heatherdawn

Thanks Suzan, I really think you're onto something with the hydrocortisone. What bothers me is that the doctors haven't picked up on the connection:( They just scratch their heads, no pun intended:)

Suzan, She took Acyclovir. But that is a really good point about the hydrocortisone, too; as she did not react well to prednisone which made her lethargic and difficult to breath, like her lungs were too tired to work. Her positive lyme bands were 34 & 41. We have not looked into lyme treatment yet, as it's hard to find in TX. She has been on Biaxin for the last 6 months for mycoplasma so it seems strange that they would show up anyway.

I see your post is old, but I just did a search because we just had a bad experience. A doctor put my dd9 on anti-virals and hydrocortisone and she developed blistering sores on her scalp 5 days after. How was your experience?

I have sponge medullary kidneys. They function fine, but I have permanent stones that will never go anywhere, but can cause blood in the urine; which usually leads to UTI

peglem - her breath smell medicinal, like what I imagine the stuff in that glass bottle smells like. and her breath still smells. grace - I agree. 4 hours seemed to short. I will ask for 5 or 6 next time also. Hopefully, we won't need a next time, or is that wishful thinking? Thanks for the other link. Obviously, I didn't read it before:( She is feeling much better today. Better than she has in over 3 weeks. She is determined to go to school tomorrow; she has been out over three weeks. was your son talking about video games or something on the phone maybe?

My dd9 started with vertigo and general sick feeling just over three weeks ago. Within 36 hours, besides unable to walk straight, her jaw starting tightening, teeth chattering, and skin sensitivity. The ped said "virus". Over the next 2 days her eyebrows were raising uncontrollably and her whole body was shuddering like she was cold every few seconds to few minutes . . even in her sleep. So she couldn't sleep for three nights and I finally took her to the ER (on the fifth day of her symptoms starting). By this time her emotions were on a weird roller coaster and tics in her whole face. They were smart enough to test for current strep and past strep, which was negative. So they sent us home with a neuro appoint in 2.5 weeks and no explanations. Fortunately, we got an appointment with dr. Rao, immunologist the next day. Thank God for Dr. Rao who was very knowledgeable and tested her for myco p and said she has a chronic infection and therefore PITAND. Meanwhile, waiting for test results and treatment (other than antibiotics) seemed to take forever. After three weeks of her physical symptoms growing through her legs and feet, hands and arms; and her emotional roller coaster turning into extreme depression and anxiety, I begged dr. rao and his office to get us in asap for ivig. (the steroid had bad side effects). They complied and now its two days later. I was ill prepared for her fever, nausea, and extreme headache. She will only take motrine and her clonadine (calms the shaking so she can sleep) and nothing else. She is in tears and wishes she never agreed to do this treatment. Anyway, the smell of what I assume is the IVIG is very strong on her breath. Does this happen with everyone?

We paid $4k.

My dd9 has chronic mycoplasma and does not have anything ever show in her chest. And she has battled that dry cough for years:( It wasn't until it turned into PITANDS recently that we did the blood work and was positive. If you suspect, you should just take him to the immunologist and get tested.

I have used homeopaths for years for myself and for my dd9 for other issues. My dd9 was recently diagnosed PITANDS. Anyway I called my homeopath in CA and he overnighted me Agaricus 200c (you can't find it in Whole Foods), and it was very helpful with the ticking, not the emotional stuff. However, since this is our first experience with PITANDS; and my dd was suffering so greatly (although I'm told her "sick" feeling is not typical for PITANDS) I broke down against his wishes and got her the IVIG. He will be disappointed; and now she is suffering from the headaches, fever, and nausea side effects:( But I do firmly believe in homeopathy as it has worked some miracles in mine and my dd's life. But you have to be patient.

I had seen this recently. Disturbing! We just learned my daughter has chronic mycoplasma infection. I reviewed all of her medical records and see that I started taking her in to the ped for constant coughing, esp at night starting at the age of 4 mos old. This was just 6 days after her second round of immunizations. I took her back several times for this cough, the dr always said her lungs were clear and didn't treat until he finally gave me inhalers at 18 mos., which helped. She is now 9 and has had pneumonia twice. Now she has PITANDS and I'm wondering if we didn't inject her problem right into her at 4 months of age.

My daughter gets hives from the Azith.

In Plano TX Dr. Seshagiri Rao Immunologist 3016 Communications Pkwy # 100 Plano, TX 75093-8906 - (972) 964-7373 Very knowledgeable about Pandas and also works with Autistic children. We are currently working with him as of about 10 days ago. However, I wish he was easier to get in touch with questions. Slow to respond, but right now . . . all we have.