StellasMum

Hi Sarojane, It's so hard isn't it? I don't know where you are, UK or US, but having a good PANDAS Doc would be the decider for me. I thought that having antibiotics would be enough to get my daughter though this but, looking at ther now, I was wrong. You need proper medical supervision and help. I personally feel the tonsils were a barrier and I should have ignored all 'normal' advice and kept them.

Hi all. To update, I went to see the paediatrician and after the great advice above, said I agreed to give Stella whichever antibiotic he advised. His behaviour was quite odd and he seemed to be worried he could be implicated if anything went amiss (!) with heart problems etc. He had a nurse in the room as a witness, then he gave me a book and told ME to read all the affects/side affects of the various antibiotics my daughter could take and made ME choose! After pointing out to him that Azithromicin was noted in his book a not being effective against strep, he wrote a presc for erythromicin (only 7 days) instead and sent me away. I went to my GP and managed to get another prescr for 7 days, which I started my daughter on before the surgery, saving the other one for after. Because PANDAS hasn't been diagnosed and is rarely treated in the UK, I have had to wangle meds where I can, it's ridiculous. After 7 days on Erythromycin, Stella had the tonsils out and the Dr at the hospital actually listened to my mention of PANDAS and gave her Erythromycin during the op and another 7 days meds for after! Great, I thought. The only problem was Stella could barely eat and felt so sick for the 1st week after the op I could only get her to have 2 doses of meds for the first two days after surgery. She said any more would make her vomit. I quickly up'd it to 3 times a day on the third day and she has been having this since. She seemed to be tic free and healing well. I was worried she wasn't getting four doses of antibiotics, but didn't want her to be sick and cause bleeding. Now it's 18 days post surgery and the tics are back with a vengeance. She has two vocal tics, a whimpery hum/squeak and a "sss". She is the worst she has been for a few years. As she is still on antibiotics so I am worried what will happen when the meds run out. I have no way of getting any more. Today I'm increasing the Erythromicin to four doses a day, even though the meds will run out in the next five days, just to see if it helps. Mainly I feel I've made a terrible mistake and should have kept the tonsils. They were a way of getting meds when needed but they also caused her to miss a lot of school. We have two weeks before Stella goes up to senior school. If she starts a new school in this state, it will be a nightmare for her. New kids who aren't used to her and the tics will make the start of her new school career unbearable. I can only hope for a miracle. Any possible positive stories you may have or reassurance would go a long way right now! Could this be a 'normal' seasonal increase or have I 'broken' my daughter! I know that sounds melodramatic but it's how I feel today. Thanks in advance and sorry for the long posts!

I'm starting to consider not taking the tonsils out at all actually and carrying on as we are, getting a course of antibiotics when they're infected. It won't stop her missing school and other things and she won't be happy but I don't have the support I need to really treat this as a PANDAS tonsilectomy so I feel a litle stuck.

I should say we are in the UK, my 11yr old dd has not been diagnosed PANDAS but has been diagnosed with TS. Has many throat infections, had scarlet fever as a small child and many of the usual PANDAS symptoms. She gets into terrible rages and has sudden increases in tics, thats when I know her throat is bad again without even looking. I take her to the DR and as soon as she's on antiobics, it all improves. She is due to have her tonsils removed at the end of July because of repeated tonsilitus and missing school. I have asked for antibiotics before and after surgery but she can't have her usual Erythromycin because it interacts badly with aneasthetic. Our paed has suggested another drug she has never had before; Azithromycin. He says she can only have it once a day for three days before surgery. This doesn't follow any of the PANDAS advice re tonsilectmy as I would have liked a longer course. My concerns are that it has been linked to cardiac problems and deaths. My dd has never had her heart checked but she does occasionaly have chest pains. I had always thought it's anxiety but am not sure. I'm worried this drug and general anaesthetic, plus maybe an undiagnosed heart condition could be a very bad combination. I'm also not convinced about the drug itself. I've read it isn't very effective at treating strep, can cause reinfections and so should be taken for 5 days instead of the 3 my Dr suggests. But then I read a study that showed the fifth day of taking this was the day most people affected suffered heart problems and died. I will voice my concerns but wonder if she should take this drug prior to surgery at all. Will they check her heart first? They should also check potassium and magnesium levels before prescribing this drug so that would mean taking bloods. The NHS here moves slowly and I don't think we have time to get all this done before te 31st but I'm not content to just take the Drs advice at face value and 'risk it'. I'm getting so stressed about complications, I wonder if she'd be better just getting the tonsils out without abx and having erythromicin for two weeks after? None of the options seem ideal and I don't seem to have much of a choice. Any advice or info would be appreciated. Thanks very much. x

Hi all, Am back again as we have just got a date for Stella to have her tonsils out, 31st July, so very little notice! Our pediatrician previously said he'd 'discuss' use of antibiotics for ten days before and after surgery, once we got a date for he op, so I'm in the process of geting this sorted. Will try to push for a longer course if possible but even getting ten days each way isn't easy. My concern again now is getting antibiotics in the future if Stella has symptoms but no infected or enlarged tonsils to show the Dr. Having never had a PANDAS diagnosis, it's tricky. I'm considering looking for a sympathetic, private GP who I can pay for antibiotics and wondered if anyone in the UK has gone down this route? Or a private PANDAS doc who can offer is a safety net in the future.? Any advise on wher to go next would be great. We had no joy at Great Ormond Street ( Stella was pretty symptom free at our appointment and they were not interesedt in PANDAS as a diagnosis) so private now seems to be the only thing we haven't tried.

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.

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...

Any help re UK doctors would be really appreciated.

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.

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.

Hi Lydiasmum and missmom, thanks so much for your replys. Lydiasmum, I totally agree that Stella would be better on continous abx but no chance of that at the moment. On the bright side, the GP was much more helpful yesterday than I expected and gave us another weeks worth of Erythromicin which I hope willl get this current bout under some control. It took some doing to get that and I went armed with PANDAS info expecting to be laughed out the room but he said he had heard of it though was clearly no expert. The one symptom Stella doesn't have is the frequent urination which has always put some doubt in my mind. The main symptoms indicating infection are her extreme mood swings and bedtime anxiety. It's good to hear your dd is getting some relief from her symptoms and a great comfort to get some feedback from the UK. Also great to hear GOSH are open to autoimmune causes so will chase that appointment this week too. Missmom, I mentioned seeing an ENT, but our GP wants some blood tests done first; glandular fever screen, full blood count, ESR (?) and ASOT and Anti DNase (?). If anyone can fill me in on what these last two are, I would be grateful. I certainly won't go through the T and A removal without abx and a supportive ped though so thanks for helping me come to that decision. It's good that the GP has taken an interest but I'm slightly concerned that I'll be stonewalled if these bloods come back showing anything that may discount PANDAS so will wait and see. Again, thanks for the replys. it really is a godsend. Best wishes x

Please excuse spelling mistakes above. I am completely knackered from lack of sleep (having imaginary conversations with Doctor!!)

Hi everyone. My ten year old daughter is diagnosed with TS though I believe she has PANDAS. At the moment she is on her third course of antibiotics for throat infection since March (she is allergic to penicillin so has erythromicin). As soon as she finishes the course, ten days later the infection is back. After a week of her waking up screaming at night, having horrible thoughts and images in her head and difficult behaviour in the daytime, I could smell the infection on her breath and went to the doctors but he said he would not prescribe as the tonsils didn't look 'bad enough'. Over Easter weekend we went to out of hours docs who gave meds and advised to get a swab at docs to check if another antibiotic would be more effective, when they opened again on Tuesday. Went to docs on Tuesday who said tonsils were getting better so antibiotics are working and theres no point in taking a swab. I am continuing with the erythromicin but will go back to docs this Friday and try to get a longer course to hopefully get the infection to go but, despite the improvement in her throat, she is not responding to the antibiotics as well as usual. She is still suffering from anger, anxiety and pronounced tics which I would expect to decrease on a course of antibiotics. I will be asking for referral to an ENT re possible tonsilectomy as she is not recovering and has missed 3 weeks of school so far this year. However, as the doctors refuse to accept any link between tics and tonsils, they won't issue antibiotics before and after surgey as is recommended with PANDAS. Also, once tonsils are removed, if she presents PANDAS symptoms; worsening tics, anger, anxiety etc from a hidden strep infection, how will I get antibiotics without the visible infections that doctors here recognise? This is my concern. Without any medical back up I am at a loss what to do. It's two years since I asked for help with her tics and we have not even seen a specialist in TS (on list with Great Urmond Street) so help with PANDAS is pretty unlikely. Any advice would be appreciated.