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Any UK PANDAS savvy docs?


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Hi

 

I've seen some previous posts that mention a couple of possible PANDAS-aware docs in UK ie Giovanonni at St Barts and Breakspear Hospital in Hertfordshire. I'm currently trying to track them down.

 

A previous poster suggested I contact Dr K and ask if he has any London contacts. Good thinking! Thank you!

 

Does anyone have any contact details of Dr K, or know of another US doc that might be likely to be in contact with anyone over here?

 

I so wish we had the same awareness over here that you guys seem to have in The States.

 

Thank you

L

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Hi

 

I've seen some previous posts that mention a couple of possible PANDAS-aware docs in UK ie Giovanonni at St Barts and Breakspear Hospital in Hertfordshire. I'm currently trying to track them down.

 

A previous poster suggested I contact Dr K and ask if he has any London contacts. Good thinking! Thank you!

 

Does anyone have any contact details of Dr K, or know of another US doc that might be likely to be in contact with anyone over here?

 

I so wish we had the same awareness over here that you guys seem to have in The States.

 

Thank you

L

 

If you scroll down, there are some UK docs listed on Beth Maloney's list http://www.internationalpandasfoundation.org/obsessivecompulsivedisorder/Providers.html

 

There is a facebook group called "PANDAS/PITAND/PANS INTERNATIONAL" that you might try.

 

I would also try sending Dr. T. an e-mail as well. http://www.site.neurokidsr.us/

Edited by EAMom
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This is the email I use for Dr. k mkovacevic@aol.com

 

I found this on his website:

 

Miroslav Kovacevic, MD FAAP

Cl. Asst. Professor of Pediatrics

Loyola University

Stritch School of Medicine

Lecturer

University of Illinois at Chicago College of Medicine

Fellow

The American Academy of Pediatrics

e-mail

drK@webpediatrics.com

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  • 1 month later...

Hi, Thank you very much for the information on UK doctors. My son is 15 and has autism and has had severe OCD symptoms for about 2 months now. I found out about PANDAS online and the GP did a throat swab and blood tests but these have come back negative. He had a one week course of antibiotics and a couple of days after finishing the tablets he was back to his usual self for just a week but then the symptoms came back just as bad. The Community Paediatrician wants him to be admitted to the paediatric ward for observation. I would really appreciate hearing from anyone else in a similar situation, and especially if your child is ok now. Has anyone had any success by contacting Prof Giovannoni or Prof Hill ? Thank you.

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  • 2 weeks later...

Hi, Thank you very much for the information on UK doctors. My son is 15 and has autism and has had severe OCD symptoms for about 2 months now. I found out about PANDAS online and the GP did a throat swab and blood tests but these have come back negative. He had a one week course of antibiotics and a couple of days after finishing the tablets he was back to his usual self for just a week but then the symptoms came back just as bad. The Community Paediatrician wants him to be admitted to the paediatric ward for observation. I would really appreciate hearing from anyone else in a similar situation, and especially if your child is ok now. Has anyone had any success by contacting Prof Giovannoni or Prof Hill ? Thank you.

 

 

Hi, sadly we're still battling in the UK. Our paediatrician referred us to Prof Hill. I spoke to his PA to arrange a private consultation. He has an eleven week wait for new patients. We'll go on his list and I know I'm being impatient but it is so frustrating when you feel you're in limbo.

 

We also had short lived improvements after antibiotics. Our best hope at the moment is getting our paediatrician to prescribe on the advise of a US doc. We know he is already doing that for one of his other patients that has PANDAS. It is such a battle though.

 

Hope things go well for you.

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Hi, Thank you very much for the information on UK doctors. My son is 15 and has autism and has had severe OCD symptoms for about 2 months now. I found out about PANDAS online and the GP did a throat swab and blood tests but these have come back negative. He had a one week course of antibiotics and a couple of days after finishing the tablets he was back to his usual self for just a week but then the symptoms came back just as bad. The Community Paediatrician wants him to be admitted to the paediatric ward for observation. I would really appreciate hearing from anyone else in a similar situation, and especially if your child is ok now. Has anyone had any success by contacting Prof Giovannoni or Prof Hill ? Thank you.

 

 

Hi, sadly we're still battling in the UK. Our paediatrician referred us to Prof Hill. I spoke to his PA to arrange a private consultation. He has an eleven week wait for new patients. We'll go on his list and I know I'm being impatient but it is so frustrating when you feel you're in limbo.

 

We also had short lived improvements after antibiotics. Our best hope at the moment is getting our paediatrician to prescribe on the advise of a US doc. We know he is already doing that for one of his other patients that has PANDAS. It is such a battle though.

 

Hope things go well for you.

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Hi, Thank you, sorry to hear you are still in this situation. I have been trying to search for help but no luck so far. Prof Hill no longer works at Great Ormond Street Hospital only at his private Harley Street clinic I was told it was around 6-8 weeks waiting list and that we would need a GP referral. The first appointment would cost £800 which I don't have. Prof Giovannoni at Bart's Hosp doesn't see paediatric cases but they referred me to Dr Isobel Heyman at Great Ormond St, I have called twice sent an email direct to her and the Community Paediatrician has referred my son as we are local ( there are funding issues in referring him even to Maudsley in South London) but I haven't heard anything yet.

This is so frustrating the antibiotics worked and I was told by the Paediatrician that he would go on a lower dose longer term but this hasn't happened because she wants him to see a psychiatrist as his first and only tests came back normal.

What natural supplements or antibiotics should we try ?

There is an email address for UK PANDAS support on another post lisharrison@hotmail.com I will try this today.

Any advice would be appreciated, there must be some people in the UK who have had success or in a similar situation.

Edited by joely
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Hi, Thank you, sorry to hear you are still in this situation. I have been trying to search for help but no luck so far. Prof Hill no longer works at Great Ormond Street Hospital only at his private Harley Street clinic I was told it was around 6-8 weeks waiting list and that we would need a GP referral. The first appointment would cost £800 which I don't have. Prof Giovannoni at Bart's Hosp doesn't see paediatric cases but they referred me to Dr Isobel Heyman at Great Ormond St, I have called twice sent an email direct to her and the Community Paediatrician has referred my son as we are local ( there are funding issues in referring him even to Maudsley in South London) but I haven't heard anything yet.

This is so frustrating the antibiotics worked and I was told by the Paediatrician that he would go on a lower dose longer term but this hasn't happened because she wants him to see a psychiatrist as his first and only tests came back normal.

What natural supplements or antibiotics should we try ?

There is an email address for UK PANDAS support on another post lisharrison@hotmail.com I will try this today.

Any advice would be appreciated, there must be some people in the UK who have had success or in a similar situation.

 

 

Hi, it's such a difficult situation and so frustrating. One suggestion is to email a US doctor for some support. I emailed Dr Kovacevic and he did come back to me confirming that DS symptoms were compatible with PANDAS. You could use this as support to strengthen your case for antibiotics with your GP.

 

Also, I've found GPs are very reluctant to prescribe antibiotics. Are you able to use a different GP within your practice who might be more receptive to the whole PANDAS diagnosis and give you the lower dose for longer? I'm not sure what your situation is and what the charges are but you might want to look into a private GP. Their charges shouldn't be anything like Prof Hill. Private GPs are normally more flexible about antibiotics as they don't have the same NHS budget constraints and party line to follow.

 

Sorry I can't be of much more help. If I find any way to beat the system for PANDAS in the UK, I'll post it on here. Like other posts have said, read up as much as you can and go armed with your info. It is such a delicate balance of fighting for the right treatment for our kids but keeping the medical profession on our side at the same time.

 

Good luck. Keep us posted.

 

L

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Hi, Thank you for the good advice. I have had a lot of info from suzanne.ayres@yahoo.co.uk today as well. The first GP was very supportive and she spoke to a microbiologist who was very interested but then it got moved on to Community Paediatrician and our own GP and they are not convinced because of the test results being normal. It is a case of trying to push things through while needing them to do the referrals. Take care.

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Hi,

 

A good DAN! dr (Defeat Autism Now!) should be cognisant of PANDAS. We see a DAN! here in Australia with good results. Integrative doctors are more likely to have heard of PANDAS and a good naturopath might also be able to help.

 

Good luck! Also...do let us know how you get on. I'm sure you guys will not be the last from the UK to look for help here and it would be great if you can pass on info.

 

Edit for typos - all thumbs!

Edited by Ozimum
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Hi, Thank you for that info. I will keep posting updates, I am a bit surprised that there isn't more info from UK parents online especially if their child is now better.

There doesn't seem to be anything from UK professionals either. My son is going to have an OT assessment as his OCD symptoms will be very obvious in a physical assessment. So far it has just been us sitting there describing what he does. I am going back to the first GP who was very supportive and the microbiologist who was very interested in this as he should be able to suggest other tests/swabs that can be done. Since we saw the Community Padiatrician and our own GP everything has gone on hold while we wait to see a psychiatrist at Great Ormond St. They are clearly not convinced it is PANDAS, because he has autism I don't think they are seeing this as something new that started when he was ill a few months ago. Best wishes.

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