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Terribly frustrated, angry & hopeless


Addi
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Hi everyone,

 

I'm new to this board...I've been reading your threads for a couple weeks & joined today.

 

We live an hour North of Pittsburgh. My son Michael just turned 9. He is Dx'd as Aspergers, but 2 years ago was also Dx'd with PANDAS by our regular Ped & a neuro developmental ped in Pittsburgh, Dr. Faber, of the Children's Institute.

 

Michael is always going to be an Aspie. This is who he is & I don't think he needs fixing.

 

But the kid has been fighting GAS for over 2 years now & I dont know what to do anymore.

 

He has had many MANY positive throat cultures, treated with Antibiotics, coupled with or followed by absolutely HORRIBLE & scary periods of behavior which impair his ability to function. He has missed betwen 25-40 days of school each year. He had tonscills & adnoids removed in January 2009 followed by a couple months of absolute honeymoon behavior - stable & sweet & even.

 

In June it started again...but this time negative throat cultures & positive ASO screen & DNASE B antibody titer of 960 +.

 

The 1st 3 weeks of school have been a nightmare. He is agitated, aggressive, violent, hyper, rocking & bouncing & hitting himself in the head, staring into space, emotional, tearful and irrational. He is just a CRAZY person right now.

 

Today I took him to the Cleveland Clinic. Ped. neuro listens intently, says he clearly has PANDAS, he's clearly impaired & suffering; go to lunch I'm gonna consult with my colleagues & try to get him admitted so we can get him in to see a ped. neuropsych & run tests. Saying it can all be done faster as an inpatient.

 

I am elated!!! Someone gets it. Someone is going to do SOMETHING.

 

I return from lunch, am handed some literature & told that by definition, PANDAS is only a Dx for kids with OCD. Without the OCD component he does not have PANDAS & therefore, his strep & behavior issues are NOT RELATED.

 

Ummmmmm..... ok so you're telling me that bc he doesnt have more obsessive & compulsive tendencies (he has some) there couldnt possibly be a strep-neuropsych connetion???? This antibody titer in the thousands has no impact on the kid's brain??

 

She offered me Risperdone and/or Clonadine and sent us on our way.

 

Does anyone have any input at all? I cried all day long. He cannot live this way, I know there is something amiss, here.

 

ETA: she also said that prophylaxis abx & IVIG are not indicated...an MRI is not indicated...just psych meds :wacko:

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Hi Addi-

 

Glad you found us-sorry you needed to find us!! I can only imagine how incredibly frustrating that doctor's appt must have been! I'm assuming you probably met with a young doc who gave you the dx of Pandas. He/she then went and consulted with some older doc who told him there was no such thing. Am I close???

 

I can't speak personnally regarding the psych meds because we were fortunate enough to not have traveled down that road. I have read from others that they can actually make the Pandas symptoms worse but you will need to have that confirmed by someone who has that experience.

 

My dd7 has never presented with typical OCD or tic tendencies. She has had severe separation anxiety and raging as her main symptoms. Our Rheumy also tried to tell us that because she didn't have more OCD tendancies that Pandas was not likely. My response--BS!!!!

 

I believe every child is different. Maybe this is because they are at different stages of the disease. Maybe it has more to do with inheritated traits. Who knows and frankly it doesn't matter.

 

We saw a signaficant improvement in my dd while on abx-she was probably 80% back to her old self. We went ahead and had IVIG done and have seen even greater improvements since then.

 

Many of us have requested to have additional blood work done to test our child's immune system function. Many of our children have failed various parts of this blood work which would indicate that they have underlying immune issues which may or may not have contributed to the Pandas.

 

Hopefully, someone from your area is already here and can point you in the direction of a doctor who can help you. I believe Peglem's daughter has had many dx's through the years-maybe she can give you some great advice.

 

Don't give up hope!

 

Sam

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Addi,

 

I'm sorry to hear that your son is so sick, but I'm glad you found this forum. There are a lot of great parents here who are eager to help.

 

It sounds like you need to find a different doctor, or set of doctors. Go to the top of the PANDAS page here and click on "Helpful Threads for PANDAS" then scroll down to post #6, "Doctors we have seen who have helped with PANDAS." This is a good place to start. Also, I'm sure others here who live closer to you (we're in CA) can recommend doctors. The two I've heard the most about (all good!) are Dr. Latimer and Dr. Kovacevic.

 

Another good resource is pandasnetwork.org. You can send them an email and someone will respond to help you. This is how I started out.

 

When this started up again in June, what did his doctors prescribe? What antibiotics and how much?

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Hi everyone,

 

I'm new to this board...I've been reading your threads for a couple weeks & joined today.

 

We live an hour North of Pittsburgh. My son Michael just turned 9. He is Dx'd as Aspergers, but 2 years ago was also Dx'd with PANDAS by our regular Ped & a neuro developmental ped in Pittsburgh, Dr. Faber, of the Children's Institute.

 

Michael is always going to be an Aspie. This is who he is & I don't think he needs fixing.

 

But the kid has been fighting GAS for over 2 years now & I dont know what to do anymore.

 

He has had many MANY positive throat cultures, treated with Antibiotics, coupled with or followed by absolutely HORRIBLE & scary periods of behavior which impair his ability to function. He has missed betwen 25-40 days of school each year. He had tonscills & adnoids removed in January 2009 followed by a couple months of absolute honeymoon behavior - stable & sweet & even.

 

In June it started again...but this time negative throat cultures & positive ASO screen & DNASE B antibody titer of 960 +.

 

The 1st 3 weeks of school have been a nightmare. He is agitated, aggressive, violent, hyper, rocking & bouncing & hitting himself in the head, staring into space, emotional, tearful and irrational. He is just a CRAZY person right now.

 

Today I took him to the Cleveland Clinic. Ped. neuro listens intently, says he clearly has PANDAS, he's clearly impaired & suffering; go to lunch I'm gonna consult with my colleagues & try to get him admitted so we can get him in to see a ped. neuropsych & run tests. Saying it can all be done faster as an inpatient.

 

I am elated!!! Someone gets it. Someone is going to do SOMETHING.

 

I return from lunch, am handed some literature & told that by definition, PANDAS is only a Dx for kids with OCD. Without the OCD component he does not have PANDAS & therefore, his strep & behavior issues are NOT RELATED.

 

Ummmmmm..... ok so you're telling me that bc he doesnt have more obsessive & compulsive tendencies (he has some) there couldnt possibly be a strep-neuropsych connetion???? This antibody titer in the thousands has no impact on the kid's brain??

 

She offered me Risperdone and/or Clonadine and sent us on our way.

 

Does anyone have any input at all? I cried all day long. He cannot live this way, I know there is something amiss, here.

 

ETA: she also said that prophylaxis abx & IVIG are not indicated...an MRI is not indicated...just psych meds :wacko:

 

 

 

Hi I wanted to tell you your not alone.I to have a ASD son hes 15 and has had PANDAS for several years un dxed until recently .All MDs are different especially when it comes to PANDAS.I had to use risperdal because his behavior was so bad .It did help alot .Hes still on it and I am not thrilled but for now it is what it is,We recently did the iv and am having results But this is md # 8 soo keep looking this site is a great ask questions I did !!

 

Melanie

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Just go see Latimer and get IVIG or PEX. Don't mess around with the doctors around you if they are not willing to do IVIG or PEX. That is what your child needs if you can make it happen.

 

 

I completely agree. We went through 4 years of no dx (but trying to convince doctors he was really sick. Officially got dx 1 1/2 years ago. Abx worked great at first, but then stopped working. That dr kept telling us about IVIG & PEX, but wouldn't follow through, and wouldn't tell us who to go to to get it. In our experience, abx does not work forever, and yes, you absolutely must get tx immediately. With ASO levels as high as you're saying, and the symptoms you're having, you have to go straight to Latimer. PS..we live in the Philly area, and there is noone here, either. We finally got tx from Latimer for one of our kids in August, and the other last week. Don't mess around wasting any more time with the other docs if they won't take the next step. Trust me...we kept going from doctor to doctor, and all we succeeded in doing was making ourselves and our children crazy. Now that we finally got them treated (one with IVIG in June, and then PEX in August, and the other went straight to PEX last week), we are thrilled, and watching incredible progress.

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Hi everyone,

 

I'm new to this board...I've been reading your threads for a couple weeks & joined today.

 

We live an hour North of Pittsburgh. My son Michael just turned 9. He is Dx'd as Aspergers, but 2 years ago was also Dx'd with PANDAS by our regular Ped & a neuro developmental ped in Pittsburgh, Dr. Faber, of the Children's Institute.

 

Michael is always going to be an Aspie. This is who he is & I don't think he needs fixing.

 

But the kid has been fighting GAS for over 2 years now & I dont know what to do anymore.

 

He has had many MANY positive throat cultures, treated with Antibiotics, coupled with or followed by absolutely HORRIBLE & scary periods of behavior which impair his ability to function. He has missed betwen 25-40 days of school each year. He had tonscills & adnoids removed in January 2009 followed by a couple months of absolute honeymoon behavior - stable & sweet & even.

 

In June it started again...but this time negative throat cultures & positive ASO screen & DNASE B antibody titer of 960 +.

 

The 1st 3 weeks of school have been a nightmare. He is agitated, aggressive, violent, hyper, rocking & bouncing & hitting himself in the head, staring into space, emotional, tearful and irrational. He is just a CRAZY person right now.

 

Today I took him to the Cleveland Clinic. Ped. neuro listens intently, says he clearly has PANDAS, he's clearly impaired & suffering; go to lunch I'm gonna consult with my colleagues & try to get him admitted so we can get him in to see a ped. neuropsych & run tests. Saying it can all be done faster as an inpatient.

 

I am elated!!! Someone gets it. Someone is going to do SOMETHING.

 

I return from lunch, am handed some literature & told that by definition, PANDAS is only a Dx for kids with OCD. Without the OCD component he does not have PANDAS & therefore, his strep & behavior issues are NOT RELATED.

 

Ummmmmm..... ok so you're telling me that bc he doesnt have more obsessive & compulsive tendencies (he has some) there couldnt possibly be a strep-neuropsych connetion???? This antibody titer in the thousands has no impact on the kid's brain??

 

She offered me Risperdone and/or Clonadine and sent us on our way.

 

Does anyone have any input at all? I cried all day long. He cannot live this way, I know there is something amiss, here.

 

ETA: she also said that prophylaxis abx & IVIG are not indicated...an MRI is not indicated...just psych meds :angry:

 

 

Oh, I forgot to mention in my previous post, that one of my children also is an Aspie. We found out he had PANDAS purely by chance, and only because we were researching it for our other son, who's symptoms are more "classic" if you can call it that. But, again, go straight to Latimer for PEX and/or IVIG. She knows what she's doing.

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You son needs long term full-strength antibioitics and IVIG or PEX. I ditto the others who say go see Dr. Latimer. Good luck and keep us updated. You will get lots of help on this forum!

 

BTW, an MRI wouldn't hurt to rule out other issues, but isn't so useful for "diagnosing PANDAS". I do find it interesting that those docs have no interest in finding the source of your son's behavior change.

 

If you search, there are discussions about Dr. Cunningham's tests (Univ. of Oklahoma)...I think Dr. Latimer will run that one? Or does everyone that has seen Dr. Latimer done the Cunnigham tests independently? Those would be good for you to do.

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I am sooo very sorry for your treatment at the Cleveland clinic. I don't believe they treat PANDAS, I am not sure why they inferred that. Double check, I do not think thay have ever done IVIG on anyone. Please check out Dr K in Chicago from web pediatrics. I am so sorry for your son and you, don't give up.

 

 

 

Hi everyone,

 

I'm new to this board...I've been reading your threads for a couple weeks & joined today.

 

We live an hour North of Pittsburgh. My son Michael just turned 9. He is Dx'd as Aspergers, but 2 years ago was also Dx'd with PANDAS by our regular Ped & a neuro developmental ped in Pittsburgh, Dr. Faber, of the Children's Institute.

 

Michael is always going to be an Aspie. This is who he is & I don't think he needs fixing.

 

But the kid has been fighting GAS for over 2 years now & I dont know what to do anymore.

 

He has had many MANY positive throat cultures, treated with Antibiotics, coupled with or followed by absolutely HORRIBLE & scary periods of behavior which impair his ability to function. He has missed betwen 25-40 days of school each year. He had tonscills & adnoids removed in January 2009 followed by a couple months of absolute honeymoon behavior - stable & sweet & even.

 

In June it started again...but this time negative throat cultures & positive ASO screen & DNASE B antibody titer of 960 +.

 

The 1st 3 weeks of school have been a nightmare. He is agitated, aggressive, violent, hyper, rocking & bouncing & hitting himself in the head, staring into space, emotional, tearful and irrational. He is just a CRAZY person right now.

 

Today I took him to the Cleveland Clinic. Ped. neuro listens intently, says he clearly has PANDAS, he's clearly impaired & suffering; go to lunch I'm gonna consult with my colleagues & try to get him admitted so we can get him in to see a ped. neuropsych & run tests. Saying it can all be done faster as an inpatient.

 

I am elated!!! Someone gets it. Someone is going to do SOMETHING.

 

I return from lunch, am handed some literature & told that by definition, PANDAS is only a Dx for kids with OCD. Without the OCD component he does not have PANDAS & therefore, his strep & behavior issues are NOT RELATED.

 

Ummmmmm..... ok so you're telling me that bc he doesnt have more obsessive & compulsive tendencies (he has some) there couldnt possibly be a strep-neuropsych connetion???? This antibody titer in the thousands has no impact on the kid's brain??

 

She offered me Risperdone and/or Clonadine and sent us on our way.

 

Does anyone have any input at all? I cried all day long. He cannot live this way, I know there is something amiss, here.

 

ETA: she also said that prophylaxis abx & IVIG are not indicated...an MRI is not indicated...just psych meds :angry:

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Remeber this is a process that takes alot of time and effort to sort through to find the right treatments and correct Dr's. We started at Cleveland Clinic seven years ago in ped neurology and I will tellyou they are never going to buy into PANDAS. I even found articles on their website on OCD that reference PANDAS with Dr's names from the clinic and called the specific office and they would not see him for PANDAS. We did however get other diagnosis from them such as Tourettes with immune factors, ADHD and anxiety. The would give antipsych meds Abilify for the symptoms. Then we went to University Hospital Cleve and once again were shot down on PANDAS exsisting in ped neurology but we did get antibiotics longterm from Dr. Berger immunology for the possible strep reaction (although the neuroloist said Dr. Berger passed on our case and he is a leading immunologist in the world, really he left to teach at Case). We did get Aspergers diagnosis from psychiatry at University and encopresis and were treated by psychology for encopresis a University(then the psychiatrist left). Akron Childrens would give us a handout on PANDAS after strep and repeat chorea but would not treat him other then to run tests such as EEG and CAT. Years later we did get antibiotics from immunology at Childrens but only pen vk. We do see Akron child for psychiatry for meds and do use risperdal and clonidine because his moods are too raged without. I know everyone is saying Latimer but she did not offer us IVIG or PEX at our visit. We did get the steroids bu he didn't respond great to them. He seemed to get more irritated and angry. She said it was not clear cut enough. We have seen Dr. Murphy at U of Florida and she gave us suggestions like OT. I have spoken to Dr. K and he suggested steroids. We have tried the DAN! approach with little luck. Basically if it was as easy as antibiotics he would be cured by now. We did Omnicef for 3 years. I am happy for those who were able to get the IVIG and PEX and it worked but for our high anxiety ASD kids it is not as easy to treat and even Dr. Latimer thought we needed meds for moods and anxiety. Also he was in the low PANDAS range on Cunningham's tests and Dr. latimer said that may be his normal. It is all so confusing and not clear cut. I am wondering if Beth Maloney's Dr. would be a good option? Did you try any meds? They really helped us early on.

 

Michele

I am sooo very sorry for your treatment at the Cleveland clinic. I don't believe they treat PANDAS, I am not sure why they inferred that. Double check, I do not think thay have ever done IVIG on anyone. Please check out Dr K in Chicago from web pediatrics. I am so sorry for your son and you, don't give up.

 

 

 

Hi everyone,

 

I'm new to this board...I've been reading your threads for a couple weeks & joined today.

 

We live an hour North of Pittsburgh. My son Michael just turned 9. He is Dx'd as Aspergers, but 2 years ago was also Dx'd with PANDAS by our regular Ped & a neuro developmental ped in Pittsburgh, Dr. Faber, of the Children's Institute.

 

Michael is always going to be an Aspie. This is who he is & I don't think he needs fixing.

 

But the kid has been fighting GAS for over 2 years now & I dont know what to do anymore.

 

He has had many MANY positive throat cultures, treated with Antibiotics, coupled with or followed by absolutely HORRIBLE & scary periods of behavior which impair his ability to function. He has missed betwen 25-40 days of school each year. He had tonscills & adnoids removed in January 2009 followed by a couple months of absolute honeymoon behavior - stable & sweet & even.

 

In June it started again...but this time negative throat cultures & positive ASO screen & DNASE B antibody titer of 960 +.

 

The 1st 3 weeks of school have been a nightmare. He is agitated, aggressive, violent, hyper, rocking & bouncing & hitting himself in the head, staring into space, emotional, tearful and irrational. He is just a CRAZY person right now.

 

Today I took him to the Cleveland Clinic. Ped. neuro listens intently, says he clearly has PANDAS, he's clearly impaired & suffering; go to lunch I'm gonna consult with my colleagues & try to get him admitted so we can get him in to see a ped. neuropsych & run tests. Saying it can all be done faster as an inpatient.

 

I am elated!!! Someone gets it. Someone is going to do SOMETHING.

 

I return from lunch, am handed some literature & told that by definition, PANDAS is only a Dx for kids with OCD. Without the OCD component he does not have PANDAS & therefore, his strep & behavior issues are NOT RELATED.

 

Ummmmmm..... ok so you're telling me that bc he doesnt have more obsessive & compulsive tendencies (he has some) there couldnt possibly be a strep-neuropsych connetion???? This antibody titer in the thousands has no impact on the kid's brain??

 

She offered me Risperdone and/or Clonadine and sent us on our way.

 

Does anyone have any input at all? I cried all day long. He cannot live this way, I know there is something amiss, here.

 

ETA: she also said that prophylaxis abx & IVIG are not indicated...an MRI is not indicated...just psych meds :angry:

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Michelle, I really feel that Dr. Latimer's hands were tied in your situation. B/C your son's Cunningham tests were equivocal (the low end of the PANDAS range which has a lot of overlap with non-PANDAS values) combined with a non-response to steroids, your situation wasn't clear cut and it would have been irresponsible for her to recommend going ahead with IVIG or PEX.

 

On the other hand, I personally still feel that you would have little to lose with a 2 mo. trial of Azithromycin. I would say that is one qualm I have with both Dr. Latimer and Dr. K. is that they are both too reluctant to use Azithromycin (at good doses). Dr. K. seems to prefer Augmentin and Dr. Latimer likes (?? pen). Many cases on this forum respond better to Azithromycin than other antibiotics, probably b/c it gets intracellular strep and is immune-modulating. I think esp. with pen, I think it is too easy to have it not be clinically effective against strep that might be hiding out in the body (sinuses etc.) I post this link a lot, but will post again for Addi. http://www.entrepreneur.com/tradejournals/.../169459644.html

 

BTW I believe that T.Mom (I hope this is okay to say) spoke with Sammy's dr. Her impression was that she was not really that up to date on the latest info/research, but might be willing to learn.

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Addi,

 

Again I want to say that I am sorry for your troubles...but you have found the right place. I found this forum two days after meeting with an Infectious Disease specialist at Children's Hospital of Philadelphia. I was beyond frustrated because I had only just heard of PANDAS twenty days before...wasted three weeks to see him, continued to see my dd6 just completely withdrawl. He had the arrogance to tell me that because there was no ticcing, and no real evidence of ocd, and this was her first episode he couldn't really say a yes or no to a PANDAS diagnosis...but if she gets better, and then has another episode, well then he would change his mind...so very generous don't you think? He believed she didn't meet Susan Swedo's critera...that was set up as a guideline for performing a research study...not a definitive diagnostic.

 

Of course, we heard the lecture about how antibiotics can't treat the disease becasue it is believed to by caused by antibodies, IVIG and PEX are so dangerous and not approved for PANDAS and not proven to work at all. He left us no treatment options. He suggested we find a pediatric psychatrist.

 

We saw Dr. Latimer two weeks later and she suggested prednisone. A commonly prescribed medication. After six weeks on the medication (the last three weeks were a very low dose of 5mg/once a day), our daughter was so very, very close to her original baseline that we felt she was recovered. Now two months past that last dose there isn't any trace of PANDAS behaviors, and she started school without any issues. Her teacher, principal and the school counseler were just amazed at her recovery (of course they were just as perplexed by her behavior shift in to begin with)

 

Dr. Latimer's office is just outside of DC in Bethesda, MD. Her office phone number is (301) 530-9200. We live right outside of Reading, PA, and it took about three hours to drive there.

 

She has also put my daughter on 100mg of azith for about three months, and just two weeks ago we switched to pen vk at my request. She had suggested we could do the azith twice a week as a preventative measure for strep. But I wanted to switch to pen vk, and she was perfectly okay with that.

 

I agree with all of the previous posts that IVIG or PEX are probably needed in your case, and the wonderful thing about Dr. Latimer is that she will offer those treatments if she deems them necessary, and she will follow up with the needed antibiotics for prevention of future strep.

 

P.Mom on this forum is from the Pittsburg area, she also takes her children to see Dr. Latimer.

 

One thing to consider with antibiotic choices is that there is a strain (I'm not sure if it is one or more) of strep that has built a resistance to azithromycin (Zithromax) and it is prevelant in your area.

 

Also, I know another post mentioned that you should go to www.pandasnetwork.org -- do that, get on the mailing list. The information and support from Diana P. is invaluable. She is also compiling data and histories, so introduce yourself to her.

 

Good luck...lots of hugs...you have found the the right place.

 

~Karen

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I am getting ready to walk out the door for work. I work at a hospital & his office says he's up on the floor, so I'm hoping to corner the man & make him call Dr. Latimer for me!

 

THANK YOU you guys. I am so grateful for you sharing your stories with me. You have been immensely helpful!

 

Kayanne, we used to live in Sinking Spring -- where are you guys? Thanks for the help!

 

 

 

 

 

Addi,

 

Again I want to say that I am sorry for your troubles...but you have found the right place. I found this forum two days after meeting with an Infectious Disease specialist at Children's Hospital of Philadelphia. I was beyond frustrated because I had only just heard of PANDAS twenty days before...wasted three weeks to see him, continued to see my dd6 just completely withdrawl. He had the arrogance to tell me that because there was no ticcing, and no real evidence of ocd, and this was her first episode he couldn't really say a yes or no to a PANDAS diagnosis...but if she gets better, and then has another episode, well then he would change his mind...so very generous don't you think? He believed she didn't meet Susan Swedo's critera...that was set up as a guideline for performing a research study...not a definitive diagnostic.

 

Of course, we heard the lecture about how antibiotics can't treat the disease becasue it is believed to by caused by antibodies, IVIG and PEX are so dangerous and not approved for PANDAS and not proven to work at all. He left us no treatment options. He suggested we find a pediatric psychatrist.

 

We saw Dr. Latimer two weeks later and she suggested prednisone. A commonly prescribed medication. After six weeks on the medication (the last three weeks were a very low dose of 5mg/once a day), our daughter was so very, very close to her original baseline that we felt she was recovered. Now two months past that last dose there isn't any trace of PANDAS behaviors, and she started school without any issues. Her teacher, principal and the school counseler were just amazed at her recovery (of course they were just as perplexed by her behavior shift in to begin with)

 

Dr. Latimer's office is just outside of DC in Bethesda, MD. Her office phone number is (301) 530-9200. We live right outside of Reading, PA, and it took about three hours to drive there.

 

She has also put my daughter on 100mg of azith for about three months, and just two weeks ago we switched to pen vk at my request. She had suggested we could do the azith twice a week as a preventative measure for strep. But I wanted to switch to pen vk, and she was perfectly okay with that.

 

I agree with all of the previous posts that IVIG or PEX are probably needed in your case, and the wonderful thing about Dr. Latimer is that she will offer those treatments if she deems them necessary, and she will follow up with the needed antibiotics for prevention of future strep.

 

P.Mom on this forum is from the Pittsburg area, she also takes her children to see Dr. Latimer.

 

One thing to consider with antibiotic choices is that there is a strain (I'm not sure if it is one or more) of strep that has built a resistance to azithromycin (Zithromax) and it is prevelant in your area.

 

Also, I know another post mentioned that you should go to www.pandasnetwork.org -- do that, get on the mailing list. The information and support from Diana P. is invaluable. She is also compiling data and histories, so introduce yourself to her.

 

Good luck...lots of hugs...you have found the the right place.

 

~Karen

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