abx response and PANDAS meltdowns/OCD

[thenmama]

xxx

Edited March 25, 2013 by thenmama

[Worried_Dad]

From what I've read, heard from others (like local parents of kids with "classic" OCD), and been told by some PANDAS docs, the severe emotional lability is a distinguishing aspect of PANDAS vs. traditional OCD. In the extreme, docs like Dr. T and Dr. K describe the PANDAS symptom explosions as "the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, anorexia, tics, rages, suicidal talk, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable.

 

Like your dd, our son could not even attempt CBT during exacerbations. Like trying to extinguish a bonfire with a squirt gun.

 

Don't know if specific types of OCD are more common in PANDAS? For our son, it was crippling contamination fears and anorexia (along with continuous pacing in circles).

[JAG10]

I would concur with WorriedDad; my PANDAS dd10 was completely unable to participate in CBT in any meaningful way. Even the therapist recognized this and we agreed to discontinue after 4-5 sessions; another small fortune later...

 

Interesting choice of words "brain on fire" WD. When she was 7, before we knew she was PANDAS, we took her to the Amen Clinic in Reston, VA where they did a SPECT scan of her brain and determined she had "Ring of Fire" ADD, which is basically every dx wrapped into one; ADHD, OCD, Mood/Bipolar....but basically the scan showed her whole brain was over-activated.

[thereishope]

Yes, allergies can affect PANDAS to the point that symptoms can be as bad as they are with strep, especialy earlier on in treatment. If she had a sinus infection, they can be very hard to clear too. Sometimes, even two antibiotics at the same time are needed along with a nose spray like Flonase. I'd call the dr that prescribed the Omnicef and explain what you just said about the sinuses not getting better. Regardless of PANDAS symptoms present, the sinus symptoms still present may warrant an additional antibiotic over the phone with the dr. I've ad the dr switch and add antibiotics for sinus infections over the phone, and those were doctors that were very protective of abs. I would call tomorrow since waiting too long may make the doctor say they want to see your child again (unless you want them to see your child again).

 

Also, yes, meltdowns can last for hours. And meltdowns are different than the tantrums we've experienced as a "normal" kid tantrum. Finally, another yes, to CBT or ERP not working in the midst of an exacerbation. Nothing worked very early for my son. It wasn't until much later could we attempt coping techniques.

[Healingthedude]

From what I've read, heard from others (like local parents of kids with "classic" OCD), and been told by some PANDAS docs, the severe emotional lability is a distinguishing aspect of PANDAS vs. traditional OCD. In the extreme, docs like Dr. T and Dr. K describe the PANDAS symptom explosions as "the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, anorexia, tics, rages, suicidal talk, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable.

 

Like your dd, our son could not even attempt CBT during exacerbations. Like trying to extinguish a bonfire with a squirt gun.

 

Don't know if specific types of OCD are more common in PANDAS? For our son, it was crippling contamination fears and anorexia (along with continuous pacing in circles).

 

We concur with worried dad too

all of the following happen over the last 2 months:

"the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, tics, rages, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable.

 

My son has the brain fog first, then hears voices, up to hour long tantrum, self injurious at times -then snaps out of it and is totally alert and normal. Very weird.

He has not been his usual personality at all the last 2 months.

[Healingthedude]

From what I've read, heard from others (like local parents of kids with "classic" OCD), and been told by some PANDAS docs, the severe emotional lability is a distinguishing aspect of PANDAS vs. traditional OCD. In the extreme, docs like Dr. T and Dr. K describe the PANDAS symptom explosions as "the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, anorexia, tics, rages, suicidal talk, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable.

 

Like your dd, our son could not even attempt CBT during exacerbations. Like trying to extinguish a bonfire with a squirt gun.

 

Don't know if specific types of OCD are more common in PANDAS? For our son, it was crippling contamination fears and anorexia (along with continuous pacing in circles).

 

We concur with worried dad too

all of the following happen over the last 2 months:

"the Exorcist syndrome." We certainly saw this with our son: overnight explosion of so many symptoms (OCD contamination fears, tics, rages, hours-long crying jags, urinary frequency, extreme sensory defensiveness, cognitive fog, pain / muscle weakness, etc.) that it completely overwhelms the child and the family. I don't think this breadth of symptoms - and extreme presentation - is at all common for non-PANDAS OCD. It's literally like their brains are on fire, and every aspect of their personality is affected: they become unrecognizable.

 

My son has the brain fog first, then hears voices, up to hour long tantrum, self injurious at times -then snaps out of it and is totally alert and normal. Very weird.

He has not been his usual personality at all the last 2 months.

[kimballot]

Sinuses are tough - there is little blood flow in the sinus area, so antibiotics do not reach the sinuses well. I think the trick is keeping inflammation down (remember - allergies cause inflammation).

 

I agree that flonase or rhinacort or some other steroid spray is important for reducing inflammation. Do you use antihistimines? They can help. We also find mucinex works wonders for keeping mucous thin and flowing. Drink lots of liquid.

 

Also - the fall is a difficult time for outdoor molds due to wet leaves and brush. It really does not die until there is a good snowstorm. Be sure to vacuum regularly and take shoes off when folks come in. Have your daughter shower before bed and try to keep her room an "allergy free" zone if possible, so she has 8-10 hours of relief from allergens each evening (dust mite covers on bedding / no stuffed animals in bed / wash sheets in hot water / use an air purifier if possible, etc)

[thenmama]

xxx

Edited March 25, 2013 by thenmama

[SarahJane]

Everyone has given you good info, but I wanted to add a few things.

 

1. Yes, your docs might say 10 days is enough to know whether it's PANDAS. My ex-doctor actually told me that if my son(6) had PANDAS that 24 hours on an abx would have been enough to clear up any OCD/symptoms. (If any PANDAS Parents read that last statemnt, be sure to hold onto your chair so you don't fall out of your chair laughing!) That is why I said go to one of the experts. Being in VA, you're closest to Drs. L, T, or B. I used Dr. K (did IVIG this month), so I can't give info about any of the others, but many on this forum do use the other docs. Don't waste time with your doctors. Even if they say they believe it is PANDAS, they may not treat it accordingly or get bogged down by all the other dx's you've had. This is how I think of it...my son doesn't have OCD (and all the other alphabet soup)...his brain just makes him act like he does. So that's why treatment for the mental illnesses don't work...they don't really have them. But they DO learn bad habits that may need CBT or ERP to correct...that I do believe. And depending on where you are in VA, there are some PANDAS families around the state...I think some have even been trying to get a support group started.

 

2. There is a high prevalance of siblings having PANDAS. I only have one child, but there are a few on here that deal with multiple PANDAS kids (Bless their hearts!). Anyway, you said your son was HFA, so if you haven't already, you may want to consider if he has any co-morbidity issues with PANDAS. (How does he handle illnesses?) Misdiagnosis is a big thing too, and if PANDAS has early onset, then it looks a lot like autism. Many kids also get dx'd with ASD later than usual, which connects that dx to the PANDAS. (My son is not autistic, but during an exacerbation or when raging, it can look like he is.)

 

3. And you have to think of PANDAS symptoms as occuring when the immune system is activated. They don't have to get sick...just have their immune systems triggered. That's why flu shots, vaccines, viruses, and obviously, bacterial infections cause issues...allergies too! They can have negative strep tests but react just to having been exposed to the bacteria. It's a good idea to check your entire family to see if anyone may be a carrier. (You may've figured that out from reading the forum already tho'.) And PANDAS is a clinical dx, so don't let negative tests fool you (or your docs) & look at the entire symptoms globally & in relation to illnesses/exposures. Low titers do not rule out PANDAS...make sure your docs don't try to use that one on ya. (I have trust issues...sorry to project.)

 

All the Best!