pandaskid

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 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

Meg's Mom, The test my doctor ordered was called: Mycoplasma AB, IgG I also know there is an IgM version of Mycoplasma but I'm not sure how to test for that. I hope this helps. PANDASkid

Thanks, I'll suggest that one to my doctor next week. None have worked so far so I'm hoping she'll be willing to try that one. Thanks again, PANDASkid

Ive been on 4 different types of antibiotics, done a 5 day burst of steroids and a month long course of steroids w/ taper and we are now pursuing an IVIG but are not having much luck. Is there anything that calms your son down?

My family and I are pursuing an IVIG for me but havent had any luck thus far in obtaining one. I was curious however how long it takes to see changes or improvement after the infusion and if you did steroids and antibiotics through IV at the same time? PANDASkid

Within the last month I have notice that my hearing and memory are starting to worsen. I saw a hearing clinic a few months ago and all was normal, but I still find myself watching tv or listening to my mom and not hearing what they are saying. Sometimes I hear nothing and other times I know theyre talking but I cannot retain or comprehend anything that had been said. It is incredibly frustrating. I also am having memory loss, forgetting what I've done, what I've been told to do and even forgetting to tell my doctor that Ive been forgetting things. This too is incredibly frustrating. Also, when reading I am having dyslexia type symptoms, reading a word wrong or not noticing words and this makes reading extremely frustrating too. I was wondering if anyone else has these issues and if so what have you done to fix or cope with the issue? All I am able to do these days is watch tv and read and I would really like to be able to find enjoyment out of these things since everything else I do makes me sicker and now these issues are making me feel incredibly frustrated and ramping my OCD even higher. Thanks and let me know if you have any advice or experience with these symptoms. PANDASkid

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

Thanks everyone for the support. I managed to take one epsom salt bath. I'll run the probiotics at 4am by my mom but the only issue is that I typically dont fall asleep till past 6:30 in the morning.

I did a 5 day burst of steroids in December and had a fever those five days and then about a week after I started to feel completely normal again which lasted for about six days. Then in January we decided to do another 5 day burst and decided to switch it to a month of steroids; 15 days 60mg twice daily and 15 day tapering. So far no antibiotics have worked for me and we are pursuing IVIG. I also have Mycoplasma Pneum. and and IgG 1 subclass deficiency.

thank you for posting were you on a high enough dose for your weight? i believe aug wouldn't help at all...zith might, but i not sure if you were on biaxin long enough,depending on how long you had this and your current age.. from what i understand looking at the one study...they did 2 months of abx...and some say 6 months or longer and you may want to rotate other abxs i also understand you may now have some other underlying issues... keep in touch And add LOTS of high test probiotics far away from antibiotic dosing. Have you tried epsom salt baths for pain and anxiety? Sounds benign but they really can help. Gatsmom, Thanks for the advise! I've been drinking lots of milk and have alot of yogurt. I was on probiotic supplements too but have stopped taking all my supplements cause they hurt my stomache. My mom loves the herbal and natural approaches and also encourages me to take epsom salt baths but I have extreme difficulty with things like showers and baths as well as brushing my teeth. Normally I am very clean and like to look nice but I cant keep that up when Im sick. Any advice on that front? Thanks, PANDASkid

Colleen I am 16 years old, turning 17 on the 24th and before the steroids weighed around 135lbs. and now I weigh 184lbs. My mom threw away all my older perscription bottles because she hates looking at them but I found my most recent ones and they are: amox/clv 875mg x2 daily for 1 month; Biaxin 500mg x1 daily for 14 days; Zithromax 250mg x2 twice weekly longterm. Hope this helps. I also had walking pneumonia a couple weeks ago so I did a much stronger course antibiotics during that but I dont remember how much or for how long or what type. PANDASkid

wornoutmom, I was on Biaxin for ten days with no results. I have also been on zithromax for 3 months with no results and augmentin for 1 month also with no result. I got my blood tests back yesterday. I had "highly significant" levels of mycoplasma pneumoniae as well as an IgG 1 subclass deficiency. I also recieved my CamKinase II results back in November at the level of 200. The only relief I have had from my symptoms was from a 5 day burst of steroids and a month long course of steroids. I gained about 4 weeks of my life back but they wore off about 1 month ago and my life has gone down the toilet again. I dont want to go back on the steroids because the side affects are so awful. My stomache is now in a wreck from all the pills I've taken. I am now on tylenol-codine for my physical pain as well as advil. We're going for an IVIG but insurance has denied it, but hopefully since we found this subclass deficiency I can finally get it. Hope this helps. PANDASkid.