PANDAS

[trubiano]

I just foud this website and I would not wish this on anyone, but I am so happy to find others that can understand! My 6 year old son was diagnosed with PANDAS and I can not find anyone(doctors) who can tell me what to do. They have put him on a penicillian injections every three weeks for five years, have us seeing a neurologist/psychologist./ENT/ID, and basically said give him Paxil or Clonidine. His tics went away after a second round of amoxicillan, but the OCD/behavior issues still are coming and going. I am at that beginning stage of not knowing where to go and who can help us. His behavior/OCD issues go away about two days after his injection and then start coming back about a week before the next one is due. The doctor's say the penicillian isn't playing a part, but how could this happen the same way three months in a row? Should I have more blood work done to see if there is strep still growing? Maybe a blood culture? Will this go on for the rest of his life or is there something I can do now to help stop it? I look forward to any help you can give! I feel as if we are at a stand still. No one knows how to help us. I don't know how to help him..

[Chemar]

Hi and welcome to Latitudes/ACN

 

I will defer to our PANDAS experts to give you details but just wanted to draw your attention to two things:

 

if you start searching all our PANDAS posts you will notice that by great trial and error, those who are using zithromax (azithromycin) as the antibiotic are finding the very best results

 

As to finding good doctors knowledgeable in treating PANDAS, they are few and far between at present.

 

Two of the experts in the field who are Dr Susan Swedo in Bethesda MD who is associated with NIMH and Dr Tanya Murphy (who we saw) at the Shands Clinic in Gainesville, Georgia. Dr Murphy is the researcher associated with the Tourette Syndrome Association

 

here is Dr Swedo's info http://neuroscience.nih.gov/Lab.asp?Org_ID=448

and

here is Dr Murphy's http://mdc.mbi.ufl.edu/murphy.htm

 

HTH

Cheri

[faith]

Trubiano,

Sorry you are feeling so helpless right now. However, it seems you have gotten over the first hurdle in finding doctors who did the testing and confirmed this is an issue for your child? Just curious, if they prescribed the penecilin, what makes you feel they don't know what to do? These doctors must know something about this or they wouldn't have prescribed the penecilin.

 

May I ask how you got to this point? It seems you are ahead of the game in having the antibiotics and they seem to help at least with the tics. Maybe the injection is too far apart? Why injections and not pill form? Is the behavioral and OCD very bad? Are you in a big city? If so, you may not have to go far to find someone more knowledgeable.

 

Faith

[Cum Passus]

Hi trubiano,

 

Welcome, I'm not a PANDAS mom but did want to welcome you, and let you know you will feel so much better after being here.

 

C.P.

[trubiano]

Trubiano,

Sorry you are feeling so helpless right now. However, it seems you have gotten over the first hurdle in finding doctors who did the testing and confirmed this is an issue for your child? Just curious, if they prescribed the penecilin, what makes you feel they don't know what to do? These doctors must know something about this or they wouldn't have prescribed the penecilin.

 

May I ask how you got to this point? It seems you are ahead of the game in having the antibiotics and they seem to help at least with the tics. Maybe the injection is too far apart? Why injections and not pill form? Is the behavioral and OCD very bad? Are you in a big city? If so, you may not have to go far to find someone more knowledgeable.

 

Faith

 

Faith,

Thank you for your post! Our story is so long I didn't want to bore everyone. The short version: My son was diagnosed with Syndenham's Chorea by our Ped and then sent to a Neuro and Cardiologist. Luckly no valve damage and the Cardiologist started him on the PCN injections. It wasn't until all the OCD/behavior issues started that I had to get my son's medical records to bring to all the new doctor's appointments that I saw that the Neurologist had the PANDAS diagnosis on his chart and not the Syndenham's Chorea. When I questioned it he said he believed the tics where not Chorea, but from the strep infection. He also doesn't think he needs antibiotic. I have not told this to my Ped in fear they will stop giving it to him. We are doing the injections because my son has not mastered swallowing a pill and when I asked about a liquid my Ped told me that was not an option becasue he needed a long lasting PCN. As for your your question about how bad the OCD and behavior is.. It comes and goes daily. He can wake up one moring and we will think GREAT this might be over. The next day he has a vocal tic with not a very nice word, opening doors(including car doors) three times, having to lick anything he touches, crying/screaming spells lasting 20-30 minutes, and just this week nightmares have started. We live in Georgia, and our Neuro works out of the Children's Hospital here, but had no one he knew of to refer us to that worked with PANDAS patients. It's just frustrating going from specialist to specialist and they have no answers other than "Let me do some reading on PANDAS and get back with you". I guess my main questions are 1. Will this last forever? 2. Who should we see to manage his care? 3. Tonsils out or not? 4. How do we help him with his OCD/behavior once school starts? I'm at home with him so I can keep up the positive reinforment we were told to try, but will the teachers be able and willing to help? Thank you again for replying to me. I am greatful for any advice!

[trubiano]

Hi and welcome to Latitudes/ACN

 

I will defer to our PANDAS experts to give you details but just wanted to draw your attention to two things:

 

if you start searching all our PANDAS posts you will notice that by great trial and error, those who are using zithromax (azithromycin) as the antibiotic are finding the very best results

 

As to finding good doctors knowledgeable in treating PANDAS, they are few and far between at present.

 

Two of the experts in the field who are Dr Susan Swedo in Bethesda MD who is associated with NIMH and Dr Tanya Murphy (who we saw) at the Shands Clinic in Gainesville, Florida. Dr Murphy is the researcher associated with the Tourette Syndrome Association

 

here is Dr Swedo's info http://neuroscience.nih.gov/Lab.asp?Org_ID=448

and

here is Dr Murphy's http://mdc.mbi.ufl.edu/murphy.htm

 

HTH

Cheri

 

Cheri,

 

Thank you for the great information! Your post says Dr. Murphy is in Georiga? Is that correct? I could not find an office other than in Florida. I have read I think all the posts and feel so much better. I am going to try the fish oil, vitamins, and diet changes. I also can't wait unitl Monday to try and get my son an appointment with Dr. Murphy. Can you please tell me what the dosing is for Zithromax? Do they take it daily? I was wondering if he still has strep growing somewhere because the way his OCD/behavior comes back close to his next injection time. Do you think I should push getting more blood work? We did the Titer back in March when all this first started. He was put on Augmentin for 10 days and then the strep was still there. They gave him the PCN injection and then two weeks later he spiked a fever and the strep was again positive. They gave him another PCN injection and so far the throat culture has been negative. We have passed the point of being scared and now we are trying to find out what the right treatment is to help control and maybe even get rid of this! Thank you again!

[Chemar]

oooops! so sorry...Dr Murphy is in Gainesville FLORIDA I have corrected my previous post!

 

Ronna and Alison have posted quite a lot re zithromax for PANDAS so maybe search their names...Alison is ad_ccl

[michele]

I just foud this website and I would not wish this on anyone, but I am so happy to find others that can understand! My 6 year old son was diagnosed with PANDAS and I can not find anyone(doctors) who can tell me what to do. They have put him on a penicillian injections every three weeks for five years, have us seeing a neurologist/psychologist./ENT/ID, and basically said give him Paxil or Clonidine. His tics went away after a second round of amoxicillan, but the OCD/behavior issues still are coming and going. I am at that beginning stage of not knowing where to go and who can help us. His behavior/OCD issues go away about two days after his injection and then start coming back about a week before the next one is due. The doctor's say the penicillian isn't playing a part, but how could this happen the same way three months in a row? Should I have more blood work done to see if there is strep still growing? Maybe a blood culture? Will this go on for the rest of his life or is there something I can do now to help stop it? I look forward to any help you can give! I feel as if we are at a stand still. No one knows how to help us. I don't know how to help him..

 

After seeing a pediatric neurologists for 4 years for my five year old son PANDAS I have finally gotten a prescription for penicillin v liquid twice a day for 3 months. He finally was tested by an immunologist for titers and strep bloodwork and tested borderline elevated. I feel happy they are trying something as his emotional state and hyperness has gotten worse recently. I am getting nervous about kindergarten and his behaviors. Has anyone had success with penicillin long term? The Dr. did not seem kowlegable on azith. At least it is a starting ground.

 

Michele

[trubiano]

I just foud this website and I would not wish this on anyone, but I am so happy to find others that can understand! My 6 year old son was diagnosed with PANDAS and I can not find anyone(doctors) who can tell me what to do. They have put him on a penicillian injections every three weeks for five years, have us seeing a neurologist/psychologist./ENT/ID, and basically said give him Paxil or Clonidine. His tics went away after a second round of amoxicillan, but the OCD/behavior issues still are coming and going. I am at that beginning stage of not knowing where to go and who can help us. His behavior/OCD issues go away about two days after his injection and then start coming back about a week before the next one is due. The doctor's say the penicillian isn't playing a part, but how could this happen the same way three months in a row? Should I have more blood work done to see if there is strep still growing? Maybe a blood culture? Will this go on for the rest of his life or is there something I can do now to help stop it? I look forward to any help you can give! I feel as if we are at a stand still. No one knows how to help us. I don't know how to help him..

 

After seeing a pediatric neurologists for 4 years for my five year old son PANDAS I have finally gotten a prescription for penicillin v liquid twice a day for 3 months. He finally was tested by an immunologist for titers and strep bloodwork and tested borderline elevated. I feel happy they are trying something as his emotional state and hyperness has gotten worse recently. I am getting nervous about kindergarten and his behaviors. Has anyone had success with penicillin long term? The Dr. did not seem kowlegable on azith. At least it is a starting ground.

 

Michele

 

Wow! My Ped told me my son had to have the PCN injections until he could swallow pills. I can't wait to ask about the liqid PCN. Thank you for that info! If you go to Google and type in PANDAS NIMH click on the first website and then click on recent publications the first publication that comes up is all about azith vs pcn you can bring to your doctor. I'm going next week and talk to mine about it. I'm also worried about school next year. Do we start the year off telling the teachers and draw attention to my child from the start?

[colleenrn]

Hi. My daughter was diagnosed with PANDAS when she was 5 and after 10 months of recurrent strep throat and going through a lot of different antibiotics (Pen VK, Amoxicillin, Augmentin, Clindamycin) we took her to a pediatric ENT who took one look in her throat and could not believe how huge her tonsils were. When he removed her tonsils and adenoids he said they were so "cryptic" that the antibiotics were not getting to all of the strep hidden in the crypts, nor would it ever have gotten to it. Chronic tonsil infections and enlarged tonsils can lead to a condition called chronic cryptic tonsillitis. The tonsils contain many small pockets and infoldings called crypts. Initially, on a course of antibiotics her tics would disappear or at least dramatically decrease until she finished the antibiotic at which time the tics and OCD behaviors would return. She was completely symptom free and strep free for over a year. You may want to consider taking your child to a pediatric ENT for evaluation.

I am the one who posted about the ineffectiveness of penicillin on strep. Someone recently posted the link to the article about this. The evidence is out there about Cephalosporins and Azithromycin being the drug of choice for strep, unfortunately a lot of physicians are sticking with penicillins. There are many cephalosporins and also Azithromycin (Zithromax) that come in liquids. I wish you lots of luck! Hang in there!!

Colleen

[mommy007]

Welcome Trubiano!!

 

I am the mother of a 14 year old son who was diagnosed with PANDAS 4 years ago - he has had symptoms for about 6 years. He was misdiagnosed for a couple of years.

 

my son was put on antibiotics 250mg. twice daily. It took time, but he slowly recovered. My son suffered from what looked like ADHD, sleep problems, bed wetting, tics and ocd - he was a mess.

 

it seems to me daily medication is more consistent that injections - you are seeing a pattern, you son is having tics a week prior to his next injection. I would speak to the doctor and get him on a daily antibiotic.

 

As far as school goes. is he entering 1st grade???? The school is going to notice, it's best to approach them, with documentation, doctors notes and info from the web. I actually contacted the NIH and spoke to several reseachers working with Susan Swedo during our ordeal. Documentation is powerful. See if you can find a child advocate to attend a meeting with school personal prior to the year starting. The school will only do what they have to do, so you need to tell them what you want and ask what is offered. A child advocate will help support you, and make sure your child gets the support and understanding needed.

 

I also recommend documenting from now on, what medication he takes, how much, what effects you see. And as time goes on notice when he gets sick, what symptoms he has and how long it lasts. This was very helpful in proving to additional specialist my son's history. And always let the teachers know if your son has a "flare up". They always appreciate knowing, they do sence when things are different and appreciate the heads up.

 

It can be tough at times but work with the teachers and utilize all they can do for him. He needs time for the antibiotics to work.

 

I went through many hard times, my 14 year old is going off the antibiotic this month - he is 6foot tall and has NO symptoms at all! It does get better - If I can be of any help to you and your family just let me know--

 

Barbara

[Dedee]

Trubiano,

Hello, and welcome. Saw your post to me below and then read your post here. Sounds like you are really going through a rough time with your son. In a way it was easier with my son in that his OCD started first when he was five. As is the case with PANDAS patients, it was very abrupt in onset (about 10 days following a strept infection), and he was suddenly worried about contamination issues and washing his hands constantly. He always wanted to wash the plates three times before eating on them, etc.. We started him on Zoloft and his symptoms went away. The symptoms re-appeared a couple years later after another strep episode and after that we began to have issues with chronic anxiety, his emotions were very unstable, he would talk out in class alot, cried alot while doing his homework, lots of frustration issues. Also, he had issues with feeling the need to urinate, but then couldn't. I found out only recently that is common for PANDAS patients. His tics did not begin until this last year when he had a series of 4 strep infections in a row. He suddenly woke one morning with violent, frequent, head and shoulder jerking with eye blinking and rolling. We saw a neurologist who put him on medication that totally zoned him out to the point that he could not stay awake in school (but the tics stopped). Then we decided to get his tonsils out and started the antibiotics post op. We also stopped the tic medicine post op. It was then that we noticed the correlation between the antibiotics and no symptoms. He had no tics or OCD or anxiety symptoms while on the post op antibiotics, and then when they were stopped it all came back full force. So I called his pediatrician and told her and so we tried it back just to see what would happen and amazingly all the tics stopped again. That is when I started to research antibiotics and PANDAS. We went to a Infectious Disease here but she would not agree to leaving him on the liquid amoxicillin. To contraversial for her. So we took him off again, and again, all the symptoms came back full force. He started to tic again. Started talking out in class. Crying alot, Problems with homework. I figured this is crazy, so I had a consultation with his pediatrician and took in the studies that I had from NIMH. She agreed to write me the prescription for antibiotics short term till I could get down to Florida to see Dr. Murphy and get a "treatment plan recommendation" from her. We were on the waiting list for four months to get the appointment. Then I think the appointment was about 6 weeks out. The rest is on the post below.

 

I am not sure I understand the concept about the antibiotic injections. Seems like the antibiotic liquid would work much better. I would be very concerned that your son continues to re-grow strep. One thing Dr. Murphy suggested about my second son who continues to get strep, is that everyone in the house have a strep culture and everyone that he is in frequent contact with have a strep culture, including grandparents, aunts, uncles, cousins, etc. It is very detrimental (sp?) for a PANDAS patient to continue to have so much strep exposure. As far as having his tonsils removed, if you can not locate a specific strep source within the immediate family, then having the tonsils removed would be a good consideration. My son has done so well since having his tonsils and adnoids removed. One simple thing to remember is to always throw away his tooth brush after a couple of days on the antibiotics. Toothbrushes are the number one source of re-infection for strep. Since you are in Georgia, you are very close to the Shands Clinic, and it sounds like you could really use a good doctor with a solid knowledgebase. I would encourage you to make an appointment and stop the guessing game. This must be so hard for you. Hope that you can find some help for your son soon. Keep us updated.

 

Dedee

[kkver]

Welcome to this forums and sorry to feel about your son.

First How was he diagnosed about PANDAS. Was his o-aso and dnase titers counts high after strep infection ? those are the two things which someone should be looking for PANDAS along with +ve strep test and TIcs,ocd or Both. Second why was he put on shots , he's six and use amoxcililin or zithromax easily for antibiotic treatment.

 

About doctors Tanya murphy is in Florida at Shands clinic you can go there i can PM you there number if required . I have been in touch with them about my son as i am on west coast. Another doctor i know has joined in Kaiser Georgia from Seattle .

[trubiano]

Welcome to this forums and sorry to feel about your son.

First How was he diagnosed about PANDAS. Was his o-aso and dnase titers counts high after strep infection ? those are the two things which someone should be looking for PANDAS along with +ve strep test and TIcs,ocd or Both. Second why was he put on shots , he's six and use amoxcililin or zithromax easily for antibiotic treatment.

 

About doctors Tanya murphy is in Florida at Shands clinic you can go there i can PM you there number if required . I have been in touch with them about my son as i am on west coast. Another doctor i know has joined in Kaiser Georgia from Seattle .

 

 

His ASO in March when this all started was 297 and the DNASE was >1460. They have not tested again. How often should I have this tested? My Ped told me that the injection we are using Bicillian LA is a PCN that only targets the strep and won't hurt the good antibodies. He also gags everytime we have tried pills. We are practicing with swallowing M&M's, but he still is having a hard time. I am on a waiting list for Dr. Murphy. To be short about the diagnosis of PANDAS: He was first diagnosed with Sydenham's Chorea by his Ped. The Neurologist disagreed and said PANDAS. I just had my other son tested due to many Strep infections and his ASO was 174 and is DNASE was 960. They are having him see ID. I just wonder if I should start him on PCN also. He did have a neck and arm tic last August that the Ped said was just nerves. It went away after a couple of months and we didn't think anything of it until now. I just had them look back and he had positive strep culture 16 days before I took him in for the tic. Thank you for all the great support. I do not feel so alone anymore!

[lmcgill]

Hi. My daughter was diagnosed with PANDAS when she was 5 and after 10 months of recurrent strep throat and going through a lot of different antibiotics (Pen VK, Amoxicillin, Augmentin, Clindamycin) we took her to a pediatric ENT who took one look in her throat and could not believe how huge her tonsils were. When he removed her tonsils and adenoids he said they were so "cryptic" that the antibiotics were not getting to all of the strep hidden in the crypts, nor would it ever have gotten to it. Chronic tonsil infections and enlarged tonsils can lead to a condition called chronic cryptic tonsillitis. The tonsils contain many small pockets and infoldings called crypts. Initially, on a course of antibiotics her tics would disappear or at least dramatically decrease until she finished the antibiotic at which time the tics and OCD behaviors would return. She was completely symptom free and strep free for over a year. You may want to consider taking your child to a pediatric ENT for evaluation.

I am the one who posted about the ineffectiveness of penicillin on strep. Someone recently posted the link to the article about this. The evidence is out there about Cephalosporins and Azithromycin being the drug of choice for strep, unfortunately a lot of physicians are sticking with penicillins. There are many cephalosporins and also Azithromycin (Zithromax) that come in liquids. I wish you lots of luck! Hang in there!!

Colleen

How has your daughter been since the tonsils have been removed? Our son has very large tonsils, but has not had strep. We took him to the ENT specialist and he made us feel stupid for seeing if they should be removed. He is a little under weight and we thought the removal of tonsils might help him to gain more weight. His tics are under control, but if the tonsil removal helped out I would be interested to know.

Lenny