Saying Yeah! PANDAS OCD. Help!

[emma1]

I called my doctor after reading the information about antibiotics keeping the strep titres high. As I said, our doctor is not an expert, but he did not believe this would be true. But he said that PANDAS was a very complex issue, that doctors were really just learning about it, and so we couldn't truly be sure. So, I guess what he actually said was that he had not seen the studies showing that antibiotics would keep strep titres high, but that no one could answer all questions about PANDAS because a lot of research still needed to be done.

 

I am very hesitant to stop antibiotics. My child's quality of life is night and day while on and off antibiotics. It is the only thing that I have found that truly seems to help.

 

I am also cleaning up our diet, using a multivitamin, and using epsom salt foot baths in hopes of eventually stopping the antibiotics. I also use probiotics. Right now I am using Culturelle (but it does have whey in it which you would want to avoid if you are casein free). I did use one with a strep strain in it (by mistake) and it did increase symptoms. I am also determined to add omega 3 somehow.

 

I must admit, though, this new info on the harm of antibiotics is freaking me out. I certainly don't want to harm my child long term On another thread here, I also just read information that long term antibiotics can cause Crohn's disease!

 

Any of you who have seen Dr. Murphy, or another"expert," have they weighed in on this? I asked my doctor about seeing an expert, and while he was not opposed, he did say that I should not get my hopes up that they would have a "definitive" answer because he felt there was not one at this point. What to do?!?!?

[Chemar]

hi Emma

 

I am a bit confused by your post tho I may have missed something in previous posts

 

which ANTIbiotics "keep the strep titres high" ?? The antibiotics usually bring them down as far as I know?

Also,where did you read that longterm antibiotics can cause Crohn's?

The latest view on Crohn's is that it is caused by bacteria, and therefore antibiotics are used to HELP in some patients,

 

as I say, maybe I have missed something as I confess I havent read all posts

[P_Mom]

Hi. How do you tell if there is a strep strain in a probiotic? What is it listed as? My son doesn't like yogurt, but, he loves milk and drinks Dairy Smart, which has the same probiotics in it as yogurt does. Do you all think that is safe?

 

Kelly

[emma1]

Chemar, I do usualy read these posts when exhausted, but I thought that was the debate in this thread. I may be confused, and if so, I would absolutely love clarification. As I was reading, I saw that there was information that daily antibiotics were not a good idea, and then I saw Dedee "summary" in her post, and went from there.

 

Re the Crohn's, that came up in these posts -- PANDAS and Antibiotics -- I am bumping it up for you and others because it concerned me too.

 

I thank you for weighing in, as I can tell you have been at this a long time, and have a lot of knowledge and perspective on all of this.

[Dedee]

No, there have been not studies that show this. It was only someone who was theorizing. Which is an important thing to distinguish; someones theory vs. actual results of radomized trials performed at major research facilities.

 

Dedee

[bmom]

I am just curious, has anyone heard of or done antibiotics only when there is an increase in symptoms? For example, not daily, but when you see symptoms rise even if strep is negative. Is this something Dr. Murphy would consider? I asked my sons ped if we could give it a try and he said no. He would not be comfortable- then he went on later to say his son is on antibiotics for acne daily- oh I get it his son can take it daily, yet mine we cant even try once to see if it would help. Sorry for the negative tone. I told him we were willing to go to a specialist, but would he consider it if that is what she recommended- no clear answer there. I am wondering if we go all the way to Florida if it will be useless if he disagrees. Emma- be thankful for your ped.

[Dedee]

bmom,

 

I completely understand your frustration. Can you find another doctor? That was exactly my arguement at one time when I was trying to find someone to listen to me about my son. I said why is it that they will give antibiotics to a teenager for years while they have acne, but not to a 11 year old for tics. Is it maybe because this is something they simply can't understand? I just wish doctor's could think "outside the box" for just once and maybe get somewhere when it comes to actually finding a solution for these poor children. No one has even thought twice about my daughter being on antiobiotics for the last two years for a kidney problem. Heck, no one has even suggested we try her off of them. Well, I just wanted to let you know I share in your frustration. Good luck.

 

Dedee

[michele]

I know in our case, a letter from Dr. Murphy on her letterhead with her recommendations was worth a thousand words. Every Dr. we have seen who were sitting back idlely suddenly were willing to go the extra mile. If you can go there she is the expert in the field of tics and PANDAS. She also will really listen to you and talk and answer your questions. I had never thought of emailing her but I was amazed she even answered those as well. All I do now is call and say my son is having an increase in symptoms and they are...., then the Dr.'s call in the stronger antibiotics. Plus her info on OT and the prescription for OT are really going to help at school.

Michele

bmom,

 

I completely understand your frustration. Can you find another doctor? That was exactly my arguement at one time when I was trying to find someone to listen to me about my son. I said why is it that they will give antibiotics to a teenager for years while they have acne, but not to a 11 year old for tics. Is it maybe because this is something they simply can't understand? I just wish doctor's could think "outside the box" for just once and maybe get somewhere when it comes to actually finding a solution for these poor children. No one has even thought twice about my daughter being on antiobiotics for the last two years for a kidney problem. Heck, no one has even suggested we try her off of them. Well, I just wanted to let you know I share in your frustration. Good luck.

 

Dedee

[bmom]

I am willing to go, yet I just don't know if I have enough info yet. He had major symptoms after an illness in Feb. and then recently some small symptoms in Nov during stomach bug. Do I jump on it and go now or do we wait and see what goes on and gather more info?

[Dedee]

bmom,

 

I guess the thing I would ask myself is how bad is this affecting our family and his life at this point. Do you feel like you are able to handle it well enough on your own right now? If it really isn't bothering him that much right now, then maybe you could wait a little longer and see what happens. JMHO, but I always think you should go by how the childs life is being altered as to how quickly you should rush for intervention. Sometimes for me, it is hard for me to seperate my anxiety, from the way my child is feeling, and very often it is very different. Good luck in your decision. Don't you just hate the winter time.

 

Dedee

[Chemar]

bmom

 

if it is PANDAS you dont need info beyond what you have...the strep titres should tell the rest of the story.

 

when we went to see dr Murphy, all I knew was my son had literally changed over night and was clearly not ok.

He seemed to fit the PANDAS criteria, even tho he had never even been dx with strep throat.......but the blood test showed otherwise.

 

if your child is dealing with PANDAS, honestly my personalk opinion is the sooner you start eefective and specific treatment, the better his overall health will be. Nothing drains our systems more than continuous immuno reactivity to a microbe.

[bmom]

Thanks Chemar, See that is where my confusion sets in-the titers. I had my son tested and they were normal. I spoke with Dr. Murphys assistant and she said that titers do not have to be elevated to be Pandas. It seems to be more illness related-and not just strep. She said some children do well with antibiotics while others don't but from their experience, children whose titers become elevated and remain elevated vs. going slowly down seem to be the ones that do not respond to antibiotics. I just dont know if I would be jumping the gun, yet I dont want my son to become one of those that repeatedly gets exposed until titres remain elevated and antibiotics do not help! It is all very confusing. Dee Dee and Michelle- did you have your children tested and how were there titer levels? So- if his levels are fine does that determine he is not llikely Pandas- yet he seems to only have symptoms with illness and not daily. Although I do not want to have him be exposed until it is daily and titerss remain elevated. Ill admit I do not understand this very much so let me know if this is not correct.

[faith]

bmom,

I'm pretty sure I read somewhere that antibiotics have been tried for tourette patients and it did not seem to alleviate the tics. I think that is what you are wondering, if it works for waxing flare ups? Also, just to mention, I don't believe the antibiotics used for acne are on the same category of penecilins and those used for strep bacteria. I used antibiotics for years on and off from about the age of 16 to early twenties (tetracycline) and I'm pretty sure they are not in the same category of the stronger antibiotics. What are your son's symptoms presently? Have you seen dramatic increases in tics or OCD? I'm thinking I wouldn't get too fixated on the PANDAS connection unless you are pretty convinced his symptoms are connected to illness (like the moms here who have gone through this) as it seems that road is not exactly an easy one and the antibiotic route seems to come with its own set of problems and frustrations too. I've mentioned to you before that I have the same type of thoughts and questions that you are having, so I understand. I think we just have to keep our eyes open and it doesn't hurt to keep on top of the subject.

 

 

Faith

[Chemar]

Tourette Syndrome is genetic and neurological, and so antibitoics for TS are not expected to reduce tics, unless there is an underlying bacterial infection.

 

The dx of PANDAS is specific to strep ( Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcus.)

 

PITANDS can be linked to other microbes, altho it is possible I guess that some physicians are just lumping all into the PANDAS category??

 

I am rather puzzled that the assistant would say PANDAS could still be present even without strep antibody detection? so am assuming they were referring more to a PITANDS possibility

 

My son was emphatically ruled out as a PANDAS patient because he had no elevated strep antibodies, altho he does show increased tics with illness. Because of the genetic connection for TS and OCD , he was given a genetic TS dx

He continued to be a patient of one of dr Murphy's associates for almost a year (Dr Vincent is now in New Zealand, I believe) and was tested again, but always returned a negative for PANDAS

They never once suggested he could be a PANDAS patient so I am truly puzzled as to why you were given such a mixed message bmom.......unless I am misunderstanding something. If I have understood your post correctly you are saying that the ONLY time your child tics is with illness? Then surely there must be a PITANDS (or whatever they call it now) connection?

BUT

if the illness is viral, fungal or some other parasitic origin, then yes, antibitics are not really going to have much benefit as they are bacteriacidal.

again, that is where I personally feel a natural product like Monolaurin is so very beneficial as it appears to be an antiMICROBIAL, as opposed to just antibacterial like most antibiotics are(by Cardiovascular research in the Ecological range...available at The Vitamin Shoppe stores and online) Also, the amino acid L-Lysine has been found to inhibit reproduction of certain viruses like herpes etc

 

The whole subject of microbial induced neurological problems is still so in its infancy in terms of research and concrete factual information as opposed to theory. But thankfully the research is being done and hopefully more clarity will finally be available, especially to mainstream docs

 

I honestly think a lot of confusion arises here on the forum, because we have so many different issues being discussed which, altho they may manifest similarly, yet they have totally different roots

 

 

[michele]

In the beginning our symptoms were completely related to strep then ear infections, after a while, they came after virals too, then as of this year they come with exposures o others who are ill not just when he is sick. If you call for the appointment Dustin will ask you questions. He won't even make your apppointment until he gets your child's records faxed from the past. Then he will examine them with the Dr's and call you to set up an appointment. The paperwork from Dr. Murphy is fabulous. The details are amazing. My advice to you now is to keep good notes. When and if you do go they want alot of information from the past episodes. My son's was very saw toothed with episodes. We had four years of them to describe. The more you have to share the more they can help your child.

 

What amazes me is the closeness this resembles to tourettes. I mean the symptoms during episodes are very similar. However what sets it apart besides the elevated titers is the saw toothed effect during illness and exposures to strep. The exposure to strep is what is hard for me to grasp. When they don't get the strep just the symptoms of PANDAS. How do you know who they were exposed to? Sometimes people are just carriers. There is alot of strep in young kids. My son's titers have been really high at times, at other times they were back around normal after antibiotics. We have not had them tested as often as we should of. We did an IGG subclass 1-4 and his subclass 4 was elevated which showed his regulatoryinternal affairs were not working as well as they should be. However this test did not report titers individually. His tests did show metabolic issues and yeast markers were high. They also showed he was not detoxifying well. I think the neurological problem from the PANDAS coupled with shots put him over the edge.

 

Michele

Thanks Chemar, See that is where my confusion sets in-the titers. I had my son tested and they were normal. I spoke with Dr. Murphys assistant and she said that titers do not have to be elevated to be Pandas. It seems to be more illness related-and not just strep. She said some children do well with antibiotics while others don't but from their experience, children whose titers become elevated and remain elevated vs. going slowly down seem to be the ones that do not respond to antibiotics. I just dont know if I would be jumping the gun, yet I dont want my son to become one of those that repeatedly gets exposed until titres remain elevated and antibiotics do not help! It is all very confusing. Dee Dee and Michelle- did you have your children tested and how were there titer levels? So- if his levels are fine does that determine he is not llikely Pandas- yet he seems to only have symptoms with illness and not daily. Although I do not want to have him be exposed until it is daily and titerss remain elevated. Ill admit I do not understand this very much so let me know if this is not correct.