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Everything posted by lozsdad

  1. Hi 1tiredmama My dd has been diagnoised with Pandas now for 3 years, her symptom have always been unusual so hence when she stopped eating now 6 weeks ago all of a sudden (have not seen this before) alarm bells did ring and we placed her on abx for a short period of time . Her appetite has completely disappeared, when she does eat something she gets cramps and feels nauseated and hence an easy fix for her is to stop eating. I can tell you also it is not abx related and even though she has lost over 12 kg we are not getting much assistance from doctors apart from the usual medication at beginning for nausea and an ultra sound and the usual standard blood tests. Im afraid you can only survive on dry biscuits and water for so long therfor we also need to do something soon.
  2. After 3 years with PANDAS , My dd is 14 and she has real issue's with math's, Applying formula's and how do to straight forward question's does not seem to bother her, but problem solving and analytical thinking is all too hard. It seem's she spends twice as long as anyone else to complete home work and never finishes a test in the allotted time As much as we as parents try and remove this pressure off her - she puts double the amount of pressure on herself which just exaggerates the anxiety. I am not sure whether to show her this thread as to make her realise that other children are experiencing difficulties as well with math’s to maybe give her some confidence back and show her that it may be related.
  3. periactin - please tell me more about the 5 week course they took My dd who is going on 15 has had Pandas for 3 years - had IVIG late last year and all had been going well until 5 weeks ago She has now no appetite and just refuses to eat saying she feel sick when she eats - all standard abx have not help - doctors treating symptoms also her old tic are starting to re-appear Just start a new coarse of abx ( augmentin)but we are struggling with this concept of not eating as she is drastically loosing weight
  4. Another Weird symptom - does not follow conventional Pandas symptoms( if there is such a thing) My dd has been travelling really well over the past 14 weeks - however whilst she has started talking again - still making this sneezing sound - she has now developed this constant metal taste in her mouth and is constantly feeling nauseous. When she attempts to eat she is salivating excessively. She has lost alot of weight over the past 4 weeks as she has stopped eating surviving on boiled rice, dry biscuits and water As usual doctors are treating symptoms not the problem - hence nothing is working Just wondering has anyone heard of something like this before -
  5. My dd14 had been going through constant sneezing for 12 months and then could not speak for the next 14 months - I do know that throughout this time she never cried at all or showed very little emotion but just accepted it and delt with it in her best way. We often wondered and asked her why not scream and cry and show us some emotion hence no explanation. Today she has just started speaking again and still she will not express her feelings or show emotions or elation she just accepts the hand she is dealt with good or bad ?? We do struggle with this too
  6. I just thought I would update you all on Lauren's condition - and """ WOW""" I have some fantastic news to share with all of you "SHE HAS STARTED SPEAKING AGAIN" after 14 months of not saying a word Her 3rd and final treatment of IVIG was given to her approx 8 weeks ago - and we were more or less told by the treating physician that there was nothing else he could do for us - see him in 3 months time etc, etc,etc (he never believed in Pandas - But I needed him to get the IVIG) Approx 4 weeks later she started to make sounds - a "sigh" when she became frustrated with something - a "ah uh" when she said wanted to say yes. These sound were becoming more and more prevalent as weeks passed. About 3 or 4 weeks ago she started whispering very quietly one morning - even though we could not make out what it was something was coming out of her mouth - and each day it became a little bit louder and more clear and there was no other ticing sound (chronic sneezing) coming out of her mouth. Today she is speaking again - WOW Now - the fear we all face - last week after she woke up one morning she began to sneeze again - very quietly and only lasted 30 - 40 seconds then she was ok Our hearts sunk deep into the ground - fight back tears my wife and I chose to ignore this like nothing has happened and Lauren walked out of the room - she was devastated and ran in her room crying. She had developed a cold a few days earlier so after hearing her sneeze again at this point we decided to start her on anti-biotic’s immediately as we feared we are back 2 1/2 years ago where this all started with a cold and a strep throat and no one treating her. She has just about finished her dose - and every so often we will see her sneeze quietly for about 30-40 seconds and then continue on as if nothing has happened. It is like Deja-vu when it all started at the beginning but we are sitting down and talking to her now and we are so very excited about that. She is very much looking forward to tomorrow as she had made new friend’s last year at school whom have never heard her voice before and the new year of school starts . We as a family are all extremely excited and of course anxious about the future and like all of us we can only take it one day at a time and hope the next day is better than the previous one. Thankyou all for your support
  7. Hi Amy We have well and trully been down the path of it being neurological - and all the neurologist have dropped us like a hot potatoe and passed it off as psychological. Involuntary she does make sounds like "ahhh" when somthing frustrates her or "ohhh" when she is annoyed - however try and get her to repeat those sounds and she cannot. It's not very loud but you can hear them. She also is able to laugh out loud and its always a pleasure to hear that noise. She has been seeing a speech pathologist for the past 5 months and whilst she still is not speaking she does make small wispering sounds vouluntary now which is a great sign.
  8. It has been approx 4 weeks after my daughters last dose of IVIG She has has 3 doses spaced at 4 weeks apart. During each dose her reaction - a continuous dry cough became less and less frequent after each session. This was my only way of knowing that maybe the IVIG is working and it may help her. Anyway I regretfully have to say there has been very little change as she has not woken up one morning and started talking again. All my effort were put into convincing the doctiors here that she did have PANDAS and it is a real condition and IVIG is a treatment that we need to do etc, etc, etc. So now where do I go from here ??????????????????????????????? The doctor here at the children's hospital has more or less said I cannot help you any further - which is because there is nothing more i can request from him as this has been my agenda following the advise from doctors from oversea's I now am questioning whether my daughter does really have PANDAS even though she had been diagnoised with hitting the markers with the "cunningham test" as not one of the many differnt things we have tried has even remotely helped her. She is just cannot talk as her soft pallete is just rythmically moving continuously from morning until night We have not given up hope nor have we stopped looking for answers but we are running out of new options
  9. After a long battle with many different doctors here in Australia, We have finally convinced the right doctor to try IVIG on Lauren. This was done for the first time last Friday. Lauren has still not spoken a word - it has now been 10 months. I just though i would share our experience. All we were told was to bring Lauren in at 10am frid for IVIG - Half way through the treatment she developed a dry cough so they backed of the rate and gave her an antihistamine. Her cough seemed to get less infrequent so they continued on with the IVIG at a slower rate (ran out of time to give the full amount) - this cough was still there and we were told it would eventually go. We we left that evening and on the way home this cough increased in frequency ie: every min and she began gasping for air whilst coughing. Immediately we headed back to hospital to emergancy centre where they made sure her airways were clear and injected her with adrenalin and put her on vetalinand a drip etc etc. all while she was coughing and gasping to breathe. Over a period of the next 5 hours this coughing did become less frequent, howvever we spent the night in hospital and allowed to go home the next day. Lauren today is still coughing(sounds very dry) not sure if this is a new thing and she still cannot speak The fact that she has developed a head ache makes me feel that the IVIG is doing something and she has taken paracetamol to take care of that. We need to go back and finish the dose tomorrow and even though we went through this unbelieveable nightmarish experience on Friday night we feel we need to go down this path of IVIG to get her back to one day speaking. After reading many post on IVIG our doctor here has not prepared Lauren for IVIG - as they have not told us to ensure she is hydrated before or given any instructions after - I feel this forum has a wealth of information - Thankyou
  10. Hi Ozimum We are in Melbourne too - and I did ring up the office of Dr Robyn Cosford today - was told she would not be able to see us this year who is Dr N and Dr D - any help would be great
  11. Thanks Philly I did contact him approx 4 weeks ago as he is in the public system - I have to be referred to him and then just wait - hence I started the ball rolling today and sent him a folder with all my daughters info and hopefully will get in to see him eventually - hope sooner than later ( he approx 10hrs drive away)
  12. Thank you so much for taking up you time to write to me. Like I have said my daughter has not spoken for the last 5 1/2 months - we have discovered that via a video x-ray her soft palate is just rhythmically moving continuously all the time hence causing her to produce this puffing sound - thus preventing her from talking. We have been in consultation with Dr T since last Dec and she had gone through the full regime of all drugs including Prednisone all which had no effect, Hence because she had no reaction to any of the above treatment Dr T was very surprised when the results came in (Cunningham Test) that she does have Pandas I think now our only avenue is IVIG (i think) hence I am struggling to find someone here that will even consider it which is a huge problem at this very moment. As I am sure you are all well aware nothing ever happens today or tomorrow - we always get make an appointment and see me in approx 4 weeks - well that mean 4 weeks more that my daughter is living like this - (sorry now venting) but we are working slowly through the process. Note from looking at the blood tests all the Immunoglobulins are within the range - hence Now I dont know if an immunologist will be he answer
  13. thankyou so much for responses, yes we have been to Behavioural Neurotherapy Clinic and put my daughter on muliple varieties of neutrients for a period of 4 months without any success no we have not been to an immunologist - in the many many blood testes she has under gone whar sort of deficiencies are we looking for ???? she has been tested for almost every blood test known to man kind - (i think or it just looks this way)
  14. Have been looking at this forum for a few months - and thought I would just like to tell you briefly our story and where we are at in our almost 2 year journey. My daughter whom was just about to turn 12 woke up one morning with a cold and the next day starting to sneeze ( exactly the same as Lauren Johnston) where she would sneeze (make a sound come out of her mouth with head movement and all) She would do this for 3 min on and 5 min off. This would vary but it would occur from the morning she woke up until she sneezed herself to sleep. She would often have what we called an attack where she would sneeze constantly for up 3 - 4 hours non stop. Ofcourse we saw all the relevant doctors, neurologist's, pediatricians, psychiatrist's etc, etc, etc, - to be told the same old that there was nothing physically wrong with her - must be a mental thing hence she was put on all sorts of "drugs" which nothing helped. As we have all experienced she would have her good days and many bad days. After my wife and I saw we were not getting any where, as I suppose most of you have done - we began to do our own research and did come accross PANDAS - this meant nothing to anybody here in Australia and we had to specify to or doctors that we wanted thses blood test carried out - up untill this stage no one had ever tested or even checked her for AntiDNase B etc, etc However PANDAS was either dissmissed straight away or we were told that as you cannot test for it - there is no cure hence we should be looking for something else. - ""frustrating"" My daughter did manage to go to school(aprox 40% of the time) last year - and was frequently asked to leave class by her teachers as she was a disturbance to the rest of the class because of the noise she made when she sneezed but we mangage as all of us have too. Late last year one morning my daughter woke up and she could not speak - the sneezing sound had gone and she was now making this very quiet puffing sound. From the morning until night when shen eventually falls asleep she makes this sound and hence has not spoken one word in the last 5 1/2 months. As I have read in other posts - she has difficulty in falling asleep and out of pure exhaustion each night she will eventually do this and we are extremely happy when she does sleep more than 5 hours a night. She now does attend school regulary as she is no longer a disturbance to her class as she sits there in silence not being able to speak. Thanks to the modern age of technology we live in that she can communicate via texting,face book etc with her friends. Just last week we had recieved our test results back where we had participated in the "Cunningham Test" - hence it was confirmed by all accounts that my daughter does have "PANDAS" What does this mean here in Australia - not much Where have we gone to get help - well Im sure you have all experienced the same journey seeing every doctor and specialist only to be told that PANDAS does not exist (here in Australia) anyway I feel now after reading so many wonderful post on this forum - that IVIG is probably our best chance - cannot be done here in Australia - not for PANDAS any way at this stage - I am just starting to fight this battle over next couple of weeks. We have not found one doctor here in Australia that has the for sight to reconise PANDAS and try and treat her with the same methodology that at least other children are getting treated with in other parts of the world which is the most frustrating part of our journey so far.
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