Kayanne

TMom Yes, my son did/does have ocd as one of the issues. He was in a private school, prior to being home schooled. We are doing the K12 International program now and have hired a private teacher to come in. He also has a real virtual teacher thru the K12 program. He is on antibiotics, 25 mg per day of azith and has been even before IVIG. Linda Is that a typo? 25 mg doesn't seem right...is it 250mg?

Hi and welcome to the fourm...I am sorry that you are here, but it is the best place for info. I have been impressed over and over by the folks who post here...and as DCmom said, it really does feel like family. The parents on this forum are DIRECTLY responsibile for my daughter's recovery because they got me in touch with Dr. Latimer. Seven kids...that's AWESOME...I have four, and I get a lot..."Wow, your hands are full!" But I always say, "Better full than empty!" I can totally sympathize with the overwhelming idea of tackling strep in a house...this spring at one point all six of us were on antibiotics, and 3 out of 4 of my kids were on antibiotics multiple times...the ped really believed that we were just ping-ponging it....I don't think so because we were so careful...I just think we had a bad strain, and I know of one other child in our neighborhood who took antibiotics three times also to kick her strep. If you have to tell a fib (they have fevers, or their throats hurt) to the ped, to get him to do a rapid strep test on all of the kids, then I would do it. I have also considered purchasing an at-home rapid strep test...w/a $15 co-pay each visit, it pays for itself. I am just concerned that I may get a false negative...I do think those tests are only as accurate as the sample taken. It sounds like you are off to an excellent start with the doctors you have already found...I am curious what type of practice it is (eg...family, naturopathic, pediatricain, DAN)? I wanted to add my two cents about oil of oregano...I have been hesitant to try it it (I was thinking of it's anti-viral properties) because it's proponents make the same types of claims about olive leaf extract....anti-bacterial, anti-fungal, anti-viral...etc, etc... Olive leaf extract can negate the benefits of a penicillian based antibiotic (penicillian is derived from a fungus)...so I'm worried that oil of oregano can have the same effect...but I can't find anything on the internet that states that oil of oregano can interfere with antibiotics, but I HAVE read that olive leaf extract can negate some antibiotics...they seem so similar that I don't want to take the chance. My DD6 currently takes pen vk 200 2x/day for prophylaxis...so I don't want to risk it. Has a dr told you it was okay for oil of oregano? That takes my line of thinking even further....would taking any anti-fungal (diflucan, nystatin) while on a penicillian based antibiotic lessen/negate the antibiotic? Does anyone know? Georgetown did do a study on oil of oregano...maybe Dr. Latimer is familiar with the supplement.

Our daughter's CBT told my husband that when the new diagnostic manual comes out, they are pulling aspergers from the autism spectrum, and making it separate...I wasn't there so this is second hand info. I bet the school districts would benefit from that...if it isn't considered autistic, then would they be required to provide the social therapies...asperbergers is easy to dismiss/minimize because usually the child's performance in school isn't suffering...

All of my children seem to be developing normally without any autism flags...I have a D8, D6 (PANDAS), S4, and S2. They all walked early, talked early, and seem to do very well in school. I have a 15 yr old nephew with PDD, so our family has been aware of autism for about 10 years. When our DD6's PANDAS started this spring she seemed ADD at first...but it just didn't explain how it came out of the blue. Her PANDAS seemed to progress and by the time we took her to Dr. Latimer, she was so withdrawn, non-verbal, held her hands in fists, and startled at the softest voice...she LOOKED autistic. Even her kindergarden teacher agreed that she was very afraid that she was slipping into autism. However, my Husband's Kyioshi (Karate Teacher) works with autistic children, and she knew my daughter from coming into the Dojo for lessons, and she assured us that autism just doesn't happen out of blue at 6 yrs old...it happens earlier. I am really thankful that her episode happened when it did...at the end of a very successful kindergarden year...well her last quarter was not because they couldn't evaluate her at all because she wouldn't speak, she could still read, but they didn't know if there was any comprehension because she wouldn't/couldn't verbalize anything. She used to write pages and pages of stories along with illustrations...all that stopped She now tells me that she had a hard time speaking or thought that she wasn't allowed to because she felt like something was in her throat...a silence tic maybe?...or a compulsion? She was very, very emotional...toward the end it was more ragey...she refused to eat...I was holding her down, pinching her cheeks, and forcing her to eat. So, what do you think drs. would say about her if she was 15 mos or 2ys old, and all her verbal skills stopped, she stopped socializing, and she had a real distant look about her? I think autism would have been explored for her. Hindsight being 20/20 around 3 yrs old, I do think she either reacted to strep in the house or had a reaction to a vaccine, but then it was more very rigid routines, and insisting that her bed covers had just the right wrinkle, sooo fussy about clothes, some crying fits too. But I do think each episode is different even with the same child....who knows maybe your son's autism is more PANDAS symptoms...you are lucky to have an accessible DAN dr to help you sort it all out though!

Ya know, it really has only been about 20-25 years that the drs have gotten a lot more careful about antibiotics, so there was about 1 1/2 generations where antibiotics were given aggressivly for sore throats...RF has practically disappeared...so I bet there are a lot of people with a genetic weakness (maybe an immune deficiency?) who don't know it because the previous generation's strep was treated more aggressively...sombody please tell me that I'm off the wall in my thinking...sometimes I feel like I just draw too broad of conclusions about things...I am convinced that the squimishness of drs. to prescribe antibiotics has contributed to a lot of rising disorders. [/ you know, you may have something there, Kayanne, because I remember when I was a kid, we used to get Erithromycin all the time whenever we had sore throats, and I recall our pharmacist used to give my dad refills all the time even without a script, so I know we took alot of abx. Also, I know that I was on antibiotics for years on and off for acne as a teen ager, that was the big thing then, I forget the name, oh yea, Tetracycline. I wonder if that screwed up my own immunity and passed in on to my child? ... maybe now I am overthinking, . I'm not thinking it screwed up your immunity...I'm thinking if you had a genetic predisposition to strep-related illnesses such as RF or PANDAS, taking antibiotics protected you. RF is thought to be a result of 3 things: 1--untreated/not properly treated strep, 2--genetic predisposition, 3--the correct strain of strep.

15mg/5ml = 3mg/1ml right now you are at 15mg 2x/day next week it will be 12mg 2x/day When Dr. L wrote our script, it was for 5mg/1ml---a little more concentrated than what you are currently giving--I would double check with the pharmacy that they got the concentration correct, and if you are taking prednisone or prednisonlone...although a quick google can tell you that. What is your daughter's age and weight? My dd6 was given 10mg 2x/day for the first week, 5mg 2X/day for the second week, and 5mg/day for weeks 3 & 4--she was about 42lbs at the time.

I had only just found this forum, and within two weeks, we saw Dr. Latimer. My husband and I were anxious to start treatment, and Dr. Latimer told us that we should postpone the prednisone if we wanted to do the test...we chose not to do it at the time. We are doing it now because on Sept. 9, during our phone consult Dr. Latimer still felt that the numbers now would be helpful...but she said, "wait one more month". I was suprised, and I asked her if the prednisone was still having an effect (her last dose was July 18th) and she said it could be...that was a WOW moment...ya know prednisone is not a drug to be taken lightly...but I would still try it again.

My PANDAS daughter also has a healthy history...this spring was only the second time she had to take antibiotics--the first time she was a newborn in the NICU while they cultured the fluid from her lungs...negative so they stopped the antibiotic. She was a full-term baby...she just had rapid breathing that was from an air pocket in her lungs...which resolved itself and didn't need to be aspirated. I do think this has a genetic component because my uncle and grandmother on my mother's side, both had RF. But I also think you need the correct strep strain...they believe that is the case for RF too. My husband and many members of his family have anxiety, panic, and OCD tendendancies too. I just think if you combine all of that....and of course it is going to be somewhat of a case of wrong place at the wrong time because of the strep strain. Ya know, it really has only been about 20-25 years that the drs have gotten a lot more careful about antibiotics, so there was about 1 1/2 generations where antibiotics were given aggressivly for sore throats...RF has practically disappeared...so I bet there are a lot of people with a genetic weakness (maybe an immune deficiency?) who don't know it because the previous generation's strep was treated more aggressively...sombody please tell me that I'm off the wall in my thinking...sometimes I feel like I just draw too broad of conclusions about things...I am convinced that the squimishness of drs. to prescribe antibiotics has contributed to a lot of rising disorders.

Thanks...that's good to know. This morning they filled both tubes of blood. I know they didn't need to, but she was being such a trooper so I figured it was better to have more blood than less. I am beyond curious to see where she falls because essentially she is not in an episode, but I expect the numbers to still be in the PANDAS range based on the email that Diana sent out. If she has no other episodes within the year, I will do the test again. If she does flare up, then I will have the kit so I can do the draw prior to starting prednisone...maybe then I will add in my son's.

Sorry, I was going by memory, and I posted the wrong dosages that were prescribed for my daughter. She was about 42-44lbs in June Dr. Latimer's perscription was: Day 1--20mg Week 1--10mg 2X/day Week 2--5mg 2X/day Weeks 3 & 4--5mg daily Weeks 5 & 6--5mg daily (this was the extended time)

I am so worried about this too...I have 3 out of 4 kids who had multiple (or the same) strep infections in the spring...only one DD6 had PANDAS symptoms, but a part of me is so concerned that there is a wide spectrum of behaviors for this, and when my DD8 was unusually emotional in the spring...I actually gave her one dose of motrin for two days, and I swear her crying improved!---She also was complaining about foot pain for months after, and still frequently says that her stomach hurts her....but I also was not religious about probiotics when we were all on the antibiotics in the spring... My DS4 1/2 has been a horrible eater recently, and more emotional and belligerent too...and he wets the bed frequently early in the morning...but I can't get him to do the romberg stance long enough...also in one of Swedo's talks, I think she said that prior to 6/7 it is kind of normal to have piano fingers. DH thinks I'm obsessed about PANDAS....he's right, but I really don't care...I want to help others on this forum the way I was and continue to be helped. I just Cunninghamed my PANDAS daughter this morning...she was FABULOUS...about the blood flow thru the tube she said, "ooh...it looks like a rollercoaster!" I asked Kathy A. to send me a spare kit...I told my DH that it was in case of another PANDAS episode, but a part of me is thinking of getting my son tested....but I would need DH to be on board...I'm trying to subtley plant seeds that he may have PANDAS I keep thinking of the talk where Swedo says that with RF, there were families where all/most of the siblings got it, and right next door...nobody...so I'm scared that my other kids are not in the clear yet.

Could this possibly be a reaction to the Augmentin? My dd6 was given amox, and broke out in a rash about 5 days into it, but her ped said it was more of a "side effects rash" than an allergic reaction...and I was told to finish the medication. My oldest daughter also broke out in an itchy rash on Amox after about 3 days...that time they told us it was an allergic reaction. Augmentin is amoxicillin & clavulanate potassium. Is there a rash at all, or just itching? I think just itching can be yeast...but I'm no expert. ~Karen

OTSMITH, I just thought of something while writing another post, could you be mistaking 5mg for 5mls? Because if you are giving 5mls, then depending on the concentration of the medication...you could be giving more mg. I have experience with 5mg/5ml concentration and a 5mg/ml concentration---at this concentration 5mls would really be 25mg--which seems right. Yes, my dd6 was only 42 lbs when she was in an episode in June, but she had lost weight becasue she was refusing to eat, and at school, she couldn't focus at all to even eat her lunch...I felt like I was punched in the stomach when I unpacked her lunchbox two weeks ago, and there was one bite taken out of her sandwich...turns out she didn't like it...Whew...I think we all have those "OH NO" moments. ~Karen

We didn't see a lot of improvement until the end of week 4 with our dd6's steroid treatment. At the end the improvements were so dramatic--she went from 70-75% improved to 97-98% improved in a matter of three days!--So hang in there, if you are not seeing any real adverse reactions from the prednisone, then I would continue until the end. If you have 5mg/5ml then you are only giving your dd 5mg 2X/day--which seems very low for a first week dose. If you have 5mg/ml, then you are giving 25mg 2X/day--which seems to be in line with Dr. Latimer's prescription for our dd. There are several different concentrations of liquid prednisone/prednisolone. Look on the pharmacy label or the side of the bottle. Our prescription from Dr. Latimer called for 5mg/ml of prednisone. After the third pharmacy, we were given 5mg/5ml of prednisolone. We were aware of the concentration change, so we just adjusted the mls accordingly. However, we didn't know that we were given prednisolone instead of prednisone. I have asked four doctors, including Dr. Latimer, and they all said that they are equally effective, and my google searches have come up with the same information, but my gut is telling me that the concentrated liquid Prednisone Intensol 5mg/ml that we used as a refill (because the pharmacy ordered the correct prescription for us)---at the very end with only three doses left, made a huge difference--that is why we requested to extend the prednisone. What is Dr. K's dosing for the 5 day steroid burst? If his is significantly higher?...then that might be what is happening...are you using the exact same medication as before? ~Karen

We also did six weeks of prednisone...5mg daily was the taper dose for week four--it was supposed to be our last week, but we saw excellent results right at the very end, and Dr. L extented the 5mg daily (as per our request) for two more weeks--we wanted to be sure we were really hitting the brain inflammation hard. Our daughter is 6ys old and was 42lbs at the time--she started at 20mg 2X/day for week one; 10mg 2X/day for week two; 5mg 2X/day for week three; 5mg/day for week three; and that dose was extended for two more weeks. Her side effects were also minimal (some raging behavior the first week or two, but she was already fighting us a lot prior to the pred, and a couple of pimples)...and she was brought back to us completely. We are currently not seeing any PANDAS behaviors at all. She had a difficult time making decisions...it was like obsessive thoughts were "shutting her down". She seemed ADD at first, and right before the steroid she was more autistic like--no socializing, competely withdrew into herself, startled easily. I'm just wondering why your dose is so low? Is it because you are concerned about side effects...or is you child very small? What "gut issues" are you concerned about with prednisone? I know it can upset the stomach, but I didn't think it was a permanent thing...maybe I'm wrong. It is definately not a drug to be administered without real consideration, but so are all the treatments for PANDAS. Like DCmom, I too, would try it again If she has another episode. I think it is a first line treatment that can be tried on new cases/mild cases prior to jumping right into IVIG or Plasmapheresis/PEX. Good luck! ~Karen

I'm sorry your having such a hard time. Is there any possiblility that your pediatrican would prescribe some prednisone? It may give you some relief right now. I read your other posts, and I saw that you went to Dr. K on Monday. Did he schedule you for IVIG around Halloween? Did he mention his use of the 5 day steroid burst to help determine if IVIG will be effective? He usually prescribes a 5 day "steriod burst" to see if a PANDAS child will improve. This helps him to determine if it is in fact PANDAS. Because PANDAS is an autoimmune issue, then prednisone should suppress the immune system to lessen or stop the PANDAS behaviors. Dr. Latimer (DC area) has prescribed prednisone for a month for cases that are mild/moderate. She usees it as a theraputic tool to help suppress the immune system, and to address the brain inflammation in the Basal Ganglia. For my dd6, it worked very well. I took your quote from another thread: If this current episode is only his second, then he may benefit from a course of prednisone. However, if you are scheduled for IVIG, then a month long course is probably not called for. Once your son makes it through this crisis, do everything in your power to keep him on a prophylactic dose of antibiotics...this is like Rhuematic fever, it just effects the brain instead of the heart and joints. The PROVEN treatment protocol for RF is long term preventative antibiotics. Also, get everyone in your house tested for strep ASAP. As far as IVIG being a permanat fix for PANDAS, I personally don't think that it is. I don't believe that there is a cure, just very good ways to manage it---but i hope that my opinion is changed soon because it seems a lot of new ground is being covered with the immunology end of this disorder. Many parents are recieving multiple IVIG treatments because they have gotten a diagnosis of an immune deficiency, which is recognized by the insurance companies. Some of their doctors are telling them that when the treatments are completed, their immunue systems will be normal, and therefore the problem will be fixed...I am hoping this is true. An immunological workup will show if there is an immune deficiency.

If your doctor was referring to SSRI's, keep in mind that they take 6-8 weeks before they fully kick in. How long does your doctor expect to be reviewing your case, and then trying to get your child treated? I'm not trying to sound snarky...it just doesn't seem practical to put a child on SSRI's while they are on the cusp of treatment for PANDAS. It is impossible to say how much of her behavior is PANDAS and how much is actual OCD until you are sure she is no longer in an epidsode, and has returned to as close to her baseline as possible. We took our daughter to a pediatric psychatrist after we were told to by an Infectious Disease Specialist...fortunatly, the psych. firmly believed in PANDAS. She felt that trying to evaluate my dd while in PANDAS episode was useless. She told us to call her only if we felt that there was some behaviors that might need treatment AFTER she received treatment for the PANDAS. Considering our family history, I am eternally grateful that her ped. was at least willing to mention to us about the connection between strep and OCD, because I know that I would have agreed to put her on the meds if it was suggested... I am so happy that we didn't go down the road of SSRI's because her full recovery cannot be attributed to anything other than prednisone, time to heal or antibiotics Ours was a clear cut case, without any other treatments to "muddy the waters" of a PANDAS diagnosis Do I think my daughter has some OCD tendancies?...yes...so does my husband and almost all of his family...but the need for medication has been minimal when you consider the large number (nine siblings--plus a lot of extended), so I am grateful that it is not a bridge that we needed to cross--and hopefully never I want to add one more thing about SSRI's. While adjusting to taking them, increasing or decreasing the dosages, there are many side effects, and getting the dose right is a real art. I saw over 5 years how my DH dealt with taking them, and I was extremely reluctant to put my child's developing brain on them. Good luck, I'm really glad that you found a doctor to look at your case...I'm praying that all of our kids get the necessary treatments.

She was on 100 mg of azith daily from June 6th thru Sept. 10th. She took prednisone from June 6th thru July 18. On Sept. 11th we switched to 200mg of pen vk twice daily...she is still on it. July21...negative rapid and subsequent negative culture...I suspected it was just allergies because her throat was "itchy" being more consistent with her allergy medication helped that. No behavior changes Oct 2...My older daughter had a bad cold, and PANDAS daughter had a milder cold...they were both negative on the rapid. We think we may have noticed more emotional lability, and a slight loss of appetite, but if your not feeling good, anyone would behave that way...so no...we cannot really say that we have seen any PANDAS behaviors with this cold either. When she was in her PANDAS episode, her emotional lability was long bouts of crying, without being able to tell us what was wrong. So if she gets emotional now, I'm okay with it as long as she is able to verbalize exactly why she is upset...and that has been the case since she stopped the pred. I should add that off and on, I was getting complaints from both of my daugher's that their throats were hurting them, I stopped giving them nasonex, and the soreness cleared up. The wierd thing is that in our house, when a cold goes around, my PANDAS daughter always seemed to tolerate it well, or not get it as severe. I'm really hoping that we don't get any flu this year or if we do, it is not too bad. I used to be so confident that my kids were healthy, so I always passed on the flu shots...now I'm not so sure. I don't think we will be doing an immunological workup either.

In our case Dr. Latimer prescribed the month long course of prednisone as a treatment to bring her back to her baseline...it was used to suppress the immune response and to address the inflammation in the Basal Ganglia. Dr K. uses a 5 day burst only as a diagnostic to determine if a PANDAS child will have a good result with IVIG. One thing that she kept stressing to us about IVIG or Plasmapheresis is, "your daughter is not there yet." This was her first recognizable episode.

By the end of the month of steroids, I was so weepy. My daughter still couldn't get out an organized thought, still couldn't answer yes or no...and then BAM...overnight results with only three doses left. She went from 70% to 98% in three days after that...that is when Dr. L allowed us to continue for two more weeks at 5mg daily. She was essentially 100% by the end...and a few weeks later, we were certain that we were seeing no PANDAS behaviors.....this was her first recognizable episode, so she may have had great results because of that. Good luck Karen

Keep in mind that it also takes some time for the offending autoantibodies to subside...even after the infection is cleared. It is the antibodies causing the problem, not the infection directly. Antibiotics are not going to give "overnight" results....that being said, how do you really know the infection has cleared, if it is in an inaccessable part of the body? or what if there is such a thing a "cronic strep" that is never fully cleared? (it seems to me, in these cases you are needing to look into an immune deficiency) The only way to know is by observation of symptoms. . I personally feel that if you think there is a strep infection, then you should hit it hard with the largest allowable dose, for at least 10 days, and then follow up with a full strength until you see the behaviors subside. In the spring, my daughter took: ---5 days of OMNICEF ---10 days of AMOX ---10 days of AUGMENTIN w/RIFAMPIN on days 7-10 ---10 days of Clindamycin (300 mg/3times a day) That final round of Clindamycin cleared the strep for her...she was only 42 lbs. 900 mg is the high end of dosage for adults Not adaquately treating the infection, just causes the autoantibodies to continue being made and contiue causing the misfiring/inflammation in the Basal Ganglia. I didn't fully understand (I still don't) much about PANDAS, when my dd6 started with all of her behavior issues, and of course hindsight is 20/20, and I feel that her ped. got it right in the end. I didn't quite realize how aggressive they really were being, but I am grateful. If you are still seeing some issues after being on Augmentin for so long, then yes, I would switch antibiotics. My ped told me that Clindamycin is not routinely prescribed for children because the liquid is NASTY.--and it was...dd had horrible crying fits for two days while we forced her to take it...my Husband went to a pharmacy to ask about flavoring or something...they gave us capsules, which we carefully opened and added to a spoon full of chocloate pudding. There is not a lot of mention of Clindamycin on this forum...so I thought that I would bring it up again, it may be the antibiotic that helps your son. I personally felt that clearing the strep was top priority, and that I would deal with any yeast issues later. Good Luck, Karen

I agree with EAMom, my husband took zoloft, and you need to be very slow and conservative...It wouldn't hurt to put in a call to the doctor for specific instructions on weaning.

http://www.foxnews.com/story/0,2933,558043,00.html Here is the Fox News story on it...the gist that I get here is that they were only studying OCD and TS to see if there is a relationship to strep

In an accompanying editorial, Donald L. Gilbert, MD, MS, of Cincinnati Children's Hospital Medical Center, and Roger Kurlan, MD, of the University of Rochester Medical Center, wrote that despite the study's limitations the findings suggest that PANDAS is probably not a common condition. "There may be much more to discover about effects of infections and the immune system on neuropsychiatric symptoms in children," they wrote. "However, further insights into PANDAS will probably not emerge from either epidemiologic studies or clinic-based longitudinal studies as long as we are limited by our current biologic markers." Please forgive my ignorance, but what does Drs. Gilbert/Kurlan mean by "biologic markers"? Once again it seems that there really were no PANDAS kids in this study.

Suzan, thanks for posting that website...I can't wait to delve into it! As far as fevers are concerned...I've always been told that they are part of your own body's immune response--the higher temp makes fighting the infection easier. So as long as my child is tolerating the fever, I personally don't give fever reducers...I have 4 children, and I have only seen my kids fevers go above 103 once. That being said, I don't make them suffer--if they truly are not doing well with the fever, then I do give tylenol or motrin. I hope everyone gets better soon. My 8 yr old is home today too. She has had a cold (Friday the rapid strep was negative), no fever, aches or chills though--just sore throat, sneezing & coughing...but now we are in the "lingering cough" stage of her cold, and she didn't sleep well last night...the only thing that seems to help that is the humidifer at night. My PANDAS dd6, also has had a bit of a mild cold, but she seems to get over this stuff quicker than her older sister--we have seen a little behavior ramp up, but it is so mild that it is really hard to say if it is PANDAS at all...after all when your sick, you can be whiny, more emotional, and not want to eat....so who knows?