Got appt- now a few questions!

[pixiesmommy]

We finally exhausted all other options and are going ahead with exploring whether or not PANDAS is the right diagnosis. My dd9 is diagnosed with all sorts of things- OCD, ADD, SPD, Bipolar, Tourette's... and yet there is no explanation for the random fevers she has. We've had Kawasaki EKG, immuno bloodwork, urine porphrines, etc etc etc. and no one can tell me what is going on.

 

My DH found this forum and info about PANDAS a few months ago and we called Dr K and set an appt for mid-August to get an evaluation. In my heart of hearts I feel that she does have PANDAS. She's has strep SOOOO many times in her short life. The dr who removed her tonsils when she was 4 said they were some of the biggest and yet most scarred from infection tonsils he had seen in his entire career.

 

So my questions are-

 

She is on low doses of Abilify and Zoloft for anxiety, tics (not that they help), and aggression (they do lessen to an extent). Can she continue these meds while receiving IVig if that is the course of action we want to take? I see that some drs premed with Benadryl, which reacts with Zoloft according to the prescribing insert they gave us.

 

Also, will Dr K prescreen to see if she has IgA? I see that you can have bad reactions if you don't have IgA. Does he test for kidney function or do any prescreening tests before administering the IVig at all? We have had an MRI but it was over a year ago, EKG was 2 years ago or more, no bloodwork in a year probably.

 

Is there anything I should be doing to prep for the office visit or the IVig in the meantime? Questions I should ask that I'm not thinking of??

 

Thanks in advance. I wish I could share more of our story (and plan to) but I have a nursing baby in my lap and typing is difficult.

 

Manda

[michele]

Your dd condiion sounds similar to my son. He also looks like OCD, tourettes, ADHD, PANDAS, and Aspergers. He is on meds also for the symptoms that don't seem to really go completely away anymore. Abilify for the moods and tics, clonidine for the moods and attention and tics, celexa for the ocd. I did talk to Latimer because we would like to try IVIG when we go to her this week. She said to stay on meds. Although Dr. K may feel diffferently. In fact he told me via the phone that meds can cloud the judgement of the steroid burst effectiveness. At thus point he is so awful even on the meds I can't imagine him off them until he is farther ahead with the treatment such as IVIG. He used to get fevers with virals and infections that spiked and worsened his symptoms. That heating up the basal ganglia can really make their behaviors worsen. Good luck with Dr. K. Dr. Cunningham is a good one to go through for he PANDAS bloodwork. Look for the post on here for her labs.

 

We finally exhausted all other options and are going ahead with exploring whether or not PANDAS is the right diagnosis. My dd9 is diagnosed with all sorts of things- OCD, ADD, SPD, Bipolar, Tourette's... and yet there is no explanation for the random fevers she has. We've had Kawasaki EKG, immuno bloodwork, urine porphrines, etc etc etc. and no one can tell me what is going on.

 

My DH found this forum and info about PANDAS a few months ago and we called Dr K and set an appt for mid-August to get an evaluation. In my heart of hearts I feel that she does have PANDAS. She's has strep SOOOO many times in her short life. The dr who removed her tonsils when she was 4 said they were some of the biggest and yet most scarred from infection tonsils he had seen in his entire career.

 

So my questions are-

 

She is on low doses of Abilify and Zoloft for anxiety, tics (not that they help), and aggression (they do lessen to an extent). Can she continue these meds while receiving IVig if that is the course of action we want to take? I see that some drs premed with Benadryl, which reacts with Zoloft according to the prescribing insert they gave us.

 

Also, will Dr K prescreen to see if she has IgA? I see that you can have bad reactions if you don't have IgA. Does he test for kidney function or do any prescreening tests before administering the IVig at all? We have had an MRI but it was over a year ago, EKG was 2 years ago or more, no bloodwork in a year probably.

 

Is there anything I should be doing to prep for the office visit or the IVig in the meantime? Questions I should ask that I'm not thinking of??

 

Thanks in advance. I wish I could share more of our story (and plan to) but I have a nursing baby in my lap and typing is difficult.

 

Manda

[greeneyes48072]

Did you do a steroid burst yet?

 

As far as the testing, Dr K did not ask us to do any of it. Being the anal person I am, I had out local peds do the IGa, kidney function and cardiologist visit before our IVIG date...just to be safe. It all came back fine, but you just don't know with how related it is to SC.

[Guest asaxon]

We finally exhausted all other options and are going ahead with exploring whether or not PANDAS is the right diagnosis. My dd9 is diagnosed with all sorts of things- OCD, ADD, SPD, Bipolar, Tourette's... and yet there is no explanation for the random fevers she has. We've had Kawasaki EKG, immuno bloodwork, urine porphrines, etc etc etc. and no one can tell me what is going on.

 

My DH found this forum and info about PANDAS a few months ago and we called Dr K and set an appt for mid-August to get an evaluation. In my heart of hearts I feel that she does have PANDAS. She's has strep SOOOO many times in her short life. The dr who removed her tonsils when she was 4 said they were some of the biggest and yet most scarred from infection tonsils he had seen in his entire career.

 

So my questions are-

 

She is on low doses of Abilify and Zoloft for anxiety, tics (not that they help), and aggression (they do lessen to an extent). Can she continue these meds while receiving IVig if that is the course of action we want to take? I see that some drs premed with Benadryl, which reacts with Zoloft according to the prescribing insert they gave us.

 

Also, will Dr K prescreen to see if she has IgA? I see that you can have bad reactions if you don't have IgA. Does he test for kidney function or do any prescreening tests before administering the IVig at all? We have had an MRI but it was over a year ago, EKG was 2 years ago or more, no bloodwork in a year probably.

 

Is there anything I should be doing to prep for the office visit or the IVig in the meantime? Questions I should ask that I'm not thinking of??

 

Thanks in advance. I wish I could share more of our story (and plan to) but I have a nursing baby in my lap and typing is difficult.

 

Manda

 

Manda, My daughter with suspected PANDAS was up to a fairly high dose for her (25 mg/day), and we felt that it was making things worse--especially the 'emotional lability'--and wasn't helping at all with the OCD. We went down to 10 mg/day, and the mood swings seem better. Then I came across an article that suggests that typical dosages of SSRI's (like Zoloft) may make childhood OCD worse, especially in PANDAS children. The authors observed that, in more than a third of their 38 PANDAS patients, SSRI's made the symptoms worse, not better. See Murphy TK, Storch EA, Strawser MS, "Selective Serotonin Reuptake Inhibitor-Induced Behavioral Activation in the PANDAS Subtype." Primary Psychiatry (2006). Vol 13(8):87-89.

 

"During the course of a prospective study on infection-triggered OCD, the authors of this case report evaluated and

followed 38 children (mean age=10.4 years; 92% Caucasian) with a past history of SSRI treatment that also met the

criteria for PANDAS with the exception that they were only required to have >= 1 GAS associations (onset or

exacerbations). Fourteen of these children reported symptoms in the behavioral activation spectrum that remitted once

the SSRI was discontinued. The most common symptoms reported were hyperactivity (n=5), mania (n=4),

disinhibition/silly behavior (n=2), worsening OCD/compulsive behavior (n=5), aggressiveness/irritability/agitation

(n=6), and suicidality/self harm (n=2). Many of these patients reported similar symptoms of activation on more than

one SSRI."

 

The authors go on to suggest that PANDAS children may benefit from a lower-than-typical dosage of SSRIs.

[Guest asaxon]

Did you do a steroid burst yet?

 

As far as the testing, Dr K did not ask us to do any of it. Being the anal person I am, I had out local peds do the IGa, kidney function and cardiologist visit before our IVIG date...just to be safe. It all came back fine, but you just don't know with how related it is to SC.

 

I wouldn't call a pre-IVIG IGa test anal, since an undetected deficiency in IGa could send a child receiving IVIG into anaphylactic shock. I'd be concerned if my doctor didn't routinely screen for IGa deficiency before ordering IVIG.

[pixiesmommy]

In my sleep-deprived state, I mistyped her meds- we WERE on Zoloft, but that was changed to Prozac, because the Z was making her manic.

 

We saw the psych yesterday and he took her off the Prozac b/c it was not tics we were seeing, but muscle spasms. He put her on a med to detox her liver and decreased her Abilify to 3 mg instead of the 4.5mg she was getting. He (thank goodness) wants to see her on as few meds as possible. We told him about an increase in bedwetting (and some day wetting) and he had no answer. We are going to our regular ped on Monday to rule out a urinary infection, but I suspect she is headed for a flare-up (her temp was slightly elevated yesterday as well.) He is excited to work with Dr K as well, which is great news. We see Dr K on the 12 of Aug.

[T_Mom]

oops--double post, sorry