No Such Thing as PANDAS

[michele]

Bmom and Pmom,

Could you please give us an idea of his plan to treat the PANDAS? Does he write prescriptions or how does he treat for the $300 over the phone? What are you currently doing and what has helped you

Thanks,

Michele

? Is there a list of supplements we should be trying? Does he write out a plan of action for you to take to your own Dr? How does the long distance treatment work?

Just wanted to chime in that I also believe Dr. K to be a great doctor when dealing with PANDAS. We were able to do a phone consult for $300. He does not push IVIG. He told me a step by step plan to help my son with IVIG being the last resort. He never encouraged me to use him for the IVIG either. He seems to be the most knowledgable doctors that I have found for PANDAS and he has seen many PANDAS children.

[bmom]

The phone consult was helpful in many ways for me. I was still trying to decide if my son was PANDAS. I had one doctor saying no, but she was basing this on titers only. Dr. K confirmed my suspicion that it was PANDAS. As far as treatment, he can not prescribe with the phone consult. I expressed my concern about not being able to find a doctor here that would prescribe and he said "Find one!" Of course he could prescribe if we went to Chicago, but he never even mentioned or pushed that. I was the one who brought that up. For us, it was his vast knowledge of titers, behaviors of PANDAS kids, etc. that has seemed to be right on. My son has seemed to follow what he said would happen in his experience. Since being on antibiotics, the tics have mostly teetered off, but the separation anxiety seems to be hanging on longer. I have also found him to be very good about returning emails promptly. We only had the one phone consult, but I have emailed him many questions and he promptly responds even though we are not even probably technically a patient of his. His answers are always formed in' "in my experience" type format. Yet, they always seem to be right on with what happens with my son. We are considering going to Chicago as he just seems so knowledgeable and "in my experience" (ha, ha) a wonderful doctor. I know of another mom who also did the phone consult with him and found it very valuable even though she had spoken with various other doctors. I guess I dont know if he would give you any new info. Michelle as I know you have also taken your son to some of the best. For me, starting the PANDAS road, he was great!!!

[michele]

I am scared long term. I see my son wax and wane and it scares me for the future. I just wish there was a cure not just a bandaide with the meds. I worry about long term side effects from the antibiotics and Abilify. He had a bad couple days I think he was exposed to strep. Alot of temper issues and emotional issues. I also notice he is starting to freak over rain storms. He wants to get home as soon as it looks like rain. This is all hard with school approaching and alot of new changes coming forward. It seems all summer we have gone appointment to appointment.

 

Did Dr. K suggest any supplements? We have cut them out mostly and I wonder if some are good for the brain/basal ganglia repair? I really wish he would take fish oils.

 

Thanks.

Michele

 

The phone consult was helpful in many ways for me. I was still trying to decide if my son was PANDAS. I had one doctor saying no, but she was basing this on titers only. Dr. K confirmed my suspicion that it was PANDAS. As far as treatment, he can not prescribe with the phone consult. I expressed my concern about not being able to find a doctor here that would prescribe and he said "Find one!" Of course he could prescribe if we went to Chicago, but he never even mentioned or pushed that. I was the one who brought that up. For us, it was his vast knowledge of titers, behaviors of PANDAS kids, etc. that has seemed to be right on. My son has seemed to follow what he said would happen in his experience. Since being on antibiotics, the tics have mostly teetered off, but the separation anxiety seems to be hanging on longer. I have also found him to be very good about returning emails promptly. We only had the one phone consult, but I have emailed him many questions and he promptly responds even though we are not even probably technically a patient of his. His answers are always formed in' "in my experience" type format. Yet, they always seem to be right on with what happens with my son. We are considering going to Chicago as he just seems so knowledgeable and "in my experience" (ha, ha) a wonderful doctor. I know of another mom who also did the phone consult with him and found it very valuable even though she had spoken with various other doctors. I guess I dont know if he would give you any new info. Michelle as I know you have also taken your son to some of the best. For me, starting the PANDAS road, he was great!!!

[bmom]

To me he did not. I forgot to ask and we took up most of the hour discussing my sons history. I know to the other mom I discussed, he said Vit. C, Vit. B, Fish Oil, probiotics, and a few more. I think E. Anyway, I dont know if the IVIG makes you nervous, but he is very thorough and discusses these too. I was very unsure of them, but it doesnt sound as bad as I thought. He says that it retrains the immune system and repairs nerve damage. Some times the antibiotics do not control the syptoms enough.

[michele]

What supplements are you using now? Does he say the IVIG controls the symptoms or cures the PANDAS? Since antibiotics don't fix the problem it would be good to be over these episodes. Right now my son still gets minor symptoms, mostly emotional, from immune taxation or strep exposure that wax and wane. However he is now delayed in many areas. Have others found that in young kids they end up with fine and gross motor delays and have some issues with phoneme awareness? We have spent the whole summer in occupational therapy, handwriting camp, tutoring, and summer school Reading. We are having a test next week to see if there is auditory processing issues. I recently also got him glasses and found out he has visual motor delays also. It has been a busy summer!

To me he did not. I forgot to ask and we took up most of the hour discussing my sons history. I know to the other mom I discussed, he said Vit. C, Vit. B, Fish Oil, probiotics, and a few more. I think E. Anyway, I dont know if the IVIG makes you nervous, but he is very thorough and discusses these too. I was very unsure of them, but it doesnt sound as bad as I thought. He says that it retrains the immune system and repairs nerve damage. Some times the antibiotics do not control the syptoms enough.

[P_Mom]

I can answer the first question.....in properly diagnosed cases, IVIG can be expected to end in a complete cure.

[Buster]

Dear thnksmom:

 

A couple of quick comments regarding Dr. Singer's paper in the June issue of Pediatrics. It appears that Dr. Singer is using (or provided) a subset of the sample data from the 2 year study summarized in the Kurlan paper appearing in the same issue.

 

I have a long list of issues with both studies, but let me list the 5 big ones here.

 

1) This is not a study of sudden onset, but rather one of studying children who have chronic conditions. 75% of the subjects in the proported PANDAS group were diagnosed with TS (a condition requiring symptoms for > 1 year and requiring no remission for > 3 months), 87.5% of those in the control group were diagnosed with TS. Thus the critical item is what separates the PANDAS group from the TS group.

 

2) The separation critieria used by Kurlan for selecting the PANDAS patients was different from the diagnostic criteria proposed by Swedo. Kurlan used a "clinical course characterized by the abrupt onset of symptoms or by a pattern of dramatic recurrent symptom exacerbations and remission". Swedo used an "Episodic course characterized by acute, severe onset and dramatic symptom exacerbations." (emphasis added) While these sound similar, they are not. Indeed the episodic nature is the key distinguishing element in Swedo's studies as is the severity of the symptoms. Swedo wrote in her May 2003 response to Kurlan, "The episodic, relapasing-remitting course of the PANDAS subgroup is distinctly different from the undulating, waxing-waning course seen in other patients with OCD or tic disorders." In addition, Singer discloses that the average onset was over 4 years prior to his study. Kurlan discloses that the onset was not from documentation, but rather obtained through interviews thus being very prone to recall bias. So it is unclear whether the proported PANDAS subjects met the Episodic course, the severe onset, and the dramatic symptom exacerbations of the Swedo critieria.

 

3) The subjects attributed to be PANDAS subgroup in the Kurlan study had a CY-BOCS score that changed only 1.6 [-0.4 to 3.6] with controls changing 1.0 [-1.1 to 3.1]. This is hardly episodic given the baseline CY-BOCS scores and certainly does not indicate remission within the 2 year period but rather the small waxing and waning of OCD symptoms and the limited objective accuracy of the CY-BOCS measure. Swedo subjects often exhibited > 15 points of change in CY-BOCS score. Granted, I have some issues with these studies as well, but this 10 fold difference in CY-BOCS measured exacerbations definitely makes one wonder if these are the same subgroups.

 

It is true that the subjects in the Kurlan study had YGTSS-tic exacerbations of 11 pts [4.2-17.9] and certainly this is significant, but most of the other papers on PANDAS focus on the OCD element and less on the tics. This begs the question whether tic-only exacerbations should be treated as the "episodic course" or "dramatic symptom exacerbation" when OCD scores did not move.

 

4) Many of the subjects in Kurlan's and Singer's studies were on numerous anti-psychotics, alpha-agonists, mood stabilizers, ... and it was very unclear how these variables were controlled.

 

5) The subjects in the Kurlan study were 11.0 +- 1.7 (i.e., older than almost all Swedo/Snider patients). In the Singer study, the children were listed as being 10.9+-2.5 with a full year difference in the controls 11.8 +-2.3. Almost all Swedo/Snider patients had a mean age of 7.5.

 

So the key question is how many of the kids in Kurlan's and Singer's studies actually had PANDAS as opposed to being kids with severe Tourettes with the unfortunate waxing/waning of tics associated with Tourette symptoms.

 

Please note, that despite my criticism of the studies, I am impressed with the Kulan's study and think the data collected from such a study will be extremely valuable to all sorts of post-study analysis. My difficulty is rather with the critieria of subject selection. No OCD episodic behavior, no documented sudden onset (recall bias only), chronic conditions existing in most cases for > 4 years, older children less prone to strep, ...). Hence the study is a great study of streptococcal relationships in Tourettes, but the lack of episodic OCD behavior makes me doubt that their net caught PANDAS cases.

 

Regards,

 

Buster

 

I was reduced to tears today at the peds. neuro appointment. Just when I thought we were getting somewhere with our son's primary physicians understanding and believing what we were saying, we go to this new dr. (appt set up months ago when tics started by our ped). He said that if I would follow the work of Harvey Singer who is "the foremost expert on PANDAS" I would know that his studies prove that tics are not caused by strep. So, I researched Dr. Singer to find that he cannot PROVE the connection, although he continues to ask for further studies (to me that means he cannot disprove the theories). He admits that tics can be exacerbated by strep (although not caused by strep), stress, fatigue, etc. but does not approve of using prophylactic antibiotics (which we are not on, but I would not be against). His most recent findings were published on June 8th. (http://www.hopkinschildrens.org/newsDetail.aspx?id=4914)

 

The peds neuro we went to is very well respected in this area. He went on to say that Azith is of no use as an immunomodulator and seemed to belittle me when I respectfully) questioned that. I also researched that when I got home and found a 2004 report that was released about the immunomodulator qualities of Azith. He did say that some children take Haldol and other drugs for tics, but that he didn't see the need for my son because he is perfectly normal. It didn't matter that he has had major tic outbreaks three times and all three times he responded well to antibiotics, in this doctor's mind there is no such thing as a relationship between strep and tics.

 

I am hoping that this physician's viewpoint does not sway my primary physician, as I really need him on my team for this. We are fighting a huge uphill battle, and will continue, and next it will be with insurance coverage of this disorder that my son shows all the signs of but that really doesn't exist. . .

 

Just needed to vent-- hopefully we will hear from Dr. Murphy this week, because I am ready to fly to Florida for someone who doesn't have to question logic left and right, but that will just help us navigate through this very complex maze!

[lss]

Hi,

 

I am new to this forum, but believe my son has PANDAS. My ped doctor first thought it was then decided it might be tourettes. I took him to a neurologist and he said there really was no difference from PANDAS and tourettes. My son has all the signs of PANDAS and as I look back on his medical history when this first started all point to PANDAS. I cannot find a doctor in the Dallas area who knows or will give antibiotics for it. I too found Dr. TK Murphy in Florida thru the internet and am wondering if you have talked with her or if you have seen her. I did speak with someone at Duke University who is willing to see our son and said that the treat children with PANDAS, but we would have to wait until summer time to have the time to stay there for 2 weeks. We also took our son to see a psychiatrist who put him on Clonidine and after the first dose, his vocal tics got worse and it brought on motor tics as well. She is changing the RX to Tenex, has anyone heard of this? Both these meds are suppose to help with the tics, but are used for adults for high blood pressure. I too am ready to fly to Florida or to North Caroline to see the Drs. One other thing, does anyone know if the doctor in Chigaco, "Dr. K" ever been published in the medical journals. I was told that unless his theories or treatments have been medically published and not just "lay mens published" I should find out more info about his treatments.

 

Thank you all for any info.

lss

 

 

[/le

I was reduced to tears today at the peds. neuro appointment. Just when I thought we were getting somewhere with our son's primary physicians understanding and believing what we were saying, we go to this new dr. (appt set up months ago when tics started by our ped). He said that if I would follow the work of Harvey Singer who is "the foremost expert on PANDAS" I would know that his studies prove that tics are not caused by strep. So, I researched Dr. Singer to find that he cannot PROVE the connection, although he continues to ask for further studies (to me that means he cannot disprove the theories). He admits that tics can be exacerbated by strep (although not caused by strep), stress, fatigue, etc. but does not approve of using prophylactic antibiotics (which we are not on, but I would not be against). His most recent findings were published on June 8th. (http://www.hopkinschildrens.org/newsDetail.aspx?id=4914)

 

The peds neuro we went to is very well respected in this area. He went on to say that Azith is of no use as an immunomodulator and seemed to belittle me when I respectfully) questioned that. I also researched that when I got home and found a 2004 report that was released about the immunomodulator qualities of Azith. He did say that some children take Haldol and other drugs for tics, but that he didn't see the need for my son because he is perfectly normal. It didn't matter that he has had major tic outbreaks three times and all three times he responded well to antibiotics, in this doctor's mind there is no such thing as a relationship between strep and tics.

 

I am hoping that this physician's viewpoint does not sway my primary physician, as I really need him on my team for this. We are fighting a huge uphill battle, and will continue, and next it will be with insurance coverage of this disorder that my son shows all the signs of but that really doesn't exist. . .

 

Just needed to vent-- hopefully we will hear from Dr. Murphy this week, because I am ready to fly to Florida for someone who doesn't have to question logic left and right, but that will just help us navigate through this very complex maze!

[Chemar]

Hi and welcome

 

I just wanted to give you contact info for Dr Murphy who is now at University of South Florida (Tampa-St Petersburg area) and the phone # is 1-727-767-8291

 

although there are many areas of overlap between Tourette and PANDAS and some kids may have both, yet the treatment protocol for PANDAS kids is very different for those with "regular" Tourette (ie without complications caused by strep)

 

the PANDAS parents will be able to weigh in for you here as well, but I did just want to mention that, as a mom and wife to guys with genetic Tourette, I feel there is a big difference between the two conditions, and so strongly disagree with the view of that neurologist who suggested to you that they are "the same"

 

I do hope you will find the answers you are seeking to help your child, and I sure know you will receive much support here

[michele]

Hi Iss,

 

I have had the same issues with diagnosis from a neurologist for many years. Finally after five years our ped neurologist started treating my son with meds Abilify (very much like Tennex) after his symptoms got worse after many strep infections and the tics lasted for a year. However, the neurologist is an awesome tourettes Dr. but he doesn't believe PANDAS because of skeptical research articles. We did see Dr. Murphy in Florida and she felt he was classic PANDAS she did recommend Tennex and antibiotics omnicef pen vk or augmentin during strep infections. Also she suggested strep testing whenever anyone in the house had a sore throat. ( there is 6 of us so tht is weekly) Be aware she won't prescribe the drugs. You have to take her recommendations back to your Dr. She did write a script for OT and that has helped alot with his dystonia. I found an immunolgist who prescribed the omnicef long term and he is much better now on it. Before, he had the frequency to urinate feeling, compulsions, tics, emotional meltdowns, seperation anxiety, and sleep issues, attention trouble. Now on the Omnicef and abilify 5 mg he is happier, easier going, sleeps great, ocd is down but not gone. We might add zoloft later because he is still emotional tantrums when he doesn't get what he wants (Obsessions). Now we are seeing a psych Dr. and he doesn't believe he is PANDAS either because of the neurologist's opinions. He believes the behaviors he shows are voluntary. My son is great at school and doesn't lose his temper for other people. Dr. thinks it is learned behaviors that we have given into. His badgering to get stuff is endless. It is like compulsive. Since his tics are cracking his hands and feet the Dr. says that is voluntary also. He does do vocal shrieks only at home too.

 

My question is do the other kids with PANDAS control these tics/obsessions or are they involuntary? How do you tell in a six year old if he is controling them or not? Dr. thought it would look more like a seizure if he wasn't in control? What about the tourttes kids do they have control over their tics? He told me to treat him as normal as possible and not give in to his bad behaviors. What do you think? I think the PANDAS can turn into tourettes symptoms from repeat strep infections and damage to the basal ganglia. My son has symptoms of both disorders. Or can Tourttes kids just have immune issues that look like PANDAS? It is all very confusing. My son waxes and wanes also. He is doing much better now.

 

Try Dr. Murphy she is the best PANDAS or tourettes Dr. and has participated in all the studies with Sweedo. She is very informative and replies to emails.

 

Michele

 

Michele

Hi,

 

I am new to this forum, but believe my son has PANDAS. My ped doctor first thought it was then decided it might be tourettes. I took him to a neurologist and he said there really was no difference from PANDAS and tourettes. My son has all the signs of PANDAS and as I look back on his medical history when this first started all point to PANDAS. I cannot find a doctor in the Dallas area who knows or will give antibiotics for it. I too found Dr. TK Murphy in Florida thru the internet and am wondering if you have talked with her or if you have seen her. I did speak with someone at Duke University who is willing to see our son and said that the treat children with PANDAS, but we would have to wait until summer time to have the time to stay there for 2 weeks. We also took our son to see a psychiatrist who put him on Clonidine and after the first dose, his vocal tics got worse and it brought on motor tics as well. She is changing the RX to Tenex, has anyone heard of this? Both these meds are suppose to help with the tics, but are used for adults for high blood pressure. I too am ready to fly to Florida or to North Caroline to see the Drs. One other thing, does anyone know if the doctor in Chigaco, "Dr. K" ever been published in the medical journals. I was told that unless his theories or treatments have been medically published and not just "lay mens published" I should find out more info about his treatments.

 

Thank you all for any info.

lss

 

 

[/le

I was reduced to tears today at the peds. neuro appointment. Just when I thought we were getting somewhere with our son's primary physicians understanding and believing what we were saying, we go to this new dr. (appt set up months ago when tics started by our ped). He said that if I would follow the work of Harvey Singer who is "the foremost expert on PANDAS" I would know that his studies prove that tics are not caused by strep. So, I researched Dr. Singer to find that he cannot PROVE the connection, although he continues to ask for further studies (to me that means he cannot disprove the theories). He admits that tics can be exacerbated by strep (although not caused by strep), stress, fatigue, etc. but does not approve of using prophylactic antibiotics (which we are not on, but I would not be against). His most recent findings were published on June 8th. (http://www.hopkinschildrens.org/newsDetail.aspx?id=4914)

 

The peds neuro we went to is very well respected in this area. He went on to say that Azith is of no use as an immunomodulator and seemed to belittle me when I respectfully) questioned that. I also researched that when I got home and found a 2004 report that was released about the immunomodulator qualities of Azith. He did say that some children take Haldol and other drugs for tics, but that he didn't see the need for my son because he is perfectly normal. It didn't matter that he has had major tic outbreaks three times and all three times he responded well to antibiotics, in this doctor's mind there is no such thing as a relationship between strep and tics.

 

I am hoping that this physician's viewpoint does not sway my primary physician, as I really need him on my team for this. We are fighting a huge uphill battle, and will continue, and next it will be with insurance coverage of this disorder that my son shows all the signs of but that really doesn't exist. . .

 

Just needed to vent-- hopefully we will hear from Dr. Murphy this week, because I am ready to fly to Florida for someone who doesn't have to question logic left and right, but that will just help us navigate through this very complex maze!

[lss]

Thank you for any information you can provide. We do not have anyone in the family both on my side or my husbands side of the family that has/had tourettes and therefore I do believe that my son has PANDAS. After looking back on his medical history, it all points to PANDAS, all of his symptoms. We moved from Florida (can't believe Dr. Murphy is there and we are not!) to Dallas and you would think that in a big town like Dallas someone would know about PANDAS. His symptoms started in PRE-K when he was 6 with the eye blinking soon after he had sinus/strep infection. Then again his tics, this time vocal tics after vaccinations prior to moving to Texas. Since moving here in July of 07, he had a strep infection in Dec, then another one in March, and then another one in June. Neurologist suggested we remove his tonsils, which we did, and his tics stopped for a short time and are back after a psychiatrist prescribed clonidine(which is for high blood pressure). After 1/2 a pill his tics went thru the roof! The psychiatrist is now asking us to try tennex (not sure of spelling). Today we went to see another doctor who is more open to trying antibiotics, steroids and is willing to call a Dr. K in Chicago to find out more information about IVIG. What does Dr. Murphy think about IVIG? I'm hoping that she is the doctor we have been praying for.

 

Thanks again,

Linda

Hi and welcome

 

I just wanted to give you contact info for Dr Murphy who is now at University of South Florida (Tampa-St Petersburg area) and the phone # is 1-727-767-8291

 

although there are many areas of overlap between Tourette and PANDAS and some kids may have both, yet the treatment protocol for PANDAS kids is very different for those with "regular" Tourette (ie without complications caused by strep)

 

the PANDAS parents will be able to weigh in for you here as well, but I did just want to mention that, as a mom and wife to guys with genetic Tourette, I feel there is a big difference between the two conditions, and so strongly disagree with the view of that neurologist who suggested to you that they are "the same"

 

I do hope you will find the answers you are seeking to help your child, and I sure know you will receive much support here

[P_Mom]

Linda,

I had been in contact with Dr. Murphy a bit back and asked her if she used IVIG. She does not....she said she would use IVIG if a child had an IGG deficiency..not for PANDAS. She didn't give any reason why. I do know she suggests antibiotics for PANDAS....and Tennex if needed. I do think I have read here on this forum that she relies heavy on titer levels for a PANDAS diagnosis (which many of us have PANDAS kids with negative titers)....although I do believe it was either Dedee's son or Ronna's son who was diagnosed by her on response to antibiotics alone.???

 

It is really all very confusing....

I would suggest just to do your research and gather as much info. you can from parents with first hand PANDAS experience...then, find a doc who is willing to implement the treatments that YOU have decided would best help your child.

 

Dr. Murphy may very well be the doc you are seeking....

 

for myself, I was looking for a doc who would look outside titers and would be willing to implement IVIG if necesary.

For us, we found dr.K to be very helpful.

 

I posted his website before....here it is again if you missed it.

 

http://www.webpediatrics.com

[Chemar]

your are welcome Linda

 

Dr Murphy has been at the forefront of PANDAS research for many years and so I really do feel she would be very up to date on treatments and also the safety issues related to them. I dont personally know whether she offers IVIG but I have no doubt she would know a lot about it. her treatment and diagnostic protocols may have changed a lot as it is 8 years since we saw her

A number of parents here have taken there kids to her with reports of being very satisfied

As she is the only PANDAS doc I have had personal experience with, I cant compare her to any others

 

you could also call her office and see if perhaps they have any info on docs in Texas that are clued up on PANDAS

 

we really liked Dr Murphy a lot and again, her track record as being at the forefront of the research for so many years really does make her a very solid source for information. She has numerous published research papers in highly respected publications and also is on the TSA advisory board etc. Her credentials are stellar and as I mentioned above, she also is a really caring person with a clear desire to help kids.

 

I do just want to mention that I am posting this info as a parent whose child saw dr Murphy only. this is in NO WAY an ACN/Latitudes "endorsement" just my opinion and experience

 

 

 

Thank you for any information you can provide. We do not have anyone in the family both on my side or my husbands side of the family that has/had tourettes and therefore I do believe that my son has PANDAS. After looking back on his medical history, it all points to PANDAS, all of his symptoms. We moved from Florida (can't believe Dr. Murphy is there and we are not!) to Dallas and you would think that in a big town like Dallas someone would know about PANDAS. His symptoms started in PRE-K when he was 6 with the eye blinking soon after he had sinus/strep infection. Then again his tics, this time vocal tics after vaccinations prior to moving to Texas. Since moving here in July of 07, he had a strep infection in Dec, then another one in March, and then another one in June. Neurologist suggested we remove his tonsils, which we did, and his tics stopped for a short time and are back after a psychiatrist prescribed clonidine(which is for high blood pressure). After 1/2 a pill his tics went thru the roof! The psychiatrist is now asking us to try tennex (not sure of spelling). Today we went to see another doctor who is more open to trying antibiotics, steroids and is willing to call a Dr. K in Chicago to find out more information about IVIG. What does Dr. Murphy think about IVIG? I'm hoping that she is the doctor we have been praying for.

 

Thanks again,

Linda

Hi and welcome

 

I just wanted to give you contact info for Dr Murphy who is now at University of South Florida (Tampa-St Petersburg area) and the phone # is 1-727-767-8291

 

although there are many areas of overlap between Tourette and PANDAS and some kids may have both, yet the treatment protocol for PANDAS kids is very different for those with "regular" Tourette (ie without complications caused by strep)

 

the PANDAS parents will be able to weigh in for you here as well, but I did just want to mention that, as a mom and wife to guys with genetic Tourette, I feel there is a big difference between the two conditions, and so strongly disagree with the view of that neurologist who suggested to you that they are "the same"

 

I do hope you will find the answers you are seeking to help your child, and I sure know you will receive much support here

 

[lss]

Thanks P.Mom,

 

Trust me I have done research and then some, but have been unable to find any doctors here in Dallas, of all places. My concern with seeing Dr. Murphy, albeit she was at the forfront of PANDAS research, is that she is a psychiatrist and does prescribe Tennex, this drug is for High Blood pressure in adults and is used for children with ADHD. My son does not have ADHD, he has severe tics. I'm wondering how long the children are put on the Tennex, is this short term and does anyone know if children ever outgrow these symptoms?

 

I'm willing to see Dr. Murphy, but would like a more permenant solution to this than drugs. Are you presently seeing Dr. K in Chicago and if so, do you live in the area, or how often do you have to fly there to see him. Has your child had IVIG with Dr. K and if so, how is your child doing and reacted to the procedure?

 

Again, any information I can get is much appreciated.

Linda

Linda,

I had been in contact with Dr. Murphy a bit back and asked her if she used IVIG. She does not....she said she would use IVIG if a child had an IGG deficiency..not for PANDAS. She didn't give any reason why. I do know she suggests antibiotics for PANDAS....and Tennex if needed. I do think I have read here on this forum that she relies heavy on titer levels for a PANDAS diagnosis (which many of us have PANDAS kids with negative titers)....although I do believe it was either Dedee's son or Ronna's son who was diagnosed by her on response to antibiotics alone.???

 

It is really all very confusing....

I would suggest just to do your research and gather as much info. you can from parents with first hand PANDAS experience...then, find a doc who is willing to implement the treatments that YOU have decided would best help your child.

 

Dr. Murphy may very well be the doc you are seeking....

 

for myself, I was looking for a doc who would look outside titers and would be willing to implement IVIG if necesary.

For us, we found dr.K to be very helpful.

 

I posted his website before....here it is again if you missed it.

 

http://www.webpediatrics.com

[P_Mom]

Hi Linda,

 

I think there is much hope for these kids growing out of this...unfortunately, there is not much follow-up for PANDAS as this is a new area of research. I think the chance for tics, in particular, to diminish or even disappear with age is very good...although I am not so sure about the other symptoms, particularly anxiety. I have heard from a Mom whose daughter basically went into "remission" when she hit puberty, but, she holds onto a bit of anxiety.

 

We have seen dr.K personally..we took the 8 hour drive this past August. We could not find any docs in our area either to help us. (we live in Pittsburgh) His experience with and knowledge of PANDAS is remarkable. It was so very refreshing to go to a doc and have him look at me and say, " I understand your anxiety. " He said this to me! He understood! All the other docs looked at me like I was nuts! He also had great insight as to what these kids were dealing with.

He put my kids on prophylactic Augmentin and told us to do probiotics as well. We are to follow-up in 6 months and go from there.

(unless there is a need to see him earlier....praying there is not) He says my younger son has a 1 in 2 chance of needing IVIG...and my older son, a 1 in 4. If the need arises, we would not hesitate to do IVIG. I do know of several parents who have had their children do IVIG with dr.K and had great results! I could possibly give you some contact info. if you would like.

 

dr.K is great about keeping in contact with his patients.....e-mail him with any questions you may have.... he'll get back to you the same day.

 

Hope this helps.

 

Kelly