philamom

Biotene is another mouthwash that contains xylitol.

Been there, as I'm sure most here have as well. I remember when the only part of the day I enjoyed, was when everyone was finally asleep, and I could find some peace of my own. And, of course you feel guilty because you don't want to be near your child. Hang in there! You will find the answers and things will get better! And your child will one day appreciate all that you have done for him - trust me. Vent away (anytime) and don't hold those tears back - you are a good mama!!! Hugs.

I think kids react differently to medicines, supplements, etc., but beside ibuprofen, I like Alka Seltzer Gold.

Yes, Amtrak. It takes about 1.5 hrs to Dr. B and around 2 hours to Dr. J. Cost little more, but a lot less stressful Taxis are right there, both at New Haven, and Stamford. If you are staying at the Doubletree, you can arrange a pick up/drop off service, free of charge. Just need to tip the driver. It once took us 8 hrs to get to Dr. J's office with one pee break. bumper to bumper. And then to find out that my daughter lost a small stuffed animal during the stop. We called the office and Dr. J got on the phone and told us to drive back and find the stuffy. My daughter had major hoarding issues back then. We ended up getting to his office around 7 pm on a Friday, and a staff worker stayed behind to assist with the appointment.

They will send it out for you. Request a copy of the results be mailed to you. Will save you a phone call later. When my daughter was to sick to travel, we would need to stay over. Now that she is doing better, we tend to make it a daily trip. We take Amtrak up and back, and just grab a taxi to his office (5-10 min drive). It beats the crazy traffic around NYC. No offense New Yorkers Next month, we will stay at the doubletree to see Dr B the next morning.

He would have no problem writing a lab script to have done at home (if less anxiety), but he will probably need to run the Igenex WB at his office, so it may be easier to have it done all at once. He usually runs bartonella through Quest (Nicholas lab) or Igenex - at least in our case. You can ask them to use Emla cream, if it helps with the anxiety at all.

Hi Teri. It looks like well be missing you by a few weeks - our appt is next month. We stayed at Premiere Hotel and Suites once. Not bad- each unit has its own kitchen. They have a lot of board games in large lobby area. Also offer free continental breakfast if I remember correctly. Outdoor swimming pool- of course that's of no help now. Sometimes we add a night at NYC, or stay at the doubletree near Dr. B's office. Good Luck! btw- Dr. J will be turning 85 this March. amazing he still wants to stay in practice - god bless him.

Could the doctor order the IVIG at home through a nursing service.

We took two trips to Florida from Phila with Amtrak. Its long (20+hrs) - but both times we booked a sleeper car, and found the workers to be extremely nice and accommodating. When booking a sleeper car, it includes meals and drinks, and you have your own private toilet. Best of all (at least when we last did this 2 yrs ago), you can cancel up to three days in advance without penalty. That may have changed though.

Absolutely! Happened to us all the time. What made things worse...is my daughter would need the tooth to come out right away and rock it back and forth, releasing all that yucky bacteria. Worse thing you could do - drove me crazy. Thank goodness she only has 1 or 2 baby teeth left. Oh, and have issues with dental cleanings too. I had to tell the dental hygienist to do the minimal amount of cleaning necessary. During our last visit they switched hygienist without me realizing. It was the most painful cleaning she had ever had. By the time we got to the car she was in a flair. I was so mad.

We recently had the same problem with Bactrim (not Biaxin). We switched the liquid to tablet form and cut in half.

Agree! I'm so glad I didn't follow CHOP's advice...wouldn't be where we are today. edit - I recommended a pediatrician not to far from you on your other post. We travel to CT for our daughter's care.

You might want to try Dr. Heather Orman- Lubell, pediatrician in Yardley, Pa. She is supposedly PANDAS friendly, with personal experience herself.

Sometimes Vancomycen is needed to clear c-diff. Also, I like Klaire Ther-biotic detox support probiotic a lot. We use ther-biotic detox, florastor, culturelle, and Integrative pearls daily for prevention.

I am another one who cannot get my child on vitamin d. Even at the lowest strength I could find, 200 iu, she reacts. This is after one dose. I've tried several times and also tried to push through it. Her llmd keeps telling us how important it is.

Meetinghouse Dental Care Hatboro Integrative Dentistry www.meetinghousedental.com Lou Trovato (Wendy is good also, but I favor Lou) btw- Dr. Miller recommended this practice to me a few years back, when I had my silver fillings removed. Dr. Travoto is the one who recommended Dr. Marc Swartz in Jenkintown. Small circle...

Thinking of you...

Agree about the negative culture not ruling out strep. With all the years I've been dealing with this, at only one time did it come back positive (positive for a few months- even after treatment). That was almost 8 years ago. Before I really knew much about pandas. She had impetigo a few months prior, and it was never brought to my attention that impetigo is strep related. What I have noticed in our case though, for the last few years, is the rise of d-nase b and sed rate with strep infections. ASO has never been elevated. Also, whenever my daughter's d-nase titers become elevated, my moms titers become elevated too - they must ping pong it.

Have heard discussion in the past of muchausen in our situation. Not childrens services but school district. Somatization worded in IEP. This was with elevated d-nase tests (600), positive lyme culture with picture of spirochetes in blood sample, positive Igenex, positive quest bartonella, extremely elevated sed rate, positive ana, and many other abnormal labs. Crazy. edit- tried to directly reply to hopeny's post but unable.

Sending prayers! philamom and dd Thanks

Please, I have been around this way too long to have any respect for a doctor that would shut you down like that. Find a new doctor. As for walk in clinics, I tell the clinician that at times my dd gets strep with no sore throat, only stomach complaints (sometimes minor - which is true). I don't even mention the pandas symptoms. That way I don't get my daughter too involved in conversation. Never had any problems getting a culture. I agree with nicklemama- Unfortunately, you may need to be pushy at times. I no longer ask doctors what should be done, I tell them what I want done. Yikes, my blood pressure is rising. These are our children. A simple culture. arrgh

Thanks bostondad for sharing your side! There is a petition going on right now for signatures... "Audit BCH". Not sure if we're allowed to post the link?

Cobbie- Isn't that a very low dose of Amox for his age and weight? I think so. He is 14 and weighs in at 208. He previously was taking 875 mg of Augmentin XR. I personally think he should be on something stronger than amox after a tonsillectomy. But even with amox, that seems like a very low dose.

Cobbie- Isn't that a very low dose of Amox for his age and weight?

Thank you. I suggest everyone watch the complimentary clip from the Blaze TV at the bottom of the link. It's about 8 minutes.