Wickedmaineah

Does anyone know of an ENT in Maine, willing to work with PANDAS and do a T&A? Pediatrician said she isnt having much luck. Doctors in Bangor said to take him to Mass. Local would be better for our son as he has Autism too and to be away from everything he knows for such a big thing could set him back worse than ever. Thanks

First of all, please do not bite my head off and tell me what a horrible parent I am. Each of our children are different, each respond differently, and each road we go down is completely different. My son was first diagnosed last May when his first round of a azith after a positive throat culture stopped his tics completely. Since then we have tried numerous numerous medications. Some have benefits and some have done nothing, but everyone of them has caused my son more grief. Some have given him severe diarrhea, some of given him severe bone pains, and now most recently after taking azith at night he spends 2 or so hours pacing, mumbling, pulling his hair and eye lashes, and just miserable. This has happened the last two nights since he began the azith again. It occurs about an hour after taking the dose. I was able to get a little video of it and will be sending it to Dr. T and the pediatrician. My husband and I have gotten to the point where we cant continue to watch him suffer from what is supposed to make him better. Has anyone experienced or heard, what happens if you dont treat the PANDAS? Prognosis? Complications? I have researched, but am not coming up with anything at this point. Thank you for taking the time to read this and not judge.

In desperation I contacted Dr. Trifiletti in New Jersey the evening of Thanksgiving, by email because we were desperate for our son who has been diagnosed with PANDAS for about a year. He has been responsive, sympathetic, caring, and is the first doctor I have dealt who actually seems to care what our children are going through. I highly recommend if anyone can get to Dr. T in New Jersey it will not be a wasted visit. Just wanted to share my experience to hopefully help another parent out. This is a long difficult and painful road we are all on. Thanks for taking the time to read this.

Thanks, I have tried to access that list quite a few times but for some reason it will not load on my computer. I tried on my phone, but it comes in all blurry.

Bumping this up because I would be interested to know too. Dr. T. just came on board to consult with my DS pediatrician on how to treat the PANDAS. She thinks IVIG is the next way to go. We are looking for anything that might help, but havent made our minds up on anything yet.

So in the midst of everything that is going on with our DS right now, hubby's company is talking about transferring him back to South Carolina. Looks like down near the Charleston area again. Does anyone know of any doctor's in SC that treat PANDAS?

Thank you I have pulled up Dr. T's information. I am even going to email him myself as it says you can on his website. I will attach the documentation I have complied into a table so he can see what has exactly occurred.

We had an appointment scheduled with Dr. Price in Saco Maine tomorrow. We called this morning as we are expecting a foot of snow tomorrow and its a two and a half hour drive right through the storm. I recieved a call back this afternoon that Dr. Price is no longer going to see new PANDAS patients and she decided that yesterday. I am going through a range of emotions right now from anger, to defeated, to tears. Our pediatrician is trying to learn all she can about PANDAS as my son is her first PANDAS patient. She is very open to any treatment suggested. Does anyone know of any PANDAS doctor that would be willing to talk with another doctor via the telephone about PANDAS, treatments, outcomes, etc? Please dont just say go out of state because it is not an option. Please do not criticize for not being able to either as I just can't handle that right now. Looking for possible solutions as I wait for our pediatrician to call back.

My PANDAs son began a constant cough that was associated with eating (as soon as he walked toward the table it would start, and continue through the meal, hundreds of times. Only around eating. We put him on 14 days of Amoxyl (assumed that he may have gotten strep again) and it disappeared. He then began a blinking tic, which has also since disappeared. I believe it can be a tic. I am curious if your son is on prophylactic antibiotics or not. He was taking antibiotics twice a week until about 2 weeks ago. We stopped them because he had severe diarrhea that we couldn't stop. It was causing him great pain in his stomach and just miserable. We tried everything, but he had no quality of life as miserable as he was. He still had the cough through the antibiotics but definately not as much as now. Teachers said it was just in math class before, now it goes throughout the day.

I searched through and couldnt find any directly related posts. Does anyone's child have now or had in the past, a constant non stop cough? DS's cough goes all day every day. He has been tested for mycoplasma and that was negative. It started in September, but is now much more frequent and reptitive. Could it be a tic?

We have finally been able to afford to take our son to Dr. Price in Saco, Maine. We felt this is a last ditch last resort as he has tried antibiotics, steriods, and ibruprohen. Sadly with the antibiotic he showed some improvement, with the steriod he showed drastic improvement, but both caused extreme side effects. Can anyone tell me if they have seen Dr. Price? Did they find her helpful? What information can I provide to her to make best time of our appointment? We are driving almost 3 hours, but only have an hour with her and I want to make sure it is successful! Thanks so much for any information.

Just not sleeping was not the issue. He couldn't sleep because of the severe bone and joint pain that came. It is a possible severe side effect of the steriod. I can't stick it out watching him scream in pain until his night time medications knock him out. It was horrible to watch.

We have tried the Motrin, but not much affect. May be worth a second try since we are not having luck elsewhere. Thanks for the idea. We live in Maine.

Our son has had PANDAS since last winter. He was an extreme case that convinced the neurologist. Our pediatrician is still in the mind set of she is not sure it exists, but believes he has had shown the symptoms. He shows anxiety, obsessions, emotional liability, tics, problems in math, and some extreme tantrums. We have have tried various testings, antibiotics, and steriod bursts. He is allergic to penicillins. Azithoromycin causes him extreme pain from the stomach issues. We tried probiotics, yougurt, nothing helped. The last day he took one he was in the bathroom all night long with diarrhea. He was screaming because his bottom hurt so bad. Next we tried the steriod burst. He took 40 mg yesterday morning and for the first time in weeks, actually went outside after school and played with the neighborhood kids. This was a huge sign because he has always been an outdoors kid, active, and that had stopped suddenly. Last night we were up all night. The bone and joint pain from the prednisone was severe. We tried heat, cold, rubbing them, ibruphroen, and nothing settled the pain. He cried and cried. I am so tired of watching my child in pain from the medications. I am so tired of watching him suffer from PANDAS. I feel we are at the end and he will have to live with the PANDAS active, but how? He doesn't enjoy himself, he doesn't play, is completely anxious all the time, and obsesses over everything. Does anyone have any other ideas of possible treatments? My doctor is consulting with a specialist in Southern Maine, but I can't just sit back and wait for them to come up with ideas.

Here's one: http://www.urmc.rochester.edu/news/story/index.cfm?id=981 Another popular antibiotic for PANDAS kids is Azithromycin. Although some docs in the East Coast are reluctant to rx due to strains of resistant strep (in the East Coast), some parents find this drug works very well for them. Unlike Amoxicillin, Pen, and Cephalexin, Azith. is effective against Mycoplasma (another PANS trigger) and is immune modulating and anti-inflammatory. Also, Azithromycin (and to a lesser extent Cephalexin) are better at killing intracelllular strep than Pen. Here's the article: http://cid.oxfordjournals.org/content/43/11/1398.full Sometimes it is a matter of trial and error to see what antibiotic works best in an individual child, but Azith., Augmentin, and cephalosporins (like Cephalexin) are all reasonable choices for a PANDAS child when Amoxcillin or Pen doesn't seem to be working. Guess we are one of the lucky ones. We are located as far East as you can go in the US (Maine) and our son is on 6 months of Zith as a preventitive. Started it the first week of school and thank goodness because by the second week of school strep was already running through. He had someone in his classroom, sitting at the same table, with strep and he is still strep free!

I asked because you said symptoms developed after a fever. Did he at the same time have any joint/bone pain? Our son has had a similar pattern, been diagnosed with PANDAS, but the possibilty of rheumatic fever has been mentioned and he is going to see a cardiologist just to check out his heart. Did a doctor rule out rheumatic fever?

Did a doctor rule out rheumatic fever?

Our son had a 48 hour in home video monitoring EEG so sorry cant help with the keeping awake part. We felt like we were on a reality tv show for those entire two days. The EEG showed nothing, but I am glad it was done to rule out seizures. Good luck.

The antibiotic just bothers his stomach. We are allergic to many antibiotics and have difficulty with all the others. He usually spends a great deal of the next day in the bathroom. We are seeing his doctor tomorrow and I will ask about the immune panel.Thanks for the suggestion.

I haven't posted here in awhile. All my waking hours seem to go to caring for and contacting the right people for our son. He has seen a neurologist, infectious disease and 2 pediatricians. We are now working with a wonderful pediatrician who says she has never had a PANDAS child so she does not know if it exists or not (said after the infectious disease doctor spent 45 minutes telling me how PANDAS does not exist.) The pediatrician said it could not hurt to treat for it and see if he benefits so we are on a 6 month dose of antibiotic weekly. Its a strong dose and he is usually sick the day after no matter what I give him with it. The issue now is there is strep in his school (school nurse was dilligent about calling me as soon as the first case was suspected and then again when it was confirmed.) Behavior changes were noted in my son and a repetitive cough (more than normal, tic in nature). Now he is home with a fever, body aches, and sore throat. Calling the pediatrician again, but really starting to worry whether he will be able to attend school or not this year. I am starting to wonder if he has any immune system at all......anyone else's child get sick constantly and not just from strep?

Thanks for everyone's information and experiences. I will call the Infectious Disease doctors today and speak with them to get what their knowledge of PANDAS is before wasting our time and theirs. We can not switch to another antbiotic and at this time DS can not take anymore antibiotics at all. We are highly allergic and if we find one we can take it is usually short lived. For instance in 2009 I was placed in intensive care due to an antibiotic for a tooth infection. This medicine I previously could take. My DS has done 3 doses of Zith and now can't take anymore because he began to have an allergic reaction when he did 10 days in a row. Antibiotics are life threatening for myself and my kids. The thing that is supposed to help the most can actually kill us. I don't want a doctor that will continually just prescribe antibiotics. We have to look at other methods of treatment, including natural and holistic due to our allergies. I understand many people travel a long distance for treatment. I don't feel the need to do that at this time. My DS doctor is willing to do IVIG right here at our local hospital. The hospital has a wonderful pediatric floor. We are not convinced this needs to be his next step yet and are willing to bring on more team members (infectious disease) if they can be supportive. I am a huge believer in wrapping the child with a supportive team. Every new person brings a new idea, new perspective, and new eyes to the issues DS is dealing with. It's called the Wraparound approach which is huge here in Maine. As a social worker myself, I have gone through extensive training in this area and find it highly supportive in assisting my son. Everyone has their own team for their child, just look around at all the people you see. An important thing to remember, just becuase your team works for you it may not work for someone else. I am glad to get people's perspectives in regards to Infectious Disease. Now I can formulate the best questions to ask to see if they should be part of the team or whether they will be just a nuisance.

Has anyone been referred to or been seen by an Infectious Disease Doctor for the treatment of PANDAS? My son's team has decided that they need to get Infectious Disease on board because after multiple rounds of antibiotics they can still not get my son's strep titers to go down. Thanks, Christina

Our DS's doctor would like us to consider IVIG. Read on it, listened to the doctor, but would like real life experiences from parents. Our son is mostly dealing with the anxiety and OCD at this point. His tics stopped after the first round of antibiotics, though he does have this constant dry cough that I am now thinking is a tic. He is has secluded himself mostly inside the house this summer, lots of emotional lability and just completely stressed all the time. So if you can tell me your experiences with IVIG. The good and the bad. The outcome. And what helped the preparation for the treatment it would be helpful. He is starting another round of antibiotics while the doctor gets in touch with the local hospital to look at their setup for the treatment. We have a month before school and I feel like we are on a race. If school started tomorrow he would not be able to go, huge separation anxiety. Thanks, Christina

Our son has gone through 2 rounds of antibiotics. He finished the last antibiotics on June 21st. He had blood drawn on June 16th and July 14th. His numbers in June were ASO 389 and DNASE B 213. His numbers in July were ASO 375 and DNASE B 224. Anyone have any ideas why they are still so high and especially why the second one increased rather than decreasing?