momoflivy

Thank you for posting this. It is written in clear, easy to understand language for us newbies!

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).

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!

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.

Thank you for your suggestions. I will definitely see about cutting back on her sugar intake, and will be hitting the library for those books!

Hi Wendy, I have been on the lymeinducedautism website (another member of this board had mentioned a possible connection and I googled it). I need to go back and read more, but it is very interesting! My daughter also tested positive for Bartonella and Ehrlichosis like your friend's son. I am so happy to hear about the progress he is making. We are in MA. The LLMD we will be meeting with is Dr. M. in CT. When I e-mailed ILADS for recommendations, they gave me 2, Dr. J in CT (who I've heard is wonderful, but unfortunately not an option due to our budget) and Dr. M. I also received 2 other recommendations for Dr. M as well. If you don't mind me asking, where are you located? Do you know who your friend is using for her LLMD?

Hi, I am new here. We were treating my dd for PANDAS, but her IGENEX test came back positive for co-infections and Western Blot had band 41+ and band 39 IND, so we are scheduled to see an LLMD next Wed. Last night when I was on Amazon, I saw a book that recommended a specific diet for Lyme disease. Has anyone tried it? Are there dietary recommendations for children with Lyme? We are already on a gluten/dairy (casein) free diet due to Aspergers. We avoid food coloring/artificial colorings/flavoring/preservatives etc. I am considering trying to go sugar free (with stevia or natural replacements). Also, I have been reading the posts on this board (which are so helpful), and researching the web as well, but I was wondering if anyone could recommend a good book on Lyme for a newbie? Thank you!

Hi Wendy: Thank you so much for alerting me to this potential problem. I am going to contact her PANDAS dr. first thing tomorrow morning. We have 4 days left of the steroid taper. I hope that it hasn't done more harm than good. Mindy

Thanks for your replies and info. I am going to schedule an appointment for my daughter with an LLMD to see what I can find out.

Hi, I am brand new here and to Lyme. My dd was dx with PANDAS and got testing done for Lyme and co-infections and I am trying to figure out the results. I just want to know if anyone thinks the test results warrant seeing seeing a dr. who specializes in lyme (we are already seeing DAN dr. for asperger's and dr. for PANDAS, just don't want to add another dr. appointment/fee if it is not necessary). IGenex Test results are as follows: Lyme IgM Western Blot: 39 KDa IND 41 KDa + all others were - Lyme IgG Western Blot: 41 KDa+++ (3 pluses) all others were - HME Panel Test (monocytic) E. chaffeensis IgM 1:40 titer E. chaffeensis IgG 1:80 titer B. hensalae IFA (G/M) Test B. henselae IGM <1:20 Titer B. henselae IgG 1:160 Titer Any help interpreting these results would be greatly appreciated! Thank you.

Thanks for sharing this with me. As a mom you are always seconding guessing your decisions regarding your kids and I was struggling with whether or not we should continue with steroid or taper off sooner than planned. It makes me feel better to know that other people have had similar results from the treatment. I'm sorry that it didn't work for your daughter. If you don't mind me asking, have you tried the IVIG? If so, was it successful for your daughter?

Thank you for sharing this. It makes me feel better. It's so hard to watch her go through this not knowing if she is suffering for nothing, and getting worse instead of better.

Hi, Thanks for responding to my posting. We did do IGenex blood test and it came back ok. We go to a DAN Dr. as well for her Asperger's and he recommended the Zinc as she was very low in it. Vitamin D was recommended by her pediatrician because when we did testing for Dr. B. she was concerned at how low it was. Thanks for the info about the zinc. It is definitely something to consider.

She's taking a multi-vitamin, vitamin D, zinc and calcium.

Hi, I am new to this board, and fairly new to the world of PANDAS too. My 8 yr old daughter has been diagnosed with PANDAS(also has Aspergers). We are seeing Dr. B to treat the PANDAS. We are currently on 2 tsp. 2 x a day of Augmentin and a 20 day (currently on 13th day) of tapered steriod treatment of Prednisolone. She has been worse since we started the treatment. Is this normal? Do kids tend to go downhill first and then rebound? Her OCD symptoms are getting a lot worse since we began the treatment. She is asking me questions constantly about everything, which underwear should I wear, which side of the book should I put the bookmark on, etc. and if I tell her to choose, she melts down and insists that I tell her. Tonight (day 13) was the worst it has been. She couldn't move in her room and was asking me where she should step. This lasted for about 10 minutes. She has sensory issues and is normally very particular about the clothes she wears (only cotton leggings and soft cotton t-shirts), but since we started the treatment, the only thing she will wear is her pajama bottoms with an old stained t-shirt. At first she was embarassed to be seen out in public in her pajama bottoms, but she has gotten over it now and refuses to wear anything else and then has meltdowns because it is the only thing she can wear. I am emotionally and physically exhausted (I'm sure I'm not alone there) and desperately trying to find the right thing to do for my daughter, while trying to take a crash course in various medical treatments and terminology. I am very thankful for websites like this one that have been a huge help! I would really appreciate any response or feedback from parents who have done the steriod treatment before as to what their experience has been. I was told the next step was IVIG and I don't know that we are ready for that yet. To be honest, it really scares me. I am looking into homoepathic medicine as an option before trying the IVIG. Has anyone had success with homeopathic medicine?