Very confused

[peglem]

My daughter actually hasn't been formally dx'd with PANDAS because basically she's a neurological mess. She is considered to be pretty severely autistic, but that's just another way to say she's a neurological mess.

She does have a definite and long history of behavioral exacerbations linked to positive strep tests- but is also considered to be a carrier. CamK2 in the SC range and high anti-D2 antibodies. Good response to steroid burst, and treatment dose of zithro. She's been doing well, comparatively speaking, for about 3 months, following a course of rifampin, then 500mg zith every other day.

 

But, since the beginning of January (a week or so after starting the higher dose of zith) she's had this rash across the bridge of her nose and across her cheek bones (like maxillary sinus area). Through January and february she has seemed to be tired a lot- napping more than usual, and generally less energetic than usual. I thought she was just recovering from the last PANDAS exacerbation (Oct,Nov,Dec). But the only thing I can find @ this rash is Lupus...and I wonder if its something I need to deal with...I mean what would Lupus (major symptoms- lethargy, lack of energy type stuff) mixed with PANDAS (hyper, high anxiety, OCD, Ticcy) look like? I feel almost as though the symptoms of each of these are battling inside her for dominance.

 

Her ANA tested in Nov. was normal- but that was before this rash, and her immune deficiencies do put her at risk for autoimmune disorders. I wonder if there is any doctor who would ever be able to sort this out w/o accusing me of munchausen's.

[Megs_Mom]

Given all of her challenges, I'd retest the ANA and/or ask for another referral to a rheumalogist for a full Lupus panel. Lupus is called the "great mimic" due to it's ability to mimic so many diseases. It also causes OCD. It's not out of the realm of possibilites, and if she is much more tired & has butterfly rash, I'd take her in. I'm sure you have, but be sure to take a picture of the rash to document if it fades.

[peglem]

Ugh, I was kind of thinking that, but the rheumatologist we saw in November kind of dismissed us and referred us to Latimer in order to wash his hands of us. So, I was hoping, if the treatment is the same, maybe we just let it go... Guess I'll start with her pediatrician...maybe he can order the ANA, and we'll have something to show the rheum, instead of it just being a PITA mom who goes on the internet too much.

[thereishope]

Do you think you have it in you to totally revamp your diet? Pixiesmommy did that and I belive she said her and Pixie's butterfly rashes went away!

 

Be careful with a dx of lupus, if she should get one. In my personal experience unfortunately, sometimes docs hand out a dx of lupus when they don't know what else it could be.

[momto2pandas]

Please keep in mind the idea of drug-induced or other kinds of lupus. I had drug-induced lupus, and it looked very much like my usual "PANDAS" type episodes except for the rash, joint pains, weakness, and an unusual amount of fatigue (actually really profound fatigue) and brain-fog/cognitive issues. Quite a number of antibiotics can be responsible for setting off drug-induced lupus, as was the case for me. My ANA was never positive, but I did have other positive autoantibodies (e.g. anti-cardiolipin antibodies - I can't recall the rest).

 

The whole business was really a pain to sort out and took a few months. I had a rheumatologist, a psychiatrist, and a very involved GP and a gazillion tests. Thank God I had better insurance back then! But eventually they did sort out that the antibiotics had come to cause the problem rather than solve it. The psychiatrist was actually Brian Fallon, who we've been discussing in another thread. He was not the main one who sorted things out but it was very helpful that he kept maintaining that we had to get to the bottom of the autoimmune thing and that he did not believe that it was psychological (speaking to the paranoia part you were talking about.)

 

 

My daughter actually hasn't been formally dx'd with PANDAS because basically she's a neurological mess. She is considered to be pretty severely autistic, but that's just another way to say she's a neurological mess.

She does have a definite and long history of behavioral exacerbations linked to positive strep tests- but is also considered to be a carrier. CamK2 in the SC range and high anti-D2 antibodies. Good response to steroid burst, and treatment dose of zithro. She's been doing well, comparatively speaking, for about 3 months, following a course of rifampin, then 500mg zith every other day.

 

But, since the beginning of January (a week or so after starting the higher dose of zith) she's had this rash across the bridge of her nose and across her cheek bones (like maxillary sinus area). Through January and february she has seemed to be tired a lot- napping more than usual, and generally less energetic than usual. I thought she was just recovering from the last PANDAS exacerbation (Oct,Nov,Dec). But the only thing I can find @ this rash is Lupus...and I wonder if its something I need to deal with...I mean what would Lupus (major symptoms- lethargy, lack of energy type stuff) mixed with PANDAS (hyper, high anxiety, OCD, Ticcy) look like? I feel almost as though the symptoms of each of these are battling inside her for dominance.

 

Her ANA tested in Nov. was normal- but that was before this rash, and her immune deficiencies do put her at risk for autoimmune disorders. I wonder if there is any doctor who would ever be able to sort this out w/o accusing me of munchausen's.

[peglem]

Do you think you have it in you to totally revamp your diet? Pixiesmommy did that and I belive she said her and Pixie's butterfly rashes went away!

 

Be careful with a dx of lupus, if she should get one. In my personal experience unfortunately, sometimes docs hand out a dx of lupus when they don't know what else it could be.

 

Thanks for the heads up, but nobody seems to want to dx my kid w/ anything but autism. Wouldn't they need some kind of laboratory indicators for a lupus dx?

[peglem]

Please keep in mind the idea of drug-induced or other kinds of lupus. I had drug-induced lupus, and it looked very much like my usual "PANDAS" type episodes except for the rash, joint pains, weakness, and an unusual amount of fatigue (actually really profound fatigue) and brain-fog/cognitive issues. Quite a number of antibiotics can be responsible for setting off drug-induced lupus, as was the case for me. My ANA was never positive, but I did have other positive autoantibodies (e.g. anti-cardiolipin antibodies - I can't recall the rest).

 

The whole business was really a pain to sort out and took a few months. I had a rheumatologist, a psychiatrist, and a very involved GP and a gazillion tests. Thank God I had better insurance back then! But eventually they did sort out that the antibiotics had come to cause the problem rather than solve it. The psychiatrist was actually Brian Fallon, who we've been discussing in another thread. He was not the main one who sorted things out but it was very helpful that he kept maintaining that we had to get to the bottom of the autoimmune thing and that he did not believe that it was psychological (speaking to the paranoia part you were talking about.)

I don't think a dx is likely w/o +ANA, though I do not know that much about lupus.

I did make an appt w/ her pediatrician for this Tuesday...we'll see what he thinks. I've been ignoring the rash for awhile, hoping it would go away, but, I don't know there just seems to be this kind of "not feeling good" going on as well...nothing too specific, and maybe its just part of her recovery. Always something with this kid!

[trggirl]

momto2pandas, would it be possible for you to post the antibiotics that were causing the problem so we can be aware of potential issues??

[momto2pandas]

First minocycline, then doxycyline. However, those two antibiotics kick off drug-induced lupus rarely. Before me, there had only been about 6 case reports of this in the literature (and all of them "looked like me"). Now I guess it's a known thing to watch out for. (Why am I always on the front of the wave having to figure things out from scratch??)

 

I don't have top of mind a list of drugs that are most likely to kick off drug-induced lupus but I do know that it can get kicked off by prolonged use or dose increases of antibiotics & other drugs. Given that your dd appeared with a butterfly rash and increased fatigue when zith was increased, that makes me suspicious. Drug-induced lupus doesn't always look exactly like other cases of lupus and the expected results of blood tests can be different so you may not want to get stuck on the ANA results.

 

 

momto2pandas, would it be possible for you to post the antibiotics that were causing the problem so we can be aware of potential issues??

[MomWithOCDSon]

First minocycline, then doxycyline. However, those two antibiotics kick off drug-induced lupus rarely. Before me, there had only been about 6 case reports of this in the literature (and all of them "looked like me"). Now I guess it's a known thing to watch out for. (Why am I always on the front of the wave having to figure things out from scratch??)

 

I don't have top of mind a list of drugs that are most likely to kick off drug-induced lupus but I do know that it can get kicked off by prolonged use or dose increases of antibiotics & other drugs. Given that your dd appeared with a butterfly rash and increased fatigue when zith was increased, that makes me suspicious. Drug-induced lupus doesn't always look exactly like other cases of lupus and the expected results of blood tests can be different so you may not want to get stuck on the ANA results.

 

Since so many of us have kids on long-term abx . . . can you clarify something? Is "drug-induced lupus" reversible then? You stop consuming the drug, and the lupus recedes or cures or whatever?

 

A little scary that there is another potentially serious side-effect to long-term use, other than that ubiquitous "super-bug" everyone's always warning you about!

[momto2pandas]

Yes, it goes away. Sometimes within days, sometimes over the course of longer (like months). I think it took me a couple of weeks to feel much better, and within a couple of months totally better. Problem was that after going off of the antibiotics I started getting recurrent infections and associated symptoms again, but those responded to other antibiotics and I never had lupus reactions to anything else I took.

 

 

First minocycline, then doxycyline. However, those two antibiotics kick off drug-induced lupus rarely. Before me, there had only been about 6 case reports of this in the literature (and all of them "looked like me"). Now I guess it's a known thing to watch out for. (Why am I always on the front of the wave having to figure things out from scratch??)

 

I don't have top of mind a list of drugs that are most likely to kick off drug-induced lupus but I do know that it can get kicked off by prolonged use or dose increases of antibiotics & other drugs. Given that your dd appeared with a butterfly rash and increased fatigue when zith was increased, that makes me suspicious. Drug-induced lupus doesn't always look exactly like other cases of lupus and the expected results of blood tests can be different so you may not want to get stuck on the ANA results.

 

Since so many of us have kids on long-term abx . . . can you clarify something? Is "drug-induced lupus" reversible then? You stop consuming the drug, and the lupus recedes or cures or whatever?

 

A little scary that there is another potentially serious side-effect to long-term use, other than that ubiquitous "super-bug" everyone's always warning you about!

[peglem]

from here:

http://www.uklupus.co.uk/facts.html

 

#

 

Only about 30% of lupus sufferers actually have the classical 'butterfly' rash that is associated with lupus.

#

 

Approximately 10% of lupus patients actually have drug-induced lupus. Drug-induced lupus is usually less severe than SLE & will disappear after the patient stops taking the particular drug.

#

 

Drugs that have definite proof of an association with drug-induced lupus include - Procainamide (Procan or Pronestyl), Hydralazine (Apresoline or Apresazide), Isoniazid (INH), Quinidine, & Phenytoin (Dilantin).

#

 

The widely used acne drug Minocycline, has been shown to cause drug induced lupus symptoms.

#

 

Drugs known to exacerbate lupus or increase the risk of allergic reactions in people with lupus, include some antibiotics (sulfa, tetracycline

)

[nomoz]

Have you seen any docs. in the PANDAS circle? Dr K or Dr T? If your daughter's autistic behavior decreases with antibiotics, her diagnosis lies somewhere in this spectrum, it seems clear. Meanwhile, if your fears are a drug-induced Lupus, can you switch antbx? Also, though it sounds crazy... you wonder if all these illnesses, when treated fiercely, just kind of come to a head somewhere.. hence the fatigue, and Lupus-like symptoms. Is it a necessary evil to improvement? I'm not a doc, just a mom - my daughter has definitely had ups and downs in her recent remission of symptoms..

Hope you find the answers you seek and good luck to you and your family.

[nomoz]

Also.. just to add.. and I'm sure you know this, but a skin rash is a possible side-effect of Zith..

[peglem]

Have you seen any docs. in the PANDAS circle? Dr K or Dr T? If your daughter's autistic behavior decreases with antibiotics, her diagnosis lies somewhere in this spectrum, it seems clear. Meanwhile, if your fears are a drug-induced Lupus, can you switch antbx? Also, though it sounds crazy... you wonder if all these illnesses, when treated fiercely, just kind of come to a head somewhere.. hence the fatigue, and Lupus-like symptoms. Is it a necessary evil to improvement? I'm not a doc, just a mom - my daughter has definitely had ups and downs in her recent remission of symptoms..

Hope you find the answers you seek and good luck to you and your family.

We saw Dr.L the 1st week of January this year- she had a light pink rash at that time, but I had just sort of noticed it on the plane ride over. I commented to my hub about it and he had noticed it for the last couple of days, but we never really thought anything of it. It has persisted...gets darker on days when she seems the most fatigued...

If it is lupus, I guess drug induced is the best kind...but, sure would hate to give up my zithromagic, it really has been the best for her PANDAS. And what if the calm down we've seen is really just lupus fatigue? I hope its just ups and downs of recovery- but that butterfly rash...anyone know anyhting else that can cause that?

Well, we'll get it checked out. I'm darned sick of dealing with all this crap!