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Newbie mum of 5 yr old struggling to get PANDAS info in UK


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Hello,

 

This is my first post, and I'm really hoping you can help... my 5 yr old son has symptoms of PANDAS but here in London no one has heard of the condition.

 

My son developed multiple tics very suddenly on Christmas Eve, having been completely normal beforehand. Within 24 hours he was jerking his head, jumping, beating his chest and making facial grimaces. We took him to A&E (what you call ER in the US) where we spent most of Christmas day. They told us that all tests (including the strep antibodies) were normal, but a blood test showed abnormal overactive thyroid. Initially he was referred to an endocrinologist, but when they ran the blood test again 4 days later it was normal. He was then referred to a pediatric neurologist who diagnosed a Motor Tic Disorder and said we just have to wait and see how it develops. An MRI scan showed he also has 'Chiari malformation' but they think this is incidental and not linked to his tics. He is a very bright little boy who is normal in every other sense and doing well at school.

 

Over the last 4 months his tics have changed (throat clearing, sighing, finger clicking) but have gradually lessened to the point where they were no longer noticeable - just the odd jump now & again. But last Monday he came down with a sore throat and fever and the head jerking tic started up again, along with needing the toilet a lot & wetting himself during the day (something he'd never done before), and acute anxiety that his baby brother may choke or stick his finger in a plug socket.

 

Having read about PANDAS I took him to the GP and requested a throat swab. The doctor said his throat looked ok, but he did the swab anyway just to keep me happy, and prescribed a 6 day course of Amoxycillin as he had a fever. On Friday the doctor called me and said he was very surprised that the throat swab had come back positive for streptococcal throat infection, and he would need a longer 10 day course of antibiotics. When I asked him if it could be PANDAS he just said he'd never heard of it, and clearly thought I was a neurotic mum.

 

I am now pretty sure that the strep caused an exacerbation of his tics, but no one here in the UK believes me. I've tried googling and can't find a specialist who deals with PANDAS. I'm completely at my wits end. We are due to see the neurologist at the hospital again in 3 weeks time, but I know she'll just say wait & see.

 

Does anyone know where I might be able to get some more medical advice on PANDAS either in the UK, or elsewhere?

 

Sorry this has been such a long post, but I wanted to get all the history down in case anyone had similar experiences or any suggestions. Many thanks for reading!

 

Sam's Mummy

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Beth Maloney (author of Saving Sammy) sent out an e-mail not so long ago about the first overseas support group. Contact Suzanne Ayres, Oxford, England at suzanne.ayres@yahoo.co.uk. Sounds most definitely Pandas to me! Don't give up. Have you checked out all the US pandas websites? Print off the new white paper by Dr Susan Swedo, just published in Feb and bring it to the neurologist. You can find it at pandasnetwork.net. And read, read, read in the meantime, go in armed and if they're not receptive to exploring pandas then move on until you find someone that is. Also I believe most of the few specialists here in the US do phone consults abroad. Dr K, Dr B and Dr T. Scour this forum and you'll learn so much. Good luck!

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Hi

 

We are also based in London and can totally relate to how hard it is to find the right support here.

 

Our 7 year old showed sudden behavioural changes and extreme fatigue after strep throat and impetigo. Tics were not so big an issue for us, until recently when he started a 'clicking' when he spoke. He mainly showed severe separation anxiety, mood swings, paranoia, frequent urination and bed wetting, along with extreme tiredness. His ASO result was slightly elevated, but this was overlooked by paediatrician!

 

Our neurologist suspected narcolepsy and sleep tests came up positive for this. HOWEVER, in the last 4 months, DS has been prescribed two courses of antibiotics, firstly pen v then Cefuroxime and the changes in his behaviours, although not his tiredness, have been astonishing. It was like having my little boy back again. Unfortunately the improvements start to slip away, although they did stay for longer after Cefuroxime compared to pen v. Our neurologist is adamant we are dealing with straight forward narcolepsy and is very skeptical of PANDAS but I can not ignore the improvements after antibiotics. Like you we are still battling to find the right care for DS. No one seems to have a clue - I am better read than them.

 

The best advice I can offer from our experience is:

 

1. as the other poster said read read and read and go armed with your info. Don't be afraid to challenge what you are told by the docs because chances are you've read more than them

 

2. If the first type of antibiotics dont work go back to your GP and ask to try something different. There are several publications that report how ineffective penicillen is against strep. Try googling these. Previous posters on this site have given fab links to these. We only got Cefuroxime by chance because we were in Dubai on holiday when DS got ear infection. The docs there almost scoffed at our prophylactic pen v, and said they'd 'give us the good stuff instead'. We often get pen v prescribed in UK because it is cheap. However, be aware that GPs can't prescribe 'outside the book' - need consultant level care for this.

 

3. Don't start to believe you are neurotic. We know our children. One pediatrician told me to stop 'making up stories' - just before DS tested positive for narcolepsy. I still often question if I am imagining all the PANDAS signs, and then I read back through all my records and know it is not just in my head

 

4. If you have a good pediatrician but they have little knowledge of PANDAS, ask if they willing to consult with a US doctor for treatment advice. Our paediatrician is currently treating a

patient on advice of New York doctor. That child's mum got so sick of docs in UK. We're still pushing to get details of this NY doc. If we do I'll post you the info.

 

5. Our paediatrician told us to to see Prof Peter Hills. He apparently is PANDAS aware. He is also listed on Saving Sammy's list of Internstional Care Providers along with a couple of others. However he does have an 11 week waiting list to see new PRIVATE patients, who knows how long his NHS list is.

 

6. I also emailed a couple of docs in the US. DR K Mikovecic (?) emailed me back to confirm symptoms compatible with PANDAS. Doesn't help directly with treatment but does give extra weight to your case when battling to find help in the UK.

 

Sorry for the length of this post. We are still battling every day to find the right care for DS. While I think he probably does have narcolepsy, the PANDAS symptoms are so clear to us and I feel I owe it to him to do my utmost to get an answer to that before going down a lifelong path of stimulants, especiallly after the improvements from antibiotics.

 

Hope some of this helps a little. Good luck and let us know how you get on.

 

L x

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This is also my first post. I'm in Bristol, UK and I too have struggled with getting any kind of help for my 6 year old daughter who (we believe!) has been suffering from PANDAS for the last 2 years.

I will tell you our story, as I have found it so interesting to read about other people's experiences, especially in the UK.

DS had an abscess in her neck just before she was 4 which they think was caused by a strep infection. She was treated in hospital and that (other than the obvious trauma of being in hospital), we thought, was the end of that. Six months later, (there may have been another mild strep infection that triggered this), she overnight became a different child. She had severe separation anxiety to the extent that she would be rolling around screaming if anyone left the house. She displayed OCD behaviour eg door shutting, lining up of toys, rituals, obsessed with order, all accompanied with high anxiety. She became aggressive and rude. This was not our 6 year old daughter, it felt like we had lost her. We were terrified and distraught at this sudden change in character and in desperation I started googling OCD in children. A week later, by luck, I managed to find a link to PANDAS. Our GP who had not been able to help us before, was happy to prescribe us a course of penicillin on the basis of our research. A week later, we saw an improvement in her symptoms. Such a relief as I had been thinking she may not be able to start school and was wondering how on earth we were going to carry on like this. 3 weeks later she was absolutely back to her normal self.

At that point we saw a consultant paediatrician who made me feel like a completely neurotic mum trying to find an excuse for her daughter's behaviour. Her conclusion was that all children go through funny stages and maybe something had upset her at preschool (despite me explaining that it was much more than this). She was adamant that PANDAS didn't exist. We then saw a consultant neurologist who pretty much concluded the same, including referring to the behaviour as 'this naughtiness' in front of my daughter.

We had 3 more episodes that year, each accompanied by a positive strep test and each episode treated with antibiotics as a result of us asking our GP for them. Just before she was 5, DS had what we now realise was probably scarlet fever (two of her classmates were diagnosed with it with similar symptoms). I didn't realise that this can be a trigger for PANDAS so didn't treat it, thinking it would do her immune system good to get over it herself (and of course having no medical advice to help me!) A couple of months later (I think a delayed reaction to this illness) we had a terrible episode. DS's OCD routine before bed would take up to two hours. Checking taps off, cupboards closed lights off. She would need to watch a certain TV program and she would ask the same questions about it and if we didn't answer in a certain way, in a certain volume, she would be on the floor screaming. She would have to brush her teeth, go to the loo etc in a certain order and ask a series of about 40 questions checking things which had to be answered in the same way or again she would be rigid, screaming on the floor. So distressing and stressful. We knew as her parents, as did grandparents that this was not just a 'funny phase'. The other frustrating thing was that generally, out of the house, she would seem normal to friends, maybe just a little withdrawn, so I never felt that anyone truly understood what we were going through.

At this point we saw a psychiatrist and what a relief to finally talk to someone who had heard of the condition and actually believed it did exist. The first person to acknowledge that there was something wrong with DS.

We were given some advice on cognitive therapy but I didn't find this of much use. DS seemed to be coming down with an infection every few weeks and we would live in dread. We would treat each episode with antibiotics but then took the decision that it would be better to have her on a low prophalactic dose over the winter months rather than having to treat her with a course every few weeks. Our GP supported us with this. This seems to have worked ok, though she did have one infection when on them. Three weeks ago, she came off them and had a strep infection a week later which we treated with a/b. However,before taking her off the propalactics, I had taken DS to see a homeopath who gave her a couple of remedies which seemed to really agree with her. This episode was pretty short and mild. I have done some research into PANDAS and homeopathy and found some really positive stuff. I am enthused. We now need to make the decision as to whether to keep her off the prophalactic a/b and throw ourselves along the homeopathy route (my preferred option) or just put her back on them as she got an infection so quickly (my husband's preferred option).

Sorry for such a long story and probably of no help but has felt good to have a rant! I feel nervous but positive about the homeopathy route and will keep you updated.

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I thought I'd replied already but not sure why its not displaying.

 

I just wanted to say thank you so much everyone for your replies - so helpful. I've got lots of research to do...

 

It would be great to connect with some other UK mums - maybe a meet-up, as its so helpful to chat to people in the same situation.

 

Just one more question, Sam is on a 10 day course of Amoxycillin which is due to finish tomorrow. Does anyone know if he should be on it for longer than 10 days? I'm worried what will happen when he comes off. Should he have another strep test to make sure its gone?

 

Thanks everyone once again.

 

Sams Mummy

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I'm attaching a really useful page from pandasnetwork.org website

http://pandasnetwork.org/treatment-2/cheat-sheet/

You'll see that it advises a 10 day treatment and what to do from there if things don't get better.

I agree that a UK meet up would be really helpful. I am also keen to raise the profile of PANDAS in the UK as it breaks my heart to think that families are going through this when an early antibiotics treatment could get rid of it. I'm thinking of trying to get a national radio station to do it as a topic on a phone in show. (I have been on an OCD phone in on Radio 5 but was only given a couple of minutes at the end of the show and the last word went to the 'OCD expert' who dismissed it by saying all toddlers and young children go through phases - so frustrating!)

Good luck. I'll be interested to see how you get on off the antibiotics. With my daughter I found that after coming off the antibiotics it would always take a couple of weeks for the PANDAS symptoms to tail off.

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Here is an interesting link from the UK:

http://www.patient.co.uk/doctor/Sydenham%27s-Chorea.htm

 

And another:

 

http://www.wemove.org/syd/syd_cau.html

 

You might us it in addition to the other symptoms and similarities with Pandas.

 

I have always wondered why docs in the US and now you say the UK---- say "pandas is controversial" So many of the symptoms are similar in Pandas, Sydenhams Chorea, Autism, OCD, ADD, ADHD, and the list could go on. I am not sure what to make of all of it. But, If you have DAN(defeat autisim now) doctors over there or integrative peds or homeopaths, that is the first place I would start. There are a lot of treatments including long term abx and targeted nutritional supplementing that have made a big difference. BUT, you will still most likely have exacerbation's post strep or other infections. We are 5-5.5 months into this treatment of re-strengthening the immune system and trying to improve overall health. This latest exacerbation with known strep exposure, probably not infection, is getting better. Still not perfect but overall improvement. Let me know if you need any other questions answered about our situation.

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