Anyone here from the UK?

[fifide]

Hi,

First can I just say what a relief it has been to find this website. My ds first had tics and emotional problems last June after scarlet fever and a proven Strep infection. The neurologists here in the UK acknowledge the link (he was absolutely fine but got the tics overnight) between his strep and tics etc. but don't believe in PANDAS! Everything I read here has convinced me more and more that this is what he has. Things had settled somewhat since December last year but 3 weeks ago he had another Strep throat and also Epstein Barr and had weird neuro symptoms causing him to be unable to use his legs to walk. This settled after a couple of days but his tics have got worse again too.

My mum's side of the family has rheumatic fever in the past but no-one has any tic disorder.

 

Anyway, I feel like we are the only family here dealing with this. Various doctors seem to treat me as if I am being neurotic and clutching at PANDAS as an answer when to me it seems so obvious what has happened!

If anyone else is here in the UK or has any knowledge of Docs with an interest in PANDAS here I would be very grateful if they would let me know.

 

Thanks for reading,

Fiona

[Chemar]

Hi Fiona and welcome

 

there is a member here Jewels who is also from the UK

 

she has been working with a DAN doctor over there who is open minded to PANDAS

 

I havent seen her for a few days, but maybe try messaging her directly too

 

hope you find the answers you need to get your little one better

[dut]

Hi - we're from the uk originally but stateside now. Dr T here in the US gave us this name - Dr. Gavin Giovannoni .. he's at Barts in London. Here's his webpage

 

http://www.bartsandthelondon.nhs.uk/forgps...32&pid=7687

 

I have no personal experience of him, though....

 

good luck :-)

[fifide]

Thanks for the replies. I will look into both options and see how we go.

[thereishope]

There is one hospital in the UK that I believe has done some PANDAS research. On Ormand Street? That does that ring a bell?

[fifide]

There is one hospital in the UK that I believe has done some PANDAS research. On Ormand Street? That does that ring a bell?

Yes. Great Ormond Street in London. Really big paediatric hospital. I think most of the research in the UK on PANDAS happens there. We are a bit stuck by lack of choice in who we get as a Dr here. The NHS doesn't really let you choose! We are near Glasgow in Scotland. One of the Dr's who used to work in our local children's hospital had an interest in PANDAS but he left some time ago

Thanks though. I will keep emailing Dr's until we get somewhere.

[Allison]

Welcome fifide!

We are US/UK duals living now in US for 10 years. We have seriously considered our options for our dd16 if we were to move back to UK, or even send her to live with her gma.

 

Then I found the UK NHS policy on IVIG that does not allow use for Pandas. In fact, I was surprised to learn that IVIG is being effectively rationed due to shortages. All product must come from US and Europe, as mad cows prevents them from harvesting local blood. Have you heard about this?

 

We are also wondering about cross-care issues with Canada. Can you go to Canada and get care under their system? They allow IVIG for Pandas.

 

Allison

[ARmom]

Hi,

First can I just say what a relief it has been to find this website. My ds first had tics and emotional problems last June after scarlet fever and a proven Strep infection. The neurologists here in the UK acknowledge the link (he was absolutely fine but got the tics overnight) between his strep and tics etc. but don't believe in PANDAS! Everything I read here has convinced me more and more that this is what he has. Things had settled somewhat since December last year but 3 weeks ago he had another Strep throat and also Epstein Barr and had weird neuro symptoms causing him to be unable to use his legs to walk. This settled after a couple of days but his tics have got worse again too.

My mum's side of the family has rheumatic fever in the past but no-one has any tic disorder.

 

Anyway, I feel like we are the only family here dealing with this. Various doctors seem to treat me as if I am being neurotic and clutching at PANDAS as an answer when to me it seems so obvious what has happened!

If anyone else is here in the UK or has any knowledge of Docs with an interest in PANDAS here I would be very grateful if they would let me know.

 

Thanks for reading,

Fiona

[ARmom]

Hi,

First can I just say what a relief it has been to find this website. My ds first had tics and emotional problems last June after scarlet fever and a proven Strep infection. The neurologists here in the UK acknowledge the link (he was absolutely fine but got the tics overnight) between his strep and tics etc. but don't believe in PANDAS! Everything I read here has convinced me more and more that this is what he has. Things had settled somewhat since December last year but 3 weeks ago he had another Strep throat and also Epstein Barr and had weird neuro symptoms causing him to be unable to use his legs to walk. This settled after a couple of days but his tics have got worse again too.

My mum's side of the family has rheumatic fever in the past but no-one has any tic disorder.

 

Anyway, I feel like we are the only family here dealing with this. Various doctors seem to treat me as if I am being neurotic and clutching at PANDAS as an answer when to me it seems so obvious what has happened!

If anyone else is here in the UK or has any knowledge of Docs with an interest in PANDAS here I would be very grateful if they would let me know.

 

Thanks for reading,

Fiona

 

 

Hi, Just wanted to say that I am from the UK and have experienced pretty much the same responses as yourself from the UK Doctors. I firmly believe my DS6 has pandas and I did indeed contact Dr Giovanni, but all he did was pass me onto Prof. Mary Robertson who is a Tourettes specialist!

 

However, I am now getting my son treated at the Breakspear Hospital in Hertfordshire who do indeed believe in PANDAS and as far as I am aware are willing to treat with abx and ivig. I ought to mention that they are primarily an allergy clinic and do believe that his tics could also be due to Gluten/dairy intolerance. Fortunately my DS seems to be okay at the moment (and I have greatly reduced Gluten from his diet, but not completely eliminated it) and his symptoms are minimal, but when they flare up they are severe!!

 

It seems to me that all they want to do in the UK is diagnose our children with Tourettes/OCD and put them on psych meds. However, my DS has had severe motor/vocal tics, OCD, emotional problems, poor handwriting and separation anxiety but when the strep was out of his system they all but disappeared. The symptoms only return and absolutely correspond with strep or viral infections and sometimes there can be upto a 4-5 month gap, therefore he does not meet the diagnostic criteria for tourettes.

[fifide]

Hi,

First can I just say what a relief it has been to find this website. My ds first had tics and emotional problems last June after scarlet fever and a proven Strep infection. The neurologists here in the UK acknowledge the link (he was absolutely fine but got the tics overnight) between his strep and tics etc. but don't believe in PANDAS! Everything I read here has convinced me more and more that this is what he has. Things had settled somewhat since December last year but 3 weeks ago he had another Strep throat and also Epstein Barr and had weird neuro symptoms causing him to be unable to use his legs to walk. This settled after a couple of days but his tics have got worse again too.

My mum's side of the family has rheumatic fever in the past but no-one has any tic disorder.

 

Anyway, I feel like we are the only family here dealing with this. Various doctors seem to treat me as if I am being neurotic and clutching at PANDAS as an answer when to me it seems so obvious what has happened!

If anyone else is here in the UK or has any knowledge of Docs with an interest in PANDAS here I would be very grateful if they would let me know.

 

Thanks for reading,

Fiona

 

 

Hi, Just wanted to say that I am from the UK and have experienced pretty much the same responses as yourself from the UK Doctors. I firmly believe my DS6 has pandas and I did indeed contact Dr Giovanni, but all he did was pass me onto Prof. Mary Robertson who is a Tourettes specialist!

 

However, I am now getting my son treated at the Breakspear Hospital in Hertfordshire who do indeed believe in PANDAS and as far as I am aware are willing to treat with abx and ivig. I ought to mention that they are primarily an allergy clinic and do believe that his tics could also be due to Gluten/dairy intolerance. Fortunately my DS seems to be okay at the moment (and I have greatly reduced Gluten from his diet, but not completely eliminated it) and his symptoms are minimal, but when they flare up they are severe!!

 

It seems to me that all they want to do in the UK is diagnose our children with Tourettes/OCD and put them on psych meds. However, my DS has had severe motor/vocal tics, OCD, emotional problems, poor handwriting and separation anxiety but when the strep was out of his system they all but disappeared. The symptoms only return and absolutely correspond with strep or viral infections and sometimes there can be upto a 4-5 month gap, therefore he does not meet the diagnostic criteria for tourettes.

 

Hi, I am saddened to hear you have had a hard time too trying to find someone who accepts what is going on with your DS. I have been made to feel like I am a neurotic mother especially by our GP surgery because I have questioned everything that has been said about DS' symptoms since day 1. It was my mum who found the NIMH criteria on the internet and I then did a huge amount of reading of the papers written about it by Susan Swedo and others. DS meets all the criteria (except handwriting deterioration cos he isn't yet at school). And yet they have doubts. Some Drs actually behave as if they are threatened because I know more about it than they do. The only saving grace so far is that they are prescribing abx and they seem to be working.

 

Like you there are long periods when DS has no virus/strep on board when things are so much better. No-one has mentioned Tourettes yet. It has been less than a year though.

 

Your experience with gluten and dairy is interesting too. DD is 8 and had a both dairy and egg allergies when she was younger. I will try to cut down on these with DS to see what happens.

 

I hope your good spell with minimal symptoms continues.

 

Fi

[fifide]

Welcome fifide!

We are US/UK duals living now in US for 10 years. We have seriously considered our options for our dd16 if we were to move back to UK, or even send her to live with her gma.

 

Then I found the UK NHS policy on IVIG that does not allow use for Pandas. In fact, I was surprised to learn that IVIG is being effectively rationed due to shortages. All product must come from US and Europe, as mad cows prevents them from harvesting local blood. Have you heard about this?

 

We are also wondering about cross-care issues with Canada. Can you go to Canada and get care under their system? They allow IVIG for Pandas.

 

Allison

 

Hi Allison,

Thanks for the reply. I would stay in the US if I were you. There seems to be no acceptance of PANDAS in clinics here. I think they are arguing over semantics and missing the bigger picture. One of the Drs we have seen accepts that Syndenham's chorea causes emotional difficulties and that DS may have a "mild" form of this but that is as far as we have got.

 

I am interested to hear about IVIG shortages. Where did you learn about that? I would be interested in finding out more.

 

Not sure about Canada. I don't think we can go there for care without emigrating. I intend to try and raise the profile of the illness here though. Not sure how yet!

 

Fi

[Allison]

Hi. I did a Google of UK IVIG and NHS and came up with these links:

 

1.

http://www.ivig.nhs.uk/

"This website provides a resource to healthcare providers to understand the Demand Management Programme for Immunoglobulin and access guidance and materials to ensure its effective implementation.

"The shortage of immunoglobulin prompted the DH to develop a Demand Management Programme, with the objective of ensuring that supply is maintained, even in times of acute shortage, for the patients considered to be the highest priority because of a risk to life without treatment."

 

 

2.

http://www.ivig.nhs.uk/clinicinfo.html

Clinical Guidelines for Immunoglobulin Use (2nd Edition, May 2008)

The clinical guidelines provide guidance on appropriate use of immunoglobulin and a framework for the promotion of evidence-based clinical practice. A poster summarising the recommendations for appropriate immunoglobulin is provided. A summary of the guidelines was published in the BMJ and can be accessed here through the BMJ website.

 

 

3.

http://www.ivig.nhs.uk/documents/Clinical%...ITION%20(3).pdf

 

"PANDAS

Only one case–control study shows benefit

from plasma exchange and IVIg (single dose)

in PANDAS [165]. There are no established

treatments for this condition."

 

 

 

Good ol' NHS!

Hope this helps!

Allison

[Wombat140]

I'm from the UK too, if you're interested, but I don't know much about PANDAS. Except that it doesn't seem to be talked about much here.

[fifide]

I'm from the UK too, if you're interested, but I don't know much about PANDAS. Except that it doesn't seem to be talked about much here.

 

Hi,

Thanks. It is nice to know we are not on our own here with this.