PANDASmcnuggetsw/fry/coke

Hi friends, Like you probably, I am staying up all night trying to learn as much as I can about PANDAS since this train hit our family this past May. I am trying to read and understand all the science. But I don't get the recovery part. If the abx kill or mostly kill an underlying infection, which has to do with the autoimmune response and possible swelling of the basal ganglia, then why don't symptoms completely go away when the infection is cleared? Also, are there some success stories that some of you can share and when during the illness they occurred and the age of your children? I'm scouring this site for these. Are there any studies that followed the children who were subject of the studies when the disease was first being "discovered" in 1998? How are these young people doing now? Is this disease truly pediatric or does it continue to adulthood? I believe Dr. k stated on the phone a week ago that there may be an adult version? Thank you for bearing with me. :-) PANDAS McNuggetsw/fry/coke

Thanks to you all again so much for giving me more things to consider. So true... if there WAS a quick fix, everybody would be doing that! But it IS comforting to know that there may be other options to consider and possibly try. On the ibprofen, is there a fixed period of when it is too much? I thought Dr k said not do it, but I don't have those notes in front of me. Do you give it every day for a set length of time or "as needed?" What scares me the most is I don't know WHERE we are in the course of this disease. Dr k says it was probably dormant since she was very young and with the Hepatitus A vaccine, (due to our adoption of twins from Ethiopia) it just triggered it all. May was a nightmare. June was a little better. Now she is up and down with big seperation issues with me and obvious memory and concentration problems, intense worry and guilt. She does not want to go anywhere. I guess my rambling is I'm asking is this going to get a whole lot worse before it gets better? Or are things going to gradually improve with the ABX she is on and possible future IVIG. Million dollar question maybe. But tis wax and wane thing, I don't get it. It's like PANDAS showed up one day and said I'm here to stay. No more normalcy. Where is the wane part? ps Vickie, she has been doing Omega 3s for quite some time, but she is growing so fast, maybe she needs more. Also read somewhere that symptoms may diminish when a girl get her period for the first time. Anyone blessed to report that? Thanks for listening! PANDAS McNugettsw/fry/coke

Thank you all for your input! I "think" the anxiety is from all the worry and guilt she feels. So if I am understanding her correctly, the Obssesion is with all of these thoughts that "need to be confessed." The only Compulsion I see in any of this is the compuslion to tell me them. But even that does not bring relief as more thoughts pop up, so often she tries to avoid the compulsion of telling me in the hopes that the current ones fade away. Other than that, I see no ritualistic type of repetitve behavior that looks like Compulsions. So I'm wondering if maybe these ant-anxiety meds you all mention may be worth a try. First will try valerian root and go from there. Does her brand of OCD sound familiar to any of you? Thank you again, PANDASMcNuggets w/fry/coke

Hi everybody, We are newbies here and my daughter is finishing a steriod burst per Dr. K. We have seen some ups and downs on it so far. She keeps asking me if there is something she can take to make this all go away NOW. I know she is suffering with this worry and guilt/OCD thing and I have read on here how if she has PANDAS (Dr K says yes) SSRIs can make things worse. She needs some light at the end of the tunnel and I don't know if there are any safe meds that would help with the burden she is carrying. I know we will not try anything until this burst observation period is over, but after that...is there anything that can help with the mental anguish? Thank you to all who have been so helpful here. Thank you so much, PANDASmcnuggets w/fry/coke

KIMBALLOT and everybody... Thank you for your quick, kind and thoughtful replies! To clarify, Dr K didn't say don't put her on abx during the burst observation period, he just was saying he generally did not believe ABX was effective treatment in the long run. This came up when we said...well how about abx intead of jumping to ivig after we are done with this burst? I had scanned some posts and THOUGHT I saw that parents did the abx right after the burst with great results and that is why I wanted to go that route asap. Then I started second guessing everything..... btw does the "burst" term include the roughly 2 week observation period following the steroid aministration? Or does it just mean WHEN you are taking them? Thank you friends! PANDASmcnuggets w/fry/coke KIMBALLOT said.... [color="#FF0000"]I think I am reading that you were not comfortable with Dr. Ks recommendation to refrain from ABX for the time being and you asked your pediatrician for an ABX script - and started augmentin tonight. [/color]

I just posted our intro earlier today and then in searching the forums realized I may in trying to be aggressive in treatment made a collossal mistake. We just finished the 5 day steriod burst yesterday per Dr ks instructions and I wanted to try the ABX before going straight to IVIG after the day 6-21 observation period. So....I got our local pediatrician to give us the high dose Augmentin. She started TONIGHT, day 6, during the observation period after taking the 5 day burst which ended yesterday. The pediatrician, knowing I was not exactly following Dr. k, said how will you tell what made her better the steriod or the ABX? And I said, does it matter? I just want my daughter better. Well now I am thinking that IF things get better, then worse again after the 5 day burst plus immediate abx, how will Dr k know if she is a candidate for ivig anymore? If it was the abx that made her better temporarily then he can't conclude it was the steriod. DID I JUST ROYALLY BLOW IT? I have only given her one bedtime dose of 2,000 mg augmentim before bed tonight. (she was prescribed 4000 mg per day)Should I stop this and wait out the observation period of day 7-21 now and document her mostly on the post steriod burst? OR Should I go for broke and see if this can lead to total recovery? She is 12 years old and was diagnosed by Dr k w/ PANDAS last week. Her ASO and ANti DNAse-B were normal. I'll repost my intro from earlier today as I totally forgot to mention that this sudden and extreme onset of syptoms was 4 days after she had a Hepatiitus A vaccine, in anticipation of our new twin sons coming home from Ethiopia. Dr K thinks this was a catlyst for the PANDAS that was lying dormant for years!!!! Thanks for your patience and your help! Intro post below.... PANDASmcnuggets w/fry/coke Newbie Group: Members Posts: 2 Joined: 10-July 10 Member No.: 5404 Hi everybody, Thank you for all the wisdom I've been able to glean here as soon as we discoverred this world of PANDAS this May. Last week we received a diagnosis of PANDAS via phone from Dr. K for our 12 yo dd. He is reccomending the ivig and not the abx. We did not have any positve strep test or blood results at the time of diagnosis. The onset was sudden and extreme in the form of OCD and the classic stuff on Dr. K's site (the frequent urination, terror look etc). Motor tics mostly were limited to gagging on water when she tried to drink. There was an episode 3 years ago, but it was much milder. Today, we just got the blood results and they seem low...<20 ASO and < 70 Anti DNase B. What does this mean, if anything? We do not know when a strep exposure may have occured. Maybe in early childhood? And at the beginning of May, she became very sick with tons of phlegm for days. (She still has some) She had a sore throat then, but we did not test for strep then b/c the WHOLE family was sick, with everything from throwing up to hives, coughs and sore throats~~ and there are 9 of us, with two twin toddlers joining our family at that same time from Ethiopia. (so it was a little busy) :-) Anyway, we just finished the last day of the 5 day steriod burst. She had some very low points during the burst and her face was grey every day. Dr K say day 6-21 are the days to monitor...... Today, I convinced a local pediatrician to give us high dose abx, b/c we want to try this before going the ivig route. I asked for Zith but he did not feel comfortable with that, but he gave her augmentin XR at 4,000 mg a day! She is 115 pounds and 5'5', so I guess this is the adult dose. I wanted long term, b/c she has had the short term, low dosage stuff already with this (amox, zith and augmentim) and that still hasn't knocked this 2 1/2 month phlegm situation out. He gave us 2 weeks only and then we are to check back with him. I'd say he is a PANDAS skeptic, but was at least willing to listen. Ok here are my qs: have any of you gone straight from the prednisone burst to abx and how did that work out for your child? Is Ivig thought to be a cure or just temporary relief? I asked Dr. K about this underlying infection she still seems to have..over two months of plegm and he said this could be an allegergic response TO the PANDAS, the immuneological war going on in her body. She could essentially have this phlegm as long as she has PANDAS. Does that make sense to anyone? He did not feel that even though we are a family of 9 and are home alot because we home educate, to clear the other family members of being silent strep carriers. Your thoughts? Also the pediatrician is checking for lyme, mycoplasma and thyroid which is fine, but wants to do a CAT scan for sinusitus. Is that CAT scan a little over the top? How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-) How does Dr. K handle clients "going rogue" and getting their abx elsewhere and then coming back to him? Thank you for bearing with this newbie. This has practically consumed our every waking thought since it began again 2 months ago. Best to you and your children, PANDASmcnuggets w/fry/coke

I'm sorry for not being more clear. What I mean is LOTS of productive green mucous from her nose and throat. Not an anacroynm for anything else. Just phlegm. In the beginning of May, she had so much she could repeatedly fill a towel with it. (Sorry, I know it's gross;-( ) Now it is more manageable, but STILL there after two and 1/2 months. Thanks!

Hi everybody, Thank you for all the wisdom I've been able to glean here as soon as we discoverred this world of PANDAS this May. Last week we received a diagnosis of PANDAS via phone from Dr. K for our 12 yo dd. He is reccomending the ivig and not the abx. We did not have any positve strep test or blood results at the time of diagnosis. The onset was sudden and extreme in the form of OCD and the classic stuff on Dr. K's site (the frequent urination, terror look etc). Motor tics mostly were limited to gagging on water when she tried to drink. There was an episode 3 years ago, but it was much milder. Today, we just got the blood results and they seem low...<20 ASO and < 70 Anti DNase B. What does this mean, if anything? We do not know when a strep exposure may have occured. Maybe in early childhood? And at the beginning of May, she became very sick with tons of phlegm for days. (She still has some) She had a sore throat then, but we did not test for strep then b/c the WHOLE family was sick, with everything from throwing up to hives, coughs and sore throats~~ and there are 9 of us, with two twin toddlers joining our family at that same time from Ethiopia. (so it was a little busy) :-) Anyway, we just finished the last day of the 5 day steriod burst. She had some very low points during the burst and her face was grey every day. Dr K say day 6-21 are the days to monitor...... Today, I convinced a local pediatrician to give us high dose abx, b/c we want to try this before going the ivig route. I asked for Zith but he did not feel comfortable with that, but he gave her augmentin XR at 4,000 mg a day! She is 115 pounds and 5'5', so I guess this is the adult dose. I wanted long term, b/c she has had the short term, low dosage stuff already with this (amox, zith and augmentim) and that still hasn't knocked this 2 1/2 month phlegm situation out. He gave us 2 weeks only and then we are to check back with him. I'd say he is a PANDAS skeptic, but was at least willing to listen. Ok here are my qs: have any of you gone straight from the prednisone burst to abx and how did that work out for your child? Is Ivig thought to be a cure or just temporary relief? I asked Dr. K about this underlying infection she still seems to have..over two months of plegm and he said this could be an allegergic response TO the PANDAS, the immuneological war going on in her body. She could essentially have this phlegm as long as she has PANDAS. Does that make sense to anyone? He did not feel that even though we are a family of 9 and are home alot because we home educate, to clear the other family members of being silent strep carriers. Your thoughts? Also the pediatrician is checking for lyme, mycoplasma and thyroid which is fine, but wants to do a CAT scan for sinusitus. Is that CAT scan a little over the top? How long does it take your child to improve on abx if they are going to? I know each case is different and your actual mileage may vary. :-) How does Dr. K handle clients "going rogue" and getting their abx elsewhere and then coming back to him? Thank you for bearing with this newbie. This has practically consumed our every waking thought since it began again 2 months ago. Best to you and your children, PANDASmcnuggets w/fry/coke