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dut, Its that English sense of humour coming out of you when you reach that frazzled point. (The dry one!) I've put my foot in it twice today. We could do with some PANDAS night nannies.

Just an idea, What about Ellen's sons website. It come directly from a childs point of view, trying to make others understand. It touched my heart alot. Jules

JMTho, Gosh, you've brought back some memories for me. I used to buy melatonin in the States when I was working. They worked amazing for me. I even bought a book on them, MELATONIN natures sleeping pill. Ray Sahelian MD I still have it on my bookcase and it reads, Consult a physician familiar with its use if Pregnant, serious illness, you have an autoimmune disorder, taking immune suppressing meds ie cortisol and cycosporine, diabetic or hormonal imbalance. This information may have changed as I bought the book about 20 years ago - showing my age now. (started working when I was 4) The book is great however as is goes into detail about the chemicals needed for sleep so I'll have a read in bed tonight and post if there is anything of interest supplement wise. Hope you get some sleep tonight dut, I'm putting hubby on the nightshift, can you try giving that a go. Jules

As a mum of a 7 year old girl - I know exactly where you are coming from. Take down all her friends telephone numbers, and after school and anxiety calms try getting your dd to telephone them one to one. Also give her a topic ie tv programme to talk about also so that she doesn't get fixated on one subject. I speak to my dds friends parents that are not close friends of mine, and tell them that when she has an infection she is very emotional. Also watch carefully non PANDAS little girls - Alot of it is girls just being little girls. Hope this helps you and dd

Hi Dut, Are my suitcases as big as your sacks! Do you use epsom salt baths? When dd is in PANDAS mode we use e.s. bath followed by a massage, and we have an allergy air purifier plugged in day and night in her bedroom. This has gained us more sleep unless she has a cough. Good luck Jules.

Can I please just check that I can do this link. I cannot find any advertising on the website, but I'm functioning on 5 hours sleep in 48! It has Lancet papers and other studies linked to Neuro damage etc. (and especially immune system studies) Thankyou anyone for putting my mind at rest! Jules

Hello all I've added a link to a clinical health website in the UK that I found. A wealth of information, and some very interesting articles. http://www.nleducation.co.uk/ Jules x

Vickie, I was going to put a PS. on but my cat keeps jumping on my keyboard! What the school are trying to push for is a confirmed dx of a condition. Our Ped. has written down PANDAS with a ? But we still cannot get a positive dx, as so may drs here are non-believers, or they have never heard of it. By chance we hit gold with our dr. However, I think his hands are tied when it comes to treatment, or committing himself to PANDAS to the outside world.

Yes we Have an IEP system in the UK, I've just looked at the US version and they have the same principal. She had one when the PANDAS first started, but met the goals, so the plan was stopped. Then she became sick again, and another one started. Now we have a medical IEP/care plan. They are meant to check her temp. and monitor any behaviour/work changes. We picked her up from school a few weeks ago with a temp. of 39.7. very flushed swollen face and very quiet. She was fine in the morning, but goes downhill rapidly. I have talked about getting a "Statement" with the school, but they say as she catches up when well it would be hard to obtain. I do home school her when she is sick, but as you know this can be very hard as her focus and concentration go awol with an infection. (She also gets very hyper). The sad thing about this is that she loves school, but when she is sick she doesn't want to leave the house. All she seems to want, is to be picked up and carried around. (And she's 7). On a bright note though I don't mind the endless cuddles. Can you get Statements with a PANDAS dx in US Thanks Jules

Thankyou Vickie, Alot of info. in that leaflet can be seen by the teachers, and they do bring me her writing book with the dramatic changes, from lovely neat writing to scribble, and her maths is even worse. They say things like "Is is having to many late nights?" We have got to the point now of not mentioning PANDAS but just saying autoimmune issues. The school nurse has a plan setup, but is very negative of PANDAS. Their biggest issue is the amount of missed school because of repeated infections. They now want drs notes for every sickness, when I should be concentrating on my dd. They have all access to hospital records too. I'm going to print out the leaflet to give to them, to see if the penny drops, as it is so true to the condition. Thanks Denmark - I'll let you know if they send me any.

Hello Could someone please, please send a ship/plane/boat load over to the UK!!!!! Having a nightmare with dd's school.

Hi My dd gets tummy upsets with abx high dose. The dr said it can be a normal side effect. I use saccharomyces boulardii and she is better in a few days. However, if there is a nasty smell to the diarrhea then I would advise you to tell your dr. Jules

Doug, I also don't think there is a cure for PANDAS, but treatments that can hold it in remission or improve the immune system to fight back, and cope better. My dad has MS, and medication has put him into an artificial remission. However, when he is run down, sick or stressed it flares up. If he comes off meds, it returns. Yet, some people with MS can go into remission naturally. I think any autoimmune condition has its own path, and I agree with you Faith, with the wax and wane of symptoms. Our dd had a remission from the symptoms for over a year - naturally, but when a kidney infection put her under stress it triggered the PANDAS/tics again. And although our abx have been working well for months, we have yet to see the effects with a new virus. I know how you feel though Doug, just wanting and praying to see positive results. I used to wake up every morning in the hope of that " cure" for our children, to be all over the news, but until that day, I think helping and supporting each other to help our children is the best thing we all can do.

hello fixit I know that DAN drs help in this area. The Tourettes forum have lots of knowledge on the biomedical testing, that may get you some insight into these results. Let me know how you get on.

Hello Doug, We have been given a dx of PANDAS from Neuro dr - and respond well to abx. Stops all symptoms. Also given a PITANDS dx from a DAN dr. Dd will show symptoms from viruses, and non strep infections. I think that she has both. Maybe the IVIG works well with PANDAS, but struggle with a PITANDS dx. I would continue with the treatment, but make notes on what your dd's symptoms are with viruses. Have you just started the treatment, and have you spoken to Dr K about your reactions with viruses and fevers.

I thought of something else! Steroid bursts help PANDAS children, but steriods also affect their growth if given over a period of time. As arginine is essential and required for growing ghildren, do steriods reduce this amino acid, thus stopping what the arginine could be triggering if there is an inbalance in the body. I wonder if steroids have an impact on herpes viruses, as well as strep.

Thankyou for your comments, Michael, your amino acid results are very interesting. Could your body be making high levels because it's fighting the PANDAS? I have read lots on nitric oxide also in ASD books. I wonder if people with other autoimmune conditions like MS, have high levels of arginine as adults. Could these high levels be another indicator for PANDAS? I keep noticing the mention of HSV in the forums here. Its one of those viruses that has a wax and wane effect. That is why I see a pattern with regards to tics. We get tics with viral infections as well as strep. And dd will always get a pinprick strange red rash with viruses. She has suffered with constant viral infections, since catching chicken pox! I am left wondering if the chicken pox could be reactivating when her lyseine levels are low. If we get another outburst of PANDAS, and we don't see a strep infection I'm going to ask for a viral and amino test. I have also read that unknown viruses can trigger autoimmune conditions. We were also advised to use L-cystenine, (dd has decreased pyroglutamic acids), Susan, do you mind me asking if dd has to take Valtrex on a long term basis. Thanks.

We do not have to have compulsory vaccines for children in England (yet), so to opt out of them does not cause an issue with schooling. Our dd has not had any vaccines since the measles, as the drs stated immune system issues. Are you allowed in the US to obtain an exemption of vaccines, due to health reasons, which would allow your children to still attend school. We don't vaccinate children here with any compromised immune system conditions. Children here are given Tetnus as a single vaccine, and I think ours lasts 5 years. However I have not checked if it contains mercury, as they have phased it out of most childrens vaccines.

Hi Vickie, Our DAN Dr reported our reactions logging the batch number etc. I think every parent should report anything unusual. The more information the better. Jules

Hello all, I really need lots of help with this as there is so much conflicting information. L-Arginine is an essential amino acid in the body, and I believe children produce it naturally for growth. It is also found in foods, dairy and wheat products being two of them. Some articles that I have read suggest it decreases when we get older. High levels of Arginine seem to be capable of promoting the presence of certain viruses in the body., may lower Lysine, increase headaches and cause digestive upset. Lysine keeps herpes viruses dormant. However arginine is also essential for the immune system. Am I right in saying that arginine and lysine cross the blood brain barrier? Does anyone have thoughts on the following. 1 Do PANDAS children get better as the Arginine levels in the body drop as they get older? 2 Is there an improvement DF?GF when arginine food levels are removed? 3 Has anyone had any amino acid tests, and what were the results? 4 Could Arginine promote the presence of Strep? 5 Can abx lower/increase arginine in the body? 6. Do our children produce to much or not enough? The reason why I'm so interested in this is because my son suffers with persistant infections in his nose, brought on by allergies. He has his nose swabbed at the ENT clinic and it always comes back Strep/impertigo. On top of this he suffers outbreaks of cold sores. When he has a nose infection, it really irritates him, and he constantly wriggles/rubs his nose and pulls his top lip over his front teeth. Having one PANDAS child sent me into a panic that I now have two, but the Dr assures us it is not a tic, but him coping with the irritation, but I'm not sure. He is on allergy medication and steriod spray daily which seems to be working well. The reason why I have brought up the subject of Arginine is that as his cold sores can be really bad our natural health dr advised that we give him Lysine rather than taking Aciclovir tablets that are pescribed. I have noticed his nose wriggling, lip pulling stop within days every time I give him Lysine. This result has happened three times now. I do not keep him on the Lysine all the time, only when we have cold sore issues. I have not tried my dd on Lysine as she is well on abx. Could there be a connection here? Thanks for your thoughts and any info.

Dear Dr T First of all thankyou for the UK Dr info. I have tracked Dr G down. I did manage to speak to Dr Church who worked on the PANDAS study here with him. I know this is a little off topic, but last year I read a medical article published here, and I wondered if you were intrested in this, or had read the paper. Scientist here found that a strain of the HSV (I think it was 6) had a second strain - they named them a and b. The new strain was passed on genetically in DNA. The medical report stated that as yet they did not know what affect this new strain could have. I have read quite a few posts regarding a possible connection to HSV and onset of symptoms. I'm fairly sure that you have read this paper, but if not I can copy it onto the forum. (I have saved it - in one of my many files!!!) Still working on the log! May take some time to return, but what a dedicated thing of you to do.

Oh, I forgot to mention, one of the drs asked dh and myself what we did for a living. DH was a commercial diver on the oil rigs, and I was a Flight Attentant (long haul for 13 years). the dr said that I could be "Aerotoxic" which affects the immune system! nice! Any other Flight crew in the club?

My dd had a Measles vaccine and six days later started rapid eye blinking, soaring temp. etc and from then on my dd's life and the families turned into a living nightmare! She had a serious throat infection a few weeks before the vaccine requiring three courses of abx to clear it. On the day of the vaccine the Dr said she was fit and well and ok to be vaccinated. We did give the Dr a history of the constant throat infections and gut problems that she had. The Dr said she would be fine!!!!!!! I don't totally blame the vaccine, but I feel it did tip her fragile immune system over the edge. She regressed badly, lost eye contact, started spinning round and showed some autistic symptoms which thankfully now are a thing of the past. The Drs were very tightlipped when they saw all these symptoms as she was 4 years old and her prior development record showed her to be very bright and above average in all stages. This all happened just as Andrew Wakefield and the GMC had hit the headlines, and we took her to hospital (in the UK) but didn't get any common sense answers, or a dx. If any of my friends are taking their children for the MMR, I always advise them to give their child cod liver oil for vitamin A. for a few weeks before.

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

Please don't give up hope here. Every child is different, and on top of the PANDAS/PITANDS issues you also have to deal with puberty and the chemical changes that happen at this time. My experience has taught me that every dr has an opinion, and they do differ! Keep strong, pull your family and close friends together to give you some extra support and help. My thoughts are with you Jules (Hug enclosed)