question for all that can help

[bmom]

I am just trying to figure this all out. My son had an abrupt onset of tics in Feb. after a 3 day illness and soar throat. Literally can tell you the time and they were frequent and had many different. Started vitamins and changed diet and they diminished. Have been gone until the last 3 weeks. He began what I believe to be an eye squinting and blinking although not hard blinks and mostly when watching tv and in sun. This week he had a stomach bug. Also lax with diet during Halloween. I am wondering if I should think of this as possibly PANDAS or not? My husband does have some minor tics that seem to be consistent. I just dont know if my son seems more like a PANDAS case or not. My son has had strep a few times and they considered taking his tonsils once. Do you think I should look at as PANDAS or no? Thanks to all that can add input.

[bmom]

I also just called Dr. Albert Robbins office and found out that I can do a phone consult for $75. Has anyone ever done this and do you think it would be helpful? Does anyone know if I could do the testing from a different location or do we have to travel to Florida? We live far away, yet I am willing to travel if needed. Would Dr. Robbins be one of the best to see for this?

[LisaM]

Hi bmom,

 

I too am trying to figure this PANDAS thing out. I feel like there are 3 groups of people on this forum: those who know for sure their kids have TS (genetic most likely), those who had sudden onset of symptoms after strep or illness (PANDAS) and are clearly helped by antibiotics, and a group who is just not sure.

 

I do wonder if the whole spectrum of tic disorders, whether genetic or not, can be triggered by illness, detected or not.

 

I have come to learn that my daughter is pretty much asymptomatic for strep which leads me to believe we missed it in the past.

I am trying to figure out the whole antibiotic connection... does it work for those whose titers are normal and test negative for strep but have a flare up of symptoms- does it only work in those who have that definite strep connection from the first onset?

 

bmom, did you have your son tested for strep in Feb. when it started? How about in the last 3 weeks? Since your husband tics I would say there is that definite probability of genetic influence. But again, you mentioned that your son has had strep alot in the past. Is there a connection to strep? PANDAS criteria states sudden onset after proven strep, but I'm not sure that it can't be a bit more subtle than that. Sudden and severe or other definite symptoms that don't get linked to strep- not so severe perhaps that they may not be attributed to strep etc. esp. if a child doesn't have classic symptoms of strep. ????

 

I know I haven't helped you any... but I think many of the parents here are on the look out for the strep connection...

 

I would definitely recommend having your son tested for strep whenever you may suspect it - sore throat, symptom flare, behavioral changes etc.

 

Lisa

 

Lisa

[bmom]

In Feb. he did seem to have symptoms of strep, yet he hadn't had it in 3 yrs. so I didn't take him in thinking he was just ill. 10 days after the illness is when the tics broke out. I didn't know of the strep connection nor did his pediatrician so I did not immediately have him tested. I did have his titres run about 3 mo after when tics were nearly gone after reading of the connection and they came back normal. I did have him swabbed this week and it came back neg. He did not have a fever. I was wrong about Dr. Robbins. I called to schedule the phone consult and they said he would have to be seen first. My husbands family said he had trouble with tonsilitus as a youngster. I am not sure if it could have been strep or not.

[michele]

Who is this Dr. Robbins?

Does he specialize in tics? or PANDAS? Dr. Murphy is one of the leading researchers in the country.

 

If you want a phone consult you could call Dr Demio who is our DAN Dr. He is very knowledgeable on PANDAS and autoimmune disorders and autism. Here is his link. He is expensive but very helpful. http://www.drdemio.com/

 

We have done phone consults with him. We did meet with him once in person though. He orders all the appropriate blood work and then recommends supplements and treatments and has a folllow up consult to review findings. He has wonderful credentials. We see him for autoimmune problems originating from strep PANDAS disorder now causing metabolic disorders and heavy metals and yeast build up.

 

This was sent to me thanks to Mustang Carol.

 

NEWS RELEASE

For Immediate Release – November 16, 2007

 

US Autism and Asperger Association Names New Chief Medical Officer

 

Salt Lake City, UT – US Autism and Asperger Association (USAAA), one of the largest voluntary autism and Asperger organizations in the United States and a world leader in providing education for interventional treatment options, today announced the appointment of Phillip C. DeMio, M.D. as Chief Medical Officer. This position is the Association's most senior clinical advisor, providing management oversight of the organization's research, surveillance, epidemiology and international programs. The Chief Medical Officer frequently serves as chief spokesperson regarding medical and scientific policy issues for this global nonprofit association.

 

"We are pleased to have Dr. DeMio on board to help lead USAAA's clinical strategy and look forward to his many contributions," said USAAA's Executive Director L.P. Kaplan, Ph.D. "Dr. DeMio's' impressive credentials and medical expertise will be invaluable to us as we all work together to help health care practitioners implement biomedical interventions, along with behavioral and developmental therapies to enhance the quality of the lives of individuals on the autism spectrum."

 

Dr. DeMio is board-certified by the American Board of Emergency Medicine. He received his M.D. from the Case Western Reserve University School of Medicine with honors in Neurosurgery, Endocrinology/Metabolism, Advanced OB/GYN, and Advanced Internal Medicine. Dr. DeMio has been a faculty member at several teaching hospitals including Case Western University School of Medicine and the Cleveland Clinic Foundation. He is accredited by the Teaching System of U.S. Armed Forces Medical Core and his career includes an emphasis on toxicology.

 

Dr. DeMio's accredited speaking appearances include the topics of brain toxicology, nutrition, and the use of supplements for children and adults given at major U.S. universities. He is a frequent presenter at autism conferences and his publications include articles on inflammation, acute and chronic injuries, and recovery.

 

 

I also just called Dr. Albert Robbins office and found out that I can do a phone consult for $75. Has anyone ever done this and do you think it would be helpful? Does anyone know if I could do the testing from a different location or do we have to travel to Florida? We live far away, yet I am willing to travel if needed. Would Dr. Robbins be one of the best to see for this?

[bmom]

Dr. Robbins is one that was interviewed in Sheila Rogers book and I believe Carolyn sees him. Will Dr. Demio do a phone consult without seeing the patient first? Do you think anyone can determine if it is a case of Pandas or Tourettes? My son also has allergy/ asthma will he look at that angle as well?

Michelle- Has Dr. Demio's suggestions helped your son yet?

[michele]

Dr. Demio will do phone consults for those who can't travel. He will do an extensive background history of your entire family. Very complete. He definately takes allergies into account. However be prepared to be put on a gluten free diet. That was the first thing he suggested. He is very proactive. He has put my son on many supplements. My son has improved his mood alot since starting with Dr. Demio. Knuckle cracking is still there. Dr. Demio believes alot of the problems my son is having came from vaccines and a genetic predisposition for neurological trouble. Check out autism one radio where he speaks monthly. http://www.autismone.org/radio/

 

 

I have the Rogers Book and I will check it out. We see Dr. Erenberg who is also interviewed in her book too. However he is not supportive of the diet or natural alternative medicines. Dr.Murphy was the only Dr. who would diagnose PANDAS. Others are very skeptical of the syndrome. All the best.

Michele

 

Dr. Robbins is one that was interviewed in Sheila Rogers book and I believe Carolyn sees him. Will Dr. Demio do a phone consult without seeing the patient first? Do you think anyone can determine if it is a case of Pandas or Tourettes? My son also has allergy/ asthma will he look at that angle as well?

[Dedee]

bmom,

 

Did I understand that the original symptoms occured within 10 days of the strept infection? That is considered to be a common time to see PANDAS flare ups. Just because you did not see actual strept with the next episode of symptoms does not mean you still are not dealing with PANDAS. My son would have OCD and emotional issues that would peak during the winter months even when his strept cultures were negative. Of course when he did actually develop a strept infection it would become horrible. This went on for a couple of years and we really did not have any idea of what was going on and actually punished him at times for his behavior. It wasn't until the development of his tics that we got the proper diagnosis and moved forward until we received the correct treatment.

 

I know how difficult it is to struggle as you try to find a diagnosis for your son. I would not completely rule out PANDAS. You should try to find an expert in the field of tics and autoimmune issues and give a complete medical history. I am sure that you can get some answers and some piece of mind. In the mean time start keeping written records of his behavior on a calendar and record his illnesses so that you can see any association between the two. It helps to have that when you go to the office. I hope you are able to get some answers soon. Good luck.

 

Dedee

[michele]

Our symptoms came out much like Dedee's son's did. The original episode came on at the same time as strep. Then we saw an increase in symptoms with illnesses or strep. We also saw symptoms worsen during strep season. We did not always have strep documented or checked. Like Dedee we did not always see what was going on. We also thought he was just a behavior problem for a time. However I went back and documented each episode. It really helped when we went to the Dr.'s and presented our problems. It has been a long exhausting road. I often feel alone and like the Dr.'s have not been very helpful. However the people here are wonderful and informative. PANDAS flare ups often resemble tic wax and wane cycles. Especially since our kids often don'w show signs of sickness just episodes where their behaviors change. Also knowing to test others around them for strepduring flare ups is important.

Michele

bmom,

 

Did I understand that the original symptoms occured within 10 days of the strept infection? That is considered to be a common time to see PANDAS flare ups. Just because you did not see actual strept with the next episode of symptoms does not mean you still are not dealing with PANDAS. My son would have OCD and emotional issues that would peak during the winter months even when his strept cultures were negative. Of course when he did actually develop a strept infection it would become horrible. This went on for a couple of years and we really did not have any idea of what was going on and actually punished him at times for his behavior. It wasn't until the development of his tics that we got the proper diagnosis and moved forward until we received the correct treatment.

 

I know how difficult it is to struggle as you try to find a diagnosis for your son. I would not completely rule out PANDAS. You should try to find an expert in the field of tics and autoimmune issues and give a complete medical history. I am sure that you can get some answers and some piece of mind. In the mean time start keeping written records of his behavior on a calendar and record his illnesses so that you can see any association between the two. It helps to have that when you go to the office. I hope you are able to get some answers soon. Good luck.

 

Dedee

[bmom]

My problem is I dont know if it was strep as he was sick with a fever and soar throat, but since he hadnt had strep in such a while I didnt take him in to Dr. -biggest mistake of my life. After a few days of being home, the fever, soar throat went away and 10 days later tics came on. My daughter got sick around the time the tics came and I took her in for swab, not culture which was neg. 3 months later we all came down with strep. My son had it first with frequent urination- checked for bladder infec. as he said he felt he had to pee but couldn't. no tics as I took him in right away this time and got on antibiotics. Not really any tics I could say for sure until now which I still am trying to determine, yet seems like they are only with tv and bright light or sun. I have been reading about digestive enzymes and these seem like they would be a biggie. Can they be harmful if not needed or only beneficial?

Thanks Michelle for all the wonderful info.

[P_Mom]

My problem is I dont know if it was strep as he was sick with a fever and soar throat, but since he hadnt had strep in such a while I didnt take him in to Dr. -biggest mistake of my life. After a few days of being home, the fever, soar throat went away and 10 days later tics came on. My daughter got sick around the time the tics came and I took her in for swab, not culture which was neg. 3 months later we all came down with strep. My son had it first with frequent urination- checked for bladder infec. as he said he felt he had to pee but couldn't. no tics as I took him in right away this time and got on antibiotics. Not really any tics I could say for sure until now which I still am trying to determine, yet seems like they are only with tv and bright light or sun. I have been reading about digestive enzymes and these seem like they would be a biggie. Can they be harmful if not needed or only beneficial?

Thanks Michelle for all the wonderful info.

Hi,

My name is Kelly and I am dealing with PANDAS too as of this August. One thing I do know and I noticed in your post, if there is only a sore throat, fever (sometimes), it can very likely be strep. It is usually not strep if the sore throat is accompanied with runny nose, stuffy nose, cough, congestion, etc. The more cold symptoms, the less likely strep. Is your son currently on a preventative antibiotic? I purchased at home strep testers, which help, but, I do not rely on them totally. Anyway, I hope us PANDAS moms stay posted and help each other along this difficult journey.

 

Kelly

[michele]

We take AFP Peptizyde digestive enzymes by Houston. They were one of the first supplements we tried. They support digestion and elimination of undesired protein. How is your son's diet? How is his size for his age? My son is very tiny and had some dietary issues. We started with one half per day and then went up to one in ten days. Now he is gluten free.

 

Don't beat yourself up on the strep culture. My son could have had it many times and I didn't know. He had this for three years before we really figured this all out. Now you know the urge to pee is the symptom. It is the first my son presents with. Then he gets very hyper and moody and hard to reason with. Next he starts to obsess on things and crack his joints more. I now know this is the sign to get him swabbed and the rest of us tested for strep. Even if he is neg we up him to a stronger antibiotic for three weeks. There are times with viruses that he got worse too. It is very difficult to know what to do when the Dr's don't seem to offer much support. Thinking of you.

Michele

My problem is I dont know if it was strep as he was sick with a fever and soar throat, but since he hadn't had strep in such a while I didn't take him in to Dr. -biggest mistake of my life. After a few days of being home, the fever, soar throat went away and 10 days later tics came on. My daughter got sick around the time the tics came and I took her in for swab, not culture which was neg. 3 months later we all came down with strep. My son had it first with frequent urination- checked for bladder infec. as he said he felt he had to pee but couldn't. no tics as I took him in right away this time and got on antibiotics. Not really any tics I could say for sure until now which I still am trying to determine, yet seems like they are only with tv and bright light or sun. I have been reading about digestive enzymes and these seem like they would be a biggie. Can they be harmful if not needed or only beneficial?

Thanks Michelle for all the wonderful info.

[Chemar]

Just FYI on Dr Robbins.....he is on the Latitudes/ACN advisory board and is and Environmental Doctor and very knowledgable (carolyn_lsc has been seeing him for a long time )

 

http://www.latitudes.org/brd_mem.html

 

when it comes to PANDAS however, in Florida, there is Dr Tanya Murphy at Shands Clinic in Gainesville.

She *specializes* in PANDAS, and is also knowledgable in many areas related to tics, TS and child neurology

http://www.psychiatry.ufl.edu/people/bios/murphy.htm

http://mdc.mbi.ufl.edu/murphy.htm

[faith]

I think it is possible that even though there is not the clear cut PANDAS connection or diagnosis, just the fact that there is strep or viral illness lurking, and I suppose there are antibodies involved in non-PANDAS as well, maybe that does contribute to a little waxing on tics or OCD or behavior, maybe just not as obvious or dramatic. ?? As I've mentioned a couple of times I thought this has happened (we are non-PANDAS as of now), so bmom, I guess I'm kind of in your category, trying to detect a connection, but titers are negative and I don't really see any dramatic changes in behavior or tics, except that one time last year that I have posted about and we did use antibiotics successfully (waxing does not necessarily mean dramatic--it may feel that way to us, but the criteria is usually alot more than that and maybe more than one tic). I have even asked the DAN doctor on our last visit if we could do the titers testing again as we did last year, but he said if it showed negative while he had tics, then it probably not an issue.

 

Michele, since you have started antibiotic, have you seen real improvement? I'm sometimes a little sketchy since you say he still does some finger cracking. But are most of the symptoms you noted under control? or do you wonder if this is all working for him?

 

Faith

[bmom]

Faith, does your son usually show tics on a daily basis or only during waxing? Have you considered going on antibiotics on a continued basis? How did you get your Dr. to do antibiotics during the waxing?

Michelle, How is your son currently? I know you had taken him to many Dr. -Dr. Murphy and Dr. Demio. Was there one thing that really helped-gluten free, antibiotics, etc.? I dont know if I should push for antibiotics as this is really his only 2 flare and although it did go along with him having a bug, the tics started a 2-3 weeks before he got the signs of sickness. Would that make sense? I also am trying to figure in my husband having some tics as well. Currently my son is doing Kids Calm at 1 1/2 tsp. a night, calcium, a multi vit., and during this waxing I added taurine the last 2 days. I am considering adding a digestive enzyme. Would this be advisable or no? There is a fine line of doing too much/yet not enough. His hair analysis showed he had trouble digesting carbs and sugar so I thought that the enzymes and probiotics would help with this and there are times he complains of his stomach hurting after eating although only on occasion. Would enzymes be a benefit -Kim, Chemar, or Michelle or anyone else on this? Could I avoid going gluten free by adding enzymes?