I think something is up Bad day for danny

[melanie]

Im not hearing as much ticcing but danny hit a teacher today he also kicked and flipped a chair .He is complaining about some bad story going on over and over in his head.Hes having a hard time getting this out of his head(poor guy).He doesnt seem sick at all he said his throat doesnt hurt and his eyes seem clear. He slept alot this weekend and his skin is spotty .Does this ever end? I dont think any medication is ever going to work. I thought it was (antibiotic) but well this isnt good ,I want my kid back the kid I had 3 years ago the sweet nice un infected kid...Why id this not getting better..I think I may have to look into some serious behavioral therapy for him.Is there theripists that understand pandas? Does it matter.What kindof therapist would work with him.He just told me its ronald mcdonald that he thinking about.I wonder if like a antilepic med would help these repetitve thoughts.Risperadal isnt doing anything .

 

thanks for listening again

melanie

[Suzan]

Im not hearing as much ticcing but danny hit a teacher today he also kicked and flipped a chair .He is complaining about some bad story going on over and over in his head.Hes having a hard time getting this out of his head(poor guy).He doesnt seem sick at all he said his throat doesnt hurt and his eyes seem clear. He slept alot this weekend and his skin is spotty .Does this ever end? I dont think any medication is ever going to work. I thought it was (antibiotic) but well this isnt good ,I want my kid back the kid I had 3 years ago the sweet nice un infected kid...Why id this not getting better..I think I may have to look into some serious behavioral therapy for him.Is there theripists that understand pandas? Does it matter.What kindof therapist would work with him.He just told me its ronald mcdonald that he thinking about.I wonder if like a antilepic med would help these repetitve thoughts.Risperadal isnt doing anything .

 

thanks for listening again

melanie

 

Melanie, will you remind me, how much and what type of antibiotic is he on? I am sorry things are so bad right now. Do you find the Risperadal make it worse or just no better?

 

Bug Hugs.

 

Susan

[mama2alex]

I'm so sorry. You found recently that he's immune deficient, correct? Is he going to be able to get IVIG again? Also, what antibiotic and dosage is he taking? Maybe it's not enough.

[tantrums]

I'm sorry, I'm too new to this myself to have any advice. But I wanted to lend some moral support and hope it gets better soon for you!

[peglem]

Im not hearing as much ticcing but danny hit a teacher today he also kicked and flipped a chair .He is complaining about some bad story going on over and over in his head.Hes having a hard time getting this out of his head(poor guy).He doesnt seem sick at all he said his throat doesnt hurt and his eyes seem clear. He slept alot this weekend and his skin is spotty .Does this ever end? I dont think any medication is ever going to work. I thought it was (antibiotic) but well this isnt good ,I want my kid back the kid I had 3 years ago the sweet nice un infected kid...Why id this not getting better..I think I may have to look into some serious behavioral therapy for him.Is there theripists that understand pandas? Does it matter.What kindof therapist would work with him.He just told me its ronald mcdonald that he thinking about.I wonder if like a antilepic med would help these repetitve thoughts.Risperadal isnt doing anything .

 

thanks for listening again

melanie

 

Risperdal did not help us either, I think it made it worse. Behavioral therapy(ABA) also did not work on my daughter....but oh, boy, did they try. My daughter does not talk, so I don't know if she has thoughts she cannot get rid of. Lamictal has helped, but only a little. (still, even a little makes a difference). I don't remember your son's treatment history...but I sure hope you find something to help him.

[MomWithOCDSon]

Melanie --

 

So sorry to hear about the bad day. I don't remember reading it before; how old is Danny?

 

I'm still relatively new here, but I recall seeing several posts saying that therapies such as cognitive behavioral therapy (CBT) and exposure response prevention (ERP) don't work with PANDAS kids.

 

I'd have to say that our experience is somewhat different, as my son has been receiving CBT and ERP off and on for the last six years, prior to our discovering PANDAS and even now, through being treated for PANDAS with abx.

 

We don't look to the therapy to "cure" the PANDAS or even the OCD; we look to it to help him manage his behaviors while we give the meds a chance to kick in. And, IMHO, it DOES help. Classic to standard OCD therapy, he's learned that, while he might not be able to control the thoughts, compulsions, obsessions, etc., he CAN control his behavior -- at least to some extent. On a really bad day, he's less successful. But on a moderate or an easier day, it helps him get through his school day without being the "odd kid" or the "out of control kid."

 

I would highly recommend therapy with a good psychologist who's knowledgable about OCD and who, if not entirely knowledgable about PANDAS, is at least open to it. I'm not sure how much that matters, just because the behaviors -- at least my DS's -- are so classic OCD, that a good therapist can help your child learn to contend with them, no matter what the genesis. And that way he'll be better able to cope in public places (like school) during this exacerbation and should there be any future ones, as well.

 

Just my two cents!

 

Nancy

[melanie]

Thanks everyone for the thoughts and prayers he taking 150 clindimicin 2x a day he was ok for 2 weeks but things are turning well today was terrible I spoke witht he insurance company and they are waiting for dr T to speak with them I know they called him tonight,I have a case manager now and she seemd very eager to help. He needs the iv to get well I need the mds to make the phone calls .Im tired of this just want him to be well

 

melanie

[harmony]

Melanie --

 

So sorry to hear about the bad day. I don't remember reading it before; how old is Danny?

 

I'm still relatively new here, but I recall seeing several posts saying that therapies such as cognitive behavioral therapy (CBT) and exposure response prevention (ERP) don't work with PANDAS kids.

 

I'd have to say that our experience is somewhat different, as my son has been receiving CBT and ERP off and on for the last six years, prior to our discovering PANDAS and even now, through being treated for PANDAS with abx.

 

We don't look to the therapy to "cure" the PANDAS or even the OCD; we look to it to help him manage his behaviors while we give the meds a chance to kick in. And, IMHO, it DOES help. Classic to standard OCD therapy, he's learned that, while he might not be able to control the thoughts, compulsions, obsessions, etc., he CAN control his behavior -- at least to some extent. On a really bad day, he's less successful. But on a moderate or an easier day, it helps him get through his school day without being the "odd kid" or the "out of control kid."

 

I would highly recommend therapy with a good psychologist who's knowledgable about OCD and who, if not entirely knowledgable about PANDAS, is at least open to it. I'm not sure how much that matters, just because the behaviors -- at least my DS's -- are so classic OCD, that a good therapist can help your child learn to contend with them, no matter what the genesis. And that way he'll be better able to cope in public places (like school) during this exacerbation and should there be any future ones, as well.

 

Just my two cents!

 

Nancy

I toatlly agree with you- a good psychologist might be able to help. (unfortunately- ours is no longer in practice- and we are having a hard time finding another).

[Megs_Mom]

Hi Melanie - I am so sorry he had such a rough day. We also started in the OCD world for a long time, and did Exposure & Ritual Prevention therapy (ERP) which is part of CBT. It can be challenging, but with a really talented ERP therapist that is used to working with kids, they can break it down into tiny steps that are much less threatening. For our daughter, it was the first miracle we found. We did not find a cure in ERP - but it made every day a little easier, and helped Meg feel much more in control. Instead of severe OCD causing her to develop horrible Panic Attacks (which cause Fight or Flight behaviors), she can usually deal with the OCD. She was very severe at one point (over 30 on y-boc scale), and was able to get it down into the teens with ERP. Once the anti-biotics calmed her brain down, then the ERP became very easy to do. Now we rarely need it, but we will always make this a part of our plan if another episode hits. If you need help finding an ERP therapist, PM me or go to http://www.ocfoundation.org/. I know you are doing everything that you can on the medical side, and hope that you find anwers soon.

[matis_mom]

Im not hearing as much ticcing but danny hit a teacher today he also kicked and flipped a chair .He is complaining about some bad story going on over and over in his head.Hes having a hard time getting this out of his head(poor guy).He doesnt seem sick at all he said his throat doesnt hurt and his eyes seem clear. He slept alot this weekend and his skin is spotty .Does this ever end? I dont think any medication is ever going to work. I thought it was (antibiotic) but well this isnt good ,I want my kid back the kid I had 3 years ago the sweet nice un infected kid...Why id this not getting better..I think I may have to look into some serious behavioral therapy for him.Is there theripists that understand pandas? Does it matter.What kindof therapist would work with him.He just told me its ronald mcdonald that he thinking about.I wonder if like a antilepic med would help these repetitve thoughts.Risperadal isnt doing anything .

 

thanks for listening again

melanie

Melanie,

First, don't be discouraged... this is just one of the ups and downs of this disease. We were very discouraged the first time our ds had an exacerbation after being on abxs for months, all of a sudden he had that panic/dear in the headlights look and kept asking all these reasurance questions... a few days later we discovered his sister had strep... So, I would suggest two things: 1) make sure there isn't someone with strep around him (my son did not "catch" strep, but the exposure was enough to rev-up his immune system), 2) try some ibuprofen and see how he does.

[thereishope]

CBT and ERP often don't work while in the midst of an exacerbation, but sometimes while the child is into recovery, it is beneficial. ERP helpd my son shed his remaining OCD with his last exacerbation.

 

CBT never worked for my son since he was 5 and didn't see it as a problem and it didn't bother him. ERP, on the other hand, worked because I was able to guide him through it more.

 

 

Melanie --

 

So sorry to hear about the bad day. I don't remember reading it before; how old is Danny?

 

I'm still relatively new here, but I recall seeing several posts saying that therapies such as cognitive behavioral therapy (CBT) and exposure response prevention (ERP) don't work with PANDAS kids.

 

I'd have to say that our experience is somewhat different, as my son has been receiving CBT and ERP off and on for the last six years, prior to our discovering PANDAS and even now, through being treated for PANDAS with abx.

 

We don't look to the therapy to "cure" the PANDAS or even the OCD; we look to it to help him manage his behaviors while we give the meds a chance to kick in. And, IMHO, it DOES help. Classic to standard OCD therapy, he's learned that, while he might not be able to control the thoughts, compulsions, obsessions, etc., he CAN control his behavior -- at least to some extent. On a really bad day, he's less successful. But on a moderate or an easier day, it helps him get through his school day without being the "odd kid" or the "out of control kid."

 

I would highly recommend therapy with a good psychologist who's knowledgable about OCD and who, if not entirely knowledgable about PANDAS, is at least open to it. I'm not sure how much that matters, just because the behaviors -- at least my DS's -- are so classic OCD, that a good therapist can help your child learn to contend with them, no matter what the genesis. And that way he'll be better able to cope in public places (like school) during this exacerbation and should there be any future ones, as well.

 

Just my two cents!

 

Nancy