with Tic symptoms. We had a regular bloods check last October and it showed that dd was midly anaemic. We only gave her 2mg daily child dose for zinc. Since stopping supplement pins and needles in fingers have improved. We also check for diabeties as some symptoms can cross over, however I think we may have some detox issues going on. Thanks Jules

Hi LLM How is your son now? Have the symptoms gone? Hope its good news! Jules

I meant the "other bacterial species that were infrequently detected.

Thankyou Dr T. Does this article link to my sons persistant nose infections, and his PANDAS sister! Abstract: Background: The impact of Staphylococcus aureus on the development of chronic sinusitis with nasal polyps (nasal polyposis [NP]) is a controversial discussion because different S. aureus colonization rates have been reported. Aside from the presence of a microbial stimulus, elements of innate immunity such as Toll-like receptors (TLRs) and/or impaired TLR function could be relevant for the development of this disease. Because the 753Q TLR2 variant may predispose to staphylococcal infection, we simultaneously analyzed staphylococcal colonization and the R753Q TLR2 single nucleotide polymorphism (SNP) in NP. Methods: Sixty-eight patients with NP (47 men and 21 women; mean age [±SD], 51.8 years [16.3]) and 51 controls (32 men and 19 women; mean age [±SD], 36.3 years [12.2]) were included. Patient characteristics studied included status of allergy, asthma, aspirin intolerance, and endoscopic and CT polyp score. For detection of bacteria, standard procedures of bacteriology and 16S rRNA gene sequencing were used. The R753Q TLR2 polymorphism was studied by allelic discrimination assay. Results: Overall, 128 isolates were cultured from 68 NP specimens, with Staphylococcus epidermidis and S. aureus being the most frequent bacterial isolates. Other bacterial species were infrequently detected. Fifty-nine isolates were cultured from 51 controls. Similarly, S. epidermidis and S. aureus were the most frequent bacterial isolates. S. aureus colonization was significantly increased in NP (p < 0.05). However, SNP genotyping results showed no association of the 753Q TLR2 variant with NP. Conclusion: Although S. aureus detection was increased in NP, nasal polyp pathology is not related to the 753Q TLR2 variant. Jules

Thankyou Diana for the best post I've eve read! It has brought me to tears, but for once the right ones that come with hope. I cannot put into words the gratitude that I have for these amazing Doctors. Jules

I remember an Allergy specialist saying to me that he feels "chlorine will be like the next asbestos scare". He noted the amount of children with asthma occuring due to gases being breathed in from swimming pools. He also mentioned that we are drinking a diluted form of bleach in our chlorinated water, and what effects this could be having on our good bacteria and immune system! We have been a chlorine free house for years, and use salt in our pool (very small pool) to keep it clean between water changes. This was only one Drs point of view, but I can see his logical thinking.

I thought I would post this health article as many use Zinc to support the immune system. This relates to a high level, but it did leave me thinking if our children have natural high amounts if it is not detoxed out of the body, or are sensitive to zinc. I used to use Kids calm daily for the vit c level, dd has in the past complained of tingling in hands and feet. We stopped using this due to high oxalate levels. Long-term use of a popular brand of denture adhesive could cause high levels of zinc in the body linked with neurological problems such as numbness and difficulty walking, a pharmaceutical giant said. GlaxoSmithKline (GSK) has stopped the manufacture of adhesives which contain zinc in response to health fears. It said customers who have used more Poligrip Ultra and Poligrip Total Care than directed on the packaging over a number of years should stop using the products and get medical advice. A 40g tube should last about six weeks, but some people will have used more than directed because of ill-fitting dentures, the company said. Zinc is not absorbed in the mouth but only when swallowed. GSK said its own reports on the products and other scientific literature suggested that excessive use of the adhesive could cause problems. A statement from the company said: "In 2009 we receive an increased number of adverse event reports. Together with published literature, these suggest that excessive use of these products, typically for several years, may lead to the development of high levels of zinc in the body which are associated with neurological symptoms such as numbness, tingling or weakness in the arms and legs, difficulties with walking and balance and blood problems such as anaemia. "These reports are very rare, given that several million people are users of our products." Poligrip Ultra and Poligrip Total Care are safe to use as directed, but customers who have use them for several years in greater amounts than instructed should stop using them and talk to their doctor, GSK said. It will now transfer to zinc-free versions of the adhesives.

I just remembered, my dad had a knee operation two years ago. His Surgeon requested him to bathe in natural Tea Tree oil as a natural antibactrial skin cleanser. I would check for any reactions before you use it. I also use tea tree shampoo on the kids to ward off nits. We have been nit free for years

We use a 100% natural sea water nasal spray, it comes out under pressure, and my son only complains of how cold it is. Can I post the name of product on site?

This is a vaccine company/GMC witchhunt !!

reactive, We tried an isotonic nasal spray to clean out his nose daily before steriods given. We do notice a decrease in smell. Let me know if you want me to PM product to you.