BUSTER>>>>

[myrose]

Hello Buster, I finally got my neuro to at least look at what I have to offer about titers. The nurse practioner asked me to email my information. A quick update: They will not even try antibiotics with my daughter because of the titer level only. I do know though that their first choice to treat with antibiotics is amoxicillin. I have heard this is not goot.

 

Anyhow my question to you is now that I FINALLY may have an ear to at least listen to me....Do you think it would be best to send them your post (the one about titers) to get them to look into this more??

 

Let me know before I send the email....this may be my only shot at this. I just want to make sure my daughter is treated properly.

Thanks in advance Buster!

[Buster]

Do you think it would be best to send them your post (the one about titers) to get them to look into this more? ...this may be my only shot at this.

 

Hi Myrose,

 

I think the main item would be what's the relationship you have with the folks you are sending the email to. If they think they've got your child's situation under control, then they're going to be really hesitant to change anything -- even antibiotics. So if you're not in the middle of an exacerbation, it's going to be really hard (in my opinion) to sway a doctor without at least a really great track history associating prior exacerbations with positive strep cultures. If they don't see such a relationship, they aren't going to act.

 

1. Are you seeing current exacerbations? If not, then even if it were PANDAS it is highly unlikely you'd find any evidence of strep if the last exacerbation was > 8 weeks ago. Depending on when was the last exacerbation, all residuals of strep can be gone. If you are in an exacerbation, was a throat culture done ?

 

2. Are you thinking of propholaxis antibiotics? This is going to be tough to get without some evidence that your child's symptoms are temporally linked with a streptococcal infection. We gratefully had a positive strep culture in the middle of a really bad exacerbation which allowed us to treat with antibiotics and see the improvement.

 

From your previous posts, it sounded like your child was doing well at the moment. Is there something that is motivating you to want to change medication? Is it mostly a concern about a followup exacerbation? I know none of us want to go through another round, but it's really tough to get propholaxis antibiotics without some evidence.

 

If you have a followup exacerbation, then I most certainly would recommend a throat culture. That should be enough evidence to get antibiotics. At that point you can debate which one and do all the followup. I know this is a horrible position -- waiting and worrying, but unless you have a great track history with the doctor and they have some evidence, they are really unlikely to put your child on propholaxis.

 

You are more than welcome to cut and paste what I posted into an email. I think all you will be doing is setting up the foundation for a followup conversation if you get another exacerbation.

 

 

Regards,

 

Buster

[EAMom]

Hi Myrose,

 

I think it would make sense to go get a current strep culture to make sure your dd is not Positive (do 72 hour if rapid is neg) at this time.

 

If your dd has PANDAS and is doing well on just the topamax (sp?) then IMO there are 2 possible scenarios:

1) topamax (sp?) is sucessfully masking her PANDAS OCD/tics...if you took her off tics/OCD would return (because smoldering PANDAS is still there)

2) topamax helped initially (or coincidentally) but meanwhile her PANDAS symptoms dissipated on it's own (perhaps b/c she doesn't currently have strep and the PANDAS "burned out")...if you took her off topamax in this situation, she would be fine (until she gets strep again)

 

If scenario #2 is the case... if your dd doesn't have have an active (current) strep/PANDAS episode I think pennicillin (or amoxicillin) would be reasonable for prophylaxis (to prevent a new strep infection and subsequent PANDAS episode)...since pennicillin works well to prevent strep for ARF and it worked well for prophylaxis in the Swedo/Snider pennicillin/Azithormycin NIMH study.

 

If your dd has a has a current positive culture (since she shouldn't really be positive so long w/other symptoms) then she is likely a strep carrier, strep is likely intracellular, and IMO Azithromycin (perhaps long term) is the way to go. She would probably also benefit from the immunomodulating/anti-inflammatory effects Azithromycin is likely to provide.

 

By the way...have you noticed any changes after your dd has her teeth cleaned at the dentist (or extractions?). If she's just on the topamax and she has current low grade strep in her throat, it's possible you might see a break through of OCD/tics/mood changes as strep gets released from her throat into her bloodstream.

 

You can copy and paste any of Buster's posts into an e-mail you send.

You could also cut and paste the link to the article re: amoxicillin failure in strep throat.

 

It does seem strange that these guys are basing so much (whether they'll give you antibiotics) on the titer level...acting like titers are a diagnositic test for PANDAS. From the NIMH webiste:

 

Q. Is there a test for PANDAS?

 

A. No. The diagnosis of PANDAS is a clinical diagnosis, which means that there are no lab tests that can diagnose PANDAS. Instead clinicians use 5 diagnostic criteria for the diagnosis of PANDAS (see below). At the present time the clinical features of the illness are the only means of determining whether or not a child might have PANDAS.

 

Q. What are the diagnostic criteria for PANDAS?

 

A. They are:

 

Presence of Obsessive-compulsive disorder and/or a tic disorder

Pediatric onset of symptoms (age 3 years to puberty)

Episodic course of symptom severity

Association with group A Beta-hemolytic streptococcal infection (a positive throat culture for strep. or history of Scarlet Fever.)

Association with neurological abnormalities (motoric hyperactivity, or adventitious movements, such as choreiform movements)

[myrose]

Buster and EAMOM....First, thanks for all the help and info! I can't tell you enough on what it really means to me.

 

My daughter is currently on Topamax 25mg daily. This takes away all of her symptoms so I am not sure what condition she would be in and what would come back if I took her off. I was okay with her being on this (being that we have no side effects) and our lilves were back to normal but as I have already stated...I was always curious on Pandas because of her symptoms and what I have read on these boards. What has started me back on this road for Pandas is because I read on here that if Pandas is left untreated it can cause irreversible damage. That scared me so I just want to make sure that we are treating her correctly. She has no symptoms that she used to have which were: Urge to pee everynight constantly, picking at her fingers, biting her lip, Ocd with washing the hands and everything having to be perfect in her drawings, over reacted to just about every situation, sensory issues with clothing, tics started with eye blinking, then there was abdominal ones, toe curling, shoulder and neck. The last one changed her life, it was the head BOB and body jerk. This WAS AWFUL to even look at and she cried constantly. These tics were constant everyday...no break. The head bob was even more severe when she had a fever one time. Also as stated her last positive strep was Feb 08. She will now no longer let then put the swab in her mouth! We tried to hold her down last month to do it but they could not be sure they got an accurate reading. IT WAS HORRIBLE, I FELT HORRIBLE!

I talked her into the blood again in May but again the titers were not elevated. They poked her in and out at least 4 or so more times so now we will have to hold her down for the blood as well. I HATE the thought of putting her through that!!!!!!!!!!!!

I wish this whole thing never came! UGH

I just emailed a copy of your (Buster) post about titers. Also I mentioned Dr. K from Chicago and that the steroid burst was somewhat helpful in identifying/diagnosing Pandas??? Hope that info was correct.

Bottom line here is that in order to tell what is going on with her...she needs to be taken off the topamax. I will wait and see how and what the neuro responds....and let you know.

 

OH....this all started as well after she had 9 immunations. About a week later I believe. Could have had a predispostion for tics and the shock to her immune brought them out?? Who knows....

 

She has never had any vocals though, we kept waiting but nothing. We were told of them all and what to look for as well.

She had some sniffing but this was due to a CONSTANT stuffed up nose usually only at night. She was treated with Nasonex but it did not help at all. I shot that OUT! Now mysteriously her stuffed nose disapeared with the topamax as well. I just do not understand it at this point!

Thanks again and have a nice night

[lss]

Buster,

 

New to the forum, and have noticed you have lots of info, which I too have found. Has your child had IVIG and what is your opinion on IVIG risk and possible side effects?

Linda

Do you think it would be best to send them your post (the one about titers) to get them to look into this more? ...this may be my only shot at this.

 

Hi Myrose,

 

I think the main item would be what's the relationship you have with the folks you are sending the email to. If they think they've got your child's situation under control, then they're going to be really hesitant to change anything -- even antibiotics. So if you're not in the middle of an exacerbation, it's going to be really hard (in my opinion) to sway a doctor without at least a really great track history associating prior exacerbations with positive strep cultures. If they don't see such a relationship, they aren't going to act.

 

1. Are you seeing current exacerbations? If not, then even if it were PANDAS it is highly unlikely you'd find any evidence of strep if the last exacerbation was > 8 weeks ago. Depending on when was the last exacerbation, all residuals of strep can be gone. If you are in an exacerbation, was a throat culture done ?

 

2. Are you thinking of propholaxis antibiotics? This is going to be tough to get without some evidence that your child's symptoms are temporally linked with a streptococcal infection. We gratefully had a positive strep culture in the middle of a really bad exacerbation which allowed us to treat with antibiotics and see the improvement.

 

From your previous posts, it sounded like your child was doing well at the moment. Is there something that is motivating you to want to change medication? Is it mostly a concern about a followup exacerbation? I know none of us want to go through another round, but it's really tough to get propholaxis antibiotics without some evidence.

 

If you have a followup exacerbation, then I most certainly would recommend a throat culture. That should be enough evidence to get antibiotics. At that point you can debate which one and do all the followup. I know this is a horrible position -- waiting and worrying, but unless you have a great track history with the doctor and they have some evidence, they are really unlikely to put your child on propholaxis.

 

You are more than welcome to cut and paste what I posted into an email. I think all you will be doing is setting up the foundation for a followup conversation if you get another exacerbation.

 

 

Regards,

 

Buster

[EAMom]

She has no symptoms that she used to have which were: Urge to pee everynight constantly, picking at her fingers, biting her lip, Ocd with washing the hands and everything having to be perfect in her drawings, over reacted to just about every situation, sensory issues with clothing, tics started with eye blinking, then there was abdominal ones, toe curling, shoulder and neck. The last one changed her life, it was the head BOB and body jerk. This WAS AWFUL to even look at and she cried constantly. These tics were constant everyday...no break. The head bob was even more severe when she had a fever one time. Also as stated her last positive strep was Feb 08. She will now no longer let then put the swab in her mouth! We tried to hold her down last month to do it but they could not be sure they got an accurate reading.

 

These symptoms sounds so PANDAS-like in that OCD was a fairly prominent feature, as well as sensory defensiveness (my dd had a huge increase in sensory defensiveness during her PANDAS episode). I think the urge to pee is a big clue as well. I just found this article from China. When they excluded kids with PANDAS, less than 2% of kids with tics had frequent urination.

http://www.cgmh.org.tw/cgmj/2811/281105.pdf

 

Vs. this study with children with PANDAS...urge to pee was present in 58% of the children (sometimes the only symptom).

 

Prospective identification and treatment of children with pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS).

Arch Pediatr Adolesc Med. 2002 Apr;156(4):356-61.

"BACKGROUND: The current diagnostic criteria for pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS) are pediatric onset, neuropsychiatric disorder (obsessive-compulsive disorder [OCD]) and/or tic disorder; abrupt onset and/or episodic course of symptoms; association with group A beta-hemolytic streptococcal (GABHS) infection; and association with neurological abnormalities (motoric hyperactivity or adventitious movements, including choreiform movements or tics). OBJECTIVE: To assess new-onset PANDAS cases in relation to acute GABHS tonsillopharyngitis. DESIGN: Prospective PANDAS case identification and follow-up. RESULTS: Over a 3-year period (1998-2000), we identified 12 school-aged children with new-onset PANDAS. Each patient had the abrupt appearance of severe OCD behaviors, accompanied by mild symptoms and signs of acute GABHS tonsillopharyngitis. Throat swabs tested positive for GABHS by rapid antigen detection and/or were culture positive. The GABHS serologic tests, when performed (n = 3), showed very high antideoxyribonuclease antibody titers. Mean age at presentation was 7 years (age range, 5-11 years). In children treated with antibiotics effective in eradicating GABHS infection at the sentinel episode, OCD symptoms promptly disappeared. Follow-up throat cultures negative for GABHS were obtained prospectively after the first PANDAS episode. Recurrence of OCD symptoms was seen in 6 patients; each recurrence was associated with evidence of acute GABHS infection and responded to antibiotic therapy, supporting the premise that these patients were not GABHS carriers. The OCD behaviors exhibited included hand washing and preoccupation with germs, but daytime urinary urgency and frequency without dysuria, fever, or incontinence were the most notable symptoms in our series (58% of patients). Symptoms disappeared at night, and urinalysis and urine cultures were negative. CONCLUSION: To our knowledge, this is the first prospective study to confirm that PANDAS is associated with acute GABHS tonsillopharyngitis and responds to appropriate antibiotic therapy at the sentinel episode."

 

I realize I haven't answered your original questions...but since I just found the Chinese Study I wanted to mention it. I'll post more later.

[Buster]

Has your child had IVIG and what is your opinion on IVIG risk and possible side effects?

Hi Linda,

 

Our dd has not had IVIG and we are currently holding on propholaxis antibiotics. Her symptoms subsided on azithromycin. Many others on this forum have had IVIG when their symptoms either did not resolve or got worse. It is our hope that IVIG won't be necessary.

 

regards,

 

Buster

[Buster]

Hi Myrose,

 

My daughter is currently on Topamax 25mg daily. This takes away all of her symptoms so I am not sure what condition she would be in and what would come back if I took her off.

 

What an awful experience you and your dd have been through. I absolutely understand your concern. We are in a similar holding situation. Right now my dd is stable (i.e., no symptoms) on azithromycin and Prozac (after a horrible feb-june). At this point, we are pretty sure any strep is now gone and the azithromycin is acting either as as a propholaxis dose (i.e., inhibiting recolonization/infection) or as an immunomodulator/anti-inflammatory. We don't quite know, but we are concerned about taking her off of it with strep going around the school. Having weathered such a storm it is really tough to change anything. We have decided to just stay with our current medications for a while, so the whole family has some time to heal. We're not sure what we will do longer term.

 

I was reading through your other posts and I didn't see whether your dd ever had a negative culture. I saw the positive culture in Feb and presumably the ASO titers were drawn 1-4 weeks later (i.e., March). Given the horrible experience your daughter had with blood draw, no wonder she doesn't want to repeat.

 

One option might be just a skin swab. Our daughter was positive in throat and perianal for GABHS. Perhaps the skin one would be less scary (although it may not show anything). Interestingly, I've just run across a couple papers indicating that skin GABHS infections don't generate ASO responses.

 

She had some sniffing but this was due to a CONSTANT stuffed up nose usually only at night.

 

I thought this fascinating. Our daughter too had significant stuffed up nose. It was so bad that she used to try to blow her nose and was getting a number of nose bleeds. I'd sure be interested to find out if others ran into this. We tried antihistamines (chlorotrimaton) and that seemed to have a good effect.

 

I don't know how to give any advice here except to commisserate. If I run across anything I'll certainly send it on.

 

Did your doctor indicate, by the way, why Topamax? For OCD, Topamax has been used in conjunction with SSRI's but I hadn't seen it used alone. Was it primarily for the tics?

 

Regards,

 

Buster

[colleenrn]

My two oldest children often had stuffy noses. In one of my children that was my clue he may have strep, when he was really stuffy and mouth breathing at night. It resolved after they had their tonsils and adenoids removed. In our case I think it was the large adenoids that caused the stuffiness and that is why it worsened whenever they had strep. I see it now in my 5 year old who we are treating with Zithromax even though his 72 hour culture came back negative. I will pay attention to him when he is sleeping to see if the Zith has helped the stuffiness, but in my kid's case I think it is the adenoid size causing it.

Colleen

[Worried_Dad]

My son, also, had a very stuffy nose when this all started and was diagnosed with a sinus infection that never cleared, despite long-term antibiotics (amoxil). We had another child in our neighborhood require emergency surgery because a runaway strep infection in his sinus was literally pushing out on his eyeball. His mom was told that - if the abscess had burst - it could have had a catastrophic health effect.

 

We've been told that staph and strep are getting far more virulent and antibiotic-resistant. Scares the heck out of us!

[myrose]

Buster, Colleenrn:

 

We had the xrays done to look for swollen ANYTHING in there. I was actually almost praying that it indeed was the abnoids causing it. This way I could have a reason to why it was happening and also fix it. They checked her for everything. We also tried everything.

She went to bed everynight with a box of tissues and tried SO HARD to keep blowing her nose. It was awful and the only thing that ended up even touching it was the afrin. We then became addicted to it!!!! She couldn't sleep if she could not breathe through her nose so this caused her to cry which of course made the nose MORE stuffed! I even tried elevating her pillow at night. Warm and cool humidifiers as well. She got up all night long complaining of it and thus was tired during the day and not such a pleasant mood either (lack of sleep) I am SO GLAD its gone!!!!!!!!!!! I still cannot understand why everything disappeared on this topamax. I have tried to research the ingredients but honestly I believe my brain also needs a rest! It doesn't seem to retain anything anymore. The reading and reading and READING throughout this ordeal!

 

Buster: When her head bob got so bad back in May, I called her neuro and said "I HAVE TO DO SOMETHING NOW"

The new neuro after reading som mild discharges in her EEG suggested Topamax. He felt it could have been seizure activity. We repeated the EEG with him and his conclusion was the same as the previous neuro in that the tics had nothing to do with the discharges and it was not of eptilic form (sure I spelled that wrong) In other words the head bobs were not related to any seizure activity although it appeared to look like that.

We decided at that point to keep her on the topamax even though we had the choice to take her off. He did say it would help with the tics and given the fact that they were gone...we kept her on and got back to a normal life. I later learned that topamax was also used for OCD. I did not want to add another med to this. It was recommeded to add tenex but I refused. She is doing so great on just the topamax and as everything started to disapear....I was staying where we were.

I have written down everything from your posts and also EAMoms as well. I am just waiting to hear back from the neuro after I sent him the info lastnight. I will let you know what his repsonse is.

Thank You so much for all the valuable info! I am armed now and ready to fight if thats what it takes.

 

I do find the stuffy nose thing interesting........guess my night will be spent googling!

[myrose]

Buster I forgot to mention about negative cultures.....As I stated after the swab in February, my daughter will not allow the rapid test done. We tried to get it in there last month the best we could and it was negative and the culture was neg. as well.

The problem though is that without knowing we got it in there correctly or where it exactly touched inside her mouth....we just can not be 100% positive that the readings were accurate.

I just purchased the home strep kit. I am thinking of maybe trying to get it when she is asleep on my own. I am sure it will wake her up and I will fail but at this point anything is worth a try. The kit comes with everything you need to test and gives you a negative or postive (rapid test) I thought it would be good as well if my husband and I were to use it. Just to see if someone here could be a carrier of some kind.

 

Thanks again Buster and I do hope you stay smooth sailing from here as well. Its nice to breathe again...isn't it?

[EAMom]

Regarding getting your dd to go for a throat culture. Our 5-year-old (non-pandas, strep carrier) hates them too. 2 things that might help a bit:

 

1) bribery! Webkinz, trip to the zoo, anything that she would like that doesn't break the bank.

2) last time we got throat cultures together (in august we both had sore throats after an airplane trip)...I went first. Helped things a bit since she wasn't the only one getting tortured. Also, a good way to make sure that you're not an assymptomatic carrier.

 

Also, it's interesting that the topamax alone helped your dd's ocd...since it seems it's usually used for ocd with an SSRI, not alone. Perhaps the strep was dissipating at that point, coincidentally? who knows? Maybe topamax alone is great for PANDAS ocd?

[myrose]

EAMOM...Thanks so much for the info you have thrown my way! Its a true Godsend to say the least!

I did the bribery thing with the blood....I felt so terrible after they had to poke her at least in and out four times that I took her to buy that talking Parrot!! It came out last year I think. Imagine my surprise when we got to Target and I realized the thing was almost $80.00!!!!!!!

I also tried everything and I mean everything including a trip to Disney (we live in Orlando) and when she did not respond to even that, I knew how much it truly got to her. I feel terrible about it and I just wish there was an easier way.

I am going to try and research Topamax and its ingredients this weekend sometime. She is on the sprinkle caps not the white tabs (I mention this because the ingredients are different) That is weird to me as well. It does treat OCD though and it does work for her tics as well. I wonder as you do if someone with Pandas has tried just the topamax with the same results. The low dose for her body weight even throws me more into the wonderland!

Thanks again! I will know my next step after I hear back from the neuro. I really wish they would get back soon. I would hate to play the waiting game for the next few weeks!

[EAMom]

Perhaps the stuffy nose is just strep hiding out in the sinuses?

 

Maybe these stuffy nose PANDAS kids just have a low grade strep sinus infection-->stuffy nose + PANDAS symptoms.

 

Strep doesn't necessarily have to be in the throat to cause PANDAS.