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Steroid dose pack

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Dd12 has had years of struggles, and while she has been in a pretty steady place lately, she is still pretty negative. Lying, taking things that belong to others in the house, calling us all (me, included) morons, losers and such. She cannot stand to be touched and still often can't stand to hear anyone breathing. I would say she is maybe 75%. Still very hard to live with and causing a lot of chaos within the family.

 

She had a lumbar puncture a year ago and had a very high opening pressure, which can be indicative of encephalitis as well as other things. She had a mildly high tpo test which can apparently be indicative of hashimoto's encephalitis. She was hit on the head twice , which resulted in confusion both times.

 

After being told by two pANDAS immunologists that ins would not pay for IVIG, I have been trying to find someone to try a steroid burst (we have treated for lyme with no real improvement or herxing). Our neuro wants test after test after test and is fearful of steroids.

 

We ended up with a prednisalone dose pack, and I began treating Friday. By Saturday, she was fantastic. And continued to be all weekend. Not an episode. At church I put my hand on her back, stroked her arm, etc. no negative reaction whatsoever. It was amazing. As we started to taper down, her symptoms gradually increased again. She was really kind. Things were uneventful (and that is never the case).

 

Of course, we are tapering down.

Today, she has only had 40'mg (I pill). She has called me. a loser and all sorts of names, thrown a heavy skillet down on the tile floor, refused to listen to anything I say, telling me "too bad!". She locked us all out of the house and stood where we could see her with her hands on her hips and a smile on her face.

 

Yeah, the steroid helped significantly. So my question....what should I be asking for at this point? There is a dr not far from here who is a pandas doc and does use steroids. I don't think 1 dose pack is going to cut it. What should I be asking for?

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Dd12 has had years of struggles, and while she has been in a pretty steady place lately, she is still pretty negative. Lying, taking things that belong to others in the house, calling us all (me, included) morons, losers and such. She cannot stand to be touched and still often can't stand to hear anyone breathing. I would say she is maybe 75%. Still very hard to live with and causing a lot of chaos within the family.

 

She had a lumbar puncture a year ago and had a very high opening pressure, which can be indicative of encephalitis as well as other things. She had a mildly high tpo test which can apparently be indicative of hashimoto's encephalitis. She was hit on the head twice , which resulted in confusion both times.

 

After being told by two pANDAS immunologists that ins would not pay for IVIG, I have been trying to find someone to try a steroid burst (we have treated for lyme with no real improvement or herxing). Our neuro wants test after test after test and is fearful of steroids.

 

We ended up with a prednisalone dose pack, and I began treating Friday. By Saturday, she was fantastic. And continued to be all weekend. Not an episode. At church I put my hand on her back, stroked her arm, etc. no negative reaction whatsoever. It was amazing. As we started to taper down, her symptoms gradually increased again. She was really kind. Things were uneventful (and that is never the case).

 

Of course, we are tapering down.

Today, she has only had 40'mg (I pill). She has called me. a loser and all sorts of names, thrown a heavy skillet down on the tile floor, refused to listen to anything I say, telling me "too bad!". She locked us all out of the house and stood where we could see her with her hands on her hips and a smile on her face.

 

Yeah, the steroid helped significantly. So my question....what should I be asking for at this point? There is a dr not far from here who is a pandas doc and does use steroids. I don't think 1 dose pack is going to cut it. What should I be asking for?

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After our insurance refused to pay for ivig we hired a health advocate and they secured 2 treatments. We payed out of pocket for the first and they sent a check when the case was resolved. My ds is 9 but we saw very similar behaviors. We are still struggling but things have improved greatly.

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I've heard it said that if somebody responds well to steroids, it shows that they'll almost certainly respond well to IVIg. (Can't remember where I've seen that, except that Pianogirl says her IVIg nurse says it - but I've seen it in other places as well, I'm sure.) So that might itself be another argument to suggest to the insurance people.

Edited by wombat140

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