PANDAS w/out OCD

[pr40]

We are still trying to diagnose our dd8. Although we live near Boston, we haven't had luck finding a doctor with experience with PANDAS. She had strep in October 2011, symptoms started early December, grow worse until March, then stabilized, suddenly lessened in April. We are up and down now, never completely gone.

DD has some symptoms from the PANDAS list but not the OCD one. In stead of OCD, she has restless leg syndrome. She has problems sleeping, regressive behavior, is often irritable. Of symptoms that could count as OCD, she picks her nose or touches her mouth constantly. She has headaches, nausea, heartburn.

Are there other similar PANDAS cases? Anyone with RLS-like symptoms?

Thanks in advance for responding.

[Chemar]

welcome

I am just bumping your post up for others to see

[junkyardjean]

We are just in the process of getting dd4 diagnosed (through dr. k). We need to have a few more labs completed, but it is looking like "95% sure it is PANDAS".

 

Her main symptom is the RLS, regressive & aggressive behavior. She will actually set up conversations (as much as a 4 y/o can do - ie: she will ask what day it is, then tell you that you are wrong kind of stuff) to pick a fight when she is in a flare. She first had symptoms in late 2011, and since then the list continues to grow each time her immune system is activated. She has only recently showed more traditional OCD kind of stuff - will perseverate on topics, verbal "hiccups" in her voacabulary (almost like a stutter), confessing, germ talk, lack of eating. However, the OCD stuff is small in comparison - her main difficulty is the defiance, loss of focus, loss of impulse control, etc. She also got clinical RLS when this all started in late 2011.

 

Hang in there!

[colleendonny]

Hi, I am also in your area. We live in South Shore MA, but we travel to CT to see our specialist and we also see an integrative doc in CT as well. There may be someone in the area who can start you off. Pm me and I can give you a contact if you are interested.

[AmySLP]

My daughter started with movement issues, tics, restless legs, choreiform movements. It wasn't until those movements became more complex that I wondered if they were OCD. During periods of exacerbation over the last 3 years, I've noticed some OCD qualities but these were not obvious ones. She had some repetive behaviors and fears. We see dr. bouboulis in CT.

[kimballot]

This is from the "pinned threads" at the top of the PANDAS page. I know I did not realize that my son's unusual behaviors were actually OCD until I read this and the pattern became clear.

 

http://www.latitudes.org/forums/index.php?showtopic=6153

[PowPow]

my daughter started with aggressiveness, major grouchiness, sudden sensory issues, and seperation anxiety after strep throat.

about seven months later "real" ocd started and she cultured positive for strep again at that time.

another daughter started with overnight onset with her more typical pandas. tics & "chorea-like" movements started headbutt months later

I am trying to say that it can present differently. both girls have responded to pandas tx: abx, steroids, ivig and pex and now finally, cbt/erp, now that the massive assault of pandas was defended/stopped by all the medical steps we took.

[NancyD]

I suggest seeing a doctor who can search for all possible underlying bacterial and viral infections including PANDAS, Lyme, Bartonella, Babesia, Ehrlicliosis, MycoPlasma, XMRV, HVV6, etc., as well as test for MTHFR and KPU. I don't know any MDs in MA who are experienced enough with this (others may suggest someone), so I suggest seeing Dr. B in CT who can get you started down this path, treat if it's PANDAS, and refer you to an LLMD if your DD has any tick-borne infections. Or you can see an integrative MD who has expertise in treating all infections. We live an hour north of Boston and have seen Dr. B and Dr. L, but our greatest success has been working with our integrative MD in upstate NY who has helped us search for and treat underlying causes.

[pr40]

yes, please, let us know whom you use in CT. thanks in advance, petar

 

Hi, I am also in your area. We live in South Shore MA, but we travel to CT to see our specialist and we also see an integrative doc in CT as well. There may be someone in the area who can start you off. Pm me and I can give you a contact if you are interested.

[karenm]

My grandson did not have obvious OCD. That was why so many Dr would not help us at first. Do not give up!!!