chorea is back

[bronxmom2]

As always I am so grateful for this forum... I read all the posts and learn so much and suffer and hope with all of you.

 

My DS is doing a 30-day steroid course through Dr. L... he is 3 weeks in. The first thing we noticed disappear was this weird arm swinging thing he does, which I always thought was hyperactivity but now understand as chorea. Anyway, it disappeared after a few days on steroids. Whew. Big relief. I decided to keep my son out of school while he was on the steroid, because I wanted to watch him, because his I knew his immune system would be compromised, because I wanted to experiment with home schooling (like many of you I have a gifted but unmotivated, anxious child who has areas of almost preternatural strength but who won't write and hates math). Anyway I thought I had an agreement with the school to explain his prolonged absense... long story short I got "busted" by the truancy office and threatened with a visit from Children's Service. So with a gun to my head (I couldn't get Dr. Latimer or my ped to call me back about providing a letter) I send him back to school on Wednesday. By Friday the arm swinging was back in full force, along with some other symptoms... although after a while I question my own perceptions...

 

I feel like I worked hard for 2.5 weeks to restore sanity and 3 days at school unraveled everything.

 

My feeling is that he can't tolerate the exposure at school.

 

Is that possible? Am I just anti-school and looking for an excuse to pull him out permanently?

[dcmom]

I am sorry- that must be so disappointing- school is so annoying sometimes- isn't it? (I mean on a different tangent- my dd did nothing challenging in school last year, except maybe learn some bad words from the other kids. At times I so resented the fact that I had to send her...)

 

He could have been exposed to strep. My dd had a flare up of behavoirs while on steroids, when exposed to strep. It is helpful to ask the parents, teachers, nurse, principal to inform you when someone he has contact with is sick (esp strep)- at least you can make the connection. When my daughter has had a flare up because of exposure (3 times), it stopped a few days after the exposure ended.

 

I hope he improves soon- keep us posted- will be thinking about you...

[peglem]

As always I am so grateful for this forum... I read all the posts and learn so much and suffer and hope with all of you.

 

My DS is doing a 30-day steroid course through Dr. L... he is 3 weeks in. The first thing we noticed disappear was this weird arm swinging thing he does, which I always thought was hyperactivity but now understand as chorea. Anyway, it disappeared after a few days on steroids. Whew. Big relief. I decided to keep my son out of school while he was on the steroid, because I wanted to watch him, because his I knew his immune system would be compromised, because I wanted to experiment with home schooling (like many of you I have a gifted but unmotivated, anxious child who has areas of almost preternatural strength but who won't write and hates math). Anyway I thought I had an agreement with the school to explain his prolonged absense... long story short I got "busted" by the truancy office and threatened with a visit from Children's Service. So with a gun to my head (I couldn't get Dr. Latimer or my ped to call me back about providing a letter) I send him back to school on Wednesday. By Friday the arm swinging was back in full force, along with some other symptoms... although after a while I question my own perceptions...

 

I feel like I worked hard for 2.5 weeks to restore sanity and 3 days at school unraveled everything.

 

My feeling is that he can't tolerate the exposure at school.

 

Is that possible? Am I just anti-school and looking for an excuse to pull him out permanently?

I think your instincts are spot on! How much learning vs frustration(and sense of failure) do you think your son is getting at school. Bad enough you have to fight so hard to get proper treatment for your child, shouldn't have to fight the school, or risk compromising his health because they've decided to cast a wide net to catch those few parents that do not do a good job of keeping their kids in school.

[bronxmom2]

Thanks guys.

The school definitely knows he has a hypersensitive immune system (this was my excuse for keeping him out), so they were supposedly on the lookout, and I am not aware of any specific exposure to anything.

His immunological testing was supposedly normal... could he be this sensitive?

I know I need to make this decision myself but... should I follow my instinct and send in the Letter of Intent to Homeschool?

[faith]

bronxmom,

could you describe this arm movement? I'm curous about this 'chorea' word, I've heard that but don't think my son does anything like that with his fingers. but one thing I see once in a while, actually rarely, but he did do this for a bit in third grade (he just started 5th).....he wouldlift his arm up and stretch it out (in school it would look like he was about to raise his hand), and when I saw it , he seemed to mask it sometimes by making it look like he was pointing at something. , so like he had to jet his arm out. ..

 

does it sound like that?

[dcmom]

It is such a hard decision, but, isn't your mommy instinct always about 95%? Could you homeschool through December, and then re-evaluate if things seem stable? I know at some point we have to send them out into the world, but hopefully not until they are healthy, isn't that the benefit of being a kid?

 

How does he feel about homeschooling?

 

My dd is scheduled for pex on Oct 20th. I keep extending the amount of time I will keep her out. She is in first grade- I can't imagine missing a month of school (I am only planning 2 weeks now, but will re evalute when that time is up) will matter to her socially or academically anywhere near what a relapse would mean.

 

Hugs.

[bronxmom2]

bronxmom,

could you describe this arm movement? I'm curous about this 'chorea' word, I've heard that but don't think my son does anything like that with his fingers. but one thing I see once in a while, actually rarely, but he did do this for a bit in third grade (he just started 5th).....he wouldlift his arm up and stretch it out (in school it would look like he was about to raise his hand), and when I saw it , he seemed to mask it sometimes by making it look like he was pointing at something. , so like he had to jet his arm out. ..

 

does it sound like that?

 

What my son does is like the butterfly stroke-- big arm swoops. He tries to mask it too.

[greeneyes48072]

I just wanted to add to keep in mind the steroid might have lost it's effectiveness. Dr. K said that is common. When we did a burst earlier this year, it's effects only lasted about a week. Our local peds then allowed us to go back onto it daily in hopes that would help. He again showed a decrease in symptoms when we restarted it, but after another week or two it completely lost its effect.