thereishope

I'm sorry. I've been in the position of thinking you had someone who was on your side and could trust, just to let down and abandoned. If a pediatrician jumps ship over a flu shot, that doesn't say much for them being a pediatrician. Good luck in your search for a replacement. I know it wasn't something you were planning on doing right now and you have so much on your plate to begin with.

How long has he been on the steroids? For each child it varies how long it take to see any effect from the steroid. For some, immediate. For others, few days to a week. Then there are those that don't see positive results until a few weeks later...maybe even after the steroid is stopped. For my son, I didn't see any results until day 4 (after 3 doses were completely in him). Also, I did not see anything dramatic. I just saw the downward spiral stop and slowly get better. Also, what is the dosing? Now, I don't know much on dosing, but hopefully, if posted, someone can tell you if it's the right dose.

Like someone else said, I am so sorry this is happening. My son did have eating problems where he wouldn't eat anything, not even yogurt or applesauce. I had to spoon feed him a little at a time. It wasn't until he went on a steroid burst did he start to eat again. But, like you said, steroids and Lyme don't go well. My son, like your daughter, also hit, spit, and acted rather animalistic. I know it doesn't help, but please realize you are not alone! As for the Benadryl, I think they make dissolving strips too. Don't know if that would help if she spit out the other dissolving med in her sleep before,but thught I'd mention it.

I can see how this particular subject (body image) is hard to decipher for that age group. PANDAS can cause things like anorexia, distorted body image, lack of eating, etc. With BDD, the person sees flaws where no one else does. If there is a small mark on the body, their brain make them see something distorted and it is much more than a small mark. It can become very debilitating. I have a relative with BDD. Even though he has BDD, the other OCD tendencies aren't that bad. However, then you look on the flip side of age. At 12, I can see how some may become self conscious of body image, but I would think it would be more of a gradual thing that escalates. It would not be rather sudden onset. For a boy, I would think that maybe even age 12 is young for this "age induced" critiquing to happen. But, then, I really don't know since my oldest boy is only 9. How long has this been going on for?

I fully agree. I have a gratitude for life and for every happy moment and non-eventful moment we experience. When my son does things that I know darn well would have been turned into a meltdown, OCD, etc if PANDAS were present and he just goes on like a "typical" child, I pause and I smile. Even after a year of having him back, that joy never fades. I thank God on a daily basis for blessing us.

Thank you to everyone who sent prayers and positive thoughts when I had my freak out moment last week when I thought I might have strep. To recap, my son has been in full remission since Sept 2009. So when I looked in the mirror last Sat and saw white spots covering my tonsil, I had a freak out moment. So, the rapid came back negative, the culture came back negative, and the white spots are now gone. For those that asked, my son's PANDAS behaviors stayed stable. Someone else mentioned karma and how if we continue to help others hopefully our children will stay well. Well, I used to hope that then when Buster and EAMom's dd got sick agian, I knew good karma had nothing to do with it. That was my kick back to reality that no matter how we try to stay in the "good graces" with God or karma, we can lose our kids at any moment. I mean, if Buster and EAMom doesn't have good karma, who does? The reality is no matter how long my son is well, my life will never be normal again. Every time he wants to change his shirt because he decided he didn't want to wear that school, I worry. Every time he washed his hands when it's not after using the bathroom, I question him. But then, I know I can't fully relax and just live life. If I did that, he could slowly drift away and I wouldn't see the early signs. Anyway, again, thank you to everyone. I appreciate it!

Good to hear things are improving! I will keep my fingers crossed along with you that you see even more strides being made. Thank you for the update!

Buster's Charting System http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

No antibiotic is 100% effective against strep. I'm sorry, but your doctor is incorrect. There are kids on here who even get strep while on Zithromax.

So, did you have a strep test done on her to see if she contracted strep at school? You would also need to remind (yes, you shouldn't have to remind doctors but that's our life)the doctor that even if she had strep, she can get a FALSE negative result if on antibiotics and he needs to let her behavaiors be his guide. I'd also probably call her friend's mom and ask if she's feeling okay. Is it at all possible to just seek out a different doctor if you've hit such a road block with this one?

It's going to take quite a while for all of us to allow those automatic defenses to go down. When you fight so long, it's instinct. So are you more comfortable with the EH class now?

I can only give my opinion...I'd try other things first. You can try anti-inflammatories, you can also give Omega 3's. Was her symptoms improving and then decline? What antibiotic is she on and for how long? Also, as for kids worsening from exposure...antibiotics will not help with that unless an anti-inflammatory property of an antibiotic is helping. The increase would only help her from being infected, This is when it's important to remember that it's the antibodies that cause the PANDAS reaction. When she's exposed, the antibodies increase, waiting to fight a possible infection.

I think the Sept to Oct months are so bad for illness due not only to the change in weather but starting school. My son's first exacerbation correlated with him starting preschool. This year, my daughter started preschool and I think she already picked something up. That preschool and kindergarten years are hard since kids are exposed to illnesses they've never been exposed to before. My PANDAS son is losing his voice now. March is a bad one too. Can we just put them in bubbles?

I am so sorry. I pray that the antibiotics do their thing. Do you think Dr K can be convinced to do a steroid earlier than 2 weeks? Maybe at least the one week mark? If she can take Ibuprofen, you can try giving her that for a week and hopefully that will steer off any impending inflammation.

Oh no. By the time I read this, you're probably already at the ER. I hope everything went okay and you were able to get a different antibiotic. I'll be looking for an update from you later. Prayers being sent your way.

Hm. I honestly don't know if the antibiotics would affect testing for Myco P. I wouldn't think so, but let's bump this thread up and see if anyone else knows:) Can you contact the dr running the tests and see if that one was run already and, if so, what the results were?

How about Wet Ones sensitive skin? They also come in individually wrapped packages. I keep the bigger canister in the car for when we got to the park.

Don't you love looking out the windows or doors to see if anyone has called the police yet? Oh, man. I was blessed they never got called to my house!

I feel your anger/frustration. Yeah, just because those other kids tested negative on rapids means no one else in the area could possibly have strep. Did they run cultures on those other kids? Bet not. As for the ped....well, luckily you read the results in detail. Contact them and tell them they messed up and then take him there for strep tests that the Urgent Care didn't do over the weekend.

I went to the doctor this morning. Rapid was negative, waiting on a culture, and got a script. This was a different doctor than usual, but actually knew what PANDAS was and understood why I needed to know if it was strep. Often, when my husband and I go to the doctor, the doctor assumes if an adult's rapid is negative it means no strep. Even though we've had false negatives. This is the first time i didn't have to request a culture for myself. I think this one may be a keeper for me and my hubby!

Okay. I think I'm getting tired so if I don't answer your question, I'm sorry. The question is whether you should start antibiotics for possible Mycoplasma Pneumonia in your non-PANDAS child, correct? I say yes. Myco P can clear up on its own in some people, but not all. Also, Myco P actually is contagious, hence why it is also referred to as community pneumonia. Does your child still have any symptoms such as a cough? That was my non-PANDAS son only symptom. He was put on 5 days of Zithromax and the symptoms went away in about 2 weeks.

It's an odd feeling. You are overjoyed to have your child back, but with an underlying hidden fear that you will lose him again and the thoughts of that causes such anxiety. Amongst the things you can do is to make sure no one else in the house has strep. This is to help avoid reinfection and exposure (which in itself can cause problems in a PANDAS child). Also, do simple things like change his toothbrush. No matter what, call the doctor before the script ends and ask...no beg...for an extension. You mention you went for walk in the bush...where do you live? I cannot remember your son's history, but by reading what's above, he was on antibiotics in August and sept. Are those for 2 diiferent strep infections? If they are, I bet it was one strep infection that didn't clear. I wish you the best that his recovery continues.

This morning, my daughter's white spot was already gone...so that's good. It's just a nerve wrecking time of year for me since our first exacerbation was on Sept 26, 2008. The thing with this is no sore throat at all, just the white bumps. the only reason I even looked in my own throat is because I check it daily now. Hopefully, mine will pass soon. It's a little better, but still 3 spots there on one tonsil.

I think I've seen these at Meijer...if you have one by you.

Thank you for sending your support. When I looked in the mirror this morning, I freaked out. Once my husband came home, I started to calm down. I've had those identical white spots before (numerous times) and it's always been viral. So, I just kept reminding myself that. I decided not to take my daughter or any of the kids to urgent care since it would be hours before they are seen and I'd just be exposing them to more illness. If that white spot is there on Monday, I will take her then. As for myself, I went to the walk in clinic and shortly after, walked out. Not the place for me. I will avoid my son right now and go on Monday if those spots are still there. I'll gargle with salt water like crazy and see if it goes away. As for the rapid tests to buy...I knew about them but never bought them. I think I will now.