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Please Help -Daughter Getting Worse after Steriod Treatment


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My 8 yr old dd was originally being treated for PANDAS with a 20 day steriod taper. Toward the end of the taper, we discovered that she was positive for 2 co-infections of lyme and may have lyme as well. We got off the prednisone as soon as we could, but she was on it for 18 days. I am afraid that it has enabled the co-infections/lyme to get stronger. She is now constantly complaining of bad headache, stomach pains, being dizzy, exhausted and she is breaking out in a rash on her face. We are scheduled to see LLMD in 2 days and I put a call into her PANDAS dr. to see what he recommends (but I don't know how experienced he is with lyme). I am really worried about her and I don't know what to do.

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What's done is done. Try not to stress too much over the steroids. If you get a chance to speak with your Pandas doctor today, ask about the possibility of increasing her antibiotics. If your LLMD confirms a tick-borne infection, then you're only 2 days away from antibiotics and a possible change of what she's currently on. So at least take comfort in the fact that it's only a few days.

 

In the meantime, definitely take pictures of the rash and document the other symptoms, particularly if headaches come at a certain time of day, or pain gets worse under certain circumstances, etc. You may also want to consider some detox options, such as alpha-lipoic acid or water with lemon. Use this time to make a list of questions, notes of things that have changed, etc.

 

Take comfort in the fact that you've been proactive on the LLMD appt. and don't look back - only forward.

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LLM and SF Mom,

 

You are right. No looking back or second guessing myself. Thanks for advice. I ran out and got the alka seltzer gold. We have been doing epsom salt baths. I have been putting in 2 cups of epsom salts. Do you think that is enough, or should I be using more? I read Cure Unknown over the weekend and I think it is making me freak out. I can't wait until Wed. to see the LLMD!

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LLM and SF Mom,

 

You are right. No looking back or second guessing myself. Thanks for advice. I ran out and got the alka seltzer gold. We have been doing epsom salt baths. I have been putting in 2 cups of epsom salts. Do you think that is enough, or should I be using more? I read Cure Unknown over the weekend and I think it is making me freak out. I can't wait until Wed. to see the LLMD!

I think 2 cups is fine. Only 40 or so hours before you're on the road, so hang in there. You can also try motrin as an anti-inflammatory, if it doesn't conflict with anything else your daughter's taking for any ASD issues. While you want to bring relief, there's also the perverse "benefit" of letting the LLMD see her symptoms in "all their glory". If a picture is worth a thousand words, an in-person experience is worth a million. So maybe a bath and one shot of alkaseltzer gold for DD and a motrin or glass of wine for yourself.

 

Think of yourself as an attorney preparing for a trial - gather your records, your evidence, your story. Prepare what you want to say and what you want to ask. Then compose yourself and trust that it will go well.

 

Laura

(oh - chances are that DD may need to have blood drawn. If she's the kind of kid who doesn't like surprises, you may want to prepare her for the possibility. If you have used emla cream or any sort of calming supplement or medication for previous blood draws, you may want to have them with you or call the office to discuss beforehand).

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LLM and SF Mom,

 

You are right. No looking back or second guessing myself. Thanks for advice. I ran out and got the alka seltzer gold. We have been doing epsom salt baths. I have been putting in 2 cups of epsom salts. Do you think that is enough, or should I be using more? I read Cure Unknown over the weekend and I think it is making me freak out. I can't wait until Wed. to see the LLMD!

I think 2 cups is fine. Only 40 or so hours before you're on the road, so hang in there. You can also try motrin as an anti-inflammatory, if it doesn't conflict with anything else your daughter's taking for any ASD issues. While you want to bring relief, there's also the perverse "benefit" of letting the LLMD see her symptoms in "all their glory". If a picture is worth a thousand words, an in-person experience is worth a million. So maybe a bath and one shot of alkaseltzer gold for DD and a motrin or glass of wine for yourself.

 

Think of yourself as an attorney preparing for a trial - gather your records, your evidence, your story. Prepare what you want to say and what you want to ask. Then compose yourself and trust that it will go well.

 

Laura

(oh - chances are that DD may need to have blood drawn. If she's the kind of kid who doesn't like surprises, you may want to prepare her for the possibility. If you have used emla cream or any sort of calming supplement or medication for previous blood draws, you may want to have them with you or call the office to discuss beforehand).

 

 

Laura:

 

Your post made me feel better. I am able to breathe now. :) Thank you for the warning on the blood work. I will need to mentally prepare her ahead of time (she is not a fan of surprises).

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