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MIAS_MOM

Home School for an ODD child.

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My dd 11 is VERY odd with her father, sister, brother, and ofcoarse especially me. We r in a private school, she refuses to go. We fought through public school up till this new school year with a 504 and a very great group of faculty at that school. We are running out of options here. We could also send her to a middle jr high school, but she would run away from there for sure, like really run away, she does this all the time in times of confussion and fear, threat. She has not learned anything in the last 3 years, my other thought is special ed classes, this really upsets my husband when i bring it up, but with the "high enlopement" threat, I think it might be a safer way, and I can see her "helping" the kids in that class, which would boost confidence. I think if i try to homeschool her, i will lose money in that just like we are in the private school. she is impossible !

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I'm sure you're doing everything you can to deal with your DD's underlying health issues that might be behind her behavior, so I'll assume that your question is about how best to manage the way she's behaving now, especially when it comes to school. Right?

 

It seems to me that good teachers have a very special skill set, and that teachers of children with emotional and/or mental issues -- transitory or permanent -- have an even more specialized skill set. That's not to say that you couldn't successfully homeschool her . . . that's just to say, is that the best use of your time and resources as a parent and a spouse? And, as you've suggested, would it not be a good thing for her to be around some other kids on some level so that her social avenues don't lie entirely dormant during this period?

 

But to put her into a self-enclosed special ed class, won't you have to convert your 504 Plan to an IEP? Frankly, if she's literally a "flight risk" at school, I'm amazed the school hasn't already gone that route. But even with an IEP, she could be "mainstreamed" into general education classes to the extent that she was capable of attending and participating; perhaps that would help with your DH's objections. Furthermore, with an IEP she would have access to social work and/or psychologist sessions, during school hours and on school grounds, and those resources might help her develop some tools for better managing her behavior and/or the stress that could be behind some of the acting out and running away, as well as finding ways in which to help her build her self-esteem, despite all the chaos PANDAS brings to her daily life.

 

My DS has an IEP and takes all general ed (even some advanced/AP general ed) classes while still having the technical designation as a "special education student." But in addition, he has a group social work session (currently working on social skills, which he's delayed in thanks to this danged disorder) and a private school psychologist session weekly, as well as a daily resource period with a special ed teacher for catching up, organizing, prioritizing, talking through any issues in his gen ed classes, etc. Initially, I didn't especially care for the idea of my DS being a "special ed kid," either, but I have to admit that it has been a saving grace for him in the school environment.

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I think maybe you will be putting too much stress on yourself if you try to home school. I home schooled my son for 2 years and it was a very mixed experienced and very stressful to me. My son and I fought quite a bit.

 

One big advantage is that they are protected from exposure to the illnesses of other kids-- so you can eliminate one of the variable and see if she improves just from that. They can sleep in and get plenty of rest and exercise and time outside. I liked being able to go to museums and stuff on quiet days (we live in NYC where stuff is overwhelmingly crowded on weekends). So you do get a chance to reconnect to your kid but, like I said, my son and I ended up fighting a lot, because in the end I was too frustrated when he did not live up to my expectation.

 

When I did send him back to school (this year) it was obvious after two days (from the look on the poor teacher's face) that he was going to need some extra help, so I got him a prescription for Strattera. This has been a miracle for us. I would not say my son has ODD but he was definitely defiant, excitable, impulsive... the Strattera addressed these things. This is just our experience.

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I am home schooling my 7 year old this year and I love it.. her not so much but she knows that she is away from all of the kids that are making her sick and she has learned so much this year because of the fact is that everytime she has started school she got sick and then she went into PANDAS and then we would start ALL over again.. I hope to put her back into school next year.

I have her in a program it is called cova k12 and it is also through her school district so if it dont work out for her next year I can just go through the school.

So I would talk to the public school to see if they have a home school program

It takes sometime to get a program worked out but once you into the swing of things

it works out.

I also work part time

I hope this helped

Tracie

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What do you mean when you say your son is socially delayed? When his PANDAS recovered didnt he recover as well?

 

He is recovering, but he remains behind; assuming he remains reasonably healthy, I would hope that he'll draw even with his peers eventually, but it has been a long, hard slog.

 

This is one of the main points some of us have tried to make behind the importance of timely diagnosis and treatment, as opposed to accepting these diagnoses of behaviors (like OCD, TS, ADHD, general anxiety, etc.). My son was contending with anxiety and OCD for years prior to his PANDAS diagnosis and treatment, so he developed behaviors and "coping skills" that he's had to "unlearn" as his health has improved. So his social awkwardness in dealing with peers, his shyness, his latent skills at reading body language and understanding innuendo, etc. . . . . we attribute much of that to those years in which he was constantly fighting just to maintain his composure in school and in social, group settings. He couldn't afford any resources or focus to go to the normal, age-appropriate learning of these other components that non-PANDAS kids take for granted by the time they reach their teenage years.

 

I'm sure it is different for children who have sudden, abrupt onset at 4 or 5 and are treated right away; they don't spend years in the "half-light" of mis-diagnosis and behavioral, as opposed to medical, treatment, so their brains aren't hijacked for a crucial period as my DS's was.

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Pandas16--your question to Nancy hits home to me this morning (so I wanted to chime in.)

 

I do not believe that the issue is that anyone has "waited" to treat PANDAS.

-- it is more often the case that parents may suspect a PANS reaction is contributing to their child's (essentially) physically-based mental struggles, but they are entirely unable to find anyone to HELP them.

 

(sorry, get ready for the rant/vent) -- the issue is NOT that parents may not know, but that the MEDICAL FIELD is not responsive to the plight. The medical field is WAY behind on this one.

 

The best thing that has happened for any of us on here, in the last 5 years, is the publicity brought about by pockets of "effort" to publicize, meet, organize, and get the face of PANS in the public eye. --AND these groups of parents are seemingly not connected!!! --except by this horrid illness.

 

If any of us wants to "help" others get through this -- get involved when you can, once your own child is out of "crisis" mode.

Edited by T.Mom

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Just to chime in on the "waiting".... It is not nearly as clear with the kids that are not sudden onset and / or that are affected at an early age when the symptoms can be misread as developmental. Add that to the new developments in PANDAS research and it becomes very easy to be mis-diagnosed. The residual issues also cause a challenge because these kids do not always return to baseline and there comes the question of "normal" OCD and anxiety. Trust me... It is not always as "easy" to see on the outside. I definitely relate to momwithocdson... My child is similar and many years younger and we still are searching for the right answers.

 

Pandas16--your question to Nancy hits home to me this morning (so I wanted to chime in.)

 

I do not believe that the issue is that anyone has "waited" to treat PANDAS.

-- it is more often the case that parents may suspect a PANS reaction is contributing to their child's (essentially) physically-based mental struggles, but they are entirely unable to find anyone to HELP them.

 

(sorry, get ready for the rant/vent) -- the issue is NOT that parents may not know, but that the MEDICAL FIELD is not responsive to the plight. The medical field is WAY behind on this one.

 

The best thing that has happened for any of us on here, in the last 5 years, is the publicity brought about by pockets of "effort" to publicize, meet, organize, and get the face of PANS in the public eye. --AND these groups of parents are seemingly not connected!!! --except by this horrid illness.

 

If any of us wants to "help" others get through this -- get involved when you can, once your own child is out of "crisis" mode.

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how long was your son undiagnosed and from what age??? Why did you wait so long to seek PANDAS treatment?

 

Thanks for jumping in there, TMom and sww817!

 

That's exactly it, pandas16. He began displaying high anxiety, including separation anxiety, at about 3. We had him evaluated and they told us he was "sensitive" and "very bright" and that he would grow out of it. When the OCD made its appearance at 6 and then resurged at 7.5, I inquired both times about PANDAS, but was shot down by 3 doctors. At 7.5, I basically lied to the pediatrician and connived a strep culture, but when it came back negative, I felt as though I'd exhausted the current options.

 

It wasn't until "Saving Sammy" came out and I read that Sammy, too had been classically asymptomatic for strep, but that it was the blood tests that convinced doctors to help him that a new avenue was identified for us. So, when my DS was 12, we took that newly revealed road. So he went for something like 6 to 9 years without PANDAS interventions. And I don't think our story is all that unusual either, particularly in terms of older kids.

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I was treated aggressively within a year in 98 and I'm 23...

 

And I'm very happy for you; you were fabulously lucky to be in the right place at the right time.

 

Forgive me if I bristle a bit at your tone. Neither I nor any other parent here "waited" or ignored or stopped turning over stones when our children became ill. In some cases, we were shown the door repeatedly when we searched for answers other than the standard old saws. In others, we mistakenly trusted in these professionals with glorious credentials and reputations to match, but who, in retrospect, should've shown more intellectual curiousity and concern for our children.

 

Just a week ago, I even met a mother who VERY RECENTLY was reported to CPS for suspected Munchausen's By Proxy by a local doctor because she acknowledged having carried her sick son to doctor after doctor, seeking answers other than the ones thus far provided her, like bi-polar and autism.

 

Not everyone has access to the resources available to some, and it is naive to assume that they do, and judgemental to suggest that they should have. Life isn't fair. :(

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how long was your son undiagnosed and from what age??? Why did you wait so long to seek PANDAS treatment?

 

You were very,very ... lucky to be in the right place at the right time. My son got sick Nov 97 - missed a week of school and started having behavior changes and seizures the next week. I took him to the doctors (many diff kinds looking for an answer and was referred and referred and referred). Sept 98, I made an appt with a new psy (didn't take insurance and paid out of pocket). This doctor was trained at the NIH and knew about PANDAS. He was told to treat like TS, OCD and ADHD. This means meds and more meds to treat the side effects - no abx. My son was on 6 meds just so he could do school. I was told to keep him in school because he needed the social experience. BIG MISTAKE. My son was gifted in math (accepted into g/t program) and is now a high school dropout. He had the high titers and could not get help. I started to look into autism info jan 2010 and found the autismone website about pandas and information about the book saving sammy. I read the book and cried for 2 months. Mar 2010 I had appt with dr b for june. He was never treated for pandas until then and not because we waited. I repeat "you were very, very ... lucky."

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I am leary to post as I am so biased towards homeschooling. We have always homeschooled my son, and I wouldn't trade it for the world (neither would he).

 

But I would say, if there is anyone struggling to get a PANDAS high schooler through to graduation, homeschool is truly a viable option. It is VERY easy to get a simple diploma for a high schooler through home education, even with their PANDAS, mostly because you (as their teacher) have so many options. You can truly tailor their education specifically to them. If anyone sees their child as possibly dropping out, please consider homeschooling. It would be much easier than having them try to get a GED later.

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    1. 1. If you are the biological mother of a child diagnosed with PANDAS or PANS (or you believe the child has PANDAS or PANS), please select your blood type below:


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