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Lydiasmum

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  1. Like
    Lydiasmum got a reaction from prestopony in Ideas for dealing with separation anxiety?   
    This is a tough one. Separation anxiety/general anxiety, in our case, was the worst symptom for our daughter. I remember like it was yesterday not being able to go to the bathroom without her following. Her gran couldn't even get to take her out without mum or dad going. Luckily, it did eventually improve with 6 months of prophylaxis abx but was the last symptom to improve. Even now DD doesn't have the confidence of her peers. They are all having sleepovers etc., but DD isn't anywhere near this.
     
    Take small steps and try not to show how frustrated you are (hard as this is). It really does improve with time. You won't be at this crisis point for long. Improvement for us happened very gradually. One day at a birthday party I thought how great it was DD went off to dance on her own without holding my hand! Then she sat at the dinner table with her friends and didn't notice I wasn't stood behind her. Went to the toilet on her own without a second thought.....
     
    DD overall is 95% better since major episode 2 years ago She still takes prophylaxis for now and she will have minor relapses with viruses etc. But, despite separation anxiety being the one symptom we see decline first when she gets ill, it is nowhere near as debilitating. She just gets more nervous and on high alert for a week or two. No - she's not like her friends quite yet. But she did stay at a friend's for tea for a whole 2 hours last week without me - and didn't want to go home when I turned up to collect her! She was so proud of herself and because it went well for her (i.e. nothing 'bad' happened and mum did come back), she is now primed to do it again soon. She is actually looking forward to the next time. She will just be much older when she does all the independent things like sleepovers at friends.
     
    Word of warning though, I have been seeing a therapist to help me cope with PANDAS PTSD and I have discovered how much of an influence I can actually be on my daughter's anxiety. Without realising, I have been just as nervous as her (or worse?) at the thought of her being independent ('oh my god, she couldn't possibly do that.... worry, worry, worry.....people don't understand, that will set her right back'....etc. etc. etc.......) All those thoughts I have because I too am scarred from years of rollercoaster behaviour and trying to prevent disasters. We, as mums, have a duty to protect. This is our second nature and we do so many things we are not aware of. You are now programmed to condition the environment to your DD's needs. It doesn't matter she is getting so much better, fresh in your mind are those awful reminders of worse times. When will it happen again? Be mindful of the fact that we influence our children so much: I didn't know I was holding DD back until a stranger told me.
     
    I hope things improve for your family real soon. Hang on in there............
  2. Like
    Lydiasmum got a reaction from MaureenL in Request for success stories please!   
    Wow, thank you so much everyone. Your responses have made me smile (it's been a while). We are 18 months in to this nightmare and we have had 3 true flares and a few minor ones. Out of the 3 biggies though, I can honestly say the last 2 were not as dramatic as the first initial onset that made us sit up and say "what the *****?!" My daughter is on prophylaxis antibiotics and I use ibruprofen some days when mood is very erratic and it does seem to help a little. I have been struggling to enjoy those days and weeks that are good and this is going to change. I pray we are heading in the right direction - just like you guys! Thank you all. Keep the good stuff coming!.........
  3. Like
    Lydiasmum got a reaction from MaureenL in Request for success stories please!   
    Hello everyone. I am struggling with positive mental attitude in any shape or form at the moment, even though my DD is in a relatively good place. The usual PANDA parent complaint - I am always looking for every little sign of a relapse. It's doing my head in.
     
    Assuming that families with the worst behind them are still using this forum, can I please ask for some good stories and how things really can change for the better. I would love to read about recoveries right now to give me something to look forward to.
     
    Thank you x
     
     
  4. Like
    Lydiasmum got a reaction from MomWithOCDSon in Mum's health (just thinking aloud)   
    Hi,
     
    My DD7 is suspected PANS (she'll always be 'suspected' as long as we live in the UK....). Thinking about my own history and health issues, I find this interesting and there MUST be a link:-
     
    - Age 3 to 7 I had numerous sore throats (apparently I was one sore throat away from a tonsillectomy)

    - Age 7 to 15 - mild eczema and very severe hayfever that needed prescription antihistamines

    - Age 8+ lots of fears (heights, spiders etc.) and excessive worrying (I still do!)

    - Age 14 (around exam time) a period of trichotillomania that lasted a year, coin-sized bald patches all over my scalp!

    - Age 18+ mild OCD and paranoia (convinced people talking about me), highly sensitive to others body language/facial expressions, need for symmetry in my living environment, use of my favourite numbers for various routines etc. etc.

    - Age 25 - got very ill with a chest infection that antibiotics just wouldn't solve (needed 3 rounds, but figure it must have just gone on its own after 3 weeks). Since this time I have had regular flare-ups of hives and angioedema - I get huge red, itchy swellings on areas of my skin where pressure is applied. This affects my feet the worst and seems to flare-up with hormonal changes and if I've been eating rubbish food. I take antihistimines daily (H1 and H2 blockers), Vitamin D (I have found to have a significant deficiency), turmeric for inflammation and a multi-vitamin complex. This combo is helping but hasn't resolved symptoms completely. I have been thoroughly allergy tested and blood tested over past 15 years but nothing obvious! The only thing that shows up on blood results is high inflammatory markers and negligible vitamin D.
     
    I consider myself a well-functioning individual at 40 years old, but tbh I do worry a lot (even before PANS hit us), have mild OCD and fixations - and still scalp-pick if I get stressed.
     
    Just thought this was interesting, considering my (mildly autistic?) daughter woke up with full-blown TS one morning - after having loads of sore throats that, of course, were always viral. My GP looks at me like I have two heads when I mention it.
  5. Like
    Lydiasmum got a reaction from Aspen in Ideas for dealing with separation anxiety?   
    This is a tough one. Separation anxiety/general anxiety, in our case, was the worst symptom for our daughter. I remember like it was yesterday not being able to go to the bathroom without her following. Her gran couldn't even get to take her out without mum or dad going. Luckily, it did eventually improve with 6 months of prophylaxis abx but was the last symptom to improve. Even now DD doesn't have the confidence of her peers. They are all having sleepovers etc., but DD isn't anywhere near this.
     
    Take small steps and try not to show how frustrated you are (hard as this is). It really does improve with time. You won't be at this crisis point for long. Improvement for us happened very gradually. One day at a birthday party I thought how great it was DD went off to dance on her own without holding my hand! Then she sat at the dinner table with her friends and didn't notice I wasn't stood behind her. Went to the toilet on her own without a second thought.....
     
    DD overall is 95% better since major episode 2 years ago She still takes prophylaxis for now and she will have minor relapses with viruses etc. But, despite separation anxiety being the one symptom we see decline first when she gets ill, it is nowhere near as debilitating. She just gets more nervous and on high alert for a week or two. No - she's not like her friends quite yet. But she did stay at a friend's for tea for a whole 2 hours last week without me - and didn't want to go home when I turned up to collect her! She was so proud of herself and because it went well for her (i.e. nothing 'bad' happened and mum did come back), she is now primed to do it again soon. She is actually looking forward to the next time. She will just be much older when she does all the independent things like sleepovers at friends.
     
    Word of warning though, I have been seeing a therapist to help me cope with PANDAS PTSD and I have discovered how much of an influence I can actually be on my daughter's anxiety. Without realising, I have been just as nervous as her (or worse?) at the thought of her being independent ('oh my god, she couldn't possibly do that.... worry, worry, worry.....people don't understand, that will set her right back'....etc. etc. etc.......) All those thoughts I have because I too am scarred from years of rollercoaster behaviour and trying to prevent disasters. We, as mums, have a duty to protect. This is our second nature and we do so many things we are not aware of. You are now programmed to condition the environment to your DD's needs. It doesn't matter she is getting so much better, fresh in your mind are those awful reminders of worse times. When will it happen again? Be mindful of the fact that we influence our children so much: I didn't know I was holding DD back until a stranger told me.
     
    I hope things improve for your family real soon. Hang on in there............
  6. Like
    Lydiasmum got a reaction from lpop in Acute Onset of tics   
    Your post made me cry because I could have written it about my daughter. She is now 6 and I need to tell you she is doing well. The dreaded PANDAS (or maybe PANS) hit us when she was 4. She woke up one morning with all manner of crap going on. Tics were so bad she couldn't walk or use a pen properly and forget sitting to watch her favourite programme or eat a meal - she just squirmed around constantly in a state of unrest. She also blurted random meaningless stuff and constantly shrugged her shoulders and grimaced her face. She was so anxious she wouldn't leave a room on her own and all of this started after more than a year of constant 'viral' sore throats and other illnesses. Unfortunately, it also coincided with beginning school so everyone wanted to blame it on that. Maybe it came about because of severe anxiety? No, I think not - I knew it was more and set about my mission to find some answers. The only one I got was a probable tourettes diagnosis and I started to resign myself to the fact that my precious girl was in for a lifetime of bullying, low self-esteem and frustration. 3 months after initial crisis things calmed down on their own - only to resurface 3 months after that. She got a sore throat covered in red spots so at the doctors I requested a throat swab. Group A strep was confirmed. This didn't stop the GP treating me like I was mad and should stop surfing the net and get a life. I had seen these symptoms before so this was probably strep throat number 5 by now and this was the only one that got the needed antibiotics. With lots of persuasion (and death by information overload!) DD's ped. agreed to prescribe antibiotics and she stays on erythromycin daily in an attempt to prevent further strep episodes - she has been doing this for over a year and I admit I am scared to stop them.
     
    Fast forward 2 years and I am glad to say DD is in a much better place. Year 2012 was awful, 2013 better and 2014 better again - she is happy, social and doing well academically. We do see minor stuff with illnesses - but it is not that obvious to others that she may be blinking her eyes too much, or she is a bit more hyper and crazy than normal, or that noises are bugging her again. I notice but I am her mum and I still dread a relapse. So far so good though, in a few days the minor stuff takes a hike and she resorts back to her new baseline of pretty good (95%) I too have post traumatic stress so I can bet this is what you are dealing with. It is awful and I totally understand what you are going through. I want reassurance that the worst is behind us, never to return - but no one can give me this. We are getting back to normal as a family - this is our new normal, it is different but it isn't desperate any more. We all enjoy things again.
     
    I wanted to post this because your story is nearly identical. You are where I was two years ago. In time, you will not be there and you too will be telling your story to someone who finds themselves at the beginning of the nightmare. Things do get better with time. Good luck - I am sending lots of healing prayers your way.
     
    Take care.
  7. Like
    Lydiasmum got a reaction from Josie in Forever Grateful.....   
    I feel like writing this today - for my DD's pediatrician and for all of you on this forum.
     
    Thank you Mr C - for putting up with my relentless pleas for help, the endless emails and offerings of information which you read, for fitting me in for an emergency appointment when you were already overdosed with waiting lists and appointments. Thank you for bothering to find out about PANDAS even though you admitted knowing very little. Thank you for believing in me and for prescribing the prophylaxis abx, despite what our GP decided. Thank you for answering my emails and for accepting my phone call when I was in floods of tears and desperate. Thank you for having an open mind.
     
    I also want to thank this support group on ACN Latitudes - I spent countless nights (all night) on the internet looking for anything that may explain why my little girl suddenly changed, why she was so frightened of everything, why she wouldn't leave my side, why we had to go through the same bedtime ritual every night, why she couldn't sit still or concentrate, why her body constantly writhed around and she was constantly making strange sounds, why she suddenly started peeing every 5 minutes with no hint of a bladder infection. Why, as her mother, I felt completely helpless and desperate. I found so much information here..... thank you parents for sharing your experiences. It has helped immensely.
     
    Today I am looking out of the window watching DD playing with her friends in the garden. Enjoying their company. Feeling proud that she went to a friend's house on her own without me. She will relax in the armchair after tea, watching her favourite programme, being comfortable in her own skin, wearing the pyjamas she loves with the seams that no longer bother her. Drifting into a relaxed sleep with no fear of thunderstorms, hailstones or monsters. And waking up happy in the morning with another fun-filled day ahead.
     
    Dare I relax??? Would it jinx this lovely euphoric feeling that has blessed our family this past few months? I can only pray it will not. There is a positive side to this nightmare - when times are good, boy do we appreciate them! We will never take the little things for granted again.
     
    So THANK YOU!!!!!! God bless you all. X
  8. Like
    Lydiasmum got a reaction from MomWithOCDSon in Forever Grateful.....   
    I feel like writing this today - for my DD's pediatrician and for all of you on this forum.
     
    Thank you Mr C - for putting up with my relentless pleas for help, the endless emails and offerings of information which you read, for fitting me in for an emergency appointment when you were already overdosed with waiting lists and appointments. Thank you for bothering to find out about PANDAS even though you admitted knowing very little. Thank you for believing in me and for prescribing the prophylaxis abx, despite what our GP decided. Thank you for answering my emails and for accepting my phone call when I was in floods of tears and desperate. Thank you for having an open mind.
     
    I also want to thank this support group on ACN Latitudes - I spent countless nights (all night) on the internet looking for anything that may explain why my little girl suddenly changed, why she was so frightened of everything, why she wouldn't leave my side, why we had to go through the same bedtime ritual every night, why she couldn't sit still or concentrate, why her body constantly writhed around and she was constantly making strange sounds, why she suddenly started peeing every 5 minutes with no hint of a bladder infection. Why, as her mother, I felt completely helpless and desperate. I found so much information here..... thank you parents for sharing your experiences. It has helped immensely.
     
    Today I am looking out of the window watching DD playing with her friends in the garden. Enjoying their company. Feeling proud that she went to a friend's house on her own without me. She will relax in the armchair after tea, watching her favourite programme, being comfortable in her own skin, wearing the pyjamas she loves with the seams that no longer bother her. Drifting into a relaxed sleep with no fear of thunderstorms, hailstones or monsters. And waking up happy in the morning with another fun-filled day ahead.
     
    Dare I relax??? Would it jinx this lovely euphoric feeling that has blessed our family this past few months? I can only pray it will not. There is a positive side to this nightmare - when times are good, boy do we appreciate them! We will never take the little things for granted again.
     
    So THANK YOU!!!!!! God bless you all. X
  9. Like
    Lydiasmum got a reaction from lovemylittleguy in Forever Grateful.....   
    I feel like writing this today - for my DD's pediatrician and for all of you on this forum.
     
    Thank you Mr C - for putting up with my relentless pleas for help, the endless emails and offerings of information which you read, for fitting me in for an emergency appointment when you were already overdosed with waiting lists and appointments. Thank you for bothering to find out about PANDAS even though you admitted knowing very little. Thank you for believing in me and for prescribing the prophylaxis abx, despite what our GP decided. Thank you for answering my emails and for accepting my phone call when I was in floods of tears and desperate. Thank you for having an open mind.
     
    I also want to thank this support group on ACN Latitudes - I spent countless nights (all night) on the internet looking for anything that may explain why my little girl suddenly changed, why she was so frightened of everything, why she wouldn't leave my side, why we had to go through the same bedtime ritual every night, why she couldn't sit still or concentrate, why her body constantly writhed around and she was constantly making strange sounds, why she suddenly started peeing every 5 minutes with no hint of a bladder infection. Why, as her mother, I felt completely helpless and desperate. I found so much information here..... thank you parents for sharing your experiences. It has helped immensely.
     
    Today I am looking out of the window watching DD playing with her friends in the garden. Enjoying their company. Feeling proud that she went to a friend's house on her own without me. She will relax in the armchair after tea, watching her favourite programme, being comfortable in her own skin, wearing the pyjamas she loves with the seams that no longer bother her. Drifting into a relaxed sleep with no fear of thunderstorms, hailstones or monsters. And waking up happy in the morning with another fun-filled day ahead.
     
    Dare I relax??? Would it jinx this lovely euphoric feeling that has blessed our family this past few months? I can only pray it will not. There is a positive side to this nightmare - when times are good, boy do we appreciate them! We will never take the little things for granted again.
     
    So THANK YOU!!!!!! God bless you all. X
  10. Like
    Lydiasmum reacted to amyjoy in West Coast PANDAS/PANS Symposium April 26 by SFO   
    Lydiasmum, if you would like, you can PM me your email and I will pass it on to a wonderful mom in the UK who would likely be happy to contact you. No pressure, just an offer. Its got to be lonely out there.
  11. Like
    Lydiasmum got a reaction from Missmom in Request for success stories please!   
    Wow, thank you so much everyone. Your responses have made me smile (it's been a while). We are 18 months in to this nightmare and we have had 3 true flares and a few minor ones. Out of the 3 biggies though, I can honestly say the last 2 were not as dramatic as the first initial onset that made us sit up and say "what the *****?!" My daughter is on prophylaxis antibiotics and I use ibruprofen some days when mood is very erratic and it does seem to help a little. I have been struggling to enjoy those days and weeks that are good and this is going to change. I pray we are heading in the right direction - just like you guys! Thank you all. Keep the good stuff coming!.........
  12. Like
    Lydiasmum got a reaction from amyjoy in Request for success stories please!   
    Hello everyone. I am struggling with positive mental attitude in any shape or form at the moment, even though my DD is in a relatively good place. The usual PANDA parent complaint - I am always looking for every little sign of a relapse. It's doing my head in.
     
    Assuming that families with the worst behind them are still using this forum, can I please ask for some good stories and how things really can change for the better. I would love to read about recoveries right now to give me something to look forward to.
     
    Thank you x
     
     
  13. Like
    Lydiasmum got a reaction from rowingmom in Mother is the Trigger   
    I believe I am the trigger and the cause of my DD's PANDAS flares. I have "delayed pressure urticaria" (cause unknown) but I got it in my early 20's following a severe chest infection that took 3 rounds of abx to clear. That same year I had my first (and my last) flu jab as (since the chest infection) I get mild asthma during colds/viruses. I have never been the same since that year - often painful swellings where pressure is applied to my skin, as well as swollen and stiff joints. Flares come and go. When I am good it's like it never happens, when I am in an attack I can be bedridden for 24 hours until symptoms disappear. I have had numerous allergy tests but nothing conclusive. Antihistimines don't work - but steroids do!!! Interestingly, I had virtually zero vitamin D though and took high dose to get my levels back up. My symptoms did improve after this, but not cured.
     
    So here's my thinking. I have passed on the immune disorder susceptibility to my daughter. Along come childhood vaccinations, numerous strep/other infections and viruses and the storm of PANDAS is created. My daughter seems more hyperactive, fidgety and moody when I am in a flare myself. I have been to my GP who has ruled out arthritis, thyroid etc. etc. I have put the situation to him: could my problems and my daughter's be linked up somehow. If I could find the root cause of my symptoms, could this help both of us. Of course, he looked at me like I had two heads and said "I doubt it, needle in a haystack etc. etc"... (he is skeptical about PANDAS). I am convinced. I just need to find the right GP to be interested in all of this.
     
    Luckily, my daughter's paediatrician buys the PANDAS scenario and is willingly prescribing prophylaxis abx for my daughter and she is much better than last year.
     
    My gut feeling won't go away. My daughter and I are linked up somehow in this horrible thing.
  14. Like
    Lydiasmum got a reaction from qannie47 in Would anybody be interested in starting collective Prayer?   
    I'm in definitely. Prayer never really used to factor in my life until PANDAS hit our family. I used to always wish to win the lottery.....not any more. I often visit my local cathedral and light a candle for my daughter and all the other children and families having to struggle to cope every day. We must remember something good will always come from something bad - we now appreciate the good times so much more these days and never take them for granted. Sending you all lots of healing good wishes. x
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