Viral Issues

[sandree]

Hi Everyone,

 

I am mom to Jaime, 15, with severe OCD. We have tried to investigate the PANDAS connection but titers have been low and no positive throat cultures. She has not had a bout with strep for quite a few years - in fact, has not had a real illness for years. But I do think her OCD is related to viral or bacterial issues because she always has so many physical symptoms along with her OCD behavior as well as sensory problems. We have done many supplements in the last two years and she reacts strongly with detox symptoms to many of them. We recently tried some homeopathic drops for viral issues and she immediately responded with detox symptoms (headaches, nausea, eczema on her face, stomach pains, itching). She does not develop a full blown illness but just has these ongoing symptoms that come and go.

 

I have heard of PITANDS but have not seen much about it. She is also, perhaps, too old for the PANDAS diagnosis. I keep thinking that IVIG would probably be of great help to her but I don't feel we have the testing to prove it and don't know where to get testing to prove that this might help. Our local doctor is of no help with all of this.

 

Any thoughts?

 

Sandy

[patty]

sandy,

 

does your dd only has OCD symptoms and w/o tics? what kind of homeopathic drops are you using? is it a combination remedy? is not uncommon to get an aggravation using homepathic medicine. it is best to consult a homopath to avoid aggravation.

 

pat

[sandree]

She does not have tics although just lately she started to spit a lot. The drops are called Vaccistat and Neurostat and were recommended by another mom. Yes - I do think we should find a homeopath if we decide to continue with this.

 

Sandy

 

sandy,

 

does your dd only has OCD symptoms and w/o tics? what kind of homeopathic drops are you using? is it a combination remedy? is not uncommon to get an aggravation using homepathic medicine. it is best to consult a homopath to avoid aggravation.

 

pat

[colleenrn]

Sandy-

I just wantedf to comment that the INITIAL trigger is strep, but subsequent flareups can be caused by many other bacterias and viruses. Even though your daughter is 15, you could still be looking at PANDAS. Has she been on an antibiotic recently? When was her last throat culture and did theygrow it out for 72 hours?

You can get false negative throat culturea AND normal titers and still be dealing with strep. Strep can hide in sunuses, gut, skin, adenoids.

 

Colleen

[greenmommy]

Do drs put child on a antibiotic with virals after PANDAS? if symptoms are back?

 

Alicia

[thereishope]

My son had strep and PANDAS symtoms as a result 3 times. All behavior changes went away with the first two times. The third time, a lot of the issues went away except for OCD. It is a residual symptom of PANDAS for my son. The neurologist said that happens sometimes. He has been strep free for 3 months. His OCD no longer includes meltdowns like they did when he was recovering from strep, but he has many rituals and anxiety when he does not complete them.

 

He also has flare up of OCD when he has viruses likes colds. He has not had any other bacterial infections since strep.

 

The psychiatrist did say that OCD can up with fevers and can whenever the brain warms up even a little.

 

Now for a few questions....Do you remember when the OCD first surfaced? Was it full force overnight or a very gradual process?How many times in her life has she had strep?Has she done CBT? Did that help?

[greeneyes48072]

Just to give you a comparison, we've been dealing with this since November. We get IVIG this week (yippie!). My son's primary symptoms are verbal and motor tics. He also has a lot of hyperactivity when it is bad. He is also very emotional, super sensitive. For us there has been no symptom free times since November. There are blow ups, which reduce a bit, but we have not seen the break that most people see after about 12 weeks. He's been on an antibiotic since...oh of my head about February I think. So it does not help us, though it does help some. The steroid burst helped a lot for us, but only the first couple tries, then it became ineffective. If it's that bad, and you haven't tried the steroid yet, it might be a next step for you...

[EAMom]

Hi Sandy,

your dd isn't too old for a PANDAS diagnosis as long as her PANDAS started b-4 puberty. It is also possible that her symptoms were mild and PANDAS was undiagnosed/misdiagnosed initially (pre-puberty).

 

Looking back our dd had PANDAS symptoms starting at age 4.5 (urinary frequency) but we didn't have a diagnosis (or learn about PANDAS, or ever do a strep test) until her symptoms became full blown at age 7.5 (anorexia nervosa, severe OCD, mild tics, emotional lability). Many PANDAS kids have symptoms that go undiagnosed (or misdiagnosed...autism, bipolar, adhd, oppositional defiant disorder, etc.) for years.

 

Any illness has the possibility of triggering pandas symptoms (after the initial episode is triggered by strep...like colleen said). Anyway, ditto what colleen said and do consider a steroid burst (like greeneyes said). Also, many pandas parents find that symptoms improve a bit with Ibuprofen so you could try that (but not at the same time as steroids.)

[EAMom]

PS I don't know if you already saw this post by NancyD...her dd was misdiagnosed for many years, but is now responding to IVIG at the age of 13. http://www.latitudes.org/forums/index.php?...art=#entry33986