I THINK I WAS GIVEN FALSE HOPE

[bubbasmom]

I was lead to believe, and I can't remember who all actually lead me to believe it, but that the "P" in PANDAS standing for pediatric means that they actually outgrow it around puberty or shortly thereafter. I know Dr. K was one that lead me to believe that. But what I'm seeing is that nobody can personally attest to this. There are people, like on Saving Sammy, that still take long term antibiotics as a young adult. Well, they apparently are still very worried about strep! Does anyone know of anyone PERSONALLY that has outgrown PANDAS.

My son is 13, I have to say I really thought soon we would have the hope that he would outgrow this in the next couple of years. But I know there are parents that talk about their 15 year olds on here!

 

Someone throw me a bone here!!!

[dcmom]

bubbasmom- Unfortunately the P for pediatric, in pandas, was (possibly) an artificially imposed requirement used by researchers when "discovering" and studying the post streptococcal neurological issues. It seems some grow out of it, and some don't. I was also told early on by a doctor that they usually grew out of it, but later in the appt the doc also told me about a college age pandas patient still having ups and downs. Hopefully, as they mature, they get sick less, certainly are exposed to and get strep less, and have a maturity level that can help them manage the disorder. My daughter is much younger than your son, and to be honest, I try not to look that far into the future- I understand your devestation- but hang in there, I do believe all of our kids WILL get better, it is, however, a long road.

[LNN]

I'm friends with a mom whose 18 year old daughter has outgrown it. Her daughter was extremely sick and was one of Swedo's first 50 kids. She had a long recovery, but she is fine now and not on antibiotics or any other meds. She is off at college now and thriving.

[MomWithOCDSon]

And Sammy Maloney is also away at college and thriving. He only takes abx when exposed to strep, but nothing prophylactically.

[sf_mom]

I believe the potential to out grow is dependent on the 'state of immune system' and its ability to manage ongoing bacteria's and future viruses.

 

Important variables: How long the child was sick (many of us don't really know the answer), how aggressively was the child treated when PANDAS was discovered and re-exposures. If the body is constantly fighting a bacteria, constantly attacked with additional bacteria's and viruses and the immune system was never supported then the ability to outgrow decreases.

 

Right now, many parents are approaching treatments very differently due to availability, insurance coverage and concrete scientific supportive information of treatment. Until that gets hashed out.... 10 to 20 years from now there will be varying outcomes for each child.

 

I happen to believe it is 100% recoverable......

 

-Wendy

[thereishope]

I don't know anyone personally, but there have been some parents who have posted on here whose PANDAS children grew up to be full recovered, functioning adults.

 

Now I don't know how that adult would fair if they were to contract strep again.

 

I believe even on PANDAS Network website it states that about 2-3 % (maybe it was higher) do not outgrow PANDAS. I think the problem is most of the kids who were first diagnosed with PANDAS are just becoming adults so we don't really know what their future may hold.

 

I think the state of health a child is in when they hit puberty is important as well.

[thereishope]

This where I got my info from at PANDAS Network...

 

 

http://www.pandasnetwork.org/prognosis.html

 

 

"Most children outgrow PANDAS at puberty (ages 12 to 15).

 

It is not clear entirely why this occurs. Experts know that Group A (GABHS) infections fall off around age 16. It may be that after exposure to multiple strains throughout childhood a natural immunity to strep infections builds. Our group has talked to several PANDAS families whose daughters, at the onset of menses – have suddenly stopped having any PANDAS symptoms. There are reports of several boys – at age 13 or so, who have stopped having PANDAS symptoms as well.

 

However: about 2-5% of children never develop these protective antibodies and remain susceptible to strep. If parents have strep infections as adults, it is more likely that child will remain susceptible as well."

 

...More info inbetween ...

 

 

"What about Prophylactic Antibiotics – How long should my child stay on them?

 

The current guideline from the NIMH is: PANDAS children should continue until age 18 to 21 years of age as prescribed by the American Academy of Pediatrics for Rheumatic Fever and Sydenham Chorea. At which time it is presumed the child has built up a proper immune response.

 

In the Current Group of PANDAS cases approx. 10% of the children recovered after several weeks or several months of symptoms. They remained on prophylactic antibiotics (up to 1 year) and had a complete cessation of symptoms and the parents have taken the children off antibiotics. If the child has a reoccurrence of symptoms they will begin antibiotics again.

 

The other approx. 15% are continuing on daily prophylactic antibiotics beyond 6 mos. as their children still have low level anxiety, mild ocd/tics, and hyperactivity and are deciding if their children's condition is manageable or not.Finally, there is the another 15% of the group that has gradually outgrown PANDAS at puberty and are now between 14-18 years old. They only remained on antibiotics throughout childhood with no IVIG or Plasma Exchange to lessen severity. Most of the parents have said their childhood was challenging and difficult on the family life. Their children had to be in special IEP classes in Grade School. Their doctors gave antibiotics periodically when strep was in the household or classroom environment or if they got a strep infection. They are not currently on prophylactic antibiotics post-puberty but are vigilant."