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Plum99

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  1. Like
    Plum99 reacted to Hitman3161 in Life!   
    Dear All,
    I don't really have much of a purpose writing this post other than to describe to you the devastating repercussions and consequences that life a side has thrown me whilst being 'locked in' to this illness.
    Here in the UK, I'm a struggling university student currently on medical leave - the responsibility, time, planning and organisation of placement and finance is a huge burden for all, let alone for someone severely incapacitated.
     
    My story follows a familiar relapse/ remitting course of illness for several years. For the best part of 8 months I've been walking around in hazy fog totally unable to organise my thoughts, my short term memory is shot and I've had much difficulty in general functioning full stop. The worst part of this illness is the ignorance and lack of support I've received from my own family, who have expected me to 'just picks things up'. It may appear to some from an outside perspective that I'm simply dealing with a clear case of munchausen, but pure isolation coupled with blasé style of wilful ignorance has kept me battering on to my parents for the help I feel I need.
    Time is precious and flies by very quickly, the new academic year is upon me, and I'm still entirely dysfunctional. I realise that yet again, I will have to postpone my return to everyday functional life and the chance to succeed in education.
    I've exhausted all available help from the NHS, and now my fate really does lie in the hands of Dr K and the financial resources of my parents - they simply have no due care for the symptoms I've displayed for many years, and are finding anyway possible to refute or brush off a claim of PANS/PANDAS.
    Usually, I can organise myself and everything I've done or achieved has been entirely self directed. I've had contact with a prominent neurologist in London, who after receiving Dr K's letter did acknowledge the possibility of a historical picture of pandas, but made it clear that any treatment protocols were restricted to use in children - he doesn't treat adults because of the 'lack of research'.
    My last hope is truly in Dr K, being totally friendless, having no girlfriend and my mind being on the rocks, I have no idea how I'm going to turn my life around for the 'umpteenth time'.
     
    He returns from vacation tomorrow, my parents have agreed to speak to him but are very reluctant to entertain the idea of going the extra mile despite all the suffering. What do I do? How am I going to turn this around and restore all previous function?
    I understand we are all strangers to each other, and that us guys are selectively few and far between in the everyday world. I just feel so lost, with no clear idea as to whether I will 'suddenly' get better this time.
    My ability to concentrate and organise myself is abysmal, my ability to speak fluently has just returned. And to be fair I'm no one should have to go through the terrifying or deal I have...
    I guess as the great man once said "The world is a dangerous place to live, not because of evil people, but because of the people who don't do anything about it..."
    Afterall, ignorance is always the true killer.
    Thank you guys for supporting me these last few weeks, it's kindly appreciated. I just wish the real world was the same, I long to return to my former self.
     
     
  2. Like
    Plum99 got a reaction from bobh in School taking child on class trip   
    I'm a teacher.  I've gone on class trips with different schools.  I have never worked where the medication policy was anything other than the teacher administering medication to the child.  We always had to watch the child take the medication, initial each time medication was given- this included vitamins.  Your school must have a more relaxed policy. Personally, I wouldn't like it.  Not all children make good choices, or are able to handle the responsibility.  Let them be responsible for getting their homework assignments, asking the teacher for help, and working on relationships with peers.  Medication? I don't really think that's something that should be taken so lightly by the principal.
  3. Like
    Plum99 reacted to qannie47 in Documentary: My Child Is Not Crazy   
    Just came across this documentary that seems to be in the process of being made. Shocked that I was not aware of it. Anybody have any info as far as when it will be released?
  4. Like
    Plum99 got a reaction from mama2alex in I am so thankful   
    I am so thankful for all the posts that not only give details of symptoms, links to studies, ways to treat, and especially the personal stories that let me find connection and hope.
    I am so thankful for the people who have sent me private messages, even though I have harassed them endlessly with my own meltdowns and questions. And for the people who respond to my posts too. None of you get paid to listen to me or brainstorm, but doctors do. Thank god there are people who just care.
    I am so thankful for the Internet. I realize that if I were going through this 20 years ago, i would have nothing.
    I am thankful that I can see, from my position right now, all of you who have made it at least partially over to the other side, and you're so composed, and knowledgeable. It gives me hope that my own insanity, possible PTSD, and anger that has come out of this whole situation might possibly pass, and maybe I'll be a normal human again someday.
    I am thankful for every time I read something about not accepting diagnosis, or answers, or labels, when I can see what is going on with my child. It makes me feel more and more confident each time I go through weeks of being told nothing is wrong, or nothing that is treatable anyway, that I'm going to eventually get another call telling me that actually there is still an infection. And even though no one wants to acknowledge it, we all know that this is just another time, probably the hundredth by now, that it really means that I should have been listened to, I wasn't wrong, I wasn't making things up, I wasn't spending too much time googling, and if I would have been listened to right away, this didn't have to keep spiraling. I know the message is known, even if it is disguised by criticisms and suggestions that are not relevant.
  5. Like
    Plum99 got a reaction from ibcdbwc in I am so thankful   
    I am so thankful for all the posts that not only give details of symptoms, links to studies, ways to treat, and especially the personal stories that let me find connection and hope.
    I am so thankful for the people who have sent me private messages, even though I have harassed them endlessly with my own meltdowns and questions. And for the people who respond to my posts too. None of you get paid to listen to me or brainstorm, but doctors do. Thank god there are people who just care.
    I am so thankful for the Internet. I realize that if I were going through this 20 years ago, i would have nothing.
    I am thankful that I can see, from my position right now, all of you who have made it at least partially over to the other side, and you're so composed, and knowledgeable. It gives me hope that my own insanity, possible PTSD, and anger that has come out of this whole situation might possibly pass, and maybe I'll be a normal human again someday.
    I am thankful for every time I read something about not accepting diagnosis, or answers, or labels, when I can see what is going on with my child. It makes me feel more and more confident each time I go through weeks of being told nothing is wrong, or nothing that is treatable anyway, that I'm going to eventually get another call telling me that actually there is still an infection. And even though no one wants to acknowledge it, we all know that this is just another time, probably the hundredth by now, that it really means that I should have been listened to, I wasn't wrong, I wasn't making things up, I wasn't spending too much time googling, and if I would have been listened to right away, this didn't have to keep spiraling. I know the message is known, even if it is disguised by criticisms and suggestions that are not relevant.
  6. Like
    Plum99 got a reaction from MomWithOCDSon in I am so thankful   
    I am so thankful for all the posts that not only give details of symptoms, links to studies, ways to treat, and especially the personal stories that let me find connection and hope.
    I am so thankful for the people who have sent me private messages, even though I have harassed them endlessly with my own meltdowns and questions. And for the people who respond to my posts too. None of you get paid to listen to me or brainstorm, but doctors do. Thank god there are people who just care.
    I am so thankful for the Internet. I realize that if I were going through this 20 years ago, i would have nothing.
    I am thankful that I can see, from my position right now, all of you who have made it at least partially over to the other side, and you're so composed, and knowledgeable. It gives me hope that my own insanity, possible PTSD, and anger that has come out of this whole situation might possibly pass, and maybe I'll be a normal human again someday.
    I am thankful for every time I read something about not accepting diagnosis, or answers, or labels, when I can see what is going on with my child. It makes me feel more and more confident each time I go through weeks of being told nothing is wrong, or nothing that is treatable anyway, that I'm going to eventually get another call telling me that actually there is still an infection. And even though no one wants to acknowledge it, we all know that this is just another time, probably the hundredth by now, that it really means that I should have been listened to, I wasn't wrong, I wasn't making things up, I wasn't spending too much time googling, and if I would have been listened to right away, this didn't have to keep spiraling. I know the message is known, even if it is disguised by criticisms and suggestions that are not relevant.
  7. Like
    Plum99 reacted to Plum99 in Is there a list of doctors to never go to, because I'd like to add one   
    Never mind. Sorry about this.
  8. Like
    Plum99 reacted to Bearmom in If you could make a list for a pediatrician   
    I also was lucky and found a pediatrician to treat it! I would never put a 3 yr old on Zoloft!!! I would ask for Keflex or augmenting as they are what seems to work..prefer Keflex ( Cephalexin)
    My doc uses Keflex and NSAIDS only.. and has great results. He has over 40 patients. Do not wait because the more flares there are the harder it is to get to baseline. Good luck!! The hard thing with specialists is that they don't have the big picture! A pediatrician does and can prescribe he meds needed.
  9. Like
    Plum99 reacted to sf_mom in Looking For PANDAS doctor in Southern California   
    If your child has Myamotoi Borrelia it would NOT have come up positive on standard Lyme test. It has different proteins and not testable at this time. Borrelia Spirochetes can be sexually transmitted and also passed from mother to child in-utero.
     
    We have 3 children with gestational Lyme et al PANS/PANDAS/Autism.
     
    I PM'd you a list of Dr.'s. One is located in Santa Barbara for you plus some really good Dr.'s/NP's in Bay Area. 2 of the NPs listed have children with PANS/PANDAS. Look in upper right hand corner for PM message.
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