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Everything posted by StellasMum

  1. 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.
  2. 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 (
  3. 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.
  4. 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 he
  5. 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
  6. 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 re
  7. 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
  8. 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.
  9. 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 penic
  10. 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 alway
  11. Please excuse spelling mistakes above. I am completely knackered from lack of sleep (having imaginary conversations with Doctor!!)
  12. 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'. Ove
  13. So sorry Wombat, I haven't got anything to offer really. I must admit I find a lot of the PANDAS stuff is so involved it does my head in too! Maybe you need to do some more digging and just explain the bits that jumped out at you and seemed to match your own experiences. Whilst my dd was on antibiotics last week she made such an incredibly fast improvement, there must be something in it. She seems to be going downhill a bit after finishing the course-multiple tics today-so I feel she needed a longer course possibly. Fat chance of more antibiotics from MY dr. What to do? Sorry I can't be
  14. Thanks again! The page I printed out was reasonably basic-I highlighted the parts in the 'diagnostic criteria' section that related to my dd-she had scarlet fever which is on the list.xx http://www.adhd.com.au/PANDAS.htm
  15. Thanks, that's great- I will add it to my growing file/pile in the kitchen! Reassuring too that Peter Hill said he thinks PANDAS should be treated like TS or OCD as lots of the info on it is quite unclear isn't it? Really hope you have some luck. xxx
  16. Hi Wombat, sorry to crash your thread but wondered if you could PM me those DAN drs in the UK too if you don't mind. My dd has shown something up in her throat swab so I am gearing up for a possible battle for PANDAS treatment. I hope you have some luck. If I find anything up North on my googling travels, I will let you know.xxx
  17. Hi Chemar, maybe the blood test is the way to go for intolerances then, thanks. Just took dd to docs as she said her throat was sore and asked him about getting antibiotics. He said the throat swab from last week showed a 'bug'- he wouldn't elaborate but gave us antibiotics without arguing. They didn't have the blood test back but given the tic flare up, maybe it is PANDAS? Now looking for non dairy suitable probiotic and supplements that don;t contain anything which may set her off... Meanwhile: keeping the house dust/chemical/pollen and perfume free not feeding her anythin
  18. Hi, I read about the food intolerance test using hair in another thread on here but I think the OP was from New Zealand. Have looked it up online and found one by York Labs but it seems to be out of my league financially at about £299 so I appreciate your alternative suggestions. I was hopeful to do one without having to get more blood out of my poor dd but the price is much better so maybe that's the way we will have to go. Not looking forward to getting blood out of her finger! I didn't mention PANDAS to my GP when I first went about my dds tics. He just referred me to the paediatrici
  19. Hi Chemar, I assume it was a throat swab culture test ?? I don't actually know I'm afraid. It was a bit stressful and I was just pleased they listened to my suggestion of PANDAS at all. I will have a look for a holistic doctor though we would need to go private for that. xx
  20. DD had blood test at the hospital yesterday for Strep and 'food mix'. Her tics are so bad at the moment, she couldn't possibly go to school in this condition if it weren't the summer holidays. Our family GP is on holiday but I will see him on Monday and ask if we can try antibiotics as my husband had a sore throat over the weekend which may have bought on this tic explosion if it's PANDAS. As she IS bad right now, maybe there's a better chance the strep may show up in yesterdays blood test? I hope so anyway. I really want to try getting her a food intolerance test done asap. Can anyone
  21. Hi all. Thanks Mar, I think we might have to look at the IGG test though looking online it seems to cost about £140. Am having a really black day today. My daughter broke up for the school holidays yesterday which was a relief because she is starting to have social problems due to the constant "Hmmm-mm". I thought things will be better with no school but.. We went to a little seaside town to enjoy the sunshine (we haven't had any for a while). My eldest dd(15) wanted to look in a shop but as soon as we entered, my youngest dd(8) started ticcing like crazy. Like an "urgh.urgh.urgh" so
  22. Thanks Mar, that's good to hear. I hope the test shows something up so we can help her. Every morning she sounds like she's going to cough up a furball! Then by the time I tke her to the doctors he always says 'her chest is clear', it's maddening!
  23. Hi Karol, it used to be called a RAST test and it's just a general blood test which we'll get done at the hospital. The doctor has written on the request form 'food mix' which I think just covers wheat, milk, eggs, peanuts, maybe soy? As far as getting something more specific, I think we'd have to arrange that ourselves privately. My eldest daughter had the same test a few years ago to help manage her asthma (it showed her various allergys in the form of a percentage so was quite helpful). You have to get referred by your GP so they would be your first port of call. xx
  24. Thanks Chemar, I have read through the 1st page of threads on the PANDAS page. Will take your advice and post regarding how to get a diagnosis.
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