Sometimes is it just too late?

[amyjoy]

If I got this far with PANDAS (graduated with honors) I'm sure as ###### not going to let one relapse stop me not matter what causes it.

 

YOU GO, PANDAS16!!

I love having you on the forum and really value the insights that come from your sharing - and your courage!!!!

[holdingouthope]

Is there ever a time where it just becomes too late to treat PANDAS? Where you have not managed to see a full recovery? etc. If PANDAS doesn't not cause permanent damage like assumed, technically isn't never too late? Unless it interferes with development? The swelling in the basal ganglia supposedly goes down after treatment and severe PANDAS is not really something that can be missed for years upon years right? Idk. what are your thoughts on this?

 

Undiagnosed for 10years: My son, age 4, and daughter, age 14, both got sick August 1999. We lost Steven to raging, unpredictable fight/flight, clothing sensitivities, night terrors, bedwetting,dysgraphia, dyslexia, etc. Lauren went from being a teenage social butterfly to anxiety ridden and obsessive. They went undiagnosed until December 2009. My son, DNase 2720, then 14, responded well to abx then had IVIG in January 2010. IVIG brought Steven--himself--his personality--the funny, adventuresome, kind Steven came home after 10 years. Suddenly, Steven could write, read, read social ques. In May 2010, Steven scored the highest math schore in the school and in the 80th percentile in Reading!--he was still a special ed student. Steven, who was expelled from kindergarten, had a 1:1 aide at school until then, is now is an honor roll student--learning to drive, doing team sports, doing normal social teenager stuff. We are so very grateful.

So, what about my daughter, now 25? ASO 743, DNase 1780. She is finally on abx but has not responded as well. Desperately looking for info on PANDAS adults. Lauren is uninsured so we have to make good choices on the med services cause mom is paying. Can anybody point me in the right direction?

[mkur]

Lauren is uninsured so we have to make good choices on the med services cause mom is paying. Can anybody point me in the right direction?

 

The insurance laws have changed. Your child can stay on your insurance until age 26. You can contact the Tourettes Society to get the exact changes - they would know. My son is 20 and we have not given up hope. He is getting better slowly. Neuroplasticity - there is hope. Good luck.

[mkur]

Lauren is uninsured so we have to make good choices on the med services cause mom is paying. Can anybody point me in the right direction?

 

The insurance laws have changed. Your child can stay on your insurance until age 26. You can contact the Tourettes Society to get the exact changes - they would know. My son is 20 and we have not given up hope. He is getting better slowly. Neuroplasticity - there is hope. Good luck.

[Phasmid]

In our experience, probably not. I don't expect my son to be the kid he was before this all happened, but he is coming out of it just fine, and it has been 8 years!

 

 

[airial95]

Pandas16,

 

I think that leaving it untreated for a long time may have permanent/semi-permanent side effects. I think there's not enough known to know for sure if it's physical in the form of brain damage, but what we've seen so far is that it's not.

 

In our case, our son was so small at onset, it went untreated for over 6 months (because we thought it was the "terrible twos" - an easy misjudgement to make). As a result, a lot of his OCD, particularly certain rituals, have hung around after all other symptoms have remitted. We've had to use ERP/CBT to help fight this.

 

The way it was explained to me (simplified of course) is that the OCD in a way can become "learned" behavior, especially in younger children. Their brain is forming new neural pathways so quickly, that some of these things can then become "programmed"

 

For example, even after the physical cause is gone, all my son knows remembers is that he always lines up the trains before we leave school. He knows that lining up the trains that way makes him feel good, and if he doesn't it makes him feel bad. Eventhough it may not make him feel bad anymore, because the PANDAS treatments, he doesn't know that, or want to try. He just knows that NOT lining up the trains has ALWAYS made him feel bad, so he HAS to still do it. It's not that complex of a though process for him, it's just that is the only way he has ever remembered leaving day care. It's just the way things have always been - that's his "normal".

 

I don't know if that answers your question at all, but I think that if PANDAS isn't caught until later in life, or it the reaction stops at late adolesence as is theorized, they physical reaction may no longer be there, but the OCD may still be a very real side-effect that may still have to be treated. I think the same thing can be said even of some tics.

[Joan Pandas Mom]

We are in a similar situation. My 16yo son's PANDAS was left untreated for 6 years. He did have very, very short periods of remission throughout the 6 years. We are now treating aggressively with HD IVIG. I let you know if we start to see improvement.

[Mary M]

Well, as someone who is watching their 5 year old still have rages/tourette episodes/loss of control/attacking/no relief in clothing OCD/

post HD-IVIG, I have to wonder the same thing :-(

 

It is too early for me to tell.

 

I believe our issues started from the first year of life.

 

Just looking for improvement, at this point, relief.

 

And we have other health variables.

S&S, please know it took our dd 12 5 weeks before we saw improvement in the things you mention here...

Hoping for healing for all,

Mary

from Michigan

[SSS]

Well, as someone who is watching their 5 year old still have rages/tourette episodes/loss of control/attacking/no relief in clothing OCD/

post HD-IVIG, I have to wonder the same thing :-(

 

It is too early for me to tell.

 

I believe our issues started from the first year of life.

 

Just looking for improvement, at this point, relief.

 

And we have other health variables.

S&S, please know it took our dd 12 5 weeks before we saw improvement in the things you mention here...

Hoping for healing for all,

Mary

from Michigan

 

 

**Thank you Mary from Michigan!**

[jenbug]

Hello there...I understand your frustratuion about not knowing for adults. I have had OCD from about 8 y/o. It came and went ... I remember one summer being very ocd-ish right during and after a major illness. I don't remember all the symptoms though. Itcame back the worst for me after my oldest was born and some during the pg. If I try to go off my meds I literally make myself worried sick...if that makes sense..My oldest daughter has had OCD/Tourettes/ADHD from a few years yhonger than me. I am hoping that there is some more info on adults with this or who had it for a long time without knowing. I am 33 and was never dxd with it, so I wonder what tests they can perform to see if adults have it/have had it, etc. I am also wondering about clinical trials, etc. For years I have wondered where my OCD and autoimmune stuff has come from. I also felt different from other kids...Anyhow, as far as if it is PANDAS or just learned behavior over the years of having it, I guess either is probably possible...only science can tell. If anyone knows of clinical trials for adults with OCD, please pm me! Thanks

Edited May 28, 2011 by jenbug

[peglem]

http://clinicaltrials.gov/ is where you can learn about studies. Do a search for obsessive compulsive disorder.

[jenbug]

Thanks Peg!

[beeskneesmommy]

I believe that there is always hope and that there will never be a time to give up. When my son was dx at 2.5, I plugged along, trying to get help. Many, many medical professionals let us down. When my son had a major acute episode 4 days after his 4th birthday, I kicked into high gear, using all that I had, to get help for him. I made a promise to the world, to God, to my son, that he would be cured. I insist that there is simply no other option. I tell this to his specialist at CHOP and she hears me. I get discouraged, I cry, I feel terribly isolated at times. But my son, overall, in 8 months is getting better on antibiotics alone. 2 steps forward and 1 step back, but definitely better. In order to have complete recovery, we may have to have IVig or PEX, However, he is making it. Each week I uncover another layer of what may be inhibiting full recovery. Yesterday, it was the discovery that he has a strong allergy to the family dog, who arrived 2 days prior to the acute episode, but many months after many Strep/PANDAS episodes. I had a consult a couple of months ago with Dr. Kovacevic (Dr. K, Il.) who said: I FEEL THAT THIS IS ABSOLUTELY PANDAS, BECAUSE NO OTHER DISEASE BEHAVES LIKE THIS.

 

Please, don't give up. Please remember that there will be naysayers and doctors who will inadvertently betray your sense of what is, but there will never be a time to give up.

[tpotter]

Is there ever a time where it just becomes too late to treat PANDAS? Where you have not managed to see a full recovery? etc. If PANDAS doesn't not cause permanent damage like assumed, technically isn't never too late? Unless it interferes with development? The swelling in the basal ganglia supposedly goes down after treatment and severe PANDAS is not really something that can be missed for years upon years right? Idk. what are your thoughts on this?

 

 

From personal experience (with one of my DS's...both have PANDAS), I am beginning to believe that there may still be underlying infection (whether strep, lyme, or something else) if the IVIG isn't getting it. Everytime we tx with HDIVIG (already had 5), he does great, then regresses within 3 weeks.) Then we find out that ASO is still elevated, spleen is mildly enlarged, WBC is low...this al means infection (ASO means strep.) Although we are testing for co-infections, so far, the only thing currently seems to be strep. We are now getting very aggressive with the strep (IV abx). PLUS, we are working on fixing the gut.

 

So, my PERSONAL OPINION (that's all it is), is that you have to find out everything potentially underlying the cause of the PANDAS, and knock it out...then the HDIVIG can do it's job.

 

I certainly hope it's not permanent.