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Everything posted by london

  1. Wait, My DS has this also! It's been unexplained for so long! C.R.A.Z.Y. How everything that has been unexplained for so long relates back to the PANDAS. I know, so crazy! And this one is scary right? I have video of my son presenting with this while his arms were doing strange movements and him calling out to me in the middle of it so scared of what was happening to him. At first I thought he was doing it on his own but then it became apparent that it was not. Several docs confirmed chorea and choreiform movements from this and several other videos. Thank you for all the replies. Can I just ask - when did you/do you see these movements? Are they there all the time or do just certain emotions or events seem to trigger them? Thanks.
  2. We had a phone consult with Dr T who said our DS was textbook PANDAS. Unfortunately, I think we could also have narcolepsy in the picture as well. Every so often DS has 'odd' facial expressions, often on exertion. It is mainly confined to his face, particularly his mouth. It is like a grimace or tightening of his mouth muscles. Sometimes he holds his hand a bit 'odd' where it looks like his fingers overlap. This is most likely seen if he is tired and exerting himself or concentrating on a physical activity. I am trying to distinguish this from cataplexy. Cataplexy is a symptom of narcolepsy where muscle control is lost in response to a strong emotional trigger. I am unsure how facial choreiform presents itself in PANDAS. Hascanyone experienced this? If so, what does it look like? Are there any specific triggers and how long does it last for? Is it intermittent or constant? I know this board is not about narcolepsy and its symptoms but I'd be very grateful for any insight in facial choreiform in PANDAS kids. Many thanks L
  3. Whenever DS is sitting still and especially when he is tired, he runs his fingernails all over his body. This always baffled me and I was never sure what significance it had, other than being unusual and something that he'd never done before. He can't really explain why he does it, other than 'it feels nice'. He runs his nails hsrd enough to leave a trail but not a scratch or broken skin. The white line can take several minutes to fade - I've read about Sergents White Line Test and adrenal fatigue. Anyone else seen anything like this?
  4. As part of my on going quest to find the right answers for DS, I contacted Dr Trifiletti and asked about phone consults. He replied to me (almost instantly! saying he'd be happy to set one up. Has anyone done this before? What can I expect ie how long does it take, what info should I send beforehand and how much is it likely to cost? Thanks for any info. I suddenly feel really nervous! What if I don't get the whole story put across accurately? L
  5. 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
  6. Sorry couldn't get edit button to work! It was Dr Kovacevic that I emailed in the US. I'll also bump up my previous post re UK PANDAS savvy docs in case you've seen it. I got really helpful replies to this.
  7. 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.
  8. Hi We are also based in London and can totally relate to how hard it is to find the right support here. Our 7 year old showed sudden behavioural changes and extreme fatigue after strep throat and impetigo. Tics were not so big an issue for us, until recently when he started a 'clicking' when he spoke. He mainly showed severe separation anxiety, mood swings, paranoia, frequent urination and bed wetting, along with extreme tiredness. His ASO result was slightly elevated, but this was overlooked by paediatrician! Our neurologist suspected narcolepsy and sleep tests came up positive for this. HOWEVER, in the last 4 months, DS has been prescribed two courses of antibiotics, firstly pen v then Cefuroxime and the changes in his behaviours, although not his tiredness, have been astonishing. It was like having my little boy back again. Unfortunately the improvements start to slip away, although they did stay for longer after Cefuroxime compared to pen v. Our neurologist is adamant we are dealing with straight forward narcolepsy and is very skeptical of PANDAS but I can not ignore the improvements after antibiotics. Like you we are still battling to find the right care for DS. No one seems to have a clue - I am better read than them. The best advice I can offer from our experience is: 1. as the other poster said read read and read and go armed with your info. Don't be afraid to challenge what you are told by the docs because chances are you've read more than them 2. If the first type of antibiotics dont work go back to your GP and ask to try something different. There are several publications that report how ineffective penicillen is against strep. Try googling these. Previous posters on this site have given fab links to these. We only got Cefuroxime by chance because we were in Dubai on holiday when DS got ear infection. The docs there almost scoffed at our prophylactic pen v, and said they'd 'give us the good stuff instead'. We often get pen v prescribed in UK because it is cheap. However, be aware that GPs can't prescribe 'outside the book' - need consultant level care for this. 3. Don't start to believe you are neurotic. We know our children. One pediatrician told me to stop 'making up stories' - just before DS tested positive for narcolepsy. I still often question if I am imagining all the PANDAS signs, and then I read back through all my records and know it is not just in my head 4. If you have a good pediatrician but they have little knowledge of PANDAS, ask if they willing to consult with a US doctor for treatment advice. Our paediatrician is currently treating a patient on advice of New York doctor. That child's mum got so sick of docs in UK. We're still pushing to get details of this NY doc. If we do I'll post you the info. 5. Our paediatrician told us to to see Prof Peter Hills. He apparently is PANDAS aware. He is also listed on Saving Sammy's list of Internstional Care Providers along with a couple of others. However he does have an 11 week waiting list to see new PRIVATE patients, who knows how long his NHS list is. 6. I also emailed a couple of docs in the US. DR K Mikovecic (?) emailed me back to confirm symptoms compatible with PANDAS. Doesn't help directly with treatment but does give extra weight to your case when battling to find help in the UK. Sorry for the length of this post. We are still battling every day to find the right care for DS. While I think he probably does have narcolepsy, the PANDAS symptoms are so clear to us and I feel I owe it to him to do my utmost to get an answer to that before going down a lifelong path of stimulants, especiallly after the improvements from antibiotics. Hope some of this helps a little. Good luck and let us know how you get on. L x
  9. Thank you so much for your replies. I'm going to email them all and see where it takes me!
  10. 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
  11. Thank you for your replies. Our doc agreed to prescribe Azith, but only in the standard tiny dosage, just a three day course. I am concerned that this is nowhere near long enough to make any difference, especially when I read how long others need to be on it for. I guess I just need to monitor DS very carefully and go back again with feedback re change or lack of change. I'm so worried about the permanent damage that is being done by his strep antibodies still being elevated, especially as we are also looking at a diagnosis of narcolepsy.
  12. Hi I am due to see the doc tomorrow to argue my case for DS getting some stronger antibiotics. We've done 20 days of penicillen. Days 5 to 10 of this were great, we saw an incredible improvement in his mood and quality of night time sleep. Extreme tiredness persisted but I wouldn't really have expected this to lift quite so quickly anyway. ASO titers have been elevated since at least nov 2011, and were still elevated at our latest test in Feb 2012. Having had my faith in the medical profession severely battered, I want to go in with an idea of what I should get for him. My question therefore is which antibiotic? Is Azith better than cephalosporins or is there anything else better? I saw a previous thread linked to reports comparing cephalosporins to penicillen (thank you!) but how about Azith? Thank you!
  13. Early on when we were trying to work out what was happening with DS I actually asked two different doctors if this could be narcolepsy. Both said no because even their understanding of narcolepsy was that he would suddenly have sleep attacks. I've since discovered that in the early stages, narcolepsy can present itself as excessive daytime tiredness, not necessarily falling asleep uncontrollably. His positive MSLT sleep test showed that his sleep cycles are all messed up and not only is he extremely tired but he also went into REM sleep very quickly ie within a few minutes, while this should normally happen after about 1 to 2 hours. This is highly indicative of narcolepsy. I don't want to be in denial over narcolepsy but his emotional and behavioural changes are SO like what I've read about in PANDAS. It seems that sleep cycles in most PANDAS kids are pretty messed up as well, perhaps just in a different way in that they struggle to get to sleep. I am curious how many of them would also have narcolepsy-like sleep cycles if they were to be tested ie going into wrong sleep phases at the wrong times! I am so worried that PANDAS is totally dismissed and the cause of his behavioural changes is all put down to tiredness and never actually properly addressed, and we instead end up purely on a lifetime path of stimulants. It is so difficult when you feel the docs have made their diagnosis and closed their file.
  14. Thank you so much for your replies. The information shared on this website is amazing. A big problem we have in the UK is , from my experience anyway, that there isn't a huge out there about PANDAS. I hadn't heard of it and happened to stumble across it on here when searching for answers of what was going on with DS, when the best my ped could offer was 'non specific post viral' . Apart from the extreme tiredness, many of the things I've read on here have been SO close to what we've been going through. For us, as I say tics and OCD have not been severe and any skeptic would I'm sure write them off as me being neurotic, but so much else has been like a light bulb moment. I've since discovered our neuro has been flatly WRONG about some of her facts ie a blood test she claimed to be 100% conclusive of narco is also present in 30% of population, and Ritalin should not be first choice drug. Thank goodness for the Internet and all the fab information you're able and willing to share.I'm midway thru trawling thru the 200 odd pages of postings to arm myself with as much info as possible to fight DS case and make sure he gets the right treatment for the right diagnosis. So thank you all again for answering not just my question but all those that have gone before me as well. L x
  15. Hi We are UK based and have been trying to get to bottom of DS7's excessive tiredness and mood swings. Quick run down of symptoms: Feb 11:sore throat and Impetigo (no throat swab done but suspect retrospectively may have been strep throat) April- onwards: increasing signs of separation anxiety, mood swings, general melancholy, possible mild OCD eg wanting to collect 'rubbish' when out and never wanting to part with anything, very defiant. We put this down to 'a phase'. Developed staph infection on bottom that didn't clear with antibiotics Aug 11 frequent urination, toilet accident first time since toddler. Waking every night to come into our bed - again not done so since toddler Sept 11 worsening mood swings, defiance intolerant of siblings, extreme tiredness kicked in, falling asleep after school every day Oct 11 above symptoms ongoing, frequent bedwetting, school reports frequent toilet trips. See ped re tiredness. Conclude post viral fatigue. Bloods all 'clear' Nov 11 all symptoms on going. Start to notice 'odd' facial weakness/grimace, worsening moods, disrupted sleep. Still conclude post viral fatigue Dec 11 no improvements. Notice 'tutting' of tongue intermittently. Will be very noticeable for a day or so then disappear completely. Ped now thinks I am neurotic but orders MRI,EEG to reassure, along with appt to see neurologist Jan12 MRI, EEG all clear. Neuro suspects narcolepsy and orders sleep studies. Meanwhile discover elevated strep titers were missed in blood test in Nov (ASOT level 400) Bloods redone to review ASO trend. Feb 12 strep level still elevated. Prescribed Pen V. Sleep MSLT tests positive for narcolepsy but that alone cannot be conclusive so further bloods order and referral to ped narcolepsy specialist. 3-4 days into abx, still suffering extreme tiredness but sleeping in own bed 11 hours every night and moods swings improved massively. I have my happy, light hearted boy back. Going well for 10 days, sleep starts to break up again and feeling 'an edge' to his mood again. Follow up with neuro but I feel she has closed the file and concluded narcolepsy and wants to prescribe Ritalin. I feel she has ignored any improvement we saw on abx and has dusmissed this as possible treatment plan. Strep anti bodies are still at same levels from Nov but she has no plans to deal with this, saying that is possibly been the trigger for narcolepsy. I know narcolepsy is not what this board is all about but feel like I'm hitting my head off a brick wall. Narcolepsy may be our ultimate diagnosis but I can't ignore the improvement we saw on antibiotics. Thankfully we do not have severe OCD or tics but I know DS's behaviour has changed massively since Feb last year but I only started documenting it all when the severe tiredness kicked in. I initially put all his behaviour down to phase.hormones and more recently his tiredness. I want to push for another stronger course of abx instead of straight off going down a lifelong path of Ritalin. Sorry for the length of this post and I am sure I've still missed off loads of details. Any advice or comments would be greatly appreciated. Thanks London mum
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