Pandas episodes and there frequency

[kkver]

Hi

I am trying to find out what is the frequency of pandas with your kids and how long they go through without any meds. Mine is having 3rd episode since last march and i have used zithromax in past for 10 days before and then tics go away with in 2 months. During the time zithromax is in the body they vanish but after that mild one comes back and totaly go away in 2 months max. Guess time for 3rd time for 10 day course but not sure so keeping my finger crossed.

[Lacy]

Hi

I am trying to find out what is the frequency of pandas with your kids and how long they go through without any meds. Mine is having 3rd episode since last march and i have used zithromax in past for 10 days before and then tics go away with in 2 months. During the time zithromax is in the body they vanish but after that mild one comes back and totaly go away in 2 months max. Guess time for 3rd time for 10 day course but not sure so keeping my finger crossed.

 

In the beginning, DD was having episodes regularly. She'd be prescribed two weeks of antibiotics and the symptoms would go away, and then come back - sometimes even worse.

 

DD's infectious disease specialist prescribed her long-term antibiotics (Cephlexan sp?) that began from Sept. 2007 and ended in May 2008. For five months we had our 'normal' happy-go-lucky DD back. Towards month 3 we stopped worrying about a relapse (dumb us). At the end of month five (around the end of Sept 2008), DD started slipping back into having tough days. Then after three weeks of increasingly negative behavior, she got sick. She was orally tested for strep - it came back negative (which isn't surprising - they usually did in the past then blood tests would show otherwise). She was out of school for a couple days trying to get over the flu-like symptoms. When she went back in, I got a phone call from the asst. principal that she had a 'grand mal meltdown' (as we've come to call them), and he wanted to suspend her for two days (we reduced her sentencing to two days of in-school suspension). This asst. principal is new and is a complete idiot. So to get him back on track we've reopened the Child Studies meetings at school (first one is scheduled for next week) and we've demanded that the asst principal attend. Grrrr

 

Tomorrow DD has an appt with her ID specialist. I imagine he'll want to do another blood test. Thank goodness for L-M-X cream to help numb the area. DD refuses to have her tests done without the theatrics unless I bring her "magic cream". It breaks my heart... she's been subjected to at least 5 blood tests... I've sort of lost count. She's been stuck more than a pin cushion, and I hate that we may be restarting that. I'm going to ask her ID Specialist about IVIG therapy and see what he thinks.

 

Anyways... that's my two cents for the moment.

[EAMom]

Our dd's 1st diagnosed PANDAS (when she was 7.5 years old) episode lasted 5 mo. (1st 2 mo. we didn't know about PANDAS), triggered anorexia nervosa (including 1 week in hospital for malnutriiton, acute food refusal), severe ocd, psychotic behavior, emotional lability, suicidal statements, depression...once we discovered Azithromycin (4th antibiotic we tried, the only one that really helped her) she was much better within 10 days. Anyway, we are on Azithromycin for 1 year now...and then we will decide what to do. At the very least, we will switch to pen. There is no way we will take her off antibioitcs. If she has a relapse on Azith. we will consider IVIG.

 

I believe she may have had milder PANDAS episodes when younger. For example, when she was in preschool she suddenly developed a daytime urinary frequency problem and a day or 2 later a high fever. Urinalysis, urine cultures were neg. No throat culture was done, no antibiotics. This improved after a couple of weeks although for years she still had issues of wanting to use the bathroom muliple times just before going to sleep. Funny, now that she's on the Azithromycin she doesn't do that anymore!

 

Interestingly, she had never (that I recall) been on antibiotics before last March. That was her 1st throat culture as well. She doesn't show "normal" strep signs (bad sore throat)...only a fever. Up until PANDAS, she was a very healthy kid, no ear infections (unlike her sister!), no allergies (except to fabric softener), she does wear glasses (had lazy eye as pre-schooler), never had a reaction to vaccines (that I know of)....

[michele]

Our first episode was at thirteen months old 2-13-03 and it lasted for about ten weeks. He had twitches, blinking and jerking and crying spells. Then he had the second one following episode was with the next illness 4-03 and had returned with all the same behaviors. It lasted another two months. Then Nov. of 04 after a virus the same symptoms return and last eight weeks. Nov. 06 He starts obsessing over things and having the seperation problems and urination issues after strep. I start to notice fine moor delays.Then He has five year shots and explodes in symptoms within days. It is the worse episode yet Jan. 07 This time he is hyper and emotional, urinating constantly , doing OCD movements, and finger and toe tics. It lasts for a few months. Then 5-07 again symptoms explode after he is sick and he is exposed to strep. Now the tics are worse and he is doing verbal tics also and fears things. Finally 5-07 they put him on prophylaxis antibiotics Pen VK and he improves. Symptoms return 8-07 after strep throat is in the house again. He is difficult to reason with, hyper, urination returns, finger cracking, toe cracking, I put him on supplements after DAN! testing. I add fish oils and Nystatin. Dec. 07 after tonsilitis he is worse again takes three weeks of omnicef and is better. Jan 07 we return to Pen VK and he is worse almost right away. Manic, tics, obsessing, quirks, Feb 07 we return to omnicef prophylaxis. He is cracking, sensory issues, verbal tics, obsessing, emotional, poor attention at school. We try Abilify plus omnicef in March and it works for five months. He has gone from 2 to 5 mg. of the Abilify. The behaviors and tics are back again after a recent illness and exposure to strep. We see the neurologist tomorrow again. It seems as if he builds a resistance to the drugs. The cycle just keeps repeating and it seems there is no end in sight. Everytime he is sick or around strep it all returns and he gets worse. He now has hyptonia, dyspraxia, visual motor delays, sensory issues, ADHD, tourettes, OCD, along with PANDAS. The emotional issues are the worst part for us. How do you deal with these difficult behaviors?

Hi

I am trying to find out what is the frequency of pandas with your kids and how long they go through without any meds. Mine is having 3rd episode since last march and i have used zithromax in past for 10 days before and then tics go away with in 2 months. During the time zithromax is in the body they vanish but after that mild one comes back and totaly go away in 2 months max. Guess time for 3rd time for 10 day course but not sure so keeping my finger crossed.

[EAMom]

Michele,

 

have you tried Azithromycin? Maybe your son's strep is now intracellular, which cephalosporins (eg Omnicef) can't get. Cephalosporins (Cefuroxime) didn't help our dd.

It does seem that after repeated episodes, some of these kids become less responsive to antibioitcs. Also, the episodes get worse.

 

Azithromycin is also immune-modulating. I'm not sure if that is what helped dd or the fact that it gets intracellular strep. Also, strep carrier younger sister was cleared on Azithromycin. Augmentin didn't clear her.

[heveritt1]

Hi, I have not been on this forum in 6 months or so. We were in the "clean" stages> we have been dealing with PANDAS 2 or 3 years now. We have neurologist, thearpist, naturopath, you name it. Lately he has been fine so I decided to take him off his preventive dose of Amox. During that 3 weeks I got sick with another sinus infection(I am cronic) and after a dose of antibotica and steriod I was no better they did a culture. Sure enough, I had Strep in my sinus's! I immediatly came home and put him back on his antibotics, but 3 weeks later he came up with a cough, etc. I took him in and she wanted to do a throat culture. I assured her that he never had a positive throat culture, but if we did a blood test one of his titers would be elevated. his tic was also back.. and bad. His culture was positive! First ever, and along with it was the headaches, hyper, negitave out of control behavior and the eye tic (with facial moves). I saw in your message that your daughters sister was a carrier, how did you find this out? I have had my throat cultured before and it was negitave. Any suggestions??

My ds just finished a round of omnisef and nothing changed (it just got worse), he still missed 3 days of school in a week. The weekend PA gave us 5 days of Zith, but I think we need more. Back when I visited the forum alot, zith was not the most popular med, but now it seems to be.

 

 

Michele,

 

have you tried Azithromycin? Maybe your son's strep is now intracellular, which cephalosporins (eg Omnicef) can't get. Cephalosporins (Cefuroxime) didn't help our dd.

It does seem that after repeated episodes, some of these kids become less responsive to antibioitcs. Also, the episodes get worse.

 

Azithromycin is also immune-modulating. I'm not sure if that is what helped dd or the fact that it gets intracellular strep. Also, strep carrier younger sister was cleared on Azithromycin. Augmentin didn't clear her.

[EAMom]

When we 1st learned of PANDAS March 2008, our older (7.5yr) dd was in the hosp. (food refusal, malnutrition, anorexia nervosa, ocd) and we requested the strep culture (POSITIVE- rare growth on 72 hour culture, also POSITIVE culture skin/perianal). I decided it made sense to have the rest of the family checked. It turned out our 5-year-old dd was POSITIVE on the rapid (no symptoms whatsoever).

 

PANDAS dd did have a probable strep infection late Jan 2008 (3 day fever, lots of kids in her class out sick at the time, at least some with strep I realize later) and this is when her behavior changed (tantrums, anxiety, food restriction, some tics, weird behavior). Both kids were placed on augmentin in March after these positive cultures which didn't result in remission of symptoms (although dd's mood improved)....eventually cleared younger dd's strep carrier state with 5 days of Azithromycin (end of April) and "remission" of older dd's ocd/mood/anorexia nervosa on Azithromycin after starting it in June (is still on 250mg/day). Azithromycin was the only antibiotic that "fixed" dd. (We had an intial mood improvement on Augmentin, got worse again on Amoxicillin and then a cephalosporin.)

 

Anyway, the summer and sept were great. PANDAs dd is still on 250mg Azithromycin/day. Then in oct. 5-year-old dd (who I thought didn't have PANDAS, but now I'm not so sure) started to be more grouchy, moody, angry (but nothing as insane as older dd's symptoms). Older (now 8) dd started to have the return of mild PANDAS symptoms (some tics, occ. tantrums, mild hand/fine motor tremors, nothing close to what we went through in the spring, but noticeable). Also, younger dd got a couple of strep notices in class. So, I decided to bring younger dd in for a throat culture (no symptoms, dr. commented that her throat looked normal, tonsils possibly a bit big) and it came up POSITIVE with heavy growth of GABHS (we just did the culture, no rapid.)

 

So, we think PANDAS dd was actually reacting to younger dd's strep even though she was on prophylactic abs. Both girls are calmer now that younger dd had a 5 days course of Azithromycin. I'll get younger dd recultured in a couple of weeks to make sure she's clear...until strep goes through her class again! ughh

 

If strep tends to your sinuses...I would think that would be a hard place to culture? If you have chronic sinus infections would a longer term course of Azith. help you? I would think that you could serve a a source of re-infecton, exposure to your ds if you are still positive.

 

In early June, when PANDAS dd was really bad, Azithromycin took 3-5 days to help dd's mood, 10 days to correct OCD/ anorexia nervosa, a little lingering "edginess" for about a month. 98% better after 1 mo on Azithromycin, 100% better after 2 mo. ...so yes, I think you need more than 5 days.

[michele]

I have not found a Dr. willing to prescribe azith yet. I guess it will be my next mission. I will make an appointment with a new immunologist. What article did you bring to convince them to put on long term azith? We have done omnicef for eight months and maybe it has lost its effectiveness. If only there was an article siting azith as the best treatment. Dr.'s don't want to hear about posts I have read online. They want proof from research. Isn't anyone writing articles on PANDAS anymore?

 

 

Michele,

 

have you tried Azithromycin? Maybe your son's strep is now intracellular, which cephalosporins (eg Omnicef) can't get. Cephalosporins (Cefuroxime) didn't help our dd.

It does seem that after repeated episodes, some of these kids become less responsive to antibioitcs. Also, the episodes get worse.

 

Azithromycin is also immune-modulating. I'm not sure if that is what helped dd or the fact that it gets intracellular strep. Also, strep carrier younger sister was cleared on Azithromycin. Augmentin didn't clear her.

[EAMom]

Hi Michele,

here is a paper by Dr. Ed Kaplan (World Health Orginization strep expert):

 

http://www.journals.uchicago.edu/doi/pdf/10.1086/508773

 

Basicially, it says that Macrolides (eg Azithromycin) were most effective in erradicating strep when it is intracellular (in epithelial cells). Cephalsporins and Clindamycin were better than Pen. for this, but not as good as Azithromycin.

 

We also knew that Azithromycin had cleared our younger dd of her carrier state (Augmentin didn't).

It just made sense to try our PANDAS dd on Azith. as she was starting to do worse on Amoxicillin and then a Cephalosporin.

[heveritt1]

Thanks for the response. I changed doctors last year after it was evident that our current ped was a bit tired of us and really did not know what to do next. He actually suggested long term antibotics, but at the time I was not interested and thought that was crazy. I did end up at a different peditrician who actually treats her own son for PANDAS. She made sure his titers were high before prescribing long term( since he never had a positive throat culture). I am going to try and get in with her this week to see if she will change the zith from 5 days to 15 or 20.

As for my strep issue, I have had sinus surgary so he can get way into my sinus's for a culture. they have me on a new treatment right now, it is a sinus antibotic inhaler. I inhale cipro "steam" for 6 minutes or so. It is supossed to fumagate my sinus's to get rid of the bacteria that regular antibotics cannot. I am not sure if is working so good as I seem to be getting a cough and thoat thing again. I might actually just get my throat cultured again as a precation. Thanks for all of the info. Hopeing to see things slow down in the next few days. It was really bad today.

[kim]

heveritt1

 

I inhale cipro "steam" for 6 minutes or so.

 

I just wanted to make sure that you're aware of the potential for tendon problems assoc. with cipro. It now has a black box warning regarding it.

 

I have taken cipro for UTI and had no problem. It was prescribed for my oldest son for a staph infection. The Ped had given us Bactrum, then called and said the lab recommended cipro after the culture. There was a note of "what ever," in Peds voice (I got the impression that he didn't really feel cipro was necessary). I read about cipro's side effects which listed seizures as one, among others that I didn't feel were great for a child with a neuro issue. I decided we would stick with the Bactrum after speaking with a pharmacist who said he didn't think there was any significant danger of MRSA complications by using bac, instead of cipro. He did say not to throw away the filled cipro script as it's a very expensive drug. I guess I'm getting a little off topic here, but I do feel with possible autoimmune problem in the family (connective tissue problems in some cases?) probably a good idea to be aware of this.

 

http://latimesblogs.latimes.com/booster_sh...-joins-the.html

[heveritt1]

Interesting article. The inhaler is not supossed to actually cary any of the antibotic to my blood stream, so I don't get the usual side effects. Still good to know.

I wish both of us could just get off of antibotics. It is crazy. I am calling the doc about me again today, I have the drainage, etc coming back. I might ask for the throat culture just to be safe.

 

heveritt1

 

I inhale cipro "steam" for 6 minutes or so.

 

I just wanted to make sure that you're aware of the potential for tendon problems assoc. with cipro. It now has a black box warning regarding it.

 

I have taken cipro for UTI and had no problem. It was prescribed for my oldest son for a staph infection. The Ped had given us Bactrum, then called and said the lab recommended cipro after the culture. There was a note of "what ever," in Peds voice (I got the impression that he didn't really feel cipro was necessary). I read about cipro's side effects which listed seizures as one, among others that I didn't feel were great for a child with a neuro issue. I decided we would stick with the Bactrum after speaking with a pharmacist who said he didn't think there was any significant danger of MRSA complications by using bac, instead of cipro. He did say not to throw away the filled cipro script as it's a very expensive drug. I guess I'm getting a little off topic here, but I do feel with possible autoimmune problem in the family (connective tissue problems in some cases?) probably a good idea to be aware of this.

 

http://latimesblogs.latimes.com/booster_sh...-joins-the.html