PANDAS Info Packet

[thereishope]

In my school district, there is a parent support group for kids with IEP's, 504 plans, special needs, and parents with any concerns about their child and school.

 

I contacted the parent in charge and asked if I could supply packets with PANDAS info to be distributed to the counselors, psychologists, etc within our district. She said she'll look into it and wanted me to send her info so she can also have it avaiable at the next meeting for parents.

 

So, I'm thinking what should I include? I was thinking of the PANDAS Fact sheet, FAQ sheet, a suggested links page. Anything else? I don't want to include too much, but this is a chance to inform a lot of people.

 

For the sugested links, I was going to include

 

PANDAS Network

This forum

Saving Sammy Book

Link to Today Show when they announced Lauren's diagnsois

Link to Beth Maloney's Saving Sammy Today Show appearance

My personal email

 

I think whatever I put together will be what I send in a mass mailing to local docs too.

 

I kind of want a brief intro page so if they only scan the packet, they will at least catch the most important thing and convince them to read more. I thought this should be the possible behavior changes.

 

Any input is appreciated.

[monarchcat]

What about the School Nurse News article? That one was at least easily readable and not too medically-focused.

 

This is a great idea! Can you keep us informed of how it goes and what you end up using in the final package? I'd like to do something similar at my son's school, too.

[harmony]

In my school district, there is a parent support group for kids with IEP's, 504 plans, special needs, and parents with any concerns about their child and school.

 

I contacted the parent in charge and asked if I could supply packets with PANDAS info to be distributed to the counselors, psychologists, etc within our district. She said she'll look into it and wanted me to send her info so she can also have it avaiable at the next meeting for parents.

 

So, I'm thinking what should I include? I was thinking of the PANDAS Fact sheet, FAQ sheet, a suggested links page. Anything else? I don't want to include too much, but this is a chance to inform a lot of people.

 

For the sugested links, I was going to include

 

PANDAS Network

This forum

Saving Sammy Book

Link to Today Show when they announced Lauren's diagnsois

Link to Beth Maloney's Saving Sammy Today Show appearance

My personal email

 

I think whatever I put together will be what I send in a mass mailing to local docs too.

 

I kind of want a brief intro page so if they only scan the packet, they will at least catch the most important thing and convince them to read more. I thought this should be the possible behavior changes.

 

Any input is appreciated.

GREAT IDEA

[nevergiveup]

Vicki,

 

First of all, you are an excellent advocate. You will be helping many children by creating awareness in the community.

 

I would ONLY give them data from doctors web sites or published data from studies. I love the faq sheet but if anyone finds out it came from a chat site you'll loose your creditability and you'll will be cut off from future things. I would publish a desk top sheet with info for mothers to talk with other mother and advertise this web site address. Again mention its just for mothers to communicate with other mothers if they need social support. I know of several doctor web sites that are very good like the rheum at boston childrens, and a neuro in dayton. Also I think a very good document explaining the symptoms, onset, differentiation from ts, are in a document published in 2005 by murphy, larson, storch in the Journal of Family Practice. Called "Is it Pandas? How to confirm the sore throat *OCD connection? That sure will get the mothers attention. She even speaks about treatment options and even states immun therapy is ok for the most severest cases. But goes the conservative route for most kids, SSRI and CBT and maybe prophylactic abx is necessary. She sites case examples that will get teachers and moms alert. The schools will listen if the data comes from the experts. I think this is AWESOME. More parents pushing Gilbert to look harder and think out of the box.

[MichaelTampa]

Not sure how much volume and duplication you want, but the webpediatrics.com site (Dr. Kovacevic) has a couple/few excellent pages of basic information on the topic.

 

Michael

[Fixit]

I like this one alot..

 

http://psychcentral.com/news/2009/08/12/an...r-ocd/7699.html

 

 

 

its current

easy to read.

1 page

can print and hold it in hands/put in file

not limiting...says may begin as... leaving open other possibilities and variations

shows there is science going on to affirm this(finally) ONly 8000 more issues or variations to go(pitands/allergies, etc)

[thereishope]

Thanks for the ideas!

 

I understand what you mean about the FAQ sheet. It makes sense. I suppose if the defintion of PANDAS itself sends up any red flags for them, they will contact me via personal email or come here. At that point, we/I can provide more information.

 

Do you think for the school, it would be okay to provide the links I suggested? I could put a header like...

 

"Suggested links from a Family Living with PANDAS".

 

For the school, one the most important things ( besides a list of possible PANDAS symptoms) I want to get across is that you can have strep w/o classic symptoms. I was one of those parents who googled sudden onset OCD, PANDAS popped up, and dismissed it because I thought my son didn't have strep.

 

I could end up having a differnt packet for the school and a different one for the doctors. I know the pediatricians will only read what I have backed by research.

[Joan Pandas Mom]

Nevergiveup, that is an excellent point, but do we (PANDAS parents) want to promote any Dr.'s work that goes the conservative route with PANDAS? I have been there (past 6 years) and from what I have experience and what I have been reading, especially on this website, is that SSRI's are not effective for PANDAS. Just a thought. I feel like I have wasted many years on that route.

 

Vicki,

 

First of all, you are an excellent advocate. You will be helping many children by creating awareness in the community.

 

I would ONLY give them data from doctors web sites or published data from studies. I love the faq sheet but if anyone finds out it came from a chat site you'll loose your creditability and you'll will be cut off from future things. I would publish a desk top sheet with info for mothers to talk with other mother and advertise this web site address. Again mention its just for mothers to communicate with other mothers if they need social support. I know of several doctor web sites that are very good like the rheum at boston childrens, and a neuro in dayton. Also I think a very good document explaining the symptoms, onset, differentiation from ts, are in a document published in 2005 by murphy, larson, storch in the Journal of Family Practice. Called "Is it Pandas? How to confirm the sore throat *OCD connection? That sure will get the mothers attention. She even speaks about treatment options and even states immun therapy is ok for the most severest cases. But goes the conservative route for most kids, SSRI and CBT and maybe prophylactic abx is necessary. She sites case examples that will get teachers and moms alert. The schools will listen if the data comes from the experts. I think this is AWESOME. More parents pushing Gilbert to look harder and think out of the box.

[nevergiveup]

NÓ we really don't want to promote SSRI use. Murphy warns that SSRI can be detrimental to PANDAS. You know, some parents love and trust their docs. They really have no idea what it is like to have their child diagnosed with a politically incorrect disease. One that, if the doc legitimizes the illness, other docs may hurt the docs career. Also many parents will go to neurologist whom will tell them that the illness will disappear and many kids have tics and ocd.

So thats exactly what they want to hear. Oh good it will go away, thank god. So awareness is key so they understand that the strep correlation exists. Most people don't understand autoimmune conditions and they trust their docs. Obviously if the child gets worse and the docs offer nothing up, hopefully the parents will start searching. This is a sore subject for me right now because a friend of mines beautiful little boy was just diagnosed by her ped with PANDAS. She, Monday went to the very same neurologist I was sent to 7 years ago whom does not believe in pandas and is resentful of mothers who do. She knows what I have been through intimately, she is my dd's godmother, and she said to me "I trust my pediatrician she know what she is doing". My belief is to create awareness, so these docs cannot keep saying this disease doesn't exist.

 

I don't know really, I guess its up to Vicki, her target audience and her purpose. I have noticed that the Saving Sammy stuff has not received too much controversy, people are listening and interested because its a simple story to understand, one that isn't too complicated and it makes sense. Strep in brain caused brain issues, abx cured strep brain issue not SSRI. We know its more complicated but, the average joe gets it, and is more aware now than ever, and parents are coming to the forum, seeing specialists and putting this illness on docs radar. At some point people will start asking what the A in pandas stands for.

[thereishope]

Oh, no!

 

You have no idea I want to put the disclosure "if you suspect PANDAS, please do not see Dr Gilbert". All the parents, doc, etc that I need to reach out would be sent to him. I just hope they contact me first.

 

What I am hoping and praying for that is f I can even get a couple of doctors to read what I have to give, they may question what Gilbert preaches. All the docs I want to contact refer to Cinci Children's. I can't deface him to the local peds. They will never read or listen to what I have to say.

 

This is not good. Just not good.

 

If you want pass on my email to your friend, let me know and I'll send it to you. I live in Anderson Township to be more exact.

[nevergiveup]

Its weird Vicki, my friends ped took the aso titer, saw piano fingers and tics and immediately said PANDAS. Prescribed PEN VK for over a year and then booked an appt for Childrens. OK so now what, Childrens is going to tell her the illness is not real and they do not think he should be on PEN VK. The tides are turning when the peds are diagnosing and prescribing. Twenty bucks Childrens doesn't interfere with peds decision. Its too common now, Gilbert is going to start to loose credibility in this community if he doesn't start to understand one year of PEN VK won't hurt and if it prevents a relapse then great!!! He claims to be a leader in tics and ocd but soon no one will trust him, lets see Haldrol or abx....... Hard decision, He actually tried to give my beautiful dd Haldrol in the emergency room. Are you kidding, and he says no ivig because it may harm the children, but Haldrol is safe??? Anderson huh, were close by. Let me know if there is any way I can help.

Oh, no!

 

You have no idea I want to put the disclosure "if you suspect PANDAS, please do not see Dr Gilbert". All the parents, doc, etc that I need to reach out would be sent to him. I just hope they contact me first.

 

What I am hoping and praying for that is f I can even get a couple of doctors to read what I have to give, they may question what Gilbert preaches. All the docs I want to contact refer to Cinci Children's. I can't deface him to the local peds. They will never read or listen to what I have to say.

 

This is not good. Just not good.

 

If you want pass on my email to your friend, let me know and I'll send it to you. I live in Anderson Township to be more exact.

[thereishope]

Well, I think this is what Gilbert is doing. He will give a verbal diagnosis of PANDAS but not tell the parent that he is not putting it in writing in their med file. He marks "no" in the med file. Then the ped sees the "no" box marked and figures it's not PANDAS. It is because of Gilbert that I had to fight my ped over my child not being bipolar. Gilbert even prescribed a 5 day steroid for my son. But then when I inquired about it again in another exacerbation he says I'm looking for a quick fix and wouldn't give it. Literally as quick as my son had OCD, Gilbert was anti PANDAS and sending my son to psychiatrist.

 

I don't know why I try to understand that man. I don't know what he is accomplishing by messing with these parents.

 

I want to address him on this, but I don't even know if that's a good idea. I don't want to give him "insider information" about ped's getting the truth.

 

I'm suprised your friend's son got PEN VK for a year. Hopefuly that is s sign that ped's are opening their eyes. Even when I've questioned docs about their treatment of Rheumatic Fever and prophylactic antibiotics, they pretty much dismiss me, change the subject, or if on the phone, abruptly hang up.

[nevergiveup]

He actually diagnosed my kid with sc. Then after blood and mri said lupus. But would not give me her ANA results said " I would never understand them anyway." So I walked down the hall and insisted on knowing what my dd's ANA results were. He refused to give her test results. He never gave them to me I had to get them from rheum her ANA was 1:2560.

 

All this and originally, we hadn't even made an appt with him, his nurse called us at home and said we had to come in immediately, that the er should not have sent us home. He gave us money to be in an sc blood study, had us sign wiavers saying we could have results of study and then when I called to get study results a year later he said she never had her blood drawn. We had to have an escort examine and be at the blood draw and take the "special" vial as per study req's and then he tells us she wasn't in it and I am a liar? He even gave my dd ten dollars in cash that she took to school and gave to a charity. I have the papers and docs i signed for the study with all the proof but by then we just tried to stay away from him it was hurting my dd's care. Not to mention he also completely confused my pediatrician. If I have a problem that needs addressed by a tics expert I would see someone with a better rep than his probably hopkins.

 

 

 

[

quote name=Vickie' date='Dec 17 2009, 08:08 AM' post='49063]

Well, I think this is what Gilbert is doing. He will give a verbal diagnosis of PANDAS but not tell the parent that he is not putting it in writing in their med file. He marks "no" in the med file. Then the ped sees the "no" box marked and figures it's not PANDAS. It is because of Gilbert that I had to fight my ped over my child not being bipolar. Gilbert even prescribed a 5 day steroid for my son. But then when I inquired about it again in another exacerbation he says I'm looking for a quick fix and wouldn't give it. Literally as quick as my son had OCD, Gilbert was anti PANDAS and sending my son to psychiatrist.

 

I don't know why I try to understand that man. I don't know what he is accomplishing by messing with these parents.

 

I want to address him on this, but I don't even know if that's a good idea. I don't want to give him "insider information" about ped's getting the truth.

 

I'm suprised your friend's son got PEN VK for a year. Hopefuly that is s sign that ped's are opening their eyes. Even when I've questioned docs about their treatment of Rheumatic Fever and prophylactic antibiotics, they pretty much dismiss me, change the subject, or if on the phone, abruptly hang up.

[thereishope]

.