Please help...need a doctor in Dallas/anywhere for PANDAS

[madhu]

Hi everyone,

I need your help. I've been browsing this site for 5 years , but have not posted much. this is our story. I have 2 boys 9 and 5. My older one has tics for the past 5 years.

His started at 3 1/2 to 4 years. We have been doing vitamins , homeopathy,antiyeast and some chelation. he was a lot better but for the last 3 months they are back.

 

About 1 month back both my boys ( 9 And 5) were sick . When we tested them for strep,,,,my older one tested negative for rapid and my younger tested positive. that is time I saw tics coming back for my older one that is when I started thinking it might be PANDAS for my older one. we ordeered the culture test and his titers ASO andDNASE..they were also normal. so my ped doesnot believe he has pandas. So when I had asked his pediatrician to prescribe zithromax anyway and see she did reluctantly after another 4 days. He finished his course. I have benn researching on PANDAS like crazy and trying to find a docotr who is familiar with this. But the worst is happening again.....My little one on the other hand was given amoxicillin. But he started saying " my back is moving but i dont want to move". I did not understand then but for the past 3 days he has been doing that a lot and it has been hurting him. It is like he is moving his right hip and his whole abdomen is kind of twisting and cramping. My worst fear is coming true and feel totally lost and heartbroken to see both my kids going through this.

 

 

Please help...I need a good doctor in dallas area who is familiar with PANDAS. the more I read on this ... the more scared I am becoming. I feel to blame. My little one was having a lot of problems with ear infections last year and have been dodging the toncilectomy till now. How I wish I had done it and maybe this would not have happened to him too.

He is right now sick and complaining of headache , body pains and our ped sent him to the ER to check for RHEUMATIC FEVER.

IT was a total waste ...they made us wait the whole day and did some blood tests which they said are fine and ER doctor said he looks good and he does not see the tic that I decribed to him....i cant see how he could not.

 

The tests he ran are

 

rapid throat test came back negative

ESR it was 15 and he said it was normal no rheumatic fever

CRP was .5 and he said it was normal no rheumatic fever

EKG was normal

ASO titer we are still waiting.

he did not order the dNASE...said it was not neccessary.

 

 

Pleasse I have the folowing questions...

1] I need a doctor familiar with PANDAS in dallas area but anywhere in US is also ok ....we can travel

2] can he have PANDAS and still test test negative

3] what antibiotic are you all using prophylacticallly

4] what is the dosage of prophylactic antibiotic I have to use for further prevention till I find the right docotr

5] any other tests need to be done.

 

this site has been a blessing for our family through this crisis for the last 5 years and i am depending on you again for help. thank you all very very much from the bottom of my heart.

Madhu.

[Chemar]

helo and welcome

 

I moved your post over to our PANDAS forum as the parents here would be best able to answer your questions

[dcmom]

If you suspect pandas, I would beg the doctor for a month of zithromax. It is a fairly benign start to figuring this out. I think, if it is pandas, it may respond. My dd did respond pretty well to daily zithromax, but it took 20 days. (she was on a daily dose, not 5 days on- 5 off).

 

I hope someone here can recommend a doctor. If not, I would call pediatric neurologists, and ask if they treat pandas patients....

[EAMom]

1]I need a doctor familiar with PANDAS in dallas area but anywhere in US is also ok ....we can travel

Dr. Kovacevic (in Chicago) http://www.webpediatrics.com/pandas.html has treated many on this board (IVIG). He will answer e-mails (no charge) and also does phone consults (charge). You would need a local doc to work with him if you want abs.

 

Maybe someone else can recommend someone in Dallas.

 

2 can he have PANDAS and still test test negative

Yes.

 

To diagnose PANDAS, history and clinical signs are much more important than any lab test.

Unfortunately there is no (commercially available) "test" for PANDAS. A throat culture can confirm GABHS. (Even a culture isn't 100% since strep can hide out in places that are difficult to culture, eg. sinuses.) ASO/anti-dnase b titers may be helpful if you don't have a positive culture. However, lots of kids with PANDAS have low titers. Read Busters Aug 24 and Jan 12 posts on titers http://www.latitudes.org/forums/index.php?...art=#entry29305 Please be aware that lots of docs are confused about strep titers and may use low titers as a reason to say your child does not have PANDAS. This is completely wrong, you cannot rule out PANDAS on the basis of titers.

 

Note: If your doc does the "rapid" test to check for strep, always follow up with a culture (72 hour) if the rapid is negative. Don't just trust the rapid if it is negative. (You can believe a positive rapid however.)

 

Also, be aware that lots of PANDAS kids get strep with no other symptoms (no sore throat, no fever) other than behavior change (or tics).

 

 

3] what antibiotic are you all using prophylacticallly

Lots of folks are on Azith. Some are on Amoxcillin, Pen, Keflex. If your child is symptomatic (tics, ocd, or other behavior change), I would recommend starting with a 1- 2 mo. trial of Azith. at a (higher) therapeutic dose (not the lower prophylactic dose.) Azith. is better than other abs at clearing the carrier state, gets intracellular strep, and is immune modulating/anti-inflammatory. Many PANDAS kids also seem to do better on Advil (ibuprofen)...not sure about the tics but it seems to help mood/ocd/sleep etc.. I think it decreases the inflammation in the basal ganglia/brain. You can give the Advil with the Azith.

 

4]what is the dosage of prophylactic antibiotic I have to use for further prevention till I find the right docotr

If you suspect PANDAS would start with a higher therapeutic dose. Culture first (do the 72hour if the rapid is neg). However, some kids will culture negative and still respond to abs. Presumably they have strep which isn't easily culturable (in sinuses, or present in low numbers and difficult to culture). My 55 pound dd gets azith. 250mg/day. We also give her 200mg/advil once a day. (If your child is really bad, I would imagine it would be safe to give the advil 2-3x daily short term.) If your child is closer to adult size then you might want to go even higher (375 or 500mg/day) on the azith..

 

In theory, after a couple of months you should be able to go down to a lower "prophylatic" dose of Azith. Swedo used Azith. 500mg/week...or Pen 250mg 2x daily.

 

5]any other tests need to be done.

 

Some kids get MRI's to rule out other things. Others have test to rule out other dz (eg lymes etc.). You may want to get a baseline liver panel (if your doc is worried) b-4 starting long term abs (eg. azith.)....

[michele]

I just heard of this Dr. Talwar in Arizona who is an expert in PANDAS neurology and psychiatry. The person who uses him said he is wonderful. He follows up with EEG and gives antibiotics, steroid bursts and has really helped her son over the years. Her son now has seizures with the PANDAS. http://www.wellness.com/dir/2012717/neurol...rology-assoc-md

http://www.healthgrades.com/directory_sear...md-083c4cf4.cfm

I am not sure how far he is from you but maybe he could conult with your ped or neurologist. I am hoping to be able to talk to him myself.

 

Michele

Hi everyone,

I need your help. I've been browsing this site for 5 years , but have not posted much. this is our story. I have 2 boys 9 and 5. My older one has tics for the past 5 years.

His started at 3 1/2 to 4 years. We have been doing vitamins , homeopathy,antiyeast and some chelation. he was a lot better but for the last 3 months they are back.

 

About 1 month back both my boys ( 9 And 5) were sick . When we tested them for strep,,,,my older one tested negative for rapid and my younger tested positive. that is time I saw tics coming back for my older one that is when I started thinking it might be PANDAS for my older one. we ordeered the culture test and his titers ASO andDNASE..they were also normal. so my ped doesnot believe he has pandas. So when I had asked his pediatrician to prescribe zithromax anyway and see she did reluctantly after another 4 days. He finished his course. I have benn researching on PANDAS like crazy and trying to find a docotr who is familiar with this. But the worst is happening again.....My little one on the other hand was given amoxicillin. But he started saying " my back is moving but i dont want to move". I did not understand then but for the past 3 days he has been doing that a lot and it has been hurting him. It is like he is moving his right hip and his whole abdomen is kind of twisting and cramping. My worst fear is coming true and feel totally lost and heartbroken to see both my kids going through this.

 

 

Please help...I need a good doctor in dallas area who is familiar with PANDAS. the more I read on this ... the more scared I am becoming. I feel to blame. My little one was having a lot of problems with ear infections last year and have been dodging the toncilectomy till now. How I wish I had done it and maybe this would not have happened to him too.

He is right now sick and complaining of headache , body pains and our ped sent him to the ER to check for RHEUMATIC FEVER.

IT was a total waste ...they made us wait the whole day and did some blood tests which they said are fine and ER doctor said he looks good and he does not see the tic that I decribed to him....i cant see how he could not.

 

The tests he ran are

 

rapid throat test came back negative

ESR it was 15 and he said it was normal no rheumatic fever

CRP was .5 and he said it was normal no rheumatic fever

EKG was normal

ASO titer we are still waiting.

he did not order the dNASE...said it was not neccessary.

 

 

Pleasse I have the folowing questions...

1] I need a doctor familiar with PANDAS in dallas area but anywhere in US is also ok ....we can travel

2] can he have PANDAS and still test test negative

3] what antibiotic are you all using prophylacticallly

4] what is the dosage of prophylactic antibiotic I have to use for further prevention till I find the right docotr

5] any other tests need to be done.

 

this site has been a blessing for our family through this crisis for the last 5 years and i am depending on you again for help. thank you all very very much from the bottom of my heart.

Madhu.

[lss]

Madhu,

 

I live in the Dallas area, and I too have a 9 year old with Pandas. I sent you a personal message with my info. I can refer you to at least 1 doctor who prescribes the zithromax for my son after speaking with Dr. K in Chicago.

 

Linda

[madhu]

Hi all,

Thankyou very much for your responces. I'll ask my ped to talk to Dr K about the prophylactic antibiotic dosage for my kids. It is a stressful time for us and very much appreciate your response.

From what i read through past posts....many are using the zithromax prophylactically....

some of you are using once a week and some daily. What is Dr K recommending. My son is 5 yrs and 40 lbs. can someone recoomend what dosage he needs to be.

thanks

Madhu.

[colleenrn]

Madhu-

I have a 6 yo (weighs about 50 lb.) and an 8 yo (weighs 65 lb.) taking 250mg of Zithromaz per day since Oct. 2008. You mentioned a possible tonsillectomy- will they remove the adenoids also? Strep can hide in the adenoids, perhaps that is why the throat culture is negative.

Colleen

[EAMom]

My dd was on the same 250mg last year when she weighed only 45 pounds (she had lost weight b/c of PANDAS anorexia nervosa, also she's grown in a year).

 

Can your son swallow pills? If you do the liquid you might end up giving a 40 pounder closer to 200mg/day. If he's 40 and can swallow pills you can acheive 200mg/day by giving the 250mg daily but skip every 5th day...averages out to 200mg/day (Azith. has a long 1/2 life so you can do this.)

[lfran]

For a Dallas doctor, you might want to consider this. Great Plains Laboratory is sponsoring a conference on biomedical approaches to Tourette's/OCD/Depression in Dallas on May 23 and 24th. The website is: http://www.touretteconference.com/

 

One of the speakers, Constantine Kotsanis, MD , is local to Texas and is also sponsoring a post-conference clinic for potential patients at the end of June.

 

I am considering attending, even though I live in California.

 

Hope this helps.

 

- Liane

 

 

Hi everyone,

I need your help. I've been browsing this site for 5 years , but have not posted much. this is our story. I have 2 boys 9 and 5. My older one has tics for the past 5 years.

His started at 3 1/2 to 4 years. We have been doing vitamins , homeopathy,antiyeast and some chelation. he was a lot better but for the last 3 months they are back.

 

About 1 month back both my boys ( 9 And 5) were sick . When we tested them for strep,,,,my older one tested negative for rapid and my younger tested positive. that is time I saw tics coming back for my older one that is when I started thinking it might be PANDAS for my older one. we ordeered the culture test and his titers ASO andDNASE..they were also normal. so my ped doesnot believe he has pandas. So when I had asked his pediatrician to prescribe zithromax anyway and see she did reluctantly after another 4 days. He finished his course. I have benn researching on PANDAS like crazy and trying to find a docotr who is familiar with this. But the worst is happening again.....My little one on the other hand was given amoxicillin. But he started saying " my back is moving but i dont want to move". I did not understand then but for the past 3 days he has been doing that a lot and it has been hurting him. It is like he is moving his right hip and his whole abdomen is kind of twisting and cramping. My worst fear is coming true and feel totally lost and heartbroken to see both my kids going through this.

 

 

Please help...I need a good doctor in dallas area who is familiar with PANDAS. the more I read on this ... the more scared I am becoming. I feel to blame. My little one was having a lot of problems with ear infections last year and have been dodging the toncilectomy till now. How I wish I had done it and maybe this would not have happened to him too.

He is right now sick and complaining of headache , body pains and our ped sent him to the ER to check for RHEUMATIC FEVER.

IT was a total waste ...they made us wait the whole day and did some blood tests which they said are fine and ER doctor said he looks good and he does not see the tic that I decribed to him....i cant see how he could not.

 

The tests he ran are

 

rapid throat test came back negative

ESR it was 15 and he said it was normal no rheumatic fever

CRP was .5 and he said it was normal no rheumatic fever

EKG was normal

ASO titer we are still waiting.

he did not order the dNASE...said it was not neccessary.

 

 

Pleasse I have the folowing questions...

1] I need a doctor familiar with PANDAS in dallas area but anywhere in US is also ok ....we can travel

2] can he have PANDAS and still test test negative

3] what antibiotic are you all using prophylacticallly

4] what is the dosage of prophylactic antibiotic I have to use for further prevention till I find the right docotr

5] any other tests need to be done.

 

this site has been a blessing for our family through this crisis for the last 5 years and i am depending on you again for help. thank you all very very much from the bottom of my heart.

Madhu.

[poetmom]

Hi - I'm new to this blog and will post an intro in a minute, but this one caught my eye because we live in the Dallas area. My ds (5yo now) was diagnosed with PANDAS in 2007. We have only ever seen a pediatrician and an infectious disease specialist, but I really, really like both and I have seen my little boy go from a child I know longer knew, understood, or could stand to be around (I'm ashamed to say) to a child who is loving, affectionate and interactive.

Anyway, our pediatrician is Dr. Wilfred Raine in Arlington. Our Pediatric Infectious Disease Specialist is Dr. Mark Mazade in Fort Worth. Both are part of Cook Children's Medical Center and both are kind, patient and understanding.

Particularly with Dr. Mazade, who is probably one of the gentlest human beings I've ever met, even in the midst of my ds first episode, my son felt comfortable with him [read: looked at him and spoke to him] on the very first visit.

 

I hope this information is helpful to you.

 

Robin

[NancyD]

A great place to go in Texas is Thoughtful House in Austin. Their doctors are excellent and they understand and treat PANDAS. They are DAN doctors. See http://www.thoughtfulhouse.org/

 

Nancy

[NancyD]

A great place to go in Texas is Thoughtful House in Austin. Their doctors are excellent and they understand and treat PANDAS. They are DAN doctors. See http://www.thoughtfulhouse.org/

 

Nancy

[lss]

Robin

 

We saw Dr. Mazade at Cooks and his response was that our son's symptoms were not the same as his previous "other 2 Pandas patients", so therefore he did not have Pandas. I had test results from Dr. Cunningham, he didn't read them, just looked at the papers for about a split second, then he said sorry, can't help you, We also saw a neurologist at Cooks, Dr. Acosta, who said there was no such thing as Pandas, your son has tourettes. He refused to look at the papers, said they meant nothing to him. He aslo said he wanted something from a credible university, I guess OU is not credible enough for him.

 

We had already don the prednisone with Dr. K at the time, and my son did respond. So along with Dr. Cunninghams test results and the fact that he had responded to the prednisone, we knew our son has Pandas.

 

Dr. Cunningham had originally suggested we use Dr.Istre in Dallas, but when we talked with him, he saw only patients that were already in the hospital, and he told us that any doctor at Cooks or Southwest UT would be fine. I guess not.

 

We have since gone to Chicago and had IVIG with Dr K, we also saw Dr. Latimer at Georgetown, both agreed that my son has Pandas, we will be doing the PEX with Dr. Latimer in a few weeks.

 

I'm glad you had luck with Dr. Mazade, but he needs to look and think outside of the box and know that all of these kids do not present with the exact same symptoms.

 

Dr. Acosta, the neuro at Cooks was quick to rx drugs, but would not even consider Pandas. However, when I mentioned a possible study from Dr. Leckman at Yale and Latimer at Georgetown, then he said he might be interested in placing some of his "tourettes" patients in the study. Yeah right!

 

I have been fortunate enough to have found a local Pediatrician who did talk with Dr. K and is willing to prescribe the zithromax on a monthly basis for my son. She was honest enough to say "I really don't understand Pandas, but I'm willing to learn".

 

Linda

 

 

 

Hi - I'm new to this blog and will post an intro in a minute, but this one caught my eye because we live in the Dallas area. My ds (5yo now) was diagnosed with PANDAS in 2007. We have only ever seen a pediatrician and an infectious disease specialist, but I really, really like both and I have seen my little boy go from a child I know longer knew, understood, or could stand to be around (I'm ashamed to say) to a child who is loving, affectionate and interactive.

Anyway, our pediatrician is Dr. Wilfred Raine in Arlington. Our Pediatric Infectious Disease Specialist is Dr. Mark Mazade in Fort Worth. Both are part of Cook Children's Medical Center and both are kind, patient and understanding.

Particularly with Dr. Mazade, who is probably one of the gentlest human beings I've ever met, even in the midst of my ds first episode, my son felt comfortable with him [read: looked at him and spoke to him] on the very first visit.

 

I hope this information is helpful to you.

 

Robin

[judy1270]

My heart goes out to you and your children, this Forum has helped me so much the people here know a lot about Pandas.

I don't get to post often, but I try to read all the info on Pandas.

The people here are wonderful, if they can help they will.

God Bless you,

Judy