Bio and adopt

Could you PM me the names of any LLMDs in my area? Thanks

My PANDAS daughters Western Blot was positive IGg 18 and 23 through Lab Corp. I took her to a Infectious Doctor who said it was probably false positive and nothing to worry about. The only LLMD in our area is two minutes from our house but is not taking new patients. I have tried three different calls to this LLMDs office, even tried not mentioning lyme just that we were looking for a new PC and still no new patients. Where do I turn? We are in South Eastern VA. Do I need to even bother looking for a LLMD with these blot results? Thanks

My 20YO PANDAS daughter was famous for telling lies. She would tell lies about stuff that wasn't even important. Also everything was always someone else's fault. I do believe this was part of her PANDAS, but I never felt like it was a compulsion. If anything it was more impulsive, like telling a lie before she really thought out her answer. She made impulsive choices about most things and lies came out fast with no thought into them. She was always quick to assume the worst in every situation before she even took time to really look at the situation. She has gotten much better since she is older, although sometimes I can see that she almost answers with lie but puts a little thought into it and comes out with the truth. On the other hand my 15YO with PANDAS couldn't tell a lie if he wanted to, one of his compulsions has been telling me about everything. Somethings he had to tell me were not worth the breath he used to tell me, but he felt he had to tell. Its crazy what PANDAS can do to a child's mind.

Just heard there will be a update on Lauren Johnson tonight on our local news. So glad to hear there will be another opportunity for people to hear about PANDAS. Hopefully each public exposure will help another child. Thanks Laurens Mom for taking time to get the word out about PANDAS.

Yes 4YO was positive on rapid they put him on Keflex.

I finally took 4YO because he started running a low fever and cough was just getting worse. He never mentioned his throat hurting.

Last week I was asking "What is making my 15YO's tics act up so bad? Is it the new allergy medicine, the broken arm, etc." Well I have the answer, our four YO has strep. He had a cold and cough but strep was not even a thought. DDDUUUUHHHH! I should have known but when you are focused on the 15YO's problems the 4YO's cold seemed minor. I took 15YO to doc. rapid strep was negative but they are running cultures and they went ahead and put him on antibiotics, Omnicef. Thank You Mr. Pediatrician for the antibiotics with a negative rapid!

I am thinking about do Cam test. My son has been diagnosed over the phone by one of the PANDAS docs. (But isnt getting anywhere with treatment because Doc cant be reached) I am wondering if i get Cam done and results are in PANDAS range what will my local neurologist say. He is skeptical of PANDAS, will he be able to come up with some excuse why his CAM results are high? I dont want to spend the money and local doc say oh well these results prove nothing. Has anyone taken results to skeptical doc and gotten them to change their mind and help with treatment? Should I give up on trying to get help from local docs? I am in South Eastern VA.

I want to have our whole family checked for strep, although no one is symptomatic. Do they do rapid test, cultures or blood antibody test? My PANDAS son had strep 6 weeks ago and now is in a exacerbation. I had a script for Biaxin XL and started him on that. If I take him for retest will he be negative because of the three days of antibiotics? Should his strep titers be elevated at this point? Although I dont believe his titers get elevated which makes this harder.

Wondering if you have checked out goggle image for erythema marginatum (a condition which may be linked to strep antibodies...if I'm remembering correctly). I'm wondering if the two conditions could be mistaken for one another? The spots on his leg are definitely ringworm, he is a wrestler and very prone to ringworm. Anyone know why some kids get RW a lot and some kids never get it.

Where in NC are you? We are in South Eastern VA .

Forgot to say he also has three ringworm spots on his leg, could this cause increase in tics? I am going to copy and paste from my post yesterday. My sons snorting tic is really bad. It is so loud and hard he will not be able to continue to go to school, it is too disruptive. He is in high school and cant afford to miss days. We do not have a local doctor to help. The out of state PANDAS doc we had been using suddenly began to be unreachable. What do I do to help him. below is run down on my sons current situation and what we are doing? My 15Yo sons main tic is snorting. Tonight he is snorting continuously and very hard. Last week he was diagnosed with severe dust mite allergies and yesterday started Veramist and Zyrtec. Could this be making his tic worse? Over the weekend he started of complaining of frequent urination. No pain, burning etc. Frequent Urination syndrome has been one of his PANDAS symptoms in the past. He was diagnosed with strep on September 20, so it has been about six weeks since that. Could that be the problem? He also broke his arm this weekend but I dont see where that could be a problem. I have never heard of body trauma causing increase in symptoms. Does anyone have any thoughts on this? I have some Biaxin XL and am going to start him on that and he is already taking Ibuprofen for the arm pain.

My 15Yo sons main tic is snorting. Tonight he is snorting continuously and very hard. Last week he was diagnosed with severe dust mite allergies and yesterday started Veramist and Zyrtec. Could this be making his tic worse? Over the weekend he started of complaining of frequent urination. No pain, burning etc. Frequent Urination syndrome has been one of his PANDAS symptoms in the past. He was diagnosed with strep on September 20, so it has been about six weeks since that. Could that be the problem? He also broke his arm this weekend but I dont see where that could be a problem. I have never heard of body trauma causing increase in symptoms. Does anyone have any thoughts on this? I have some Biaxin XL and am going to start him on that and he is already taking Ibuprofen for the arm pain.

would a confirmed strep with no elevated titers help with insurance approval if we get to the point of needing IVIG? Does no elevated titers mean immune problem?

My son had blood work done in Aug. his strep titers were normal. He had not had confirmed strep in awhile. In Sept. he had confirmed strep. How long should we wait to redo blood work? If his titers are still normal with confirmed case what does that mean?

I live in VA and have a 15YO and 20YO with PANDAS. Back in Aug we began working with a very knowledgeable PANDAS Dr. out of State by phone. They agreed kids had PANDAs and started running bloodwork and prescribed antibiotics. We paid this Doc several hundred dollars to help with their treatment. The Doctor was quick to accept them as patients but since has become almost none existent . I have talked to them on the phone about five times three of which were very short. Each time they would schedule a call time and if they called it would be hours late or rescheduled. I always made sure to have all information they needed ready for phone consults to use as little of their time as possible. I am very conscious of the fact that their time is very expensive and have not used nearly their time I have paid for. I have sent many emails and left many messages with no returns. I am not sending emails or leaving messages about anything other than trying to reschedule a phone consult appt. the doctor set and never called that was Sept 20. The one email they did respond to I had summarized all of my attempts to contact them with no response and offered if they did not want to continue to treat my kids to just let me know. They did reply to that email with an apology and said they were busy and did want to continue to treat my children. They said they were trying to do better with communication. Unfortunately nothing has changed. (Sorry for long explanation) My question is what do I do? We have spent a lot of money with this doctor and cant afford to pay to start with new doctor. Because docs are out of state my insurance will not pay and I have been unable to find anyone local to help. FRUSTRATED!!!!!!

Has anyone else seen eating ice as a compulsion? My 15 YO is eating ice again. He went through this about two years ago and we had his iron levels checked they were fine. (some people eat ice when iron levels are low) I can only contribute it to a compulsion. Of course when you ask him why he is eating so much ice he says because he likes it.

Yes it was caught on rapid. This surprised me because in the past he would sometimes be neg rapid and pos culture. I asked ped how my son could get strep while on abx he said Biaxin is not a great abx for strep. We are using biaixin to treat Myco. Although my son had 10 days of AugXR that he finished about two weeks ago. We were using that just to see if it would help with the tics more than the Biaxin was. Ds has not had strep that we know of in a couple of years and at last check in August titers were normal. We believe Myco has been more of the problem over the last year. He did a 5 day steriod burst with the Aug XR, could that have weakened his immunity? When he started complaining of sore throat we did not notice any increase in PANDAS symptoms other than snorting tic increased. I wonder if it was because he was already on abx. PANDAS is so temperamental I never know what to expect. One day you think you have it figured out and the next your child surprises you. Each exacerbation is a mystery.

Thanks for the responses. He does have strep. Pediatrician put him on Keflex and said to also continue with the Biaxin. Is the Keflex a good choice?

My 15 YO PANDAS son is on his second 30 day course of Biaxin with 10 days of Aug XR in between. So he has been on high dose ABX for about two months now. He began complaining of a sore throat two days ago and says it feels worse now. Should I be worried about strep? He has not had strep much since he had tonsils removed 7 years ago. Before ABX his strep titers were normal but Myco P was high. His PANDAS does not seem to be any worse the last few days. Can allergies cause a throat to very sore? He did start using Flonase a few days ago for what we think may be nasal allergies, could Flonase cause very sore throat? Thanks for advice Melissa

I am so sorry you are going through this. I know exactly how you feel. My PANDAS kids now 20 and 15 have a very similiar history to your kids. There were days when I did not like my kids (always loved them). I knew back in late 90's that is was strep related but no doctor believed me. They were always treated for Tourettes, OCD, ADD, ODD. etc. They were treated with prozac, zoloft, imiprimine, and many many more. My daughter got worse until about 12 and son started becoming easier around 9. My son now 15 still has some small issues (slight motor tic, frequent uriniation, food issues) but is a wonderful, sweet, easy teen. My 20 yo daughter has more issues but has just been diagnosed with Lyme. She is on her own, has a great job, goes to college and has good days and bad. She still has some motor tics that come and go. Has some OCD with clothes feeling right, hair isnt right, etc. Continue to fight for treatment for them. Things do get better. We have only recently gotten an official diagnosis and treatment.

My 20 year old daughter has PANDAS. Her Western blot just came back positive IgG bands 18 and 23. What does this mean? So far what I read on internet is that these bands mean definite Lyme. We have not talked to the doctor yet about the results. If she does have it what would be normal course of treatment be? Any advice would be appreciated. Thanks.

My 20 year old daughter has PANDAS. Her Western blot just came back positive IgG bands 18 and 23. What does this mean? So far what I read on internet is that these bands mean definite Lyme. We have not talked to the doctor yet about the results. If she does have it what would be normal course of treatment be? Any advice would be appreciated. Thanks.

My PANDAS kids are now almost 20 and 15. They are both doing so much better than when they were younger. When I tell them stories about how difficult things were they don't even remember. They don't remember how I reacted to them when I thought they were just being a pain in the A**. They just laugh now when I tell them how frustrated and angry I got with them. They used to tell my all the time "you dont understand, I just have too". I could see in their eyes the terror. Ten years ago I knew that they had PANDAS, but could not get any medical professionals to believe me. So we just treated them as difficult kids with OCD and tics. If I had only had the info i know now. My kids survived. My oldest daughter was the most difficult and now she is a sweet(most of the time) functioning adult. She loves her mommy even though i didn't always do a great job with her behaviors. All of the my bad times were balanced with good mommy time. No parent is perfect, we all make mistakes, kids learn that the world is not perfect and neither are people. As our kids get older the bad times begin to blur and good times shine. When my youngest was five I remember saying I absolutely do not want any more kids(because two of them were so difficult(PANDAS). Now ten years later I have a four and two year old. So yes I must have forgotten how hard times were. Somedays the little kids remind me how hard it can be. Hopefully one day I will forget again so that my grandkids can remind me and then I will send them home to their parents, so my kids will know how difficult parenting can be. It is a cycle and I pray the next generation will not have to deal with PANDAS. This site is a step into making sure this terrible disease is understood and taken care of early. Thanks to everyone for all they do. From Not Such a Bad Parent After All