TOURETTES- TICS- PANDAS, ETC.....

[myrose]

Maybe someone can answer my questions here:

 

If all these things are SO similar and there are no tests to determine either of them then I guess it would be a case of what one doctors view is over anothers???

 

Some are diagnosed , some are not....... something doesn't lay right with me.....

 

Also on the antibiotics.....I do know that the benefits for some of you outweigh the negative and possible negatives of long term antibiotics, BUT what happens when and if your child gets a REAL bad life threatening infection of some sort and the antibiotics just do not work anymore because of the bodys build up of them?? (resistance)

 

what is the real difference between just the normal tics and Pandas anyhow. especially so if there are no tests for either.

 

My daughter was calm on antibiotics but was it REALLY the antibiotics? The 2nd time she was on them she still ticced.

 

Won't long term antibiotics prevent the immune from building strong on its own. Its my understanding that the antibiotics not only kill the bad stuff but the good too. Which in my opinion would leave you not as protected from sickness as you would normally be.

 

Sorry but I always wondered about all this stuff. My daughter has been on antibiotcs just twice in her life and myself at age 40 have had them 4 times aside from the ones for teeth issues. I have been sick 2x in the last 7 years. My daughter is 5 going on six and has had 2 upper resporatory infections, 1 case of strep, and the common cold 5 times (since starting school with the last one).

I guess my point is that the more your body fights the infections on its own the stronger the immune system becomes.

I wouldn;t want to interfere with that

[ad_ccl]

For us PANDAS was diagnosed after a SUDDEN and SEVERE onset of symptoms that we had NEVER seen before. Truly an OVERNIGHT onset - and there were COMPLEX MOTOR and VOCAL tics - my son was in constant movement - every part of his body - something that would be impossible to imitate. The other key - was the DRAMATIC improvement on antibiotics - where by the 48 hour mark tics were 80% gone and pretty much 100% gone at the end of the 10 days. Also the positive strep tests.

My understanding was the key to PANDAS was really the SUDDEN OVERNIGHT onset.

For us - the way my son was he could not function without the antibiotics. Today he is doing amazing - and has been on antibiotics almost 4 years. We have talked to the ID clinic about the concerns of resistance etc - we are lucky to live in a society where there are many different kinds of antibiotics we can use if we come into a situation with a serious illness. There is no question that we need to remain on antibiotics - otherwise his quality of life would not be at all what he is so fortunate to have right now.

[P_Mom]

I'd say it really depends on what you view as the worse evil. For ME, a brain being attacked is hands down the worse evil for me as far as antibiotics or PANDAS goes...I'll take the antibiotics any day over what PANDAS can do..sometimes leading to a change of baseline brain functioning for these kids and then having permanent issues. As far as resistance...we were told by the NIMH that PenVk is basically good for nothing anymore except strep, so, resistance is no issue with this antibiotic. Plus, I agree with ad-ccl,

there are many antibiotics available in this day and age.......not saying it couldn't happen, but, the chance of our kids getting something that a different, stronger antibiotic won't take care of is slim. These antibiotics that our kids take are basic antibiotics (especailly Pen VK)...there are many stronger ones available.

 

No difference between PANDAS tics and "normal tics." Tics are tics. My sons immune systems are overly active, a little supression is good for them. The broader antibiotics do have a tendency to kill the good guys as well as the bad guys....that is why you supplement with probiotics. I am not saying I am thrilled to have my kids on antibiotics..of course I wish things could be different, but, for me I just will not leave them without some protection from PANDAS...... keeping their brains protected is my #1 goal.

Yes, immune systems get stronger over time and as they fight illness, but, these kids immune systems are "overly strong." But, if you feel uncomfortable and don't want to interfere with that, then just don't do it..it has to be something you feel comfortable about.

 

Also, although my younger sons symptoms came on strong over a couple days (not overnight), my older sons was sudden, too, but much milder. PANDAS can present a little different in each case..I do believe there are "degrees" to this, as well as degrees to their response to antibiotics...every case is different.

 

Kelly

[P_Mom]

This quote from an article on PANDAS basically sums up the reason I put my kids on long term Penicillin..............

 

 

 

 

"Typically, a child with undiagnosed PANDAS may be taken to the Psychologist and/or Paediatrician for treatment of an onset or exacerbation of ADHD symptoms, oppositional behaviours or OCD. Stimulant or anti-depressant medication may be prescribed and/or a behavioural intervention or counselling initiated. As the infection passes and the strep antibodies reduce, the symptoms gradually subside and parents and clinicians believe that the intervention was successful. However then there is another strep infection, the symptoms return and the process is repeated. The problem is that the brain is being continuously damaged by the repeated attacks by streptococcus antibodies; and after each attack the recovery of damaged brain tissues may not be as complete as we would hope. Eventually the child may develop a chronic psychiatric disorder."

[Chemar]

Wendy, I would think that for those who have tics/OCD and /or other neuro issues for reasons other than PANDAS, LYME disease or other microbial induced stuff, being on long term antibiotics would be a very negative thing

 

altho many kids with PANDAS have tics, not all do, which is IMO a very definite distinction in Tourette tics, as there, all tic

I dont think antibiotics are an answer for all kids who tic, as there are many other root causes for tics other than microbes, as those dealing with dietary allergies, photosensitive induced tics, vaccine related tics, and those "transient" tic disorders that appear and then disappear forever in some kids

 

I know I sound like a cracked record sometimes but I must say again that when you have genetic TS in the family, and meet others with TS, you dont need a 'test' to confirm it. You can spot it immediately as TS!!

I have met kids dealing with tics who do not have TS and I can see the difference.

[P_Mom]

That is interesting, Cheri. So when my PANDAS child is ticcing from PANDAS, you would be able to tell he was not dealing with TS by observing his tics? Am I understanding you correctly? How? I think this would be very helpful to a lot of people on here that are wondering what they are dealing with...I would be extremely interested myself.

Thanks!!!!!

[bmom]

Kelly, Could you please tell me where to find the article you posted a quote about in its entirety? I would like to take it to discuss it with my sons doc. when we go in a couple of weeks. Thank you.

[P_Mom]

Yes, gotta run right now but I'll check in later and post you the link!

 

Kelly

[Caryn]

I don't want to rock the boat, but the same can be said for celiac/gluten sensitive enteropathy and OCD symptoms, behavioral issues, ADHD symptoms. The gliadin antibodies fluctuate in the child who has the condition and is eating gluten regularly. It will spike and recede. There are many clinical papers about issues with gliadin antibodies and psychiatric symptoms, especially schizophrenia.

 

This is why I chose not to put my child on long term antibiotics.

 

I agree with Chemar. Antibiotics are NOT for every child who tics.

[Chemar]

That is interesting, Cheri. So when my PANDAS child is ticcing from PANDAS, you would be able to tell he was not dealing with TS by observing his tics? Am I understanding you correctly? How? I think this would be very helpful to a lot of people on here that are wondering what they are dealing with...I would be extremely interested myself.

Thanks!!!!!

 

Hi Kelly

no, I would not even begin to suggest I could diagnose kids' causes of tics just by observing them...that is not what I am saying at all

 

what I am saying is that, having been in the company of kids who tic for a variety of reasons, I tend to be able to recognize those who have TS. It isnt a definable set of criteria to me so I am not doing anything other than to state my own personal observation. When you live with family TS, you tend to recognize it. that is all I am saying.

[P_Mom]

I think we have a miscommunication, Cheri. No, I didn't mean that you could diagnose the Cause of a kids tics by observing, but, that you can recognize the kids ticcing from TS as opposed to ticcing from other reasons. I know you have been dealing with this for a long time, and I value your opinion and do not doubt you when you say that. What I am extremely intetested in is when you say..."having been in the company of kids who tic for a variety of reasons, I tend to be able to recognize those who have TS." What is it that stands out about these kids? What can you see and recognize In the TS kids compared to the others who tic for different reasons? Yes, all kids with TS tic, that is what TS is, and, no, not all PANDAS kids tic..but many do...what I am asking.... is there a difference in the tics themselves? I was always told and thought "tics were tics" regardless of the cause, and that you couldn't determine if a child had TS , PANDAS, etc., just from observing the tics. Is it something in their behavior? I am just so curious because this is huge to me!

 

Also, I just want to be clear that when I talk about antibiotic use I am strictly referring to PANDAS cases. I have not nor would not suggest it for use in any other cause of tics, etc., I know it is not the answer to everyone's tics. I only have experience with PANDAS and that is what I post about. I think most of you have noticed that by now!

[Chemar]

It isnt a definable set of criteria to me so I am not doing anything other than to state my own personal observation. When you live with family TS, you tend to recognize it. that is all I am saying.

 

that is about as specific as I can be Kelly. I wouldnt want to try to start elaborating beyond that and setting up subjective criteria for others.

[P_Mom]

Okay, I understand that. Bummer though.