general source of info on PANDAS

[bronxmom2]

Hi, I am wondering if anyone can recommend a good general source of info on PANDAS and how it might impact a child in school (anxiety, deterioration of skills, especially writing problems, fidgeting, behavior, etc.)-- I am meeting with my son's school tomorrow and at the very least I want them to understand what he's been going through.

 

I am looking for something a little more authoritative than a website but more accessible than a scholarly journal.

 

Maybe Dr. K's website, though it might be a little overwhelming to someone who knows nothing about PANDAS.

 

I am going to write something myself, listing each of the symptoms he's experienced and how it impacts school for him, but if anyone knows of a good source I can use to corroborate what I am saying, I'd be much obliged.

 

Thanks!

[EAMom]

Here's a link to a similar discussion: http://www.latitudes.org/forums/index.php?showtopic=4477

 

I thought the article by schoolnursenews.org was a good one. http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

[browneyesmom]

Yes! I started a thread on this recently myself and received some great responses. At the end, I posted the ones I decided to utilize. I have not yet met with the school, but I have them prepared.

 

Here is the link to that thread: http://www.latitudes.org/forums/index.php?showtopic=4477

 

Oh, I see it is the same one EAMom posted about and yes, I agree the schoolnurse one was excellent! You might want to highlight the specific issues that relate to your son in the articles. I also felt a word doc for summarization would be helpful.

 

I hope your meeting goes well.

[michele]

I have been through the week from ###### on this school issue. Be careful what you fight for. I have a feeling it can come back and bite you!

I have been trying to get my son additional support for academics. Under IDEA, OHI, Tourettes and ADHD fall under this for service. Tourettes plus has all the great articles for school IEP's. http://www.tourettesyndrome.net/education.htm

I went in very prepared last fall with books and articles to back all the school issues from the weak areas in my son's evaluation tests the school did MFE.

They denied him help based on the fact he was too average to low average ability. They gave him reading Title 1. and OT once a week under IDEA. The IEP is to be reviewed once a year on or before the date of the last years plan.

 

I called the school psychologist last week and said tomorrow is one year and nobody scheduled the follow up meeting for the IEP. They called me back and asked for an extention month to prepare. I denied it and called the special ed director. I told him they were in contempt of the law and I had contacted the ODE and would file a complaint unless we met ASAP.

 

He called me right back scheduled the meeting the same day. He even seemed to understand TS. The principal and classroom teacher seemed very mad about the fact the special ed director took over the meeting plus scheduled it during an assembly. They tried to say how well he is doing and how far he has come. They dwelled on two work samples and how great they were. I brought others that were not as great. However, I kept pushing for more because he is still way behind and support is needed by the report card and the teacher's notes on his work daily.

 

She said everything about him was perfect never sees any issues with behavior not even his attention which she just commented on last week in the conference that he would just sit there until she walked over and got him started. She and the principal must have talked about how well they would make him sound. I wasn't buying it. I asked for addtional support in Language arts and math. They are to be writing up the goals as directed by the special ed director for next Mon.

 

Next day, my "perfect" (her words) son calls home crying hysterically in the phone. The teacher is telling him to just stop it right now. She makes him say he is sorry. I had wrote a note asking her about the bloody nose incident or possible bullying. They had said he was great socially in the meeting the day before. She tells me he made up a story about some child pushing him and his getting a bloody nose. That she had waisted an entire morning tracking it down to find he made it up. He has complained to me all year about kids picking on him, pushing him off swings. I guess he even picked out a kid from a classroom when she took him around demanding he produce the bully. Then after the kid got very upset Andrew changed his story. I think she wants to show me that we are being manipulated by him and she will not accept it. I made the mistake of telling her about his tantrums at home. She has been having me write a note about his mornings. She even wanted me to write her reports about his echoing his baby sister. She thinks he is not treating us with respect. I tried to explain that the echos are vocal tics, she isn't buying it. I made him write her an apology and attached a bag of candy!

 

So my advice to you is don't tell them too much about your home life. They are pointing the finger at us like it is a bad parenting problem not a school problem. The school doesn't get this is neurological and not behavioral. I have printed off articles underlined key ideas, talked to them on depth. I think they started to think I was making this up for attention. I can't imagine going to the time or expense to make something like this up can you? I am so stressed out I can hardly sleep at night. I wake up tired. He is only 7 and has alot more years to go. I didn't mean to cause him school problems. Now they all think I am"an issue". Granted I have had two others before him with never so much as a conversation with the principal about their academics or health. I think this is why so many families turn to home schooling with kids with disibilities.

 

Yes! I started a thread on this recently myself and received some great responses. At the end, I posted the ones I decided to utilize. I have not yet met with the school, but I have them prepared.

 

Here is the link to that thread: http://www.latitudes.org/forums/index.php?showtopic=4477

 

Oh, I see it is the same one EAMom posted about and yes, I agree the schoolnurse one was excellent! You might want to highlight the specific issues that relate to your son in the articles. I also felt a word doc for summarization would be helpful.

 

I hope your meeting goes well.

[peglem]

Michelle, that teacher sounds like a big bully! She doesn't get it, won't consider it and is controlling the info that goes to the principal and others about what is going on in the classroom. NO WAY would I be sending her notes so she can discipline your child for stuff that happens at home. None of her business! They want to use the "good papers" they chose to show that he can do that kind of work, but just isn't trying most of the time. Oooh, I'm so angry about this- its just so wrong and unfair. Which, y'know, as adults we can deal with, but its not fair to your child and that's too horrible. The really terrible thing is you won't get much help from government agencies to enforce IDEA. They may schedule an audit of the school and your child's case, but the school will just get all their ducks in a row and make it look like they are just victims of a crank call from a parent who can't even control her own child. And yes, this is why so many parents give up on getting the school to help and just home school.

[michele]

The thing of it is that she is a favorite pick for a teacher in the building. Some say the best teacher in the school. She has made accomodations for him all year trying to help him out with academics. However she has also set off a vibe that she is keeping her distance from me. She was not too good about keeping in touch all year until this morning report after conferences. Maybe in her own way, she is trying to help me get the morning behaviors under control. This is her effort to show she is assisting us. However, I think her demands are unreastic and why should she punish him for his behaviors at home? My husband said it was worth a try because I wasn't having much luck getting him together in the morning. However, it stands to be seen that he has never been late one day or missed the bus. I push him out the door in the nick of time and make sure he is there everyday. He has only missed on sick days. That takes a tremendous effort when a kid does not want to cooperate in the mornings to go to school. I think I will just stop the notes next week. Today he wouldn't cooperate and we have been doing the notes for a few weeks. There are days he is good and others that he doesn't care. She thinks she can whip him into shape with a sticker. We are giving him rewards for every 30 smiles he earns on his reward chart. I have been consitantly doing it since Dec. He still has bad days regarless of the smile face and the reward. I can't believe how they chalk it up to manipulation when we are in therapy and trying everything we can to turn around his behaviors. I just don't think they get it and in the mean time I guess I have made a bad name for myself. All I was trying to do was to get them to give him help in writing. I was afraid of this happening.

 

 

 

Michelle, that teacher sounds like a big bully! She doesn't get it, won't consider it and is controlling the info that goes to the principal and others about what is going on in the classroom. NO WAY would I be sending her notes so she can discipline your child for stuff that happens at home. None of her business! They want to use the "good papers" they chose to show that he can do that kind of work, but just isn't trying most of the time. Oooh, I'm so angry about this- its just so wrong and unfair. Which, y'know, as adults we can deal with, but its not fair to your child and that's too horrible. The really terrible thing is you won't get much help from government agencies to enforce IDEA. They may schedule an audit of the school and your child's case, but the school will just get all their ducks in a row and make it look like they are just victims of a crank call from a parent who can't even control her own child. And yes, this is why so many parents give up on getting the school to help and just home school.

[dcmom]

Michele, I am so sorry for what you are going through.

 

My daughter is only 5, so I think, all in all, this is a little easier to deal with for me than if she was older. Her teacher has been great/understanding as well. Getting out the door in the morning has been a major issue for us. During her worst OCD time of this episode, I don't think anything would have helped. The hard thing is that it is really a struggle within themselves. Now, however on the abx her issues are winding down a bit. We have found a child psychologist that deals in anxiety issues to be very helpful to us. I was doing the sticker thing, and it did not work for the morning. Now, at the psychologist's suggestion, we have been trying immediate gratification in the morning. If she can get up, get dressed, take her med, and go to the bathroom (all her major anxiety points), then she picks a wrapped gift from a treasure chest on the way out the door. At her worst, this would not have helped (may have made everything worse-upped the anxiety), but now since she is able with some difficutly to do this stuff- it is a good motivator.

 

While I am totally for hitting this pandas thing with abx (we are considering IVIG), it seems (in my very short experience) that maybe some cognitive behavoiral therapy can help for the times when their issues at are at a semi manageable level. Have you seen a psychologist or psychiatrist? They should also be able to help you with the school by speaking to the teacher and or principal.

 

Good luck!

[peglem]

Oh, I know, you were just trying to get them to understand the severity of his illness and the impact it is having on him. But, see, she may mean well, but the end result is the same. She's turned it around to where SHE is the manipulator and the controller of everything here, instead of considering that these changes in your child are due to a real illness. That shows a huge lack of respect for you and you child- thinks she knows better than you. She may be a whiz bang teacher with children who are neurologically intact, but treating a child who simply can't help it as though he can is just going to make his problems worse-not help. He needs understanding and accommodations, not just to be successful, but to feel successful. And where is he to go with the problems he is having with other kids when she accuses him of making things up and he winds up getting into trouble when he seeks her out for help? Whether she is a good person or good teacher is irrelevant here- she is mishandling this particular situation for the simple reason that she refuses to listen to you. She is a paid, trained professional- she should know better. She really reminds me of those doctors who have decided they know it all and refuse to listen. The result is your child doesn't get the help he needs, the help that she is paid to provide.

[chrisw]

Peglem,

I think your post was SO completely right on! I also feel that this teacher has a LOT of nerve. She is OUT of her area of expertise. I am also so sorry for all you are dealing with Michele. Pandas is difficult enough without having to put up with people who THINK that they are more knowlegeable about your child than you are. Have you been able to secure a prescription for Azith. yet? That really helped my son, although he is not 100%. Not unusual, I know. Hang in there.

Blessings,

Christie

[starwars99]

Whether they get it or not, believe it or not. IT IS WHAT IT IS! You know. and we, as parents do NOT have to prove anything. We know what is best for our children! Do not feel that you have made a bad name for yourself, you're just trying to be the best advocate for your child ! Make them aware of the problem and ask for a little extra help in the area that is slacking. period. We as taxpayers are actually their employer. and they are the teacher. As far as any teasing-bullying...bring it right on to the other parent. I strongly feel that a sense of normalcy is what our children need.

Just like pushing 'em out the door for the bus.