Guest guest Posted April 7, 2012 Report Share Posted April 7, 2012 Thanks Mandi, Natasa, no prescription Vlatrex or anti virals. Would this diagnosis be respected by NHS? Reason I ask is because I would like to be seen by an immunologist and existing diagnosis would probably help. I'm seeing lots of mixed advice on the NET about this ie if it'sPANDA's mustn't treat as Strep and vice versa, so assume both should be treated??? Also are people using antibiotics long term with this, is there any issue of resistance in future? was on antibiotics for over a year when he was little, many strong ones were tried and it really marked his descent into oblivion, so a bit worried on that front. Also meds such as antipsychotics or anti depressents are considered totally off limits in some quarters for treating the symptoms of PANDA's but we really need to help manage this. School are totally on board with 's sudden change as an observation, he wasn't at this school when he had this problem big time at age 6 but it was the time he was tied into a Rifkin chair in previous school. It's playing on my mind how Iv'e missed so many clues over the years but so much has gone on with him, dropping down height percentiles [2nd] and gut issues, been like wading through a sea of mud! Vicky Vicky Sorry I can;t reply to email at the mo, some AOL problem but I would suggest you see DG, I think he is the only one that will do anything meaningful for . You can see him quicker it seems by going through new clinic that he does one day per week I think than BS which is booked up. He Dx strep with Sam on examination and herpes on history Mx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 So did you do/are you still doing Zithromax with Sam? Does his school accept giving him the mess when they're from a private GP? X > > Sorry I can;t reply to email at the mo, some AOL problem but I would > suggest you see DG, I think he is the only one that will do anything meaningful > for . You can see him quicker it seems by going through new clinic that > he does one day per week I think than BS which is booked up. He Dx strep > with Sam on examination and herpes on history > Mx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 Oh they'll have no problem with Rx's its just supplements that are the problem!! We have not started yet Zithro with 5 days Prednisolone then 2 months? Then maintenance and add AV's with a week of Pred again I think, it all went by in a whosh. HE has asked that bloods be done when we go for work up with paed neuro in May ref seizures, had number 18 yesterday Mx So did you do/are you still doing Zithromax with Sam? Does his school accept giving him the mess when they're from a private GP? X>> Sorry I can;t reply to email at the mo, some AOL problem but I would > suggest you see DG, I think he is the only one that will do anything meaningful > for . You can see him quicker it seems by going through new clinic that > he does one day per week I think than BS which is booked up. He Dx strep > with Sam on examination and herpes on history> Mx> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 Oh mate, I'm so sorry to hear that. Poor you and poor Sam Xxx > > > > Sorry I can;t reply to email at the mo, some AOL problem but I would > > suggest you see DG, I think he is the only one that will do anything > meaningful > > for . You can see him quicker it seems by going through new clinic > that > > he does one day per week I think than BS which is booked up. He Dx strep > > with Sam on examination and herpes on history > > Mx > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 He's fine after bless him, I do get a feeling now when he is brewing one but couldn't tell you what it is other than mothers instinct so we didn't chelate as planned. Arsey this morning because of haircut but fine again after, what happening with Tom and AED's. We don;t even have a Dx of epilepsy, locally we only get that with positive EEG, so off to centre of excellence we go at Southampton, no point in sedated EEG I say and not part of the guidelines Margaret posted for me Mx Oh mate, I'm so sorry to hear that. Poor you and poor SamXxx> >> > Sorry I can;t reply to email at the mo, some AOL problem but I would > > suggest you see DG, I think he is the only one that will do anything > meaningful > > for . You can see him quicker it seems by going through new clinic > that > > he does one day per week I think than BS which is booked up. He Dx strep > > with Sam on examination and herpes on history> > Mx> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 Toms had 2 seizures in total and as his d3 is low enough for even the MHz to respond I think we'll do that first. I'd like him to have a spekt done rather than a sedated EEG which makes no sense to me. All Toms issues are cyclical I don't believe he has epilepsy per se. Really quite nervous about going back to a DAN formally - Toms treatment ra sometimes work. Ether on paper than on real life and he's bad enough as it is! Impressed with Irlen - his teachers very clear that blue lenses made huge difference. The autism money pit is reopened for business! :-(( > > > > > > Sorry I can;t reply to email at the mo, some AOL problem but I would > > > suggest you see DG, I think he is the only one that will do anything > > meaningful > > > for . You can see him quicker it seems by going through new clinic > > that > > > he does one day per week I think than BS which is booked up. He Dx > strep > > > with Sam on examination and herpes on history > > > Mx > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2012 Report Share Posted April 8, 2012 I mean NHS of course, bloody predictive text :-)) > > > > > > > > Sorry I can;t reply to email at the mo, some AOL problem but I would > > > > suggest you see DG, I think he is the only one that will do anything > > > meaningful > > > > for . You can see him quicker it seems by going through new clinic > > > that > > > > he does one day per week I think than BS which is booked up. He Dx > > strep > > > > with Sam on examination and herpes on history > > > > Mx > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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