Saying Yeah! PANDAS OCD. Help!

[michele]

Wow that is exactly what the DAN Dr. Demio said. Andrew has an excess of dopamine in the brain from the strep antibody attack! He said it makes them act like they are in a drunken state. Could you please explain what he said about overuse of antibiotics for precaution with PANDAS. He said the best use for protection against the attack is the use of antibiotics? What does he say to do? Take prophylaxis antibiotics daily or not? What do you do once there is detection? Give the antibiotic for a few weeks? Then wait for the next strep infection? Thank you for the information. It is good to get the different perspectives.

Michele

omniseph worked for him for his sinus infections 2 yrs back . We have never used for PANDAS. I have used zithromax for PANDAS and it has seemed to help. I had appoitment with a USC doc today who had done some research on PANDAS told Pen V and amox are best suited for strep infection as they wipe it out more quickly then others . But it depends on doctor to doctor and person to person what is best suited. And he also was not in favour of overuse of antibiotic for precaution. Best is one has to agressive against step and early detection and antibiotic are the key. So that body does't go in over drive to fight against strep. these antibodies attack some protein cells in basal ganglia which cause the release of excess Dopamine and it distrups the functioning of brain just like traffic jam resulting in confusion which is cause of tics /ocd in PANDAS kids.

[Dedee]

I'm not sure who asked me the question about why we havent used Augmentin on my son since he had tonsils out. The answer is that he has not had any strept episodes since that time. He has only had one occurance of neuropsychiatric symptoms that I felt warrented treatment and that was after an exposure to strept (even though he did not actually get strept). Since he is on low dose maintenance amoxicillin, and I had some samples of Omnicef at home, I just gave him a round of the Omnicef then restarted the amoxicillin and that seemed to clear things up. We haven't had any big problems since. This is really a day by day illness and we just keep our fingers crossed and pray for the best.

 

Dedee

[kkver]

michele

prophylaxis antibiotics according to this doc will take away effectiveness of antibiotics when you need so does't recommend that. Best way is to keep the PANDAS away is and get strep tested with a slight chance of sore throat and treat it if +ve.

I give zithromax for 10 days after it is dectected then let the body heal it self. and try to increase the body immunity against any other attack with vegitables and vitamins.

[michele]

The problem with that theory for kids who have repeat severe PANDAS episodes is they have the symptoms all the time even when they are on prophylaxis antibiotics like pen vk. That means their brain is constantly being attacked by the good guys because they think the cells are strep. They still even get the episodes from exposures to strep and illness but the symptoms become much more dramatic overnight. It is at that time that they have to use the stronger antibiotics like Augmentin and zithromax or omniseph. I believe it is the severe PANDAS cases that don't even respond to the stronger antibiotics. That is when they need IVIG or pulse corticosteroid treatments. At first we only got the symptoms occasionaly when he was sick and they were very spaced out. Now they have become almost back to back with very little time that we don't have symptoms. Maybe it is too late for us because we have done the daily antibiotics and now we are trapped. Like you said the antibiotics have lost their effectiveness. As Deedee said it is day to day battle. Today I called and got another three week dose of omniseph because we are back in a flair up mod since the weekend. Also what if you can't get Dr's to give zithromax? If everyone agrees it works the best for strep and PANDAS why can't the research prove this? How do you get your Dr's to prescribe it?

I have heard of a different Dr. who helped a young girl who was suffering from PANDAS and arthritis from strep named DR. Onel. She is now in Chicage. Does anyone know of her?

Ronna, I had never heard of kids having trouble with probiotics. What kind of trouble do they cause for your child?

Michele

michele

prophylaxis antibiotics according to this doc will take away effectiveness of antibiotics when you need so does't recommend that. Best way is to keep the PANDAS away is and get strep tested with a slight chance of sore throat and treat it if +ve.

I give zithromax for 10 days after it is dectected then let the body heal it self. and try to increase the body immunity against any other attack with vegitables and vitamins.

[kkver]

The problem with that theory for kids who have repeat severe PANDAS episodes is they have the symptoms all the time even when they are on prophylaxis antibiotics like pen vk. That means their brain is constantly being attacked by the good guys because they think the cells are strep. They still even get the episodes from exposures to strep and illness but the symptoms become much more dramatic overnight. It is at that time that they have to use the stronger antibiotics like Augmentin and zithromax or omniseph. I believe it is the severe PANDAS cases that don't even respond to the stronger antibiotics. That is when they need IVIG or pulse corticosteroid treatments. At first we only got the symptoms occasionaly when he was sick and they were very spaced out. Now they have become almost back to back with very little time that we don't have symptoms. Maybe it is too late for us because we have done the daily antibiotics and now we are trapped. Like you said the antibiotics have lost their effectiveness. As Deedee said it is day to day battle. Today I called and got another three week dose of omniseph because we are back in a flair up mod since the weekend. Also what if you can't get Dr's to give zithromax? If everyone agrees it works the best for strep and PANDAS why can't the research prove this? How do you get your Dr's to prescribe it?

I have heard of a different Dr. who helped a young girl who was suffering from PANDAS and arthritis from strep named DR. Onel. She is now in Chicage. Does anyone know of her?

Ronna, I had never heard of kids having trouble with probiotics. What kind of trouble do they cause for your child?

Michele

michele

prophylaxis antibiotics according to this doc will take away effectiveness of antibiotics when you need so does't recommend that. Best way is to keep the PANDAS away is and get strep tested with a slight chance of sore throat and treat it if +ve.

I give zithromax for 10 days after it is dectected then let the body heal it self. and try to increase the body immunity against any other attack with vegitables and vitamins.

 

Exactly this is what he meant by daily use of antibiotics. May be now you will have to break this cycle of body getting use to of antibiotics and let it come down to normal. Problem is you will have to witness the tics for some time that way if infection is not there sooner or later antibody count will start to come down. that way you are giving chance to body to go back to normal drive and during that period try to improve his immunity with natural resources like fruits and vegitables and multivitamins. And may be after 15-25 days later bring in antibiotic for 7 to 10 day course and stop. This is my thinking only and it is totaly up to you what you decide what is best for your kid.

About zithromax in 1st episode i was able to get from my regular doc as he gave it for 1st 5 days then 20 days later he had sinus infection in the middle of very bad tics he gave 5 more days of it but when we took that tics vanish along with sinus so he gave it for 5 more days after 10 days of course tics were very mild and then they went away . After that during summer i visited my home country and brought in some zithromax to keep handy and purchased rapid strep test kit here for early detection.

[michele]

I understand what you are saying. And to think I was so excited when I convinced the immunologist to put us on prophylaxis antibiotics. Well I may have to wait until Xmas break to try to wean off the daily antibiotics. I can't stand to send him to school with the kind of behaviors I think will develop. If he has epsiodes while on the antibiotic meds I can only imagine how off the wall he may be without them. Do you think someone here could write a book or manual on this PANDAS Syndrome? I know we have some nurses. How often would you say your child is on the zithromax in a six month period? I can't believe you can just buy any meds in your country without a prescription? Someone near me was recently arrested in a nice home for selling steroids. I can just see it now "parent of PANDAS child being busted for buying azith meds." I mean desperate measures right? I know I sure feel desperate most of the time for answers. Thanks for your input.

Michele

The problem with that theory for kids who have repeat severe PANDAS episodes is they have the symptoms all the time even when they are on prophylaxis antibiotics like pen vk. That means their brain is constantly being attacked by the good guys because they think the cells are strep. They still even get the episodes from exposures to strep and illness but the symptoms become much more dramatic overnight. It is at that time that they have to use the stronger antibiotics like Augmentin and zithromax or omniseph. I believe it is the severe PANDAS cases that don't even respond to the stronger antibiotics. That is when they need IVIG or pulse corticosteroid treatments. At first we only got the symptoms occasionaly when he was sick and they were very spaced out. Now they have become almost back to back with very little time that we don't have symptoms. Maybe it is too late for us because we have done the daily antibiotics and now we are trapped. Like you said the antibiotics have lost their effectiveness. As Deedee said it is day to day battle. Today I called and got another three week dose of omniseph because we are back in a flair up mod since the weekend. Also what if you can't get Dr's to give zithromax? If everyone agrees it works the best for strep and PANDAS why can't the research prove this? How do you get your Dr's to prescribe it?

I have heard of a different Dr. who helped a young girl who was suffering from PANDAS and arthritis from strep named DR. Onel. She is now in Chicage. Does anyone know of her?

Ronna, I had never heard of kids having trouble with probiotics. What kind of trouble do they cause for your child?

Michele

michele

prophylaxis antibiotics according to this doc will take away effectiveness of antibiotics when you need so does't recommend that. Best way is to keep the PANDAS away is and get strep tested with a slight chance of sore throat and treat it if +ve.

I give zithromax for 10 days after it is dectected then let the body heal it self. and try to increase the body immunity against any other attack with vegitables and vitamins.

 

Exactly this is what he meant by daily use of antibiotics. May be now you will have to break this cycle of body getting use to of antibiotics and let it come down to normal. Problem is you will have to witness the tics for some time that way if infection is not there sooner or later antibody count will start to come down. that way you are giving chance to body to go back to normal drive and during that period try to improve his immunity with natural resources like fruits and vegitables and multivitamins. And may be after 15-25 days later bring in antibiotic for 7 to 10 day course and stop. This is my thinking only and it is totaly up to you what you decide what is best for your kid.

About zithromax in 1st episode i was able to get from my regular doc as he gave it for 1st 5 days then 20 days later he had sinus infection in the middle of very bad tics he gave 5 more days of it but when we took that tics vanish along with sinus so he gave it for 5 more days after 10 days of course tics were very mild and then they went away . After that during summer i visited my home country and brought in some zithromax to keep handy and purchased rapid strep test kit here for early detection.

[Dedee]

I would like to add my opinion on the theory that antibiotics cause the antibody titers to stay high therefore the neuropsychiatric symptoms to remain evident. My son has had PANDAS for seven years. He has only been on antibiotics for one year. I can promise you that his neuropsychiatric symptoms during the years previous to his antibiotic use were extremely unstable and unpredictable. There was always an association to his strept infections but in addition we would also see flare ups that we could not relate to any specific incidence. There was absolutely nothing we could do to stabilize his moods, his insecurities, his fears or his difficulities in school.

 

About 18 months ago when he developed tics after a series of strept infections we had his tonsils removed and finally got a visit from Dr. Murphy. We have followed only her advice in regards to his treatment for PANDAS realizing that she is the expert on this illness. She did recommend the low dose daily antibiotic treatment for our situation. This has been the only thing that has stabilized our childs tics and his entire life in general. His moods are entirely different. He has been a straight A student all year and a total joy. We still have a few minor tics and issues but we are dealing with it as it comes and with the methods that she gave us. I try not to confuse myself with other outside influence, if I believe this is the right thing for my child. Each child is different and each situation is different. However, when I think of how he was prior to antibiotics and after, there is no doubt that the antibiotics have not caused a build up of antibodies of any kind to worsen any illness. In PANDAS patients, antibodies will often stay elevated for long periods of time regardless of antibiotic therapy.

 

I know that in our desperation as parents to help our children we will often search for answers and be willing to try many things in hopes that it will ease their suffering. I just hope that that we remember that all treatments take time to work and flare ups are an inevitable part of this illness. It is JMHO that switching from one treatment protocol to another to quickly, before really giving it time to work, could cause more harm than good.

 

I do not mean to stir contraversy. I am only speaking in generalities about things that have been swirling in my mind lately in hopes that it may be of help to someone. Everyone here is so nice and helpful and I hope that we can all get the comfort we are searching for to help our children. This is what is truly important. Thank you all so much for your support during this journey.

 

Dedee

[kkver]

Michele

As Dedee said each child is different and parent has to look for what is best suited for there kid. Antibiotic theory is still up for debate as some doctors will go for it and some not. And as a parent i too don't want to use too much antibiotic. Yes my place you can buy meds from the shop but in 5 day supply only i brought this with prescription cause we went in for a viral infection and he tested his strep and results were due in 1 day from lab as they don't have rapid test so he told me to buy just in case it was +ve . It tuned out to negative and i never used it but gave me idea to keep it in case of emergency.

[Ronnas]

Well I guess it has been a long time since I posted about our experience with probiotics. I have to be very careful which ones I give him. The only reason I have ever been able to come up with is that some probiotics have a streptococcus strain. It is a natural part of the gut I think and is a different strain from the strep that causes strep throat etc and I have been told that it "shouldn't" cause a problem but for us my son just seems to be sensitive to probiotics (with the wrong kind he has mild PANDAS symptoms), anyways, we really try to encourage him to eat yogurt etc and things are good so I am not rocking the boat right now and other than a multi vitamin he is doing well.

 

I am not sure who posted about giving antibiotics as needed with exposure to strep and a positive culture. We went this route for a few years (he's been on azithr. for almost 2 years now)...anyways, in my son's case the azithr. prophylactically has been so much better. He is so stable, minimal waxing and waning, and no strep in 2 years. With each "pandas" episode the symptoms just seemed to get worse and worse and it took longer for the symptoms to subside. We have had none of this with azithro.

 

Ronna

[bmom]

Ronna,

I was just curious if your son had his tonsils out and if yes, what was the result of this- positive or negative?

[michele]

Did you have to go through trying the other antibiotics before they gave you the azith? How did you convince them it was better then the other prophylaxis antibiotics? Thanks for the info on the probiotics. I never knew this before.

Michele

Well I guess it has been a long time since I posted about our experience with probiotics. I have to be very careful which ones I give him. The only reason I have ever been able to come up with is that some probiotics have a streptococcus strain. It is a natural part of the gut I think and is a different strain from the strep that causes strep throat etc and I have been told that it "shouldn't" cause a problem but for us my son just seems to be sensitive to probiotics (with the wrong kind he has mild PANDAS symptoms), anyways, we really try to encourage him to eat yogurt etc and things are good so I am not rocking the boat right now and other than a multi vitamin he is doing well.

 

I am not sure who posted about giving antibiotics as needed with exposure to strep and a positive culture. We went this route for a few years (he's been on azithr. for almost 2 years now)...anyways, in my son's case the azithr. prophylactically has been so much better. He is so stable, minimal waxing and waning, and no strep in 2 years. With each "pandas" episode the symptoms just seemed to get worse and worse and it took longer for the symptoms to subside. We have had none of this with azithro.

 

Ronna

[Guest]

mkindo,

 

I did this same thing for quite a while too, but instead of saying yeah it was saying okay. My younger sister was the only one that had to repeat it. At first we'd go back in fourth with okay-okay okay-okay until it sounded just right for me for what seemed like forever. I'd repeat it everytime we talked which was constantly because I'm a huge talker around people I know well. Eventually, my sister was able to say okay the way I needed it to sound so we didn't go back and fourth so much. We were also able to say okay just by moving our lips so that I could hide it from my dad and anybody else that was around. It drove us both nuts, but my sister was very good at dealing with it. For me chocolate was a large contributor to having to repeat okay until it sounded just like. My sister would always say that I shouldn't have eaten that chocolate because once I did we were constantly going back and fourth again with okay-okay.... Anyways, I just wanted to let you know that I've been through this one in the past. It only happens occasionally now. For me I was able to hide it pretty well so that my sister, myself, and the people that I told were the only ones that knew that I did this.

 

I hope that repeating yeah goes away for your daughter soon.

 

Carolyn

[Chemar]

hiya Ronna always so good to see you

 

we have always used natural yoghurt and kefir and not supplemental probiotics and my son seemed to do fine with them

 

since the crohn's reared its head tho, he even stays away from them as they seem to trigger an autoimmune flare. as there is growing evidence that Crohn's is likely triggered by a bacterial infection, possibly myco strain,

it wouldnt surprise me if the same can happen when PANDAS kids are exposed to strep related bacteria in a probiotic

 

thankfully my son doesnt have to take any antibiotics. What a fine line we have to walk with their sensitive immune systems huh

[Dedee]

Yes, this is true of probiotics. I have not personally given my son any that had the strep strain in it because it seemed to be something that I would naturally want to steer clear of. So when ever I looked for a brand to buy I always made sure this was not a part of the ingredients. Just as with anything else with these children we have to be so careful of all the "hidden ingredients" that most people don't think twice about. Thanks for bringing that up.

 

Dedee

[kkver]

I was gonna post my experience with probiotics. What Ronnas been telling might be true in some cases i have a feeling my son too tics more with probiotics supplements . I have stopped those since earlier this week and i can see the improvements. Now i am sticking with oragnic horizon yougart with active cultues. Wil update this thread after some days.