Where is the strep located in the brain?

[_Jennifer_]

My son was diagnosed with TS when he was 5, now he is 13 and going through puberty, He has has OCD ADD and TICS for 8 years, they are much worse when he started going through puberty, His stimulants have always made his tics twice as bad but he just went on with his day ticing, now his tics are similar to the first man who had deep brain stimulation surgery (due to the stimulants) my son also has undiagnosed Aspergers (his school says he has this) He has had two evaluations in the past and they both say he only has TS and that TS is causing him to have odd social problems. He is high superior in intelligence and is like a science and math genius. Off Stimulants he wanders the school (he has his own adult assistant at school) and will walk in other classrooms and say "hey guys how's it going" during class, he will argue everything until he gets the last word, he will correct every grammar error his teachers makes and he is serious, last year there were several errors in the year book and marched into the principles office and demanded a reprint for the entire school he was truly upset, they had to call me so that I could calm him down. He's not trying to be bad this is just who he is. On the stimulant he sits and is Obsessed with his class work and his teacher. Now he is home and I can't give him his stimulant because now he tics so so bad he cries and screams "I hate you for giving me that medicine, please, I can do it now without meds" He loves school so much he wants to go in early every day, and hates to miss any school. A week ago his new doctor (psychiatrist) after getting back his labs told me he had Syndham chorea and pandas and that he has strep in his brain. She told me he probably got it when he was three. His last sore throat was at 5 and they tested him for strep with a neg result when he was 5 (I picked up his med records) that was the last time he has had a fever or sore throat, he hasn't had antibiotics for over 8 years because he has not been sick so how can he have this in his brain (also has post strep glomerulonephritis). We are still waiting for the new Dr appointments. His Antistreptolysin O Ab test is 323.5 and his Anti-Dnase B strep antibodies is 1:480 I don't have a clue what's going on. He is like an autistic child with meltdowns for no reasons and hates to be touched and hates bright lights and talks very loud and gets excited easily he paces back and forth all day long, he has a photographic memory I think this is why he is so smart. He is color blind. He has always been very pale with purple rings around his eyes, He is very white and burns in the sun very easily, he has always been underweight off the charts underweight but wears husky pants because of his belly. I had read about pandas about 5 years ago and was told by his neurologist that its not real. I am so confused I don't no what to do he cant learn off stimulants and cant tolerate the tics on stimulants anymore. Off stimulants he always tics but they are normal constant tics not violent crazy head turning tics, he is so miserable has had steady tics every day for over 8 years I only give I'm the stimulants when he has school never on the weekends or summer. Sorry for adding my first post with so much information and confusion, maybe someone can tell me what to expect from the doctors or what I should do he is going to see a cardiologist, a kidney doctor and his neurologist in the next few weeks.

[Dedee]

Jennifer,

 

I am so sorry for everything you are going through. I know it is horrible to watch you son struggle and suffer like that. I pray that you can find some answers soon. The key to that is to find a doctor who believes that PANDAS is real and is up to date on the treatments. There are many physicians who still don't believe in the PANDAS diagnosis. It is realitively new in the medical arena and still contraversial. However, those of us who live it everyday know just how real it can be. It is very important to find someone who specializes in PANDAS to help you sort this out and come up with a proper diagnosis and treatment plan. It sounds as though you have all suffered long enough. Just remember as you go to all of these appointments that you have set up, that it is very possible that some or all of them may tell you that is a crazy diagnosis. Do not let this discourage you. Again, I urge you to find a physician who is experienced in treating PANDAS. This will give you hope and direction. My heart goes out to your family. I am sure there is a beautiful, smart, wonderful little boy in there, just waiting to come out. I pray you find the right medical care very soon. Keep us updated.

 

Dedee

[EAMom]

Hi Jennifer,

 

Wow! I would really recommend consulting with Dr. Kovacevic in Chicago www.webpediatrics.com . You can send him an e-mail at no charge. He also does phone consults (there is a charge). IMO Dr. K. is really the PANDAS expert in the U.S. He has treated many more severe cases than any other doctor. Several people (even from California) on this board have worked with him.

 

I do think it's possible that your son had strep. hiding out in his body (sinuses?, somewhere difficult to culture, perhaps intracellular) for many years, causing symptoms. But, your son's situation is not really clear cut due to the chronicity of the situation. We also don't know to what extent PANDAS/strep is contributing to the Asperger symptoms or if it is just causing the tics. Certainly it would be interesting to do a trial of antibiotics (many have had good results with Azithromycin) for a couple of months... although, it seems that some children get to the point where they don't respond to antibiotics anymore.

 

Re. Azithromycin...I think Azithromcyin worked well for my dd because it is anti-inflammatory, immune-modulating, and gets intracellular strep. Also, at higher doses Azithromycin is bactericidal, not just bacteristatic. I do believe how well a child does on Azithromycin is dose dependent.

 

If your son does indeed have PANDAS, I also think it is interesting that going through puberty has made him worse. I have been trying to figure out how puberty affects PANDAS kids and whether this effect is different for boys vs. girls.

 

Was his onset of Ocd/tics/add a dramatic onset at age 5? Do you notice any worsening of symptoms with dental visits (cleaning or extractions?)

 

Yes, PANDAS is a difficult disease in that there is no easy "test" for it. And, unfortunately, most doctors are poorly informed and confused, even to the point of denying that PANDAS exists. What part of the country do you live in?

[_Jennifer_]

Thank you so much for responding, I live in Louisville Ky. I will contact this Dr. K he sounds like just what my son needs. Well the OCD was first noted at age 2 but very mild. Things like finishing walking patterns he would start them over if he did not complete it a certain way, he would line up his snacks and toys in a straight line and it had to be perfect. I looked at his medical records and when he was 5, I took him in for a sore throat and fever his culture was neg and no antibiotics were given, This is the case in one out of four visits, I know I took him in thinking he needed treatment but looking at his records in 13 years was only given antibiotics about four times out of about 16 visits for sore throats and ear infections the cultures were always neg so they sent us home. So when he was 5, it shows I took him in for a sore throat and a neg culture (on 12-04-00), the next time we went to the doctor on (2-21-01) it reads discuss behavioral problems, He was sent to be evaluated and than diagnosed with Tourette syndrome, that's been over 7 years ago, His behavior at 5 was so horrible I felt like a failure as a parent, This child was given so much love and one on one with me I never spanked or yelled but he acted over night like an abused child or a child who received no attention from anyone but it was the complete opposite my husband new Christian was never treated anyway but great so he would yell at me to spank him and that I babied him to much that he needed discipline and time outs, I knew that was not the answer because his behavior was never mean or hurtful just really really annoying, I couldn't discipline him for being annoying so we divorced this all happened in-between the two dates I listed above, the doctor wrote on the visit report of 2-21-01 that parents have separated, I remember fighting for the evaluation but I didn't remember why I had to fight until I read about my separation I guess I had forgotten when that had happened. His behavior was hard to handle in elementary school at least for the school, having the TS diagnosis I just treated him like he was great and would calmly explain things to him, things he was doing a little different than other children his age.

 

He has a super memory so I just asked him if he remembers the last time he had a sore throat, he instantly responded and told me when he was at the Academy, this is a private school for children with aspergers and other disorders, well he was only there in 6th grade from aug-nov, in nov he was kicked out of this school and I had to enroll him into a public school, Christian just told me that when he was there he had a sore throat and told his teacher he thought he had strep through he had it in the past so I guess he remembered sore throat means strep, he claims his teacher first asked him if he was a doctor and told him he could not go home unless he had a fever. I don't recall this but he claims it only hurt for about a day, This is when his already hard to handle OCD behavior got 10Xs worse so public school he went, He has a personal assistant after hiring a lawyer in 6th grade the school would write him up for ticking, he hummed in a pattern constantly and told them he could not stop I educated them all with no luck until I brought a lawyer to a meeting. This trouble started in 6th grade and he has never recovered, he is in 8th grade now but still has this crazy OCD that only gets worse every year, He snaps his fingers next to his right ear than his left all the time, and he will tell you its his OCD, he knows all about OCD and understands when something he is doing is related to that. I could list many OCD behaviors he has but I think people on here understand without me stating all 100 things he does. He is a mess and people have been telling me for about three years that he is unlike any other child they have ever seen, (because he is so verbal and can debate any subject very intellectually) but often he is overcome with OCD and tics so he wants everything very quite, but when things are good for him he really is like a typical person that's what throws everyone off. He has autistic behavior about 90 percent of the time so that 10 percent is so special, its come out some times, I can see how wonderful he is but he is in so much mental and physical pain.

 

Well he has alot of dental visits, he goes every 6 months for a cleaning and each time they find something that needs fixing, he grinds his teeth so bad they have to build them up every year (his molars) every baby tooth will hang on for dear life until his new tooth splits it in two and still the back part of his baby teeth will stay in his mouth so they are constantly pulling his baby teeth. Now he is 13 so that's all behind us just the grinding ,, He is at the dentist so often I can't seem to make the connection I just know he hates it and is very quite in the car ride home. usually sleeps a lot afterwards but I just relate that to his anxiety and stress he gets before he sees the dentist.

Hi Jennifer,

 

And puberty, He started getting pimples over a year ago, and his year they are very bad, but some weeks they are huge filled sores everywhere, these weeks he is uncontrollable, I have made this comment to his assistant several times, He can go from having 50 regular tiny pimples only on his forehead (this is more common for him), to having 50 large filled pimples all over his face, if this occurs than he is so uncontrollable, He has OCD so his routine is always the same, every single morning he showers for about 30 minutes than after he gets dressed he put stridex on his face and before bed, I wonder why pimples make my son so much worse.

 

Sorry for writing so much and thank you so much for the support.

 

Jennifer

 

Wow! I would really recommend consulting with Dr. Kovacevic in Chicago www.webpediatrics.com . You can send him an e-mail at no charge. He also does phone consults (there is a charge). IMO Dr. K. is really the PANDAS expert in the U.S. He has treated many more severe cases than any other doctor. Several people (even from California) on this board have worked with him.

 

I do think it's possible that your son had strep. hiding out in his body (sinuses?, somewhere difficult to culture, perhaps intracellular) for many years, causing symptoms. But, your son's situation is not really clear cut due to the chronicity of the situation. We also don't know to what extent PANDAS/strep is contributing to the Asperger symptoms or if it is just causing the tics. Certainly it would be interesting to do a trial of antibiotics (many have had good results with Azithromycin) for couple of months... although, it seems that some children get to the point where they don't respond to antibiotics anymore.

 

I think it is interesting that going through puberty has made him worse. I have been trying to figure out how puberty affects PANDAS kids and whether this effect is different for boys vs. girls.

 

Was his onset of Ocd/tics/add a dramatic onset at age 5? Do you notice any worsening of symptoms with dental visits (cleaning or extractions?)

 

Yes, PANDAS is a difficult disease in that there is no easy "test" for it. And, unfortunately, most doctors are poorly informed and confused, even to the point of denying that PANDAS exists. What part of the country do you live in?

[Chemar]

A week ago his new doctor (psychiatrist) after getting back his labs told me he had Syndham chorea and pandas and that he has strep in his brain. She told me he probably got it when he was three. His last sore throat was at 5 and they tested him for strep with a neg result when he was 5 (I picked up his med records) that was the last time he has had a fever or sore throat, he hasn't had antibiotics for over 8 years because he has not been sick so how can he have this in his brain (also has post strep glomerulonephritis). We are still waiting for the new Dr appointments. His Antistreptolysin O Ab test is 323.5 and his Anti-Dnase B strep antibodies is 1:480 I don't have a clue what's going on.

 

he is going to see a cardiologist, a kidney doctor and his neurologist in the next few weeks.

 

Hi Jennifer and welcome, tho so sorry tohear what brings you here

 

I am not a PANDAS parent(my son has genetic Tourette Syndrome) but I sure have been here long enough to see how many kids sadly suffer with this, and how often they are misdiagnosed with other disorders.(although some do have PANDAS as well as TS, Aspergers, autism)

 

I am so pleased to see that this new doctor you have is clued up enough to at least know about PANDAS and that she ran tests and has given you referrals. Sadly many mainstream doctors dont seem to acknowledge the existance of PANDAS nevermind how to diagnose or treat

 

we have many threads here and also on the TS/tics board where PANDAS parents report success with the azithromycin antibiotic (if you do a search on the TS/tics board you will also find posts from Ronnas, who was the first parent here to report on success with azith and she documented a lot on the progress of her son)

 

In addition to Dr Kovacevic, there are also some other physicians around the country who are recognized as being at the forefront of research and treatment on PANDAS (some parents here have seen Dr Tanya Murphy in Florida, and there is also Dr Swedo in Maryland at NIMH),

 

It certainly sounds like the psychiatrist you are currently seeing for your son is thankfully aware of PANDAS, so hopefully you will be able to get the best treatment possible for your son.

 

all the best to you

[Pudgeo]

Hi, Have you had him tested for any food sensitivities? When you said he was pale that made me think of this..DO you have a DAN Dr in your area who can test him for food sensitivities and vitamin defiencies? A traditional Dr will only test for food allergies and alot of foods like wheat & dairy are not digested correctly. How is his diet?

DO any foods trigger tics for him? Sarah

[EAMom]

I don't know if Swedo actually sees PANDAS patients anymore...NIMH has pretty much shut down it's PANDAS research. However, it wouldn't hurt to send Dr. Swedo an e-mail...perhaps you can get in through the "back door" so to speak since your son has Asperger's. (Autism research is alive and well at NIMH.) The worst that could happen is that she doesn't answer your e-mail!

 

Michele (I think that's who it is...) has several posts on Dr. Murphy. Dr. Murphy has a different approach to PANDAS/tics than Dr. K. I don't believe she does too much with prophylactic antibiotics or IVIG. Also, if I remember correctly, she believes that many of these kids will "outgrow" their tics? which doesn't seem to be the case with your son?

 

How lucky your son is to have such a concerned and loving parent as you. Hang in there. It sounds like you gleaned some useful information already by reviewing his old medical records.

[Chemar]

Michele (I think that's who it is...) has several posts on Dr. Murphy. Dr. Murphy has a different approach to PANDAS/tics than Dr. K. I don't believe she does too much with prophylactic antibiotics or IVIG. Also, if I remember correctly, she believes that many of these kids will "outgrow" their tics? which doesn't seem to be the case with your son?

 

Sorry, I may have missed it before but have you been to see Dr Murphy EAMom? This is the first I have heard of her having that approach?

 

We did see Dr Murphy in 2000 with my son when we suspected PANDAS, I can sure say she never led us to believe that "many of these kids outgrow" PANDAS or tics and she certainly did tell us of antibiotic protocol for treatment. I have no idea of her current views re IVIG as it is 8 years since we saw her last

 

Dedee (amongst others here) also went to see her fairly recently, and she wrote helpful letters for her to take to her docs in home state plus recommended the antibiotics etc. She was very helpful to Michele as well as far as I remember

 

I think it really is important for anyone coming here to get a balanced perspective from everyone's actual experiences so that they, and their physicians can make informed decisions .

[_Jennifer_]

He has only been tested for allergies when he was four, he had a throat clearing and cough tic, but I thought he was sick. At that time he was only allergic to mold, as we most are according to his allergist. Sodas have been forbidden in my house as long as my kids have been alive I just think they are crap. But never at a family members house until a few years ago. My grandmother and mother would allow them to drink Mountain Dew yes I said it Mountain Dew, my youngest was okay but my Oldest with Tourette Syndrome would start repeating words very loud and in a silly voice had super energy was jumping and talking very fast in my fast and laughing, he was happy, just to happy and totally uncontrollable. After he had consumed Caffeine, So I thought it was the Caffeine but than I noticed the same reaction to Fanta this has no Caffeine, I had allowed him to have this on our road trip to FL last spring break and he had the same reaction, I think it was the red dye 40, I don't really no what it is. He is only allowed to have juicy juice, or V-Fusion he drinks alot of them. He will only eat Pizza as his main source of calories while my younger son and I eat pork chops and potatoes for dinner he is eating pizza every night, He will eat scrambled eggs from time to time and cereal loves milk (organic only) also goldfish and cookies lots of junk this started around four or five he was a decent eater until five. He takes two of KIRKMANS vitamins every day and I had even started him on the gluten free diet at the start of the school year, but he started going crazy and his behavior was so terrible at school they were asking me if I had considered putting him in a hospital so I stopped the diet that day, I should have started it over the summer but I didn't so here we are, He only eats foods high in gluten only gluten I noticed this when we started the diet, I had to get rid of everything. I think maybe now if he can be treated for the strep hopefully we can go back to the diet, can a DAN doctor test him to see if this diet can help? He also has Post strep glomerulonephritis I read this can cause kidney failure and his pediatrician ordered him to see a Nephrologist Friday but the girl at his office has yet to set it up I have called twice a day every day, This can cause kidney failure from what I read and heart failure as well. Its like Rheumatic fever of the kidneys I think. I think he needs antibiotics for that as well as his pandas. He goes to the neurologist in the morning so I hope they treat him. The only Dan doctor near me is in Indianapolis IN that's only four hours away I think, so that's not bad I just looked one up, If she orders the tests can we go to our lab back in KY or will it have to be in the location of the Dan doctor? I heard the diet only works on three year old children is that not true. My mother has non tropical spru (gluten and milk allergy disorder) she says it went away after her pregnancy with me but she still has alot of symptoms and can not drink milk. But she says its not that its an ulcer and that it went away. You know mothers they know it all. Thank you for your concern I really feel like I have people to talk with, my friends stop calling me when I start to brainstorm to them about my son. They will disappear for a few months. So thanks again. Jennifer

Hi, Have you had him tested for any food sensitivities? When you said he was pale that made me think of this..DO you have a DAN Dr in your area who can test him for food sensitivities and vitamin defiencies? A traditional Dr will only test for food allergies and alot of foods like wheat & dairy are not digested correctly. How is his diet?

DO any foods trigger tics for him? Sarah

[EAMom]

Sorry Chemar...this is the post from Michele I was thinking about...you may be right about the prohphylactic antibioitics. (Michele was referring to Dr. Murphy not doing IVIG.)

 

We went to see Dr. Murphy in Florida. She was very knowledgeable on PANDAS and was able to diagnose my son with PANDAS. It felt great to have this verified. However, she did not write any prescriptions for meds because we live out of state. She did make up a treatment plan that included OT. She was very forsightful because he is having issues with motor skills showing up now. We have done OT for a year now. I have to tell you her treatment plan did help with some Dr's to write a script for antibiotic long term treatment like the immunologist. Others will still be skeptial of PANDAS even with the diagnosis from her. I have had trouble getting his neurologist to go along with the PANDAS diagnosis. He believes it is TS. I don't think she uses IVIG but rather suggests Tenex or Abilify for tics. Possibly ADD meds like low dose of Ritalin or anti axiety medication and getting help from a psychologist/psychiatrist for the behaviors. She does not recommend tonsils being removed either. So if you are looking for a fix rather then medicines to mask the symptoms she might not be your answer. I could go over more with you if you want to PM. Dr. K seems to be the one who is doing the IVIG. I am waiting for his reseah to be published.

 

Michele

[EAMom]

re. docs...pmoreno liked a place called Creation's Own in Florida. I believe they work mostly with autism but also do IVIG. Perhaps she will post a comment or you could search "Creation's Own" on this website. It might be a good fit since your son is also autistic.

[michele]

Dr. Demio may be the DAN! DR. for you. He is well known and holds a high up position in the DAN! organization and speaks on Autism 1 radio. He is a father of an autistic son so he gets where we are coming from about the autoimmune issues. He does give you forms that can be submited to insurance. I was able to get reimbursement after I paid him at the time of our visit. http://www.drdemio.com/ He can also do phone consults. He will recommend the diet and supplements to detox the metals.

 

 

He has only been tested for allergies when he was four, he had a throat clearing and cough tic, but I thought he was sick. At that time he was only allergic to mold, as we most are according to his allergist. Sodas have been forbidden in my house as long as my kids have been alive I just think they are crap. But never at a family members house until a few years ago. My grandmother and mother would allow them to drink Mountain Dew yes I said it Mountain Dew, my youngest was okay but my Oldest with Tourette Syndrome would start repeating words very loud and in a silly voice had super energy was jumping and talking very fast in my fast and laughing, he was happy, just to happy and totally uncontrollable. After he had consumed Caffeine, So I thought it was the Caffeine but than I noticed the same reaction to Fanta this has no Caffeine, I had allowed him to have this on our road trip to FL last spring break and he had the same reaction, I think it was the red dye 40, I don't really no what it is. He is only allowed to have juicy juice, or V-Fusion he drinks alot of them. He will only eat Pizza as his main source of calories while my younger son and I eat pork chops and potatoes for dinner he is eating pizza every night, He will eat scrambled eggs from time to time and cereal loves milk (organic only) also goldfish and cookies lots of junk this started around four or five he was a decent eater until five. He takes two of KIRKMANS vitamins every day and I had even started him on the gluten free diet at the start of the school year, but he started going crazy and his behavior was so terrible at school they were asking me if I had considered putting him in a hospital so I stopped the diet that day, I should have started it over the summer but I didn't so here we are, He only eats foods high in gluten only gluten I noticed this when we started the diet, I had to get rid of everything. I think maybe now if he can be treated for the strep hopefully we can go back to the diet, can a DAN doctor test him to see if this diet can help? He also has Post strep glomerulonephritis I read this can cause kidney failure and his pediatrician ordered him to see a Nephrologist Friday but the girl at his office has yet to set it up I have called twice a day every day, This can cause kidney failure from what I read and heart failure as well. Its like Rheumatic fever of the kidneys I think. I think he needs antibiotics for that as well as his pandas. He goes to the neurologist in the morning so I hope they treat him. The only Dan doctor near me is in Indianapolis IN that's only four hours away I think, so that's not bad I just looked one up, If she orders the tests can we go to our lab back in KY or will it have to be in the location of the Dan doctor? I heard the diet only works on three year old children is that not true. My mother has non tropical spru (gluten and milk allergy disorder) she says it went away after her pregnancy with me but she still has alot of symptoms and can not drink milk. But she says its not that its an ulcer and that it went away. You know mothers they know it all. Thank you for your concern I really feel like I have people to talk with, my friends stop calling me when I start to brainstorm to them about my son. They will disappear for a few months. So thanks again. Jennifer

Hi, Have you had him tested for any food sensitivities? When you said he was pale that made me think of this..DO you have a DAN Dr in your area who can test him for food sensitivities and vitamin defiencies? A traditional Dr will only test for food allergies and alot of foods like wheat & dairy are not digested correctly. How is his diet?

DO any foods trigger tics for him? Sarah

[ratlenhum]

I contacted Dr. K but he basically was no help because my son has a "co-morbid" condition of autism

 

He said the steroid burst has no predictibility value for kids with autism and he couldn't recommend IVIG for my son outright.

 

He may be the best but if your kid has autism on top of PANDAS you may want to look elsewhere.

 

If Dr.K has changed his views on that since January I'd be interested in hearing how he feels now.

[EAMom]

Thanks! That is very interesting information, esp. about the steroid burst response!

 

I am curious if he would consider treating Jennifer's son though since he is aspergers?...if that would make a difference? Just a thought?

[Missmom]

I was just wondering if the dr. Who ran the labs and suggested pandas has given you a prescription of any antibiotics at all just as a trial to see what if any improvements are noted. It would need to be a full strength dose as I have noted most pediatricians seem to start out on the low dose which in your case may not lead to any dramatic improvements. Maybe this would help you start to figure out how many of your sons behaviors are pandas related. This is so sad to see how many children are suffering due to a lack of knowledge in our medical communities. So glad you are on your way to finding answers.