colleendonny

You and your family are definitely in my prayers. I'm hoping you get some answers.

You and your family are definitely in my prayers. I'm hoping you get some answers.

We use azithromycim along with Augmentin. Augmentin is a popular abx used for PANDAS. Have you read Saving Sammy? His medicine was Augmentin. Where do you live? You should make an appointment to see a PANDAS specialist asap. Hang in there. I know, easier said than done. I'm relatively new here , since October, so I'm sure others will chime in. Everyone here is wonderful and helps out a lot. You'll get great advice and suggestions.

Thanks I did talk to someone today. Dr.B said to send me a message that she may have a viral infection and should go to the pedi's. I did not bring her, and we'll just see how she is tomorrow. I can't say I noticed many PANS symptoms coming back... She did day her eyes hurt when she looked at the light and while watching TV. And the only thing else she complains about is the cough.

Hello all. We just got back DD's IgeneX results. I have no idea what they mean until we see Dr.B the end of February. Does anyone know what the following mean? IgM IND on band 39 IgM IND on band 41 IgG IND on band 31 IgG IND on band 39 IgG positive + on band 41 Thanks everyone

Does anyone have the e-mail address for the nurses line at Dr. B's? I need to email them to ask a question. Or, does anyone know this answer? My DD5 is a little sick with a bad cough and low fever of 101. Her brother just got over a bad fever that went up to 104 and he has a bad cough as well.He also has an ear infection and his rapid was negative for Strep. A little bit ago DD said her ear hurt for a second then stopped. She is on Augmentin and Zithromax right now. Is it possible that she could have an ear infection while on the abx? And is there really a point into bringing her to the pedi's because she is on already high strength abx? Not sure what to do..

Yes Dr.B diagnosed her with PANDAS. She also tested positive for ehrlichiosis through his labs, but we are still waiting on the IgeneX labs. I'm trying to start a chart with her behaviors, and not sure what to label this.

Bumping... Anyone have an idea?

Wondering what to call this behavior from my DD. Since first PANDAS episode back in October she had done some quirky mouth movements. Mostly lip smacking, side to side jaw movements and clenching her teeth tight. I never notoce it. She just says, "Mom I just did this (and repeat movement)." I will ask her why and she will she doesn't know why. I'm wondering if this would be called a tic, OCD confession, or a combo of both?

We are being seen by Dr. B. I think I will take my DS to the pediatric tomorrow to have him swabbed. My DD is more like PANS/ PITAND. What triggered it? Not sure, maybe a sinus infection or the ehrlichiosis. Or maybe Lyme or other TBI's? At our first visit with Dr. B my strep tigers were high. Im not sure if I recall her flaring up more than the norm then. She went out with my mother in law for the day and she said she didn't notice anything... So we will see what tomorrow brings.

Is it important to.bring her brother to the pedi? I think he may just have a little virus that is going around. I am giving him children's Advil. Is that just as good as Motrin ? For my PANS DD? If this is going to happen everytime she is around someone who is sick, how do the kids ever get out? What about school? It's bound that many kids walk around school with strep and viruses.

My DD has been on abx since early December. Started off with a 15 day prednisone burst along with Augmentin. Now she is on Augmentin and Zithromax. We also found erlichiosis and are waiting for IgeneX results. Anyway, yesterday she was pretty defiant. Now extremely bit she didn't listen to her teacher for the first time in preschool yesterday. Now sure if it was from the PANDAS or from behaving like the other girls. ( her teacher said when she is with this particular group of three other girls, they cam act up.) Anyway she woke early and I gave her meds, like I usually would. I noticed this morning a few things she hasn't done in a while. She said excuse me. She days this because she thinks she farts, but she doesn't really. She also said she bumped her brother "a little hard". Which she didn't. She also said she was scared to get dressed, but she did. I know these symptoms do sound mild, but they ARE back and it makes me wonder why. PS. Her brother woke up with a fever of 102. Could she be reacting to his illness??

So glad your insurance is covering the IVIG for you. What a relief.

My DD's EEG came back normal. I am bringing her along with PANDAS DD's Children's Hospital neuroligist in February for him to have a look at her.I did notice the movements yesterday. Haven't noticed them once today. Her pedi thinks it could be baby self stimulatory behaviors. When I google it, I see a lot that says early signs of autism. But then again, she doesn't fit any other autism signs. She is meeting all of her milestones, has said her first word, mama , makes eye contact, responds to her name and interacts with my other children. Then another site said the head rocking movements are common with teething babies. She is cutting 2 teeth now. I'm hoping this neuroligist appointment goes well. Thanks again everyone.

S & S Not sure if you are in my area, MA, but if you are would you mind PMing me who you see?

S & S Not sure if you are in my area, MA, but if you are would you mind PMing me who you see?

S & S Not sure if you are in my area, MA, but if you are would you mind PMing me who you see?

Hello all. My daughter , age 5, was diagnosed with PANDAS back in December with Dr.B. He also found erlichiosis. We are still waiting for her IgeneX results, which should be in by the end of the week. My question is, for those who see Dr.J, what do you like and dislike about the visits? We are in MA, and are looking for other suggestions.I have setup an appointment with Dr.J. It is in May. I have the name of another LLMD that I am interested in as well. PM me if you would like. Thanks so much

I wonder how many more there could be? I hope Dr. T can figure some things out when he is visiting...

Dr. B said he would give is a letter for all of my kids, not just my PANDAS DD5. I have a son who will start preschool in September. And I also have a 7 month old who won't be doing anything for a while. When I do see Dr. B next month I will get the letters. We will see what our pedi says when we show it to him. He reasons with me on many levels, so we will see what us says to this. Also my sister in law is a medical assistant in his practice, so maybe he will go along with me . I doubt that will make a difference but who knows?! I don't understand . It should be a parents choice you know? They shouldn't be able to dictate these special decisions or punish our children for doing what we as parents think is right.

Thinking back on my last post got me thinking. We are no longer vaccinating our children. Can my children's pedi refuse to see us because of this decision? If he does how do we go about finding a pedi who supports our decision? I know he is already not on board with DD and her PANDAS, so much to as he is putting in a referral for her aT CHB for a rheumatologist.

She actually did get her PCV13 vax in mid December. Do you typically see vax reactions pretty much immediately or could it take weeks? I have been watching her close today and haven't really noticed it as much of at all. I hope whatever it was is just a fluke.

We had her EEG today. Won't be getting the results for a few days. I have been watching her closely and the movements have lessened. What it looks like when she does it, is kind of like the rooting reflex. I nurse her, so of basically looks like she is looking for my boob, lol. I really hope all is well with her. I may ask for a neurologist referral. DD5 PANDAS, goes the end of February, so I may bring little Lucy with us.

Thanks everyone for checking this out. I did bring her to the pedi's yesterday. Her "episodes" last between 3-10 seconds. It looks almost like a seizure. Her pedi said it could be shudder attacks. Which aren't seizures and have no neurological base. But I am bringing her in for an EEG tomorrow. I'll let you all know how it goes. Thanks again.

I'm sorry to hear Kara. Sounds like you are on the right path to getting better.