I have strep !

[melanie]

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

[boychildsmom]

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

 

 

I'm so sorry! Keep your chin up. I have strep, too. Just got tested Thurs and received penicillin from a minute clinic. My doc agreed to switch me to clindamycin, as my son (12) is currently being treated with clindamycin & rifampin for a strep infection we caught late. He's on a 15 day course, then prophylaxis. We're planning IVIG when school gets out. This time he got a vocal tic (most past tics were motor--not too intrusive). This one is LOUD. I try to keep it in perspective, but it's physically & psychologically exhausting. The good news is we were able to keep him strep/tic free for nearly two years prior. We got lax and took him off prophylactics. Bad idea. We made the mistake of relaxing. That only sounds grim. Seriously, we will keep him on prophylaxis until he's grown man--and gets his own scrip, if need be. Of course, strep hit him over springbreak vacation. He was by my side 24/7, yet I didn't act on the initial signs (low grade fever late day, irritability, not listening well, some vocal repetition, minor rash). Easter weekend the tic hit like a train. He was a mess, tic constantly, and frightened to return to school. I kept him home and took him to the ped. It took another week for an appt with his infectious disease doc. He's now on meds and labs due soon. So, we can stand down for now. I felt horribly not calling his doc at the very first sign. She could have phoned in a scrip to a pharmacy on vacation. His age makes it tough...responding to peers. According to his teachers, he does a stellar job controlling tics at school, but they break through. And, he's exhausted when I collect him--and immediately starts tic'ing like a fiend. I know he has the hardest job, but I have to remind myself to care for myself. I was shocked to have a sore throat. I assume he gave it to me--now I have to avoid returning the favor...sheesh. Take care of yourself--fluids, vitamin C, SLEEP. Be sure your on a strong enough antibiotic, so the strep doesn't linger and pinball back to him. We've been down that road. If your son's on prophylaxis, you might want to ask his doc to increase the dose--or place him on treatment level, since you've already tested positive. Be sure to replace toothbrushes after everyone has been on treatment for several days. I hope you get better soon!!!

[lismom]

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

 

 

I'm so sorry! Keep your chin up. I have strep, too. Just got tested Thurs and received penicillin from a minute clinic. My doc agreed to switch me to clindamycin, as my son (12) is currently being treated with clindamycin & rifampin for a strep infection we caught late. He's on a 15 day course, then prophylaxis. We're planning IVIG when school gets out. This time he got a vocal tic (most past tics were motor--not too intrusive). This one is LOUD. I try to keep it in perspective, but it's physically & psychologically exhausting. The good news is we were able to keep him strep/tic free for nearly two years prior. We got lax and took him off prophylactics. Bad idea. We made the mistake of relaxing. That only sounds grim. Seriously, we will keep him on prophylaxis until he's grown man--and gets his own scrip, if need be. Of course, strep hit him over springbreak vacation. He was by my side 24/7, yet I didn't act on the initial signs (low grade fever late day, irritability, not listening well, some vocal repetition, minor rash). Easter weekend the tic hit like a train. He was a mess, tic constantly, and frightened to return to school. I kept him home and took him to the ped. It took another week for an appt with his infectious disease doc. He's now on meds and labs due soon. So, we can stand down for now. I felt horribly not calling his doc at the very first sign. She could have phoned in a scrip to a pharmacy on vacation. His age makes it tough...responding to peers. According to his teachers, he does a stellar job controlling tics at school, but they break through. And, he's exhausted when I collect him--and immediately starts tic'ing like a fiend. I know he has the hardest job, but I have to remind myself to care for myself. I was shocked to have a sore throat. I assume he gave it to me--now I have to avoid returning the favor...sheesh. Take care of yourself--fluids, vitamin C, SLEEP. Be sure your on a strong enough antibiotic, so the strep doesn't linger and pinball back to him. We've been down that road. If your son's on prophylaxis, you might want to ask his doc to increase the dose--or place him on treatment level, since you've already tested positive. Be sure to replace toothbrushes after everyone has been on treatment for several days. I hope you get better soon!!!

 

 

Thank you for sharing your story. I was wondering if you could elaborate on what prophylactics you used and did you find when strep started to clear did it take a little time for the tics to calm down or go away. We were not successful on clindamycin and are on zithromax for my 12 year old. I caught his late and three weeks on full strength and we are still struggling. Any details would be so appreciated. Kathy

[Suzan]

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

 

Oh I am so sorry. This is so stressful! did the neuro really say things were never going to get better? That is a horrible thing to say.

 

I hope you feel better soon and that your ds does too and does not get strep.

 

susan

[boychildsmom]

Thank you for sharing your story. I was wondering if you could elaborate on what prophylactics you used and did you find when strep started to clear did it take a little time for the tics to calm down or go away. We were not successful on clindamycin and are on zithromax for my 12 year old. I caught his late and three weeks on full strength and we are still struggling. Any details would be so appreciated. Kathy

 

 

 

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

[dcmom]

boychildsmom- Thank you for sharing. It sounds like you and some great docs have a pretty good handle on your son's pandas. We are just at the beginning of this. What part of the country do you live in (in case anyone needs doc referrals)?

[melanie]

Thank you for sharing your story. I was wondering if you could elaborate on what prophylactics you used and did you find when strep started to clear did it take a little time for the tics to calm down or go away. We were not successful on clindamycin and are on zithromax for my 12 year old. I caught his late and three weeks on full strength and we are still struggling. Any details would be so appreciated. Kathy

 

 

 

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

[T_Mom]

Boychildsmom--Thank you for posting your experience. This is fascinating and I only wish every parent dealing with tics/OCD issues could access your experience and information for reflection...

 

I can only wonder how many could be helped if they saw the right doctors who are knowledgeable enough to know what to try.

 

Sincere thanks,

T.Mom

[boychildsmom]

I'm in Indianapolis. If anyone needs doc names, please email.

 

His ped & ID docs aren't PANDAS experts. Ped made initial diagnosis. ID doc confirmed diagnosis, but still classifies his condition as a "rheumatic fever variant". I like that he's always had a treatment plan for my son. He uses the same meds and therapy as six years ago, so it must be working well for other patients, too. They were the first docs to really look at my son. I mean literally look--linger, eye contact, engage one on one. They still do. And, most importantly, they took action.

 

Before finding them, my son saw over a dozen docs the year after initial onset. Most docs hardly glanced at him, just long enough to confirm tics and diagnose transient tic disorder/prelim tourettes. Some docs never requested a history. Most saw no relevance in his overnight onset of tics/OCD or other symptoms. None requested labs. I had to insist on tests ruling out lead or other toxin poisoning. One of our "peds du jour" held to the theory my son tic'd for my attention. I was a SAHM. She prepped the cardiologist, who sheepishly repeated the diagnosis with my son's seal bark echoing from the next room, where he was chatting up the nurses. Another bright spark ped spent more time asking about my stress than his tics. I think she had in mind munchausen by proxy. Another informed me tics were a normal childhood phase. Another suggested readying an IEP and special ed services to begin preparing for his future education. Meanwhile, my six year old son was sitting in his exam room reading Harry Potter. The doc hadn't even taken his temp. But, as he said, kids like my son tend to get worse. No small wonder. Our worst experience was amoxy queen doc, who would have continued prescribing amoxy til my son was a vegetable. It was a scary time. There's humor only in retrospect.

 

Though uncertain about being able to find help, I remained adamant getting to the bottom of his problem before the tics became permanently disabling. Time was my enemy that year. Nine times out of 10, the first appt was our last. Some docs rock. Some rot. I would never trust any doctor who shies away from blood tests (pre & post treatment & baseline), or avoids eye contact with your child, or takes a wait & see approach, or can't give a clear rationale for choosing a specific antibiotic treatment or proph. Finding the right doc is too important.

 

Given the dearth of shoddy docs, I try to keep a back-up doc (doc-in-the-pocket willing to prescribe the right antibiotics and IVIG) at all times. NIMH was our back-up during initial treatment. I don't know if they still offer assessments & diagnoses. Recently, I emailed Dr. K in Chicago. He responded promptly and is willing to accept my son for evaluation and treatment, if ever required. I don't have all the details of his treatment protocol. It appears similar to what's worked for my son in past.

 

Quick update on son's condition: 4th day C&R treatment for strep we missed last month. He woke virtually tic-free (single simple vocal tic every few minutes; two days ago he had multiple complex tics every few seconds two days ago). Unless it's the calm before the storm, he's responding faster at age 12 than during prior bouts. His last bout was at 10-1/2. With puberty approaching, I wasn't sure what to expect this time. If I understand correctly, the more mature immune system can be an asset or detriment, depending on what's controlling the rutter. We plan to keep him on prophs through college (and beyond, if he permits Mom to hover...lol). I have to speak with his doc when labs return and will ask more on this topic. At this rate of improvement, he won't need IVIG. I'm still cautiously optimistic, but that'd be awesome. Maybe I'll replace the roof instead.

 

Sorry for droning on. I constantly searched ideas six years ago. Message boards were a lifeline. I was a lurker, too overwhelmed to write. Other parents provided hope and clues. I vowed to return as a poster if I ever found solutions. As my son got progressively better, I forgot. LOL His recent strep bout was a gentle reminder.

 

Happy Mother's Day to All!!!

 

Boychildsmom

[melanie]

I'm in Indianapolis. If anyone needs doc names, please email.

 

His ped & ID docs aren't PANDAS experts. Ped made initial diagnosis. ID doc confirmed diagnosis, but still classifies his condition as a "rheumatic fever variant". I like that he's always had a treatment plan for my son. He uses the same meds and therapy as six years ago, so it must be working well for other patients, too. They were the first docs to really look at my son. I mean literally look--linger, eye contact, engage one on one. They still do. And, most importantly, they took action.

 

Before finding them, my son saw over a dozen docs the year after initial onset. Most docs hardly glanced at him, just long enough to confirm tics and diagnose transient tic disorder/prelim tourettes. Some docs never requested a history. Most saw no relevance in his overnight onset of tics/OCD or other symptoms. None requested labs. I had to insist on tests ruling out lead or other toxin poisoning. One of our "peds du jour" held to the theory my son tic'd for my attention. I was a SAHM. She prepped the cardiologist, who sheepishly repeated the diagnosis with my son's seal bark echoing from the next room, where he was chatting up the nurses. Another bright spark ped spent more time asking about my stress than his tics. I think she had in mind munchausen by proxy. Another informed me tics were a normal childhood phase. Another suggested readying an IEP and special ed services to begin preparing for his future education. Meanwhile, my six year old son was sitting in his exam room reading Harry Potter. The doc hadn't even taken his temp. But, as he said, kids like my son tend to get worse. No small wonder. Our worst experience was amoxy queen doc, who would have continued prescribing amoxy til my son was a vegetable. It was a scary time. There's humor only in retrospect.

 

Though uncertain about being able to find help, I remained adamant getting to the bottom of his problem before the tics became permanently disabling. Time was my enemy that year. Nine times out of 10, the first appt was our last. Some docs rock. Some rot. I would never trust any doctor who shies away from blood tests (pre & post treatment & baseline), or avoids eye contact with your child, or takes a wait & see approach, or can't give a clear rationale for choosing a specific antibiotic treatment or proph. Finding the right doc is too important.

 

Given the dearth of shoddy docs, I try to keep a back-up doc (doc-in-the-pocket willing to prescribe the right antibiotics and IVIG) at all times. NIMH was our back-up during initial treatment. I don't know if they still offer assessments & diagnoses. Recently, I emailed Dr. K in Chicago. He responded promptly and is willing to accept my son for evaluation and treatment, if ever required. I don't have all the details of his treatment protocol. It appears similar to what's worked for my son in past.

 

Quick update on son's condition: 4th day C&R treatment for strep we missed last month. He woke virtually tic-free (single simple vocal tic every few minutes; two days ago he had multiple complex tics every few seconds two days ago). Unless it's the calm before the storm, he's responding faster at age 12 than during prior bouts. His last bout was at 10-1/2. With puberty approaching, I wasn't sure what to expect this time. If I understand correctly, the more mature immune system can be an asset or detriment, depending on what's controlling the rutter. We plan to keep him on prophs through college (and beyond, if he permits Mom to hover...lol). I have to speak with his doc when labs return and will ask more on this topic. At this rate of improvement, he won't need IVIG. I'm still cautiously optimistic, but that'd be awesome. Maybe I'll replace the roof instead.

 

Sorry for droning on. I constantly searched ideas six years ago. Message boards were a lifeline. I was a lurker, too overwhelmed to write. Other parents provided hope and clues. I vowed to return as a poster if I ever found solutions. As my son got progressively better, I forgot. LOL His recent strep bout was a gentle reminder.

 

Happy Mother's Day to All!!!

 

Boychildsmom

 

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

 

Melanie

[boychildsmom]

Boychildsmom--Thank you for posting your experience. This is fascinating and I only wish every parent dealing with tics/OCD issues could access your experience and information for reflection...

 

I can only wonder how many could be helped if they saw the right doctors who are knowledgeable enough to know what to try.

 

Sincere thanks,

T.Mom

 

 

It has been fascinating learning. I don't know if our experience represents a broad spectrum of kids or just my kid. I'd love to know how many kids are waiting. Answers don't appear to be forthcoming from the medical community. They are too busy refuting NIMH claims. To my knowledge, there's no useful research underway, except by independent renegade docs (WTG!!!!). There's no financial benefit to providers or insurance companies in reclassifying tics/OCD or any neuropsychiatric disorder. Docs would no longer have that safety net of passing the buck. Insurance companies would lose psych caps on spending for treatment. The only people who would benefit from better treatment are no good dirty rotten terrific kids, who deserve better.

[pmoreno]

When I read all your posts my heart just goes out to you. What a struggle and how frightening. My dd had strep three times since she first started her PANDAS journey 1 1/2 years ago, but I've found since then that she's not a true PANDAS because her flares don't usually come with the strep, but rather with viruses, particularly herpes simplex1. So she's really more PITANDS. However, I wanted to offer some words of encouragement. Since I have started her (and all my other kids) on daily zinc and give her 5,000 mg. of viramin C powder (1tsp. mixed in oj) at the first sign of a sniffle or cough, I have not any strep infections yet this season. (none since last June). As a matter of fact, no cold or flu has lasted more than 24 hours of mild symptoms. She was on antibiotics for about 4 months after IVIG (from Oct. - Jan), which did cause some yeast issues. Since I started s.boulardii and goat milk kefir, her yeasty behaviors have gone away and it is well documented that kefir is really helpful in immune support, so that might be something for all to try whether on proph antibiotics or not.I've read that it works wonders in restoring the body to a proper balance and protecting it against many forms of disease. Pat