Aa
please help
My daughter has ocd,she has had it since she was 6 years old we did meds. and some counseling for a year,she got better no more meds no counseling.now at 10 years of age she came down with strep march2,terrible ocd now on meds and counselling.Can anyone share experience on how long a relapse goes on? i never dreamed anything like this would happen she has done so well past years.thanks to all who reply i feel so helpless.
I don't want to go overboard and make you think your daughter has PANDAS. I do want to reinforce what JSGeare and nursegirl6572 wrote: it's not common, but it should be checked because of the relationship between the strep infection and the return of the OCD symptoms.
I have talked with a number of medical professionals who have a wide variety of views ranging from no knowledge of PANDAS, to skepticism about whether it even exists, to whether it is very rare, and to whether it simply is underdiagnosed or misdiagnosed. I have a son who was hospitalized at age eight with a severe strep infection, and the day he was discharged we noticed he was pulling his hair out. We soon noticed he developed other symptoms of OCD, including severe anxiety. It was by chance that after several sessions with a his psychiatrist, either my wife or I just happened to mention strep and he made the connection with PANDAS. Five years later, we still have occasional bouts with the symptoms, the most severe of which are tics. While other things occasionally trigger the tics, we have always been able to link them either to medication, stress...or strep.
JSGeare mentioned the NIMH website. I have provided the URL for the PANDAS page. A web search for "pandas AND strep" should provide other authoritative (and not so authoritative) sources of information. There are some impportant things to keep in mind when
you talk to medical professionals about PANDAS. First, other than many psychiatrists and some neurologists, expect to get quizzical looks when you mention PANDAS. Provide them with the full name (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and the URL below. The will then take you more seriously. Second, even if they know about PANDAS, there is still much that is unknown about the disorder and its treatment, so even if a positive diagnosis is made--and it is correct--different medical professionals will likely have differing treatment recommendations. Do some research (start with NIMH, but go beyond). Don't be afraid to get a second (or third or fifth...) opinion.
NIMH PANDAS Web page-- http://intramural.nimh.nih.gov/pdn/web.htm
Finally, I want to reiterate one thing that JSGeare said because those of us who deal with our kid's PANDAS sometimes forget it because we focus to much on the strep itself: it is NOT the strep itself that is the culprit, so a negative strep test does NOT rule out PANDAS. It is a result of the antibodies that are produced to fight the infection attacking part of the brain. So if your child has PANDAS, the OCD symptoms will diminish slowly, lasting beyond the time the infection is gone--perhaps weeks or month--until they disappear when all the antibodies are finally eliminated from her body.
Good luck. Hopefully your local medical community is knowledgeable about the wide variety of possible causes of the sudden return of your daughter's OCD symptoms and can help the entire family cope with your present ordeal, and come up with a treatment plan that works.
I have talked with a number of medical professionals who have a wide variety of views ranging from no knowledge of PANDAS, to skepticism about whether it even exists, to whether it is very rare, and to whether it simply is underdiagnosed or misdiagnosed. I have a son who was hospitalized at age eight with a severe strep infection, and the day he was discharged we noticed he was pulling his hair out. We soon noticed he developed other symptoms of OCD, including severe anxiety. It was by chance that after several sessions with a his psychiatrist, either my wife or I just happened to mention strep and he made the connection with PANDAS. Five years later, we still have occasional bouts with the symptoms, the most severe of which are tics. While other things occasionally trigger the tics, we have always been able to link them either to medication, stress...or strep.
JSGeare mentioned the NIMH website. I have provided the URL for the PANDAS page. A web search for "pandas AND strep" should provide other authoritative (and not so authoritative) sources of information. There are some impportant things to keep in mind when
you talk to medical professionals about PANDAS. First, other than many psychiatrists and some neurologists, expect to get quizzical looks when you mention PANDAS. Provide them with the full name (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections) and the URL below. The will then take you more seriously. Second, even if they know about PANDAS, there is still much that is unknown about the disorder and its treatment, so even if a positive diagnosis is made--and it is correct--different medical professionals will likely have differing treatment recommendations. Do some research (start with NIMH, but go beyond). Don't be afraid to get a second (or third or fifth...) opinion.
NIMH PANDAS Web page-- http://intramural.nimh.nih.gov/pdn/web.htm
Finally, I want to reiterate one thing that JSGeare said because those of us who deal with our kid's PANDAS sometimes forget it because we focus to much on the strep itself: it is NOT the strep itself that is the culprit, so a negative strep test does NOT rule out PANDAS. It is a result of the antibodies that are produced to fight the infection attacking part of the brain. So if your child has PANDAS, the OCD symptoms will diminish slowly, lasting beyond the time the infection is gone--perhaps weeks or month--until they disappear when all the antibodies are finally eliminated from her body.
Good luck. Hopefully your local medical community is knowledgeable about the wide variety of possible causes of the sudden return of your daughter's OCD symptoms and can help the entire family cope with your present ordeal, and come up with a treatment plan that works.
I think that looking into the PANDAS theory is a great idea. Again, it is just a rare possibility...but it needs to be ruled out if it hasn't been already (and I'm pretty sure it isn't commonly considered too much during the diagnostic phase).
Also, while I'm not greatly familiar with OCD, I'm pretty sure diagnosis of that at such a young age is pretty uncommon (or "atypical" anyway, for lack of a better way to say it?).
Again, that doesn't mean that she doesn't indeed have OCD, just that iti s certainly worth looking into the other possibilities as well.
Lastly, I have a daughter the exact same age, and my heart truly goes out to you. There is nothing worse than not being able to wave a wand and simply "fix" something for our children. You are in my thoughts...please do let us know how she is.
Also, while I'm not greatly familiar with OCD, I'm pretty sure diagnosis of that at such a young age is pretty uncommon (or "atypical" anyway, for lack of a better way to say it?).
Again, that doesn't mean that she doesn't indeed have OCD, just that iti s certainly worth looking into the other possibilities as well.
Lastly, I have a daughter the exact same age, and my heart truly goes out to you. There is nothing worse than not being able to wave a wand and simply "fix" something for our children. You are in my thoughts...please do let us know how she is.
I'm no expert (trust me) but this sounds like a possible case of pediatric autoimmune neuropsychiatric disorders associated with streptococci -or PANDAS, for short. If Ryan drops by, no doubt he'll express a more informed and certainly more readily understood explanation that I can, so lets hope he makes a fly-by.
For now, and subject to revision by people who actually DO understand this stuff, the idea is that the body's own defense against the strep also interacts with some brain chemistry to produce various mental presentations, among them OCD and panic and anxiety. From the point of view of medical research, this falls into the "who wooda thunk it?" category and so is getting a fair degree of attention these days by the folks down at the National Institute of Mental Health (NIMH). Although PANDAS itself is rare, I think, it is getting a lot of attention because whatever therapy can de devised to cure or control it may also work for folks who just have OCD and other disorders -without the strep part- and that, indeed, is a large population. I know this sounds like turning on the ceiling light by flushing the toilet, but such is the serendipitous nature of medical discovery.
Because of the rarity of the disorder (if I in fact, DO have it right) it may be a bit tough to locate other folks in the "been there, done that" category, but start with this:
On the upper right, you will see a "Search this Community" box. Type PANDAS in there and hit Go. I tried it and received 6 citations. You do the same, then click on any of interest and feel free to send a message to the originator of the material.
BEAR IN MIND: I am guessing at PANDAS and I could have it all wrong -so run it by your doc if you are not sure. If it is, you might also want to go the the NIMH web site and see if they have any studies underway.
I wish you (and yours) well. Please let us know how things go for you and the youngster.
For now, and subject to revision by people who actually DO understand this stuff, the idea is that the body's own defense against the strep also interacts with some brain chemistry to produce various mental presentations, among them OCD and panic and anxiety. From the point of view of medical research, this falls into the "who wooda thunk it?" category and so is getting a fair degree of attention these days by the folks down at the National Institute of Mental Health (NIMH). Although PANDAS itself is rare, I think, it is getting a lot of attention because whatever therapy can de devised to cure or control it may also work for folks who just have OCD and other disorders -without the strep part- and that, indeed, is a large population. I know this sounds like turning on the ceiling light by flushing the toilet, but such is the serendipitous nature of medical discovery.
Because of the rarity of the disorder (if I in fact, DO have it right) it may be a bit tough to locate other folks in the "been there, done that" category, but start with this:
On the upper right, you will see a "Search this Community" box. Type PANDAS in there and hit Go. I tried it and received 6 citations. You do the same, then click on any of interest and feel free to send a message to the originator of the material.
BEAR IN MIND: I am guessing at PANDAS and I could have it all wrong -so run it by your doc if you are not sure. If it is, you might also want to go the the NIMH web site and see if they have any studies underway.
I wish you (and yours) well. Please let us know how things go for you and the youngster.
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