melanie

Hi He couldnt sleep on the lexapro so he went off what a nightmare

Hi Deanna Well hes on day 4 of 25mg topamax and I dont see anything good hes been ok today not as bad as yesterdday. I think his pandas is back so im not sure what is what (what else is new).Im going to start antibiotics again to see what happens.Im glad things are going well for you guys it gives alot of people hope .Let me know how things progress I will do the same Happy Mothers Day. Melanie

Thanks I live in Monmouth County NJ If you know any drs that are worth seeing Please foward I would really appreciate it Melanie

Although I'm unfamiliar with your son's history, it sounds like the strep infection might still be present. I think strep infection needs to be gone before dropping down to a proph level dose of anything--or the med can make it worse. Do you have recent labs showing acute infection is clear? Has he ever had baseline ASO and ADB titers? That's helpful determining active infection. If need be, go to a walk-in lab and order your own ASO and ADB. You can find walk-ins doing an online search. In our experience, some docs (a.k.a. all docs we saw before finding the right docs to treat my son's resistant strep) are resistant to parent requests for stronger antibiotics. Lab results help build a case for stronger treatment of strep infection. If the strep infection isn't gone or is borderline (recent, may still lurk), I'd ask about combining meds. My son usually can't kick strep on a single med after infected more than a few weeks. Strep seems to bypass his tonsils and beeline to his brain. If he's prescribed an ineffective med, I might see on/off again improvement or change, but overall symptom exacerbation or stagnation, with tic flare-ups later, as the strep infection flares back up. My son's ped prescribes high level doses of penicillin for early onset strep throat infection. She uses max allowable penicillin dose for his weight, not standard ped dose for strep throat. Penicillin works if we catch strep at onset. Swab+ means penicillin will work. He's only swab+ for a day or two, with no sore throat, so it's a small window we don't always catch. If the swab is neg in the presence of tic/OCD symptoms, we assume the strep has gone systemic, in which case the pen treatment may not work. On penicillin his tics increase the first day or two, presumably as antibodies ramp up. Then the tic slowly diminishes over course of treatment and ensuing weeks. We go to the ID doc for a more aggressive approach if the strep has become entrenched--or the penicillin fails. He's all about eradicating strep. Although not a PANDAS expert, he's successfully treated tourettes kids who were never properly treated for strep. When our son has systemic strep, he prescribes a 10-day course of clindamycin & rifampin for strep treatment. I don't know if peds are allowed to prescribe the combo. Our ped won't, even though she approves hid ID doc doing so. Ped strep may be an off label use for the combo. There are studies on the combo for other conditions. You might want to ask your son's doc. We've only had to use C&R sparingly. So far, it's been able to eliminate strep every time...knock wood. My son has a confirmed strep link to tics/OCD. If your son's tics are also related to strep, it's unlikely any antibiotic treatment will completely eliminate tics in 10 days. It takes several months before the body replaces antibodies. My son shows tic improvement on treatment level (10-day) penicillin or clindamycin & rifampin. His mild tics usually dissipate within a month from start of effective treatment, providing he's not re-infected. His severe tics take longer (2-3 mos). His first bout of tics were severe. We opted for IVIG, which was successful. Only his dad and I could discern occasional (not daily) remnants of old tics. IVIG is costly and not always covered by insurance, but something to consider. My son received proph bicillin injections every 21 days for 1-1/2 years. They started injections the day he had IVIG. Injections were very painful, but were effective. He rarely had tics, except slight the day after injections (antibodies peak) or as he neared the 21 day mark (newer research suggests injections every 18 days). At 8-1/2 years old, we switched to oral penicillin prophylaxis. Dose varied. Technically it was 250 mg 2x daily (am/pm). However, we usually gave 250 mg or 500 mg in a.m. then skipped the evening dose, since he was in bed early with no strep exposure risk. We increased to 1000+ mg if we suspected strep break through and could not get to his doc immediately. He was on oral pen proph until 10-1/2 years old. While on prophs, he averaged one break through anually requiring high dose penicillin or clindamycin & rifampin. It's hard to say how many total break throughs, since we increased his proph pen to knock out suspected break throughs. Overall, pen was an effective proph, but required close observation and higher dose depending on symptoms. I wouldn't recommend varied dosing w/o doc input. If the dose is not high enough or long enough to eradicate infection, strep roars back. His doc suggested upping the proph pen the first time we couldn't race in for suspected strep. We monitored weight to keep dose in safe range and took him to the doc if tic persisted. He was doing so well on pen proph, we decided to stop in 4th grade...hoping he was outgrowing strep problems (wishful thinking!). While he was unprotected, we were able to catch strep early. We got complacent and missed the signs last month. This past Thurs he started clindamycin & rifampin. I can already tell it's working. Thurs evening and all day Friday, his tics were off the charts. He reported less control over them, which scared him. This morning the tics were down, elevated a bit after receiving morning dose, then slowly diminishing during the day. Several times I noticed he only had a single tic sound, but it was still frequent (every 1-3 seconds). At dinner the tic was noticeably diminished. On a hunch, I ran him an epsom bath and gave him melatonin. He got out of the tub tic free. At bedtime I lingered and only heard two tics. He animatedly told me about a homework assignment, which is unheard of when he has tics/OCD. I'm cautiously optimistic strep will be knocked out. We'll know if tics continue to improve. He'll get final blood test when C&R is complete, in preparation for IVIG (or no IVIG, if tics stop). I've found the longer he tics before receiving the correct treatment to eradicate strep, the longer he tics after completing the course of medication. We know he's on the right treatment because the tic begin diminishing while still on the med. If his tics exacerbate 4-5 days into antibiotic treatment, we know it's the wrong med. If we persist on that treatment, he gets worse or stagnates and doesn't get better til we get him on the right treatment. We never allow amoxy for any infection. Repeated amoxy was devastating during his first bout. I asked his ID doc about zith. He says zith has broader reach, but isn't the most effective strep killer. Conversely, pen has limited reach, but kills strep 100% on contact. As a proph, he says we need an efficient killer. As a treatment, we need reach and efficacy...thus, the C&R. Makes sense, although I don't think he'd researched zith (from look on face). I'm inclined to stick with what's worked for us. When this current bout resolves, he'll be back on daily 500mg pen proph. None of this is intended as medical advice. My son's treatment plan works well for him. Maybe some of our experience can offer clues to others. I hope you find the right treatment plan for your son soon. Meanwhile, run him an Epsom Salt bath. It's sheer bliss when something so simple can make it all better for awhile! Boychildsmom Ok where is you ID md? I live in NJ but will go to the ends of the earth for help!!!! Melanie Danny was on 250mg azith and was doing ok (2 months) dr wants him to go to 250wkly I spoke with hm on friday said he would go to 500 the problem is he tests neg for strep but has had 2 ear infections not good enough for the neuro or psy to say pandas .The DO dr is his Pandas dr he perscribes the azith hes cool with t >The Melanie

How are things going? Were a mess here not sure why but hey why not(sad) hope things are well Im not giving up Melanie

I need to hear more about this dans having a hard time iM not sure if if from comming off the lexapro

I just got back from the dr and I have strep!! Dannys has been horrible the past week rages again and cursing all over again .I think this is never going to end ,Maybe the neurologist is right this is never going to get better. Were sad vey sad

Hi were on day 3 of 25mg topamax and I dont see anything good at all (of course) He is off the lexapro and hes ticccing like crazy danny also has CAPD & Pandas so I think alot of his tourettes is relates to that when should i see something anyone know? He hasnt gotten a reaction to it which is good I want to see some good stuff PLease does anyone have processing issues when danny hears you speak quick or stammer he curses and blows on his hand new tic

DR took him off daily antib azith wanted him on 250 1x per week I saw him getting nasty so I put him back on it daily 250 1x per day I had some left over I have a call into him to call me back Yes I find it in teresting aboutt the bed wetting hes on buspar and tenex also we are starting topamax but thewetting started before the topamax so its not that His psyc dosent go for the pandas thing shell just tell me its an asperger thing Melanie

hi Ive been traviling down this pandas tourette road for a long time and quite frankly Im tired .I would just like someone to take over and tell me what to do .Ive tried everyhing been to several mds and still new symptoms my 15yr old son is wetting his bed @!!This is so sad for him hes upset about it and I dont blame him.Im going to get a mattress protector but Why is this happining???If i call the dr what is he going to say does he drink to much before bed..Is there a md who really knows his /her stuff Ive been to Columbia Presp/Morristown Mem/DAN md /UMDNJ is dr K really that good what will he do the others havent.Dont forget danny is 15 so IVIG may be out THIS STINKS!!!!!!!!!!! Melanie

Im so glad to hear that hes doing well on the topamax We started it last night 25 mg hes 130 lbs I want this to work sooo bad I pray so hard for some relief Does your son have anyother dx is he a PANDAS kid? We did allergy testing yesterday Im hoping I can get some answers keep in touch Ill do the same Melanie

Hi i picked up the topamax script 25mg Im going to start tonight with danny please pray that this helps him were sooo stressed here I feel so bad for him he is struggling My concers are about his processing speed he has capd which I think contributes to his tics Verbal swearingg) etc I know topamax has an impact on congnition any one have problems? wish us luck Melanie

how do u know all of this I cant possibly figure this out!!! Ps danny is going for allergy testing at the DO today any suggestions? Melanie

Hi I got the script for topamax dr wants me to wait until FRi so I can keep a close eye out for rash ???please pray for us

I would like to hear more about the braces and the tics I noticed that too is there some evidence of the two?

Look into PITSTAND on the webped site interesting it just gives you another distraction in this misary Anyway how did the topamax help was it great good or ok for symptyoms of tourettes Im desperatly looking for a med that will help Thanks Melanie

Oh I understand I tried the NaC it didnt take long for behavior to pop up and his face was flushed I thouht the taurine was good for vocal tics and the lcartine too ??? your kidding me how do you know whats good and whats bad Im not sure the vitamine route is ever going to work maybe I should just give up Nothing works NOTHING!!!

I dont think the DO is going to put danny back on zith no strep but all symptoms are back!!!I may need a new Dr in NJ any advice? He woke up last night in a sweat came into my bed (hes 15) the boy has nEVER slept with us since he was an infant he wet his bed 2 days ago this hasnt happened in years This isnt good HELP

Hes been on the tenex for 2 months I dont know if thats it but nothing realy makes to much sense to me anyway I just startted the zithro again and if things get bettrt than I know thats what it was he had a rage episode today I havent seen that in over a month I need to get a pandas dr that doesnt need a positive strep could it be somethinng like pandas swelling of brain?

Chemar. what if the strep is always neg when hes on antibiotic hes much better how do i convience the doc to keep him on it

oh yea Lcarnatine is it better in liquid or tablets ?

ok i read about being under methylated with tourettes but my son is also ASD the article said that ts patients respond to cesium? what is that ?how do i get it and does it help it also says undr meth people have low serotonin levels and that ts patients are usually UM I thought that TS was to much Dopimine This is so confusing Lexapro i think made him tic worse so if its low seritonin than why would this get worse someone help

Dan turned 15 today things were getting better and It looks as if it is starting to turn ugly again..Hes olnly on zith 1x per week now and I think the tics are comming back full forse remember he has verbal tics and the middle finger motor tic the fun stuff The DO dr felt that he needede to come to a 1x per week dosage i agreed now im kicking myself Im going to call him in the AM i gave him a zithro pill tonight also to add he was on lexapro 5mg and the Neuro seems to think that could be increasing tics he is also on buspar ,and tenex were taking him off the lexapro Im hoping that its causing the problems I dont understand why I cant get a handle on this I try everything hes on a GFCF diet takes taurine mag taur Insotiol.Vit D it C and i JUST DONT KNOW WHERE TO TURN i THINK I have done evrything and why cant I hel him who knows what to do ? Im confused where can I turn is there anyone that can help please !!!

Check the pandas thread all will be explained