PANDAS/PITAND Needs a Band Leader

[T_Mom]

EAMom, on 08 April 2011 - 09:44 PM, said:

"...I do like Dr. B.'s approach (multiple HD IVIG's)...I do wonder if my dd would be closer to 100% if we had taken that approach...Maybe Dr. B.'s approach is more likely to bring a cure? It's hard to know."

 

We need some kind soul to be monitoring the effects of these different treatment approaches--to try to determine what IS working and what is not, to verify, to record, and to SHARE what is working.

 

We need a focused "band leader" among the parents, doctors, researchers-- Someone who can bring them together yearly to compare what is being tried and what works for our kids. Please.

 

The momentum is not easy to sustain unless there is a continuing, focused effort. NIH would be the logical place to carry the torch on this, let's hope they seize the opportunity. The Autism bio-medical movement had Rimland (a parent and PhD researcher), and subsequently Edelman, at the helm of gathering doctors and researchers on a yearly basis to confer (from across the country) as to what people were "trying" and what results were being seen.

 

From that grass-roots movement (validated by the presence of CONCERNED doctors and caring researchers) came an incredible movement of help for children with autism (DAN.)

 

Let's hope this wave of interest in PANDAS/PITAND results in better treatment and focused research that is tied together by collaborative sharing of information so the suffering children, afflicted by this horrible illness, will be well again.

 

(I posted this train of thought on an earlier thread...but wanted to post more visibly on this critical need.)

Edited April 10, 2011 by T.Mom

[JAG10]

Great points, T Mom!

 

I was just wondering yesterday....if the OCD conference is on the west coast, does that mean there will be no NIMH pow-wow afterward??? That would be a shame.

 

Your Band Leader will need quite a skill set. The medical background is not enough. Strong interpersonal skills will be essential as doctors and even organized groups of parents have become wed to ideas and protocol, some more open to evolve than others.

 

I also think a standardized measurement of behaviors utilized by treating doctors would be valuable, especially for those who are dealing with this beyond initial onset. My two cents would be that an OCD scale is too narrow. I switched doctors for my dd11 and she had already had some treatment, but was not completely well, that stubborn 75% mark. When we met with Dr. B, it was very valuable to be able to share the BASC results obtained before any treatment to illustrate not only what her parents thought, but also her teachers, especially for those behaviors that aren't going to stand up and wave during a doctors visit. It just seems there needs to be a broader measurement of the psychological markers. Below are the areas measured by the BASC-2:

 

Clinical Scales:Areas that focus on disruptive behaviors or internal problems

•HyperactivityThe tendency to be overly active, rush through work or activities, and act without thinking

•Anxiety The tendency to be nervous, fearful, or worried about real or imagined problems

•Attention Problems The tendency to be easily distracted and unable to concentrate for an extended period of time

•Withdrawal The tendency to evade others to avoid social contact

•Aggression The tendency to act in a physically or verbally hostile manner that is threatening to others

•Depression Excessive feelings of unhappiness, sadness, or stress

•Learning Problems (Ages 6–21 only) The presence of academic difficulties, particularly in understanding or completing schoolwork

•Conduct Problems (Ages 6–21 only) The tendency to engage in rule-breaking behavior

•Somatization The tendency to be overly sensitive or to complain about relatively minor physical problems or discomfort

•Atypicality The tendency to behave in ways that are immature or considered odd

Adaptive Scales:Areas that focus on positive psychological features and skills

•Adaptability The ability to adapt readily to changes in the environment

•Study Skills (Ages 6–21 only) The skills conducive to strong academic performance, including organizational skills and good study habits

•Social Skills The skills necessary for interacting successfully with peers and adults

•Functional Communication The ability to communicate basic thoughts, knowledge, ideas, and feelings in a way others can understand

•Leadership (Ages 6–21 only) The skills associated with accomplishing academic, social, or community goals

 

Edited April 10, 2011 by JAG10

[T_Mom]

Good points JAG10--

I am not familiar with the BASC-2 but sounds useful as an assessment.

 

Maybe we would be better off (at least as far as available treatment) if we had a more standardized approach to medical treatment.

 

Canada has formally recognized IVIG as a reasonable treatment for PANDAS!!! Here I quote:

 

" To help ensure IVIG use is in keeping with an evidence-based approach to the practice of medicine, the National Advisory Committee on Blood and Blood Products (NAC) and Canadian Blood Services convened a panel of national experts to develop an evidence-based practice guideline on the use of IVIG for neurologic conditions. The mandate of the expert panel was to review evidence regarding use of IVIG for 22 neurologic conditions and formulate recommendations on IVIG use for each..."

 

they go on to describe findings, and on p. S99 they discuss the findings:

..."Although the evidence is limited to one small placebo-controlled trial, (this was published in 07) the results are compelling. In the opinion of the expert panel, it is reasonable to consider IVIG among the options for treatment of PANDAS. The panel emphasized that this syndrome is not well understood, and diagnosis of PANDAS requires expert consultation. The optimum dose and duration of IVIG for treatment of PANDAS is uncertain. The randomized trial used 1 g/kg for 2 days and there was agreement that this is a reasonable option."

 

they continue:

"Recommendations:

Intravenous immune globulin is recommended as an option for treatment of patients with PANDAS. Based on consensus by the expert panel, diagnosis of PANDAS requires expert consultation.

Dose and Duration:

Based on consensus by the expert panel, a total dose of 2 g/kg given over 2 days is recommended as a reasonable option."

 

from: Guidelines on the Use of Intravenous Immune Globulin for Neurologic Conditions, Feasby, Banwell, Benstead, Bril, Brouwers, Freedman, Hahn, Hume, Freedman, Pi, and Wadsworth. from: Transfusion Medicine Reviews, Vol 21, No 2, Suppl 1, (April 2007): pp S57-S107

[Stephanie2]

Interesting point about the DAN/biomed movement. They happen to be way ahead of the curve regarding PANDAS in my opinion. I just wish some of the "mainstream" docs would hear them out.

 

I use two DAN docs of my own and their treatment plan for pandas is so much more broad and thorough than any of the other docs I hear about frequently on this board. I have two children whose pandas exacerbations are very severe and we have only needed one moderate-dose IVIG infusion along the way b/c of all the other treatment modalities that they use.