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UK Doctor needed to oversea tonsil removal. Help please!


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Hello all. Haven't been on here for a long time but in need of some help. Sorry if this has been done to death but need advice re any Drs in the UK who actually believe in PANDAS.

Basic history;

 

My dd is 10 and diagnosed with 'mild' TS. She started ticcing at age 7 and also suffered terrible OCD as well as echolalia, anxiety. and rages. She has a history of regular tonsilitus, had scarlet fever when young, was given penicillin which she couldn't keep down and was catatonic with infections though rarely had a fever. She now takes Erythromicin for infections as she was allergic to the penicillin.

She doesn't take medication for tics. I control them to a degree with diet having no medical help.

Last year we finally saw a specialist Tourettes team at Great Ormond St Hospital. Despite the numerous information I provided they were not open to the possibility of PANDAS. They diagnosed mild TS and said she may grow out of it. They dismissed the diet as unkind-despite the fact the only reason Stella was so well was due to my hard work with her diet- and said the 'tics weren't a problem'. I left feeling quite reprimanded and disappointed and left it at that. I have eased up on the diet as it was becoming an issue for Stella, her tics are less than they were a few years ago and we are all doing OK apart from the throat!

 

 

Now our doctor has agreed to removing her tonsils after yet another bout. She has missed a lot of school and I would like her to be well, however am reluctant to go through with the removal without treating this as a PANDAS case, i.e. using antibiotics to clear infection before and after the op. This will not be agreed to by my doctor or NHS hospital. I feel pressured by my family and doctor to just'whip them out' but what if this creates a worsening of tics and other symptoms when she is generally so well in herself. Her OCD is under control, tics are minimal/changeble but still has rages and talks in a baby voice sometimes.

Can anyone please recommend a course of action? I have a letter from DR k from years ago who agreed it sounds like PANDAS but this holds no weight here.

Should I contact Great Ormond St again at risk of being annoying or is there anyone else who will oversea the tonsil removal in the correct way for me?

 

Many Thanks.

 

 

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Thank you for the link, it's a really interesting procedure.

 

However, being in the UK, anything we have done would need to be approved and I don't imagine I would receive support in going to Germany and getting this treatment for my daughter which is a huge shame.

 

Thanks anyway. I'll certainly read up on the procedure a bit more.

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Thanks for that bigmighty. Will possibly email her doc at Great Ormond St and also Dr Martino to see if anyone willl back up the use of antibiotics with her tonsilectomy.

Got a letter from the hospital today to make an appointment asap, feels like they now want to rush ahead with removal and I'm kind of stalling...It's quite wearing when I'm the only person who thinks there's a PANDAS link. This amount of tonsilitus along with the tics can't be a coincidence though surely? Am torn between pushing for help or going along with everyone else, who think this is all in my mind!

Am pretty much on my own in this, feel like I'm also typing to myself. :) Oh well, onwards...

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  • 2 weeks later...
  • 2 weeks later...

Hi again, sorry haven't been on here for a while!

 

Saw Stella's (useless) paediatrician for check up appointment last week. He was the one who referred us to Great Ormond St Hospital after two years of nothing. He specialises in diabetes so no real help to me. I'd emailed him prior to the appointment explaining I need someone to authorise antibiotics at the time of tonsilectomy. He said he hadn't got my email and she should be treated as 'normal'. When I tried to talk he shut me down completely. He seemed to have an agenda from the start of the meeting and wouldn't change it.

 

He was reading through a letter from GOSH covering our appointment last summerr. When they undermined everything I had done to help Stella.

 

They see no correlation between tics and diet, offered no help with her rages, told ME to relax her bedtime routines, despite me explaining it was Stella that needed these rituals before she could go to bed. Their only advice was "tics are fine". Anyway the paediatrician went through their points with me, basically checking I've done what they said, "have you relaxed her diet?"etc. Then, he discharged us.

 

We have an appointment with the ENT to discuss tonsilectomy in April. Will email GOSH and the Doctor you recommended in desperate attempt to get something to back me up as far as meds is concerned. So fingers crossed.

 

Meantime the school are pressurising me over the time Stella has been off sick. She's still not great. Weirdly her ubular is stuck to her right tonsil at the moment though not visibly infected, she has a cough and has had a few really bad rages this week. Will go back to family doctor to see if there is a better antibiotic she can have.

 

Sorry for the long post but it seems to help sometimes. Seriously wish we were in the US as it's like banging your head against a brick wall over here.

Edited by StellasMum
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Oh, sweetie. I'm so sorry you have not found someone to help yet. Have you thought about emailing Beth Maloney, author of Saving Sammy? I know she was just in the UK for a PANDAS conference within the past year. Maybe someone in her camp of volunteers will answer your email and can steer you toward the right medical professional. Keep trying. Your gut instincts are correct. Glad you aren't letting the docs talk you out of them. Sending virtual hugs.

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