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I have been reading this forum for many months and have gleaned SO much helpful information, I decided it was time to post my personal questions since so many of you have so much knowledge and insight. I actually remember coming to this website many years ago when Chemar and Ronna were a few of the only members. I rediscovered this much more active site in October.

 

My son is 14. I suspect an undiagnosed strep infection at age 3, when I returned home from giving birth to my youngest son to find my oldest with a fever and sore throat. Took him to urgent care a few days later where they ran a negative rapid strep test and sent him home with a "viral" diagnosis. He had had some signs of extreme tantrums prior to this at age 2, but things went from bad to worse after this illness. I was told it was adjustment to the new baby. About 3-4 months later his first tic appeared - eye blinking. Fast forward 3 years - tantrums/rages had gotten so bad we turned to psychiatric/psychological help. He was diagnosed with GAD with OCD features. We started him on Paxil after many months of fretting about meds, because things seemed to be getting worse. The day after we started him on a VERY low dose of Paxil, he exhibited handwashing, strange intrusive thoughts and uncontrollable anxiety - could not get on the bus to go to kindergarted (after 6 months of going no problem). We thought it was the meds, but 3 days later he was sick, and diagnosed with strep. Over the next 9 months, he had 6 positive strep tests. We discover his high pitched scream was actually a vocal tic. He also had a nose scrunching and chin licking tic. During this time, our psychiatrist diagnosed PANDAS, after attending a lecture by Susan Swedo. Our pediatrician got on board, tested the family for strep carriage (all negative), treated it with Clyndamycin (which seemed to finally eradicate it) and he had his tonsils and adenoids removed at age 8. Strep titers went from 800 to 160 after treatment. He also received excellent ERP at this time. We saw a great recovery in 2nd grade, and thought it was behind us.

 

3rd grade saw the OCD return in form of manic list making. We put him on Prozac and it abated. His handwriting had vastly improved, his reading had recovered to above grade level. 4th grade we saw some return of meltdowns but not frequent. Fast forward to spring of 5th grade. Anxiety increasing mostly surrounding school. Throwing horrible fits about homework and seemingly couldn't understand novels he tried to read anymore. Meltdowns/rages were coming almost daily. Brother caught strep so I brought my oldest (physically symptom free) in for a culture as well - bingo! He was positive. Treated him with 20 days of Omnicef and life improved. Several months later he received 3 vaccines at once - and passed out cold in the docs' office 5 minutes later. A week later he developed a stomach bug (fever, diarrhea) the first day of 6th grade. His downward spiral started there. Constant GI pain for months (the only thing they found was constipation via xray despite CBCs and stool tests and trial on Prevacid). School anxiety became uncontrollable, he developed panic attacks, suicidal thoughts and eventually school refusal. When things got to their worst, our therapist recommended psychiatric hospitalization. We got him to the hospital, only to have him wake with a 102 fever the next morning. Blood work showed 200 ASO, but positive for Influenza A. They sent him home with Tamiflu. No improvement - re-hospitalization 1 month later. We instituted an IEP and behavior plan with a new therapist, and got him back to school.

 

7thgrade saw improved physical health, improved mental health and forward progress. Started decompensating in May/June with violent rages - pediatrician runs negative strep culture, diagnoses with sinusitis and give 20 days Omnicef. Improvement till August. I went away for a week for work, and when I came back all ###### broke loose. He had complained of not feeling well while I was gone,but no definitive physical symptoms. He spent the entire month of August either raging or hiding in the couch, sleeping excessively and freaked out about starting school. The first week went well, until he complained of not feeling well again. Back to the ped. who diagnosed sinusitis again, gave 20 days Omnicef and sent us for allergy testing (all negative as well as normal immunodeficiency blood work and normal ASO AntiDnase titers). 17 days into the Omnicef he contracted the H1N1. Meltdowns lasting 4-5 hours including violence and trying to pull own eyebrows and eyelashes out started after off the Omnicef for 3 days. A couple weeks later we're back to the doctors with another sinus infection (per xrays). 20 more days of Omnicef. Best 2 weeks he's had in months behavior/worry wise. 5 days off antibiotics its all coming back and then he feels sick again. Doctor says its viral and refuses more antibiotics since latest sinus xrays are clear. More blood work finds low iron, and a positive antibody for past EBV (we never knew he had). I am desperate and take him to redicare where they give him 10 more days of antibiotics. Again, he recovers. 5 days later meltdowns start- has 3 violent rages in 3 days. Has severe headache, sore throat . Calm while on Advil until about 6th hour when it starts wearing off and then starts to ramp up again. Back to ped. (substitute - ours is out of town) yesterday where she says its just another virus and thinks I am peddling for abx. We have follow up with ENT Friday, and if that seems to go nowhere, the immunologist/allergist will do more blood work for ability to produce antibodies (which it would seem he has given positive result for EBV antibodies?)

 

So here come the questions...After reading Dr.T's protocol posted here, it would appear my son fit into the Type 1 PANDAS category when he was 7-8 years old. But if you did that testing now, he wouldn't fit. Does having PANDAS Type 1 effectively change the brain so that other virus and bacteria can set off the same reaction? Is there scientific (rather than anecdotal) documentation of this? Everything I read is focused on strep. If looking at Dr Ts protocol now, my son would seem to fit into the Ideopathic Responsive to Antibiotics category. But the pediatricians are not wiling to treat with abx without true evidence of a bacteria, for fear of weakening his immune system further and setting him up for antibiotic resistance. And of course I get the reasoning that he is just less able to cope with his OCD/anxiety when he is feeling sick. Our psychiatrist is open, but uncomfortable prescribing abx as he has never done so and is unfamiliar with them. I gave him "saving sammy". He suggested I get a 2nd opinion on his PANDAS diagnosis. We had a telephone consultation with Dr Nicolaides (of Saving Sammy) who said she could not definitively say this was PANDAS, and suggested weaning him off SSRIs and putting him on a mood stabilizer. Then if that didn't work, perhaps try abx for 6-8 weeks to "see what happens". He has been weaned of Celexa but not his Luvox CR, and is on .125 Risperdal three times a day. This regimen is not working so far. We took our son to University of Michigan to consult with a psychiatrist somewhat familiar with PANDAS last week. She said they treat PANDAS kids just like other kids with OCD since right now it is just a "theory" and there is no treatment, but she would not be opposed to trying abx. But we left without a prescription of course. Just a letter of recommendation to the treating docs.

 

Where do I go from here? Am I crazy to be going down this PANDAS path in light of no current or recent strep? If not, how do I get this across to the doctors involved? Our psychiatrist says he's "still in the game" but is awaiting result of our CamKinase (they don't open back up till 1-14) and results from the ENT and immunologist before proceeding further. I feel like every test and every person I talk to gets me further away from a PANDAS diagnosis. Honestly, I had given up thoughts that it was PANDAS given that so many seem to say it abates with puberty, while my son actually got worse at puberty. But then I read "Saving Sammy" and how old Sammy was when he received treament and it started me down this unending path again. Am I too late anyway given his age? Is this just something I have to learn to accept? There are days I really feel like I am going crazy myself. I am sorry for the long post but am truly looking forwarding to reading any responses the parent "experts" may have.

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Wornoutmom-

 

Welcome and ((hugs)).

 

Your screen name made me so sad. I am so sorry for all you and your son have been through.

 

I will get right to it. You need to go see Dr Latimer. She is a pediatric neurologist in the Wash DC area. (where do you live?) She is the only doc in the country that can/will offer your son all of the treatment he needs. He should immediately be on daily antibiotics (my kids do well on zithromax). He should do a one month steroid burst. After that you can consider further intervention like PEX and IVIG if you need them.

 

My kids haven't been going through this anywhere near as long as you (we are lucky to live by Dr L)- but I can tell you it is autoimmune- so your son had many relapses with illnesses- we have the same. You may need to get your son in a healthy place with IVIG or PEX and high dose antibiotics, then I truly believe this is manageable with antibiotic therapy and steroid bursts during post infectious relapses.

 

The parents her are like a family. Lean on them. Ask them for help. I hope you will find the answers you need...

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wornoutmom,

I will ditto what dcmom says. I'm someone who wonders about all this and how the asymptomatic kids fit into the PANDAS mix, but with all you described, for me its clear that something is going on that relates to illness, and since you've had much strep in the beginning, that probably set the wheels in motion. I only have one episode for my son several years ago, and all subsequent strep tests are negative as well as titers. You at least had much proof from the start. Since he seems to do better while he was on the antibiotics courses, even tho it wasn't longterm, to me its clear he needs a longterm dose of abx, and I'd go with the one that seemed to help the most, the clydamycin?

 

Forget your pediatrician for now, he wants a second opinion, then try and get with one of the doctors mentioned on this board that is nearest you., your childs history is chockful of interesting stuff, you have way more proof than most here. I would run, not walk to one of these docs and at least get him on longterm antibioitics. for me, its a no brainer.

 

Could I also ask a few questions? You mention things got better after starting Prozac? is he still on that? if not, why not? and these other meds don't seem to be helping anymore?

 

My other biggie is the vaccines you mentioned? you said three at one time? yikes, what were they and how old was he? were these the ones you get at eleven? (Tdap, varicella and ?) My money is on those vaccines as a contributing factor to him getting worse after puberty, these could have caused a 'setback' in a pre-disposed child. Could you elaborate more on the vaccines and the timeframe and symptoms before and after?

 

 

thanks

Faith

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Hugs to you wornoutmom -- I feel for you. It makes me so angry that these dopey docs are always willing to whip out the script pad for any kind of psych drug out there for these kids but when I comes to prescribing longterm antibiotics -- eeks, shudder! I agree that you need to see Dr. T or Dr. L or Dr. K or Dr. Bouboublis ASAP and follow their protocol. You don't need to convince a skeptical doctor right now, find one who is on board from the get go.

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I am so sorry that you are going through this. I have been where you are as have many on this forum. My son was recently diagnosed with PANDAS after seven years. He is 12 1/2. He got to the point that it did not matter what was challenging his immune system, he would crash. It could be a virus, staph, whatever. He has been admitted to the psychiatric hospital a couple of times with no help. This can be a nightmare but there is hope! I noticed that you went somewhere in Michigan. Do you live there? Your son sounds a lot like mine. The rages, anxiety, school refusal, etc. My son missed 6 months of second grade, all of fifth grade and made it a whooping eight days of sixth grade so far this year. I took my son to see Dr.K in Chicago. He is one of a few in this country that really knows this disorder. My son is what would be considered a severe case. We had IVIG with Dr.K about a month ago and he is getting better!! Hang in there and keep fighting for your child - you can get him back!

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I am so sorry that you are going through this. I have been where you are as have many on this forum. My son was recently diagnosed with PANDAS after seven years. He is 12 1/2. He got to the point that it did not matter what was challenging his immune system, he would crash. It could be a virus, staph, whatever. He has been admitted to the psychiatric hospital a couple of times with no help. This can be a nightmare but there is hope! I noticed that you went somewhere in Michigan. Do you live there? Your son sounds a lot like mine. The rages, anxiety, school refusal, etc. My son missed 6 months of second grade, all of fifth grade and made it a whooping eight days of sixth grade so far this year. I took my son to see Dr.K in Chicago. He is one of a few in this country that really knows this disorder. My son is what would be considered a severe case. We had IVIG with Dr.K about a month ago and he is getting better!! Hang in there and keep fighting for your child - you can get him back!

 

I think your correlations to your sons illnesses are too close to be dismissed

 

With all this being said and I'm just trying to clarify as i am not as technically savvy as most here...

but maybe we can start including the word (acronym) PITANDS more...maybe its me being selfish...since the last couple of times my ds' strep tests were neg but still had some head inflammation/illness things going on!!!!!

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WornoutMom, welcome to the forum. I am sorry for all that you have been through, and your story hits home for me because there are a lot of similarities with my son, who is now 13 and in the 8th grade. He had a history of tics associated with strep (which he had about once a year) since he was 5 but everything was temporary and mild until he began to have OCD after a strep in the 5th grade. Several months later there was a major worsening of the OCD and many new and severe symptoms after receiving two vaccines just before starting sixth grade. That was when the true nightmare began, and even though the first neurologist we saw thought it was probably PANDAS, we were told that it should be treated the same way as any other type of OCD and Tourettes, which was with psychiatric meds such as SSRIs. He got on Prozac and other psych drugs and this only worsened the symptoms and ultimately led to numerous psychiatric hospitalizations over a six month period of time, causing him to miss months of school during his sixth grade year. He finally became stable at the beginning of 7th grade after he got on a gfcf diet and supplements and had plasma exchange with Dr. Elia at CHOP during the summer. Now, he continues to improve since he had another round of PEX in October with Dr. Latimer and most recently an increase in early December from 250 mg to 500 mg a day of Zithromax. He still has some major focusing issues with homework, but there are some obvious improvements in general mood and his ability to concentrate and think clearly since increasing the antibiotics, and the feedback from his teachers has been very positive. I expect that we will see an even bigger improvement when he starts monthly IVIG, which will hopefully be some time soon.

So I think you are definitely not crazy to go down the PANDAS road, and I agree with what the other parents have said about seeing a PANDAS knowledgeable doc, getting him on full strength antibiotics, and possible exploring IVIG or PEX. For my son psychiatric meds just worsened his condition while PANDAS treatments like PEX and full strength antibiotics have helped in a major way. Best of luck and feel free to pm me if you want to talk.

 

Ellen

 

 

 

I have been reading this forum for many months and have gleaned SO much helpful information, I decided it was time to post my personal questions since so many of you have so much knowledge and insight. I actually remember coming to this website many years ago when Chemar and Ronna were a few of the only members. I rediscovered this much more active site in October.

 

My son is 14. I suspect an undiagnosed strep infection at age 3, when I returned home from giving birth to my youngest son to find my oldest with a fever and sore throat. Took him to urgent care a few days later where they ran a negative rapid strep test and sent him home with a "viral" diagnosis. He had had some signs of extreme tantrums prior to this at age 2, but things went from bad to worse after this illness. I was told it was adjustment to the new baby. About 3-4 months later his first tic appeared - eye blinking. Fast forward 3 years - tantrums/rages had gotten so bad we turned to psychiatric/psychological help. He was diagnosed with GAD with OCD features. We started him on Paxil after many months of fretting about meds, because things seemed to be getting worse. The day after we started him on a VERY low dose of Paxil, he exhibited handwashing, strange intrusive thoughts and uncontrollable anxiety - could not get on the bus to go to kindergarted (after 6 months of going no problem). We thought it was the meds, but 3 days later he was sick, and diagnosed with strep. Over the next 9 months, he had 6 positive strep tests. We discover his high pitched scream was actually a vocal tic. He also had a nose scrunching and chin licking tic. During this time, our psychiatrist diagnosed PANDAS, after attending a lecture by Susan Swedo. Our pediatrician got on board, tested the family for strep carriage (all negative), treated it with Clyndamycin (which seemed to finally eradicate it) and he had his tonsils and adenoids removed at age 8. Strep titers went from 800 to 160 after treatment. He also received excellent ERP at this time. We saw a great recovery in 2nd grade, and thought it was behind us.

 

3rd grade saw the OCD return in form of manic list making. We put him on Prozac and it abated. His handwriting had vastly improved, his reading had recovered to above grade level. 4th grade we saw some return of meltdowns but not frequent. Fast forward to spring of 5th grade. Anxiety increasing mostly surrounding school. Throwing horrible fits about homework and seemingly couldn't understand novels he tried to read anymore. Meltdowns/rages were coming almost daily. Brother caught strep so I brought my oldest (physically symptom free) in for a culture as well - bingo! He was positive. Treated him with 20 days of Omnicef and life improved. Several months later he received 3 vaccines at once - and passed out cold in the docs' office 5 minutes later. A week later he developed a stomach bug (fever, diarrhea) the first day of 6th grade. His downward spiral started there. Constant GI pain for months (the only thing they found was constipation via xray despite CBCs and stool tests and trial on Prevacid). School anxiety became uncontrollable, he developed panic attacks, suicidal thoughts and eventually school refusal. When things got to their worst, our therapist recommended psychiatric hospitalization. We got him to the hospital, only to have him wake with a 102 fever the next morning. Blood work showed 200 ASO, but positive for Influenza A. They sent him home with Tamiflu. No improvement - re-hospitalization 1 month later. We instituted an IEP and behavior plan with a new therapist, and got him back to school.

 

7thgrade saw improved physical health, improved mental health and forward progress. Started decompensating in May/June with violent rages - pediatrician runs negative strep culture, diagnoses with sinusitis and give 20 days Omnicef. Improvement till August. I went away for a week for work, and when I came back all ###### broke loose. He had complained of not feeling well while I was gone,but no definitive physical symptoms. He spent the entire month of August either raging or hiding in the couch, sleeping excessively and freaked out about starting school. The first week went well, until he complained of not feeling well again. Back to the ped. who diagnosed sinusitis again, gave 20 days Omnicef and sent us for allergy testing (all negative as well as normal immunodeficiency blood work and normal ASO AntiDnase titers). 17 days into the Omnicef he contracted the H1N1. Meltdowns lasting 4-5 hours including violence and trying to pull own eyebrows and eyelashes out started after off the Omnicef for 3 days. A couple weeks later we're back to the doctors with another sinus infection (per xrays). 20 more days of Omnicef. Best 2 weeks he's had in months behavior/worry wise. 5 days off antibiotics its all coming back and then he feels sick again. Doctor says its viral and refuses more antibiotics since latest sinus xrays are clear. More blood work finds low iron, and a positive antibody for past EBV (we never knew he had). I am desperate and take him to redicare where they give him 10 more days of antibiotics. Again, he recovers. 5 days later meltdowns start- has 3 violent rages in 3 days. Has severe headache, sore throat . Calm while on Advil until about 6th hour when it starts wearing off and then starts to ramp up again. Back to ped. (substitute - ours is out of town) yesterday where she says its just another virus and thinks I am peddling for abx. We have follow up with ENT Friday, and if that seems to go nowhere, the immunologist/allergist will do more blood work for ability to produce antibodies (which it would seem he has given positive result for EBV antibodies?)

 

So here come the questions...After reading Dr.T's protocol posted here, it would appear my son fit into the Type 1 PANDAS category when he was 7-8 years old. But if you did that testing now, he wouldn't fit. Does having PANDAS Type 1 effectively change the brain so that other virus and bacteria can set off the same reaction? Is there scientific (rather than anecdotal) documentation of this? Everything I read is focused on strep. If looking at Dr Ts protocol now, my son would seem to fit into the Ideopathic Responsive to Antibiotics category. But the pediatricians are not wiling to treat with abx without true evidence of a bacteria, for fear of weakening his immune system further and setting him up for antibiotic resistance. And of course I get the reasoning that he is just less able to cope with his OCD/anxiety when he is feeling sick. Our psychiatrist is open, but uncomfortable prescribing abx as he has never done so and is unfamiliar with them. I gave him "saving sammy". He suggested I get a 2nd opinion on his PANDAS diagnosis. We had a telephone consultation with Dr Nicolaides (of Saving Sammy) who said she could not definitively say this was PANDAS, and suggested weaning him off SSRIs and putting him on a mood stabilizer. Then if that didn't work, perhaps try abx for 6-8 weeks to "see what happens". He has been weaned of Celexa but not his Luvox CR, and is on .125 Risperdal three times a day. This regimen is not working so far. We took our son to University of Michigan to consult with a psychiatrist somewhat familiar with PANDAS last week. She said they treat PANDAS kids just like other kids with OCD since right now it is just a "theory" and there is no treatment, but she would not be opposed to trying abx. But we left without a prescription of course. Just a letter of recommendation to the treating docs.

 

Where do I go from here? Am I crazy to be going down this PANDAS path in light of no current or recent strep? If not, how do I get this across to the doctors involved? Our psychiatrist says he's "still in the game" but is awaiting result of our CamKinase (they don't open back up till 1-14) and results from the ENT and immunologist before proceeding further. I feel like every test and every person I talk to gets me further away from a PANDAS diagnosis. Honestly, I had given up thoughts that it was PANDAS given that so many seem to say it abates with puberty, while my son actually got worse at puberty. But then I read "Saving Sammy" and how old Sammy was when he received treament and it started me down this unending path again. Am I too late anyway given his age? Is this just something I have to learn to accept? There are days I really feel like I am going crazy myself. I am sorry for the long post but am truly looking forwarding to reading any responses the parent "experts" may have.

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I just want to say there is help!!!! AND, he can get better. Like everyone else has said you need to contact the right Dr. with PANDAS experience. We have worked closely with Dr. K and been extremely thrilled with the progress our son has made.

 

I will add because of the resurgence of strep in your son's history, I would suspect his immune system is taxed, he is dealing with most likely a resilient strain that antibiotics alone might not resolve.

 

I would definitely start immediately by running some additional test in addition to CaM Kinase.

 

http://www.latitudes.org/forums/index.php?showtopic=6456

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Wornoutmom,

 

So glad you posted! You will get the support you need here. I also felt so sad when I saw your screen name. You and your son have been through so much. I agree with others that you have no time to waste trying to educate reluctant doctors. You should go straight to someone recommeded on this site if you can - preferably one of the most experienced docs, as your son's PANDAS/PITAND seems to be severe. We are out in California, so can't make any direct recommendations, but have heard great things about Dr. Latimer, Kovacevic, and Trifilletti, although all would require you to travel.

 

From your story, it seems pretty clear that your son has PANDAS that has possibly developed over time into PITAND (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder). Since he seems to get worse off the antibiotics more recently, I also wonder whether you've completely irradicated the strep or if it's still hiding out in his body. You've done all the right things, now you just need to find the right doctor and get your son on an aggressive program of antibiotics, possibly a steroid trial, and probably IVIG/PEX.

 

Please keep us all posted on your progress.

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Faith:

 

By the best of my recollection, he went off of Prozac when the panic attacks started in 6th grade. The pdoc had been slowly raising it in the fall as his school anxiety was getting worse (the period where he complained of GI pain). He then pulled him off it cold turkey to see what his baseline was and things went from bad to worse. Since that time my son has been on a mix of SSRI and/or antipsychotics and there were tons of med changes that year due to hospitalization etc. Last year was more stable on Celexa and Abilify. He is now on Luvox CR and a small dose of Risperdal. My son is a walking science experiment of chemicals...sigh..

 

The vacinnes were for tetanus, 2nd booster of chicken pox (is that varicella) and I dont remember the other, but it is the routine, last of childhood one I believe. I'd have to go back and look to know for sure. As far as behavior before and after, the only indication I have is that I can't remember anything remarkable before from that summer(july/aug). I do remember that in the early summer he made a new friend and was riding his scooter a lot with him. He seemed happy. He is always worried on some level, but I'm pretty sure things seemed ok. We got the vaccines, went to florida the following week for vacation, and he got sick with the tummy bug a day after we got back and missed the first week of 6th grade, and then all ###### broke loose.

 

I actually emailed Dr. K a few months ago. We live in MI so not too far a drive. His immediate email response actually scared me, in that he was advocating IVIG immediately due to my son's age. That he wouldn't even consider antibiotics at this point because he is entering puberty and it may be too late for full recovery, even with IVIG. Somehow this seemed off to me, given that he hadn't actually seen my son or reviewed his medical history (just read soemthing similar to whatI posted above) , and I don't have the money to pay for this (my son weighs 120 poundsX $1000 per every 10 pounds= $12,000 per treatment). Maybe he was just trying to light a fire - the "run don't walk thing". I guess my biggest fear is that by going to see one of the big 3 (Dr L,DrT,or DrK) is that they already have a bent to PANDAS, and sometimes I wonder if I describe this whole thing with a bent to PANDAS. For those with experience, would these docs be honest to say "no - your son doesn't fit the profile - I don't think he has PANDAS"? Or would they be able to say definitively "yes - despite the lack of strep currently, he does have PANDAS". I don't know which answer I'm more scared of...Other than distance, how do you decide which doc to see?

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Wornoutmom,

 

So glad you posted! You will get the support you need here. I also felt so sad when I saw your screen name. You and your son have been through so much. I agree with others that you have no time to waste trying to educate reluctant doctors. You should go straight to someone recommeded on this site if you can - preferably one of the most experienced docs, as your son's PANDAS/PITAND seems to be severe. We are out in California, so can't make any direct recommendations, but have heard great things about Dr. Latimer, Kovacevic, and Trifilletti, although all would require you to travel.

 

From your story, it seems pretty clear that your son has PANDAS that has possibly developed over time into PITAND (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder). Since he seems to get worse off the antibiotics more recently, I also wonder whether you've completely irradicated the strep or if it's still hiding out in his body. You've done all the right things, now you just need to find the right doctor and get your son on an aggressive program of antibiotics, possibly a steroid trial, and probably IVIG/PEX.

 

Please keep us all posted on your progress.

 

 

I am wondering: how does PANDAS develop over time into PITANDS? And do docs really legitimize PITANDS when there seems to be no research that's been done on it? And would antibiotics treat that? It seems like antibiotic treatment all seems geared towards eradicating strep.

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Welcome. First let me say that I think you are very smart and courageous to go down the PANDAS path again. It seems like there are too mnay correlations to be ignored.

 

As for the reference to vaccinations, a good amount of PANDAS kids have had reactions to the chicken pox vaccine. Whether it be shingles, chicken pox itself, or an excaerbation.

 

I agree with the others that you need to get to an expert and you need those antibiotics as well. As you've probably read here before, strep can occur in more places than the throat and soemtimes strep can be very hard to erradicate.

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wornoutmom-

 

I have seen Dr Latimer and Dr Trifiletti (I have not seen Dr K). I have to say, I had a similar experience with Dr K, he returned my email immediately and told me my daughter had pandas and to seek ivig. I was very skeptical- but I have to say so many parents on this forum have had a wonderful experience with him- I just think he may be a bit unusual (for a doctor).

 

Both Dr Latimer and Trifiletti are pediatric neurologists with excellent credentials and experience. Neither only treats pandas, and both will work to rule out other diagnosises. Neither take the diagnosis lightly, nor rush into un needed intervention. At this time, I am not sure if Dr T is set up to get IVIG or PEX- which is why I would suggest Dr Latimer, as she works closely with Georgetown University Hospital. She also works to help get everything covered by insurance (and Georgetwon accepts most insurances)- which is the reason I would recommend her over Dr. K- even if the travel expense is a bit more.

 

That being said- your son's issues DO sound so much like many on this board's experience. Strep is only needed once- and many times it is missed because it is asymptomatic (the strep that triggered dd's pandas was one day home sick with a fever of 100.3- that's it). My daughter now reacts to other immune challenges. She had plasma pheresis this year- and the month after it she was a different kid- remarkable. She then contracted H1N1 and had a pandas relapse. Luckily with continued antibiotics and a steroid burst- she is well again.

 

My advice would be to run (not walk) to Dr Latimer, because although she is busy, she is committed to getting these kids 100% well.

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Wornoutmom,

 

So glad you posted! You will get the support you need here. I also felt so sad when I saw your screen name. You and your son have been through so much. I agree with others that you have no time to waste trying to educate reluctant doctors. You should go straight to someone recommeded on this site if you can - preferably one of the most experienced docs, as your son's PANDAS/PITAND seems to be severe. We are out in California, so can't make any direct recommendations, but have heard great things about Dr. Latimer, Kovacevic, and Trifilletti, although all would require you to travel.

 

From your story, it seems pretty clear that your son has PANDAS that has possibly developed over time into PITAND (Pediatric Infection-Triggered Autoimmune Neuropsychiatric Disorder). Since he seems to get worse off the antibiotics more recently, I also wonder whether you've completely irradicated the strep or if it's still hiding out in his body. You've done all the right things, now you just need to find the right doctor and get your son on an aggressive program of antibiotics, possibly a steroid trial, and probably IVIG/PEX.

 

Please keep us all posted on your progress.

 

 

I am wondering: how does PANDAS develop over time into PITANDS? And do docs really legitimize PITANDS when there seems to be no research that's been done on it? And would antibiotics treat that? It seems like antibiotic treatment all seems geared towards eradicating strep.

 

I don't know exactly HOW a child goes from having an autoimmune reaction to just strep to reacting to other infections. I have read about PITAND on Dr. Kovacevic's web site, but have not discussed it with other doctors because it complicates the issue and we've never been sure that our son's strep was fully irradicated, so we were focused on that. I believe Susan Swedo recognized PITAND as a legitimate disorder, but not sure how much research has actually been done on this. Antibiotics do not treat a viral infection, just bacterial, including other bacteria than strep. Hope this helps a little!

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