pandaskid Posted March 11, 2010 Report Share Posted March 11, 2010 So he started the new antibiotic and the steroid around the same time? That's going to make it harder to see what's affecting what. Some have said that there might be an occurrance of worsening before getting better with Mycro P. There was a recent thread about that. Did you read that one or do you need a link? Im positive for Myco P. and when I went on Pred. my symptoms got ten times worse before they went away completely. So things will get better and hopefully the Pred. has longer lasting affects than they did for me. Good Luck and stay positive! It helps! PANDASkid Link to comment Share on other sites More sharing options...
wornoutmom Posted March 12, 2010 Report Share Posted March 12, 2010 Vikie: I could use the link if you have it! Tomorrow we're on 1 week of Biaxin, and last 2 days have been BAD. Came home with a bad headache from school yesterday and had the worst "exorcist" episode (for lack of a better term) we've seen in a few weeks. Scary stuff. Today he couldn't bring himself to go to school and slept until almost 1 ocklock in the afternoon did go in for last hour) He is very "edgy". We have 4 more days of Biaxin to go.... Thanks! - Rachel So he started the new antibiotic and the steroid around the same time? That's going to make it harder to see what's affecting what. Some have said that there might be an occurrance of worsening before getting better with Mycro P. There was a recent thread about that. Did you read that one or do you need a link? Link to comment Share on other sites More sharing options...
wornoutmom Posted March 12, 2010 Report Share Posted March 12, 2010 PandasKid: You seem to have such a handle on this for being 16. If you don't mind my asking, I'm wondering how all this PANDAS stuff was explained to you? My son (14) is having a hard time grasping it all with all the uncertainty, and I'm pretty sure the more I explain the more scared he gets. Any words of advice for the mom of a teen? Thanks!! So he started the new antibiotic and the steroid around the same time? That's going to make it harder to see what's affecting what. Some have said that there might be an occurrance of worsening before getting better with Mycro P. There was a recent thread about that. Did you read that one or do you need a link? Im positive for Myco P. and when I went on Pred. my symptoms got ten times worse before they went away completely. So things will get better and hopefully the Pred. has longer lasting affects than they did for me. Good Luck and stay positive! It helps! PANDASkid Link to comment Share on other sites More sharing options...
thereishope Posted March 12, 2010 Report Share Posted March 12, 2010 Here it is.. http://www.latitudes.org/forums/index.php?...c=7170&st=0 The whole discussion about PANDAS/PITAND symptoms worsening was more towards the end of the thread. A few on here have said they've experienced it. Are you giving him probiotics too? How's his stomach? How was he on the first 5 days? Vikie: I could use the link if you have it! Tomorrow we're on 1 week of Biaxin, and last 2 days have been BAD. Came home with a bad headache from school yesterday and had the worst "exorcist" episode (for lack of a better term) we've seen in a few weeks. Scary stuff. Today he couldn't bring himself to go to school and slept until almost 1 ocklock in the afternoon did go in for last hour) He is very "edgy". We have 4 more days of Biaxin to go.... Thanks! - Rachel Link to comment Share on other sites More sharing options...
Fixit Posted March 12, 2010 Author Report Share Posted March 12, 2010 spoke briefly with doc t....he said it could also be possible since his jaw was open( my mouth aches horrible after any dental work) and if he got novacaine....the shot is way back there and could all just be irritating the larinex.... ..vocals are just another muscle contraction(contracting the larinex)(which i was thinking but good to hear)and that is the one he has right now , not deemed worse than a shoulder shrug or other twitch Neuro's should all have an on call hot line when it comes to neurological problems with your kid...its' scarey stuff, and sometimes you just need a technical explanation>>> Link to comment Share on other sites More sharing options...
pandaskid Posted March 12, 2010 Report Share Posted March 12, 2010 Ive been suffering with unxplained illnesses since I was 10 years or younger at least and I just recieved my diagnosis November 2009 so it came more as a relief to have a diagnosis than an alarm. Especially since Im a senior and was a cheerleader, it was very difficult to explain to my peers and teachers and fellow cheerleaders since they were the least understanding of all my friends. When I was diagnosed it was after we got our CamK test back at over 200% and my MD explained that our strep antibodies go "whackadoo" and cross our blood brain barrier and cause our brain to become inflamed and that antibiotics and steroids can help and if I respond well to steroids it will be likely I will respond well to IVIG. Im so in and out of my PANDAS symptoms, I can function ok for 5min to 1hr and other days I dont function at all. Im not sure what the best advice is. I suppose making the diagnosis out to be a good thing rather than something scary could help. Me and my mom went out to toys r us this week and bought bubbles marbles and chalk and we had fun playing with those things. Rather than encouraging him to be normal play along with the age of your kid that day. Its the best way to keep them calm and away from raging. I'll probably make a post in the next few days for PANDAS kids to ask questions or make comments about what we're going through, and if they cant type parents can type for them if they have something to say. Thanks for being so nice! PANDASkid PandasKid: You seem to have such a handle on this for being 16. If you don't mind my asking, I'm wondering how all this PANDAS stuff was explained to you? My son (14) is having a hard time grasping it all with all the uncertainty, and I'm pretty sure the more I explain the more scared he gets. Any words of advice for the mom of a teen? Thanks!! So he started the new antibiotic and the steroid around the same time? That's going to make it harder to see what's affecting what. Some have said that there might be an occurrance of worsening before getting better with Mycro P. There was a recent thread about that. Did you read that one or do you need a link? Im positive for Myco P. and when I went on Pred. my symptoms got ten times worse before they went away completely. So things will get better and hopefully the Pred. has longer lasting affects than they did for me. Good Luck and stay positive! It helps! PANDASkid Link to comment Share on other sites More sharing options...
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