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15 year old son with incapacitating PANDAS


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Hello, My name is Joan and my 15 year old son was diagnosed with OCD and PANDAS in 2005. Our pedi had just recently heard of PANDAS and felt that although Jared wasn't exhibiting any strept sysmtoms he would do a culture and ASO titer. His culture was positive and ASO 471. Over the last 6 years we have had horrible times of waxing and waining. We saw Dr. Geller in 2006. He recommended having his titer checked in times of exacerbation. We did. Once it was 257 and another time 221. I was told the titer wasn't really elevated enough to warrant an antibiotic. We now know this wasn't the case. We had gone to 4 intensive OCD treatments. Twice they worked for about 1 - 2 months then the symptoms were back. In October of this year I saw the symptoms exacerbating. I had to withdraw Jared from School 7 weeks ago because his symptoms were so severe. A friend told me about Beth Maloney on the Today Show. I took Jared in to have his ASO taken. It was 1,014. He has been on Augmenting 2,000 XR for 7 weeks now without any improvement. He is having his tonsills out Tuesday, thinking maybe that his the host for the strept. He also had a concussion about 10 weeks ago in football. We are having a MRI today. Have any of your children had MRI's. Have any of you had any luck with Azithromicin?

Good luck to all of you.

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ASO titers are not a test for PANDAS. Elevated titers indicate there has been a strep infection recently, but you already had a positive culture-so you knew that. Here is a post on ASO titers: http://www.latitudes.org/forums/index.php?showtopic=3756

 

I was told the titer wasn't really elevated enough to warrant an antibiotic.
Antibiotics (abx) do not treat titers- they treat strep. The ASO titer is an antibody to a strepA exotoxin-it rises (sometimes, not always) @ 4-8 weeks after a strep infection, so high ASO does not mean a current infection-but also does not mean that there is no current infection. The reason abx are given for PANDAS is to treat and/or prevent strep infections.

 

We had gone to 4 intensive OCD treatments
What kind of treatment was this?

 

I suggest you read these 2 posts to get more info about what you're dealing with here- PANDAS can get VERY confusing. This can help you get it sorted out.

http://www.latitudes.org/forums/index.php?showtopic=6128

and

http://www.latitudes.org/forums/index.php?showtopic=6142

 

Ouch! A concussion on top of all this? And a tonsillectomy? Sorry you're dealing with so much...keep us posted and hope you find lots of help here!

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Hi Joan,

Sorry you are going through such a bad time of it! My son is 13, dx'd 5 years ago. We started with cefzil years ago and are now back on it (omnicef) for the past two months. This has been hands down far more effective than azith for my son! We even had an exacerbation 6 weeks ago, and he pulled through far better than in past years. Maybe a change in abx would help?

 

PatAnne

 

 

Hello, My name is Joan and my 15 year old son was diagnosed with OCD and PANDAS in 2005. Our pedi had just recently heard of PANDAS and felt that although Jared wasn't exhibiting any strept sysmtoms he would do a culture and ASO titer. His culture was positive and ASO 471. Over the last 6 years we have had horrible times of waxing and waining. We saw Dr. Geller in 2006. He recommended having his titer checked in times of exacerbation. We did. Once it was 257 and another time 221. I was told the titer wasn't really elevated enough to warrant an antibiotic. We now know this wasn't the case. We had gone to 4 intensive OCD treatments. Twice they worked for about 1 - 2 months then the symptoms were back. In October of this year I saw the symptoms exacerbating. I had to withdraw Jared from School 7 weeks ago because his symptoms were so severe. A friend told me about Beth Maloney on the Today Show. I took Jared in to have his ASO taken. It was 1,014. He has been on Augmenting 2,000 XR for 7 weeks now without any improvement. He is having his tonsills out Tuesday, thinking maybe that his the host for the strept. He also had a concussion about 10 weeks ago in football. We are having a MRI today. Have any of your children had MRI's. Have any of you had any luck with Azithromicin?

Good luck to all of you.

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Hi PatAnne,

I have been reading good things about Cefzil and Keflex but my son is possibly allergic. He got a rash about 12 years ago while in Florida on Cefzil so pedi doesn't know for sure if he is allergic. I hope this exacerbation leaves your son quickly.

Thanks,

Joan

 

Hi Joan,

Sorry you are going through such a bad time of it! My son is 13, dx'd 5 years ago. We started with cefzil years ago and are now back on it (omnicef) for the past two months. This has been hands down far more effective than azith for my son! We even had an exacerbation 6 weeks ago, and he pulled through far better than in past years. Maybe a change in abx would help?

 

PatAnne

 

 

Hello, My name is Joan and my 15 year old son was diagnosed with OCD and PANDAS in 2005. Our pedi had just recently heard of PANDAS and felt that although Jared wasn't exhibiting any strept sysmtoms he would do a culture and ASO titer. His culture was positive and ASO 471. Over the last 6 years we have had horrible times of waxing and waining. We saw Dr. Geller in 2006. He recommended having his titer checked in times of exacerbation. We did. Once it was 257 and another time 221. I was told the titer wasn't really elevated enough to warrant an antibiotic. We now know this wasn't the case. We had gone to 4 intensive OCD treatments. Twice they worked for about 1 - 2 months then the symptoms were back. In October of this year I saw the symptoms exacerbating. I had to withdraw Jared from School 7 weeks ago because his symptoms were so severe. A friend told me about Beth Maloney on the Today Show. I took Jared in to have his ASO taken. It was 1,014. He has been on Augmenting 2,000 XR for 7 weeks now without any improvement. He is having his tonsills out Tuesday, thinking maybe that his the host for the strept. He also had a concussion about 10 weeks ago in football. We are having a MRI today. Have any of your children had MRI's. Have any of you had any luck with Azithromicin?

Good luck to all of you.

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Hi,

My son had an Pos. culture in 2005 when first diagnosed. I didn't realize it was PANDAS until this recent exacerbation. PANDAS was brushed off a bit then. Thank you for those articles. I will read them. I noticed quickly Dr. Storch was noted in one. Jared went to Dr. Eda Gorbis in Los Angelas and Dr. Storch at USF. They are both very good. I should have been dealing with PANDAS first though.

 

quote name='peglem' date='Dec 12 2009, 12:57 PM' post='48357']

ASO titers are not a test for PANDAS. Elevated titers indicate there has been a strep infection recently, but you already had a positive culture-so you knew that. Here is a post on ASO titers: http://www.latitudes.org/forums/index.php?showtopic=3756

 

I was told the titer wasn't really elevated enough to warrant an antibiotic.
Antibiotics (abx) do not treat titers- they treat strep. The ASO titer is an antibody to a strepA exotoxin-it rises (sometimes, not always) @ 4-8 weeks after a strep infection, so high ASO does not mean a current infection-but also does not mean that there is no current infection. The reason abx are given for PANDAS is to treat and/or prevent strep infections.

 

We had gone to 4 intensive OCD treatments
What kind of treatment was this?

 

I suggest you read these 2 posts to get more info about what you're dealing with here- PANDAS can get VERY confusing. This can help you get it sorted out.

http://www.latitudes.org/forums/index.php?showtopic=6128

and

http://www.latitudes.org/forums/index.php?showtopic=6142

 

Ouch! A concussion on top of all this? And a tonsillectomy? Sorry you're dealing with so much...keep us posted and hope you find lots of help here!

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HI my son is also 15 hes taking clindimicin hes allergic to penicillin and tried azith a while ago I definitly see improvements so maybe that will help keep us posted

 

melanie

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MRI's could show inflammation in basal ganglia. Also I am sure they are looking for anything that may have happened from the football accident. I am no doctor, but if your son is home from school with debilitating OCD and extremely high strep titers try an intracellular type antibiotic, you may want to see an infectious disease doc. Also I believe Buster (our forums scientist) mentioned a study where the BBB can be breached so antibodies can get into the brain more easily and one of these breaches was head trauma. Therefore this may be why you are seeing such bad symptoms right now and the mri may show inflammation in the basal ganglia. I would get PEX and remove these antibodies ASAP especially if there is a breach in the BBB. Then I would follow up with an immun doc to find out what is not working in his immune system that causes him to overcreate the antibodies and maybe consider IVIG for an immune fix. As much as I agree with abx helping, there is little scientific data supporting that it puts kids in remission fast. It does prevent further attacks though and high dose abx are immune modulating. But it can take years for these titer levels to reduce and if his BBB is hurt from the concussion, you need to remove the antibodies NOW.

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Thank you so much for your response. What is a BBB? I am going to look up intracellular antibiotics after our MRI appt in about 1 hour.

Thanks,

Joan

 

MRI's could show inflammation in basal ganglia. Also I am sure they are looking for anything that may have happened from the football accident. I am no doctor, but if your son is home from school with debilitating OCD and extremely high strep titers try an intracellular type antibiotic, you may want to see an infectious disease doc. Also I believe Buster (our forums scientist) mentioned a study where the BBB can be breached so antibodies can get into the brain more easily and one of these breaches was head trauma. Therefore this may be why you are seeing such bad symptoms right now and the mri may show inflammation in the basal ganglia. I would get PEX and remove these antibodies ASAP especially if there is a breach in the BBB. Then I would follow up with an immun doc to find out what is not working in his immune system that causes him to overcreate the antibodies and maybe consider IVIG for an immune fix. As much as I agree with abx helping, there is little scientific data supporting that it puts kids in remission fast. It does prevent further attacks though and high dose abx are immune modulating. But it can take years for these titer levels to reduce and if his BBB is hurt from the concussion, you need to remove the antibodies NOW.
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Thank you so much for your response. What is a BBB? I am going to look up intracellular antibiotics after our MRI appt in about 1 hour.

Thanks,

Joan

 

MRI's could show inflammation in basal ganglia. Also I am sure they are looking for anything that may have happened from the football accident. I am no doctor, but if your son is home from school with debilitating OCD and extremely high strep titers try an intracellular type antibiotic, you may want to see an infectious disease doc. Also I believe Buster (our forums scientist) mentioned a study where the BBB can be breached so antibodies can get into the brain more easily and one of these breaches was head trauma. Therefore this may be why you are seeing such bad symptoms right now and the mri may show inflammation in the basal ganglia. I would get PEX and remove these antibodies ASAP especially if there is a breach in the BBB. Then I would follow up with an immun doc to find out what is not working in his immune system that causes him to overcreate the antibodies and maybe consider IVIG for an immune fix. As much as I agree with abx helping, there is little scientific data supporting that it puts kids in remission fast. It does prevent further attacks though and high dose abx are immune modulating. But it can take years for these titer levels to reduce and if his BBB is hurt from the concussion, you need to remove the antibodies NOW.

 

danny takes 150 mg 2x per day we are awaiting IV treatments but its just an untill thing but its helping him

 

melanie

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BBB is Blood Brain Barrier...... I concur with everything in prior post. You need to actively pursue IVIG or PEX with follow-up IVIG based on your son's condition and age. Antibiotics will wage half the bottle and his antibodies will need to do the rest which are currently cross-reacting.

 

 

 

 

Thank you so much for your response. What is a BBB? I am going to look up intracellular antibiotics after our MRI appt in about 1 hour.

Thanks,

Joan

 

MRI's could show inflammation in basal ganglia. Also I am sure they are looking for anything that may have happened from the football accident. I am no doctor, but if your son is home from school with debilitating OCD and extremely high strep titers try an intracellular type antibiotic, you may want to see an infectious disease doc. Also I believe Buster (our forums scientist) mentioned a study where the BBB can be breached so antibodies can get into the brain more easily and one of these breaches was head trauma. Therefore this may be why you are seeing such bad symptoms right now and the mri may show inflammation in the basal ganglia. I would get PEX and remove these antibodies ASAP especially if there is a breach in the BBB. Then I would follow up with an immun doc to find out what is not working in his immune system that causes him to overcreate the antibodies and maybe consider IVIG for an immune fix. As much as I agree with abx helping, there is little scientific data supporting that it puts kids in remission fast. It does prevent further attacks though and high dose abx are immune modulating. But it can take years for these titer levels to reduce and if his BBB is hurt from the concussion, you need to remove the antibodies NOW.

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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.
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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.

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