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15 year old son with incapacitating PANDAS


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...The reason abx are given for PANDAS is to treat and/or prevent strep infections...

 

 

Hi Peglem, I want to offer that in our daughter's case we are using abx to treat Pandas but the abx is given now as an anti-inflammatory, immune modulating remedy. Period.

 

I believe they found prophylactic abx, which may have been given initially to prevent strep infection), to actually work to eradicate "Pandas" symptoms.

 

We were treated by one of the original Ps researchers (now in private practice) who treated us initially with abx. (AMOX.) She was very clear that the lessening of Pandas symptoms (OCD and tics) was a result of the anti-inflammatory effects of abx.

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Thank you, I stand corrected.

 

...The reason abx are given for PANDAS is to treat and/or prevent strep infections...

 

 

Hi Peglem, I want to offer that in our daughter's case we are using abx to treat Pandas but the abx is given now as an anti-inflammatory, immune modulating remedy. Period.

 

I believe they found prophylactic abx, which may have been given initially to prevent strep infection), to actually work to eradicate "Pandas" symptoms.

 

We were treated by one of the original Ps researchers (now in private practice) who treated us initially with abx. (AMOX.) She was very clear that the lessening of Pandas symptoms (OCD and tics) was a result of the anti-inflammatory effects of abx.

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Hey Peglem, we all stand together--:) I often think that THIS forum has been the best "therapy" and support for me (and free!)-- and from it I glean insights that have been encouraging and remarkable. This "use of abx" thing is something we truly stumbled upon...I mean, who would think an antibiotic would affect OCD and ticcing?...only a Ps parent I guess, thankful it has--

TMom

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He is 6'1" and weighs about 158. He weigh 165 8 weeks ago. He is losing weight with all of this.

 

Thank you DC Mom. Do you know what dose of Zithromax to use? My pedi isn't sure and we do not see a PANDAS specialist until mid January. They are all booked.

 

Joan- You should consider trying zithromax if the augmentin isn't doing it. Lots of parents her have found it to be really effective. I would also try a month long steroid burst, it can be a diagnostic tool, and for some jump start healing.

 

How much does your son weigh? I'm assuming he's pretty big. My 54 pound dd has been on 250mg/daily since June 08. So, I would do at least 500mg/day on your son.

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I am very concerned about how many docs ,neuro's, psychiat, are now saying they are pandas experts. Who is your PANDAS expert?

I am disgusted with the amount of neuro's and hospitals saying they know pandas, and they are just using that diagnosis but still ONLY offerring typical SSRI trmt and clonidine, tenex (Sedatives) for movement disorders. They may give one year of Pen VK at best. I want to post a warning to all parents running to your children's hospital whom say they know PANDAS. If they believe in PANDAS, (the A stands for autoimmune in pandas) then ask if they will treat the autoimmune part??? I understand that they will go conservative at first with PEN VK but ASK ASK if your child gets worse what are the next steps!!!!! Ask what further treatments they offer on relapse. If they don't say steroids, and potential IVIG for very serious cases you are NOT with a pandas expert. Haldrol, clonodine, Prozac are not drugs for autoimmune illness rather tourettes and OCD. Please know whom you are dealing with. I am putting out this notice because docs and peds are taking strep titers, prescribing short term abx and then telling parents it will go away and saying they are PANDAS experts. Of late I am seeing many mothers on this forum whom have been seeing docs whom say they are familiar with PANDAS but yet they have only referred the kids to shrinks. WHY is an autoimmune disease with a psychiatrist?? Ask and insist that you are with an EXPERT. If you need one check the forum list of docs. 7 years ago most docs didn't know the name PANDAS, now all peds have heard of it. And we are making progress, but don't be fooled by the fact that we have a long way to go. I cannot tell all of you how important it is to have a relationship with the right doc from the get go. If, and god forbid, your child relapses then you have someone (doc) by your side that knows what to do. This is not the time to find out your doc doesn't know what to do. ASK THEM, how many have they treated, what is protocol if your child doesn't improve on abx. What immune blood markers should be reviewed. (Not just ASO, like IGG, subclasses, ANA, Components, t cells, Pnemoccocal titers etc...). What studies are they familiar with and what other PANDAS experts do they know and communicate with. How many children have they treated or helped with the autoimmune part? (Not just the psych part). If we all start digging harder and requiring our docs to try harder our grandkids may not need to go through what our children are going through.

 

I comepletely agree!!!

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Hi Joan,

 

My 12 year old daughter (95lbs) was on 1200 mg of augmentin/day for 7 weeks with minimal change in symptoms. We recently switched her to azith 500 mg/day and she seems to be improving now. She also has high titers, although not as high as your son's, and is getting her tonsils out in a few weeks. In our case, the doctor believed there may be some penicillin resistance since she was on prophylactic amox for a year before switching to augmentin.

 

Your son's titers are very high and they do take a long time to come down. I'm hoping the t&a goes smoothly for you and jumpstarts a recovery.

 

Debbie

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Good luck with your daughter's t & A. Please keep me posted. Let's hope the azith works too. We will get there!

 

Hi Joan,

 

My 12 year old daughter (95lbs) was on 1200 mg of augmentin/day for 7 weeks with minimal change in symptoms. We recently switched her to azith 500 mg/day and she seems to be improving now. She also has high titers, although not as high as your son's, and is getting her tonsils out in a few weeks. In our case, the doctor believed there may be some penicillin resistance since she was on prophylactic amox for a year before switching to augmentin.

 

Your son's titers are very high and they do take a long time to come down. I'm hoping the t&a goes smoothly for you and jumpstarts a recovery.

 

Debbie

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I am very concerned about how many docs ,neuro's, psychiat, are now saying they are pandas experts. Who is your PANDAS expert?

I am disgusted with the amount of neuro's and hospitals saying they know pandas, and they are just using that diagnosis but still ONLY offerring typical SSRI trmt and clonidine, tenex (Sedatives) for movement disorders. They may give one year of Pen VK at best. I want to post a warning to all parents running to your children's hospital whom say they know PANDAS. If they believe in PANDAS, (the A stands for autoimmune in pandas) then ask if they will treat the autoimmune part??? I understand that they will go conservative at first with PEN VK but ASK ASK if your child gets worse what are the next steps!!!!! Ask what further treatments they offer on relapse. If they don't say steroids, and potential IVIG for very serious cases you are NOT with a pandas expert. Haldrol, clonodine, Prozac are not drugs for autoimmune illness rather tourettes and OCD. Please know whom you are dealing with. I am putting out this notice because docs and peds are taking strep titers, prescribing short term abx and then telling parents it will go away and saying they are PANDAS experts. Of late I am seeing many mothers on this forum whom have been seeing docs whom say they are familiar with PANDAS but yet they have only referred the kids to shrinks. WHY is an autoimmune disease with a psychiatrist?? Ask and insist that you are with an EXPERT. If you need one check the forum list of docs. 7 years ago most docs didn't know the name PANDAS, now all peds have heard of it. And we are making progress, but don't be fooled by the fact that we have a long way to go. I cannot tell all of you how important it is to have a relationship with the right doc from the get go. If, and god forbid, your child relapses then you have someone (doc) by your side that knows what to do. This is not the time to find out your doc doesn't know what to do. ASK THEM, how many have they treated, what is protocol if your child doesn't improve on abx. What immune blood markers should be reviewed. (Not just ASO, like IGG, subclasses, ANA, Components, t cells, Pnemoccocal titers etc...). What studies are they familiar with and what other PANDAS experts do they know and communicate with. How many children have they treated or helped with the autoimmune part? (Not just the psych part). If we all start digging harder and requiring our docs to try harder our grandkids may not need to go through what our children are going through.

 

I comepletely agree!!!

I am up unable to sleep, second-guessing myself as usual. I run into this post and it gives me great peace of mind that we did the right thing when we switched to Dr. Latimer. That was my big red flag with our previous doc, they kept talking about strep "toxins", never mentioning ANTIBODIES... So thanks Nevergiveup for putting this out.

I am looking into going to see a pediatric immunologist in UVA as well...

 

Isabel

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I absolutely agree! I would recommend that all the new parents ask on this forum for referrals to good local docs. This is the only way I was able to find someone local who would prescribe IVIG and this is how I found a local pediatrician who wants to help kids with PANDAS. Also, you can browse the thread about doctor's who've helped - it's under the "Helpful Threads" topic at the top of the topics list.

 

And I agree, any doc who really knows PANDAS is only going to be talking antibiotics, IVIG, PEX and prednisone. If their first advice is SSRI's, other psych meds, or just CBT therapy, that's a big red flag. Also, because this is an immune disorder, ALL these kids should be getting full immunology work-ups. Many of the kids with PANDAS are found to have immune deficiencies of some sort. This is an extremely important piece of the puzzle.

 

I am very concerned about how many docs ,neuro's, psychiat, are now saying they are pandas experts. Who is your PANDAS expert?

I am disgusted with the amount of neuro's and hospitals saying they know pandas, and they are just using that diagnosis but still ONLY offerring typical SSRI trmt and clonidine, tenex (Sedatives) for movement disorders. They may give one year of Pen VK at best. I want to post a warning to all parents running to your children's hospital whom say they know PANDAS. If they believe in PANDAS, (the A stands for autoimmune in pandas) then ask if they will treat the autoimmune part??? I understand that they will go conservative at first with PEN VK but ASK ASK if your child gets worse what are the next steps!!!!! Ask what further treatments they offer on relapse. If they don't say steroids, and potential IVIG for very serious cases you are NOT with a pandas expert. Haldrol, clonodine, Prozac are not drugs for autoimmune illness rather tourettes and OCD. Please know whom you are dealing with. I am putting out this notice because docs and peds are taking strep titers, prescribing short term abx and then telling parents it will go away and saying they are PANDAS experts. Of late I am seeing many mothers on this forum whom have been seeing docs whom say they are familiar with PANDAS but yet they have only referred the kids to shrinks. WHY is an autoimmune disease with a psychiatrist?? Ask and insist that you are with an EXPERT. If you need one check the forum list of docs. 7 years ago most docs didn't know the name PANDAS, now all peds have heard of it. And we are making progress, but don't be fooled by the fact that we have a long way to go. I cannot tell all of you how important it is to have a relationship with the right doc from the get go. If, and god forbid, your child relapses then you have someone (doc) by your side that knows what to do. This is not the time to find out your doc doesn't know what to do. ASK THEM, how many have they treated, what is protocol if your child doesn't improve on abx. What immune blood markers should be reviewed. (Not just ASO, like IGG, subclasses, ANA, Components, t cells, Pnemoccocal titers etc...). What studies are they familiar with and what other PANDAS experts do they know and communicate with. How many children have they treated or helped with the autoimmune part? (Not just the psych part). If we all start digging harder and requiring our docs to try harder our grandkids may not need to go through what our children are going through.

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