Wickedmaineah

Doctor put our daughter on Ceftin while we wait the results of her Lyme test. We are allergic to the penicillins so options are limited. She can not handle it at all. She has diarrhea running right out of her. Just like water. Covers her bottom and legs, and thats with a diaper. We have been feeding her yogurt, but she hasnt been hungry for much else. Thinking I will be calling the doctor today. Are there other options out there for treating lyme?

Well after about a dozen phone calls, one extremely nasty one directed at the lack of effectiveness of the doctor, two calls to the Maine CDC, and another doctor's visit our DD is now on 2 weeks worth of Ceftin. The doctor stated that the bullseye could be from hives. WTH......am I just a stupid neurotic parent. My children have had hives frequently...from soaps, medicines, grass. I know what hives look like. I did ask for referrals for both children to a lyme specialist. She said she is convinced DS does not have it and that there was no specialist around. I do know that our local hospital has an infectious disease office that treats lyme. I will be pursuing more testing in some sort of way. The doctor did say she expects DD's first round of testing to be negative and then we will know with the follow up test in 2 weeks. I wish I could find another pediatrician who is willing to work with me, not against me. But sadly, there is not much else in the area.

Thanks for so many replies. I must have not made it clear, the rash started before the antibiotics. As a family that is allergic to penicillin, I always watch for anything associated when someone is placed on an antibiotic. Last Sunday she had the pneumonia and rash. The one on her face turned to a bullseye this week, though it was there before just solid. I am calling her pediatrician this morning. Our baby is only 2, I hate to put her through any pain, but we need a blood test to rule out Lyme. DS had the western blot lyme test and showed negative. Though he has had classic symptoms since 2007.

It was at the doctor's office that the PA stated it looked like a tick bite and then there was no follow up, just keep an eye on it. She was diagnosed last Sunday with pneumonia and treated with 5 days of antibiotics. At the same doctor's appt I pointed out that she had red bump, rash all over her. They asked about bug bites, but she had been inside due to being ill so I doubted regular bug bites. We dont have that many bugs in our house. Now they are guessing swimmer's itch. Today there is one on her face is a bullseye. Could the pneumonia be a sign of lyme disease? I need to get someone moving on it, but I really feel like they just dismissed me. Would lyme disease already show up on a blood test or does it take time? Any help is appreciated as I am still learning about PANDAS for my DS, I never expected this with my DD.

DD, 2, has a bite mark on her cheek with a round circle around it. She is just getting over pneumonia and ended her treatement today. Doctor stated on her check up that she believed the bite on her cheek was from a deer tick and to watch it. I would insert the picture I took if I know how to insert a photo. Wondering if anyone could described their tick bite looked like if they knew and what we should be looking for. Concerned because we are already dealing with a recent PANDAS diagnosis for our son. Can't seem to get a break from stuff lately. Thanks.

Bumping this up to see if anyone has had a child with mycoplasma pneumonia. Did your child have skins lesions/bumps on them in random spots. DD has them, and when they go down it almost looks like a faint bruise. DS, with PANDAS, has developed the same lesions. He has no symptoms except for a dry cough he has had for quite awhile. Could this be mycoplasma pneumonia? DD was diganosed yesterday with pneumonia and placed on antibiotics. DS is not on anything at this time.

Our son has PANDAS/PITAND. At this time his symptoms decreased greatly and he finished his second dose of antibiotics a short time ago. He is not on any antibiotics at this time until his next blood draws. The issue is our 2 year old today was diagnosed with pneumonia and placed on antibiotics and steriods. She is really having a difficult time. She has also has bumps on her that pop out randomly. The nurse practioner she saw thought that the rash was something seperate from the pneumonia and wasnt as concerned about it. After reserarching on the internet I found that mycoplasma pneumonia can have a ras associated with it. Does anyone have experience with the symptoms of mycoplasma pneumonia? Has anyone had a sibling infected in the same household with a PANDAS child? Besides standard precautions, not sure if there is something else I can be doing or looking for.

Math class was the most difficult for our son once the PANDAS symptoms started. We even pulled him out of Math class at one point because the teacher was so concerned he was going to break his neck he was ticcing so bad and struggling so bad in the class. After the first round of antibiotics we were able to move him back into the math class with less struggles. Not sure about how much a tutor would help because when we pulled him out he got one on one help with the math and still struggled and had to go backwards to almost regain skills. I know this is probably not helpful, just our experience.

As far as the DSM (Diagnostic Manual) PANDAS is NOT on the Autism spectrum. They are two different disorders. For one, Autism is a mental health diagnosis, found in the DMS. PANDAS is a medical diagnosis, found in the ICD 9, which cause mental health issues. For our own son who was diagnosed at 5 years old with Autism, I now believe there is a chance he was misdiagnosed and it may have been an autoimmune issue the whole time. Our son is considered high functioning and many would say just meeting him that they had no idea he is even on the spectrum. They don't see the daily OCD things, the anxieties, etc. Only time will tell for us which it may be, but either way they both need treatment, love and support.

Next time I am definately asking for something else. Our options might be limited due to his allergy, but the stress he goes through while on Zith is absolutely ridiculous!

Our son also has an Autism diagnosis since the age of 5. He loves repitive stuff. His separation anxiety is bad too. He was supposed to start a tech camp yesterday, he was very ill first thing in the morning. Stomach aches, lots of trips to the bathroom, and then said he couldnt go. Later on he was asking to go outside to play. Yep, that was clearly anxiety! I am also wondering about rheumatic fever in 2007. It was not diagnosed but had all the signs, could that be related? Hoping there will be a better time, but right now it's minute by minute.

I now cant leave him alone in the room with his 2 year old sister. He is being completely mean and unsafe with her. The vocalizations have increased greatly this morning. Wondering if it is the antibiotic, but why this time when it worked last time? This day seems to get longer and longer with every passing minute.

He is on azith, but that is also the medication that helped the first time. It completed stopped the tics which were extreme and cauing problems in his daily life. He has been tested for lyme and that was negative. Only the 41kDa band. I pulled his old records, this all began to get extreme in 2007. Back then it was joint pain, severe aches, headaches. He went through many scans looking for juvenile rheumatoid arthritis, which they did not find. He did have high WBC, high C reactive, and high ESR, but no one could figure it out and no one did a strep test at that point. He was completely miserable, screaming, in pain, constants ER visits. I am now thinking this is all related, though I know I could be wrong. The behavior right now is frustrating as it seems that he is only happy for about 1/2 an hour a day. Otherwise he cries, has great anxiety that no one want to play with him, and no suggestions offer him any relief. Two more days of the azith and then we will see what happens to the behaviors. He is allergic to penicillin and augmentin so those are not a possibility. He sees Dr. Price on the 11th, so hoping we can make it until then.

Our son was only recently diagnosed and is on his second dose of antibiotics. He has been whining, crying over everything, and hateful. He will tell us and his younger sister that he hates us, we are awful, etc. It just comes out for no reason. Is this a normal behavior? I try to not get frustrated because I know it may not be in his control, but he has already done these behaviors multiple times this morning and he has only been up for an hour. Any insight would be helpful as this is not our little boy. Christina

Sorry, I dont have any advice to share as we are waiting on our first appt after our son's diagnosis. What I have decided to do though is go well prepared. I had put into a binder every record I have on him, medical, school, etc. And I have complied a timeline with behaviors noted since there began to be issues 5 years ago. This is a quicky summary for the doctor to review, with supporting documentation in the binder. We are going well prepared with the numbing cream as I expect there will be blood draws. Make sure you sign releases right there to get a copy of the records for yourself. I have found that it is very helpful to keep your own records. Also make sure you go with any questions that you have, most important first. Take notes, becuase there is no way to remember everything that is said and you will want to refer back to it and share it with your regular doc. I hope someone who has already gone through the first appt will give you more information. Christina

We honestly aren't struggling with the Autism aspect. I am proud of my son's Autism as it has given him some incredible abilities. Not that I want him to have it, but we accepted that diagnosis years ago and have worked with him to only give him the best. What I struggle with is figuring out what behavior goes to what. When doctor's ask about symptoms, I am not sure I am giving them his PANDAS symptoms or his Autism symptoms because they seem to run together. I was looking for more clarification on his numbers, which Nancy was able to give me. Thank you.

Wish I could say which test, but I do not know. Report says Lyme ABS WB. Only one band was positive and that was 41 kDa, which I have been told is very common.

Our son was only recently diagnosed with PANDAS after an extreme period of sudden severe tics. Appt with the specialist is on July 11th. His regular doctor agreed to run blood work prior to the specialist appointment. I have gotten the numbers back, but they are so confusing. Lyme was negative. ASO was 389 with normal range from 0-240 DNAse B Antibody was 213 with normal range from 0-170 Strep Group A Antibody was 1:100 units with normal being none. The doctor prescribed another 5 days of antibiotics. Our son is still struggling with OCD, nightmares, clearing his throat, moodiness, irritability, and still can't draw. He has a previous diagnosis (at the age of 5) of Autism. Now I can't tell which symptoms are which. After his last dose of antibiotics in the end of May he was a totally different child. Took him back 3 weeks later to say the symptoms had returned. They did not treat because the rapid strep was negative. I wish someone would just say.....yes, he has PANDAS and this is what we can do. Or if he doesn't, please explain to me why he is the way he is right now. Thanks for letting me vent, because tonight I want to pull my hair out trying to understand what these numbers all mean! Christina

So I am sitting here today with complete anxiety. My son was recently found to have PANDAS. He had strep for about 6 months before we found it. During that time he developed a horrible tic disorder that escalated to about 100 every hour. His teachers were terrified he was going to hurt himself. We ran some normal ones in relation to strep, pneumonia, but the one I am most anxious about is lyme. I just want it to come back negative so I can put that question to rest. I called the hosptial today and they were mailing out the tests that were completed. Most likely they will be in Friday's mail, but I will be stalking the mailman tomorrow just in case! As a parent, I need answers!

Can you explain the issue with your child's hands and not being able to draw? My son draws incredibly, but recently he has not been able to. Took the doctor 3 recent pictures he drew in the last couple of weeks. Two were incredible, detailed, and very professional looking and the third one looked like a 2 year scribbled it (he is 10). Doctor was amazed, but couldn't explain it. Thanks.

We have our first appointment with the PANDAS doctor on July 11th. I will spend the time before then gathering all of his old records and creating a timeline of his symptoms for her. I will also spend time learning through all of you and complying a list of tests, questions, and information to make this a very productive appointment. I also bought the book "Saving Sammy" today. I can't wait to start it! Christina

I am calling the doctor today and demanding an order for tests. If they refuse, I will also be calling the PANDAS doctor. I agree a list of helpful tests would be good for us newbie's to have as this all untraveled roads for us. Someone mentioned joint pain as a symptom. My son has had issues with joint pain for 5 years. They put him through every sort of scan and test thinking JRI, but no definate diagnosis. I was shocked to see that it could be a symptom of PANDAS. Our youngest daughter is very sick with a cold, cough, congestion. Could PANDAS react to another virus? I am mostly seeing strep virus. Thanks, Christina

We had to take our son back into the doctor this afternoon due to the sudden increase in symptoms. The obsessions, fears, etc are frustrating but the most frustrating is seeing the dramatic decrease in his ability to draw. He drew beautiful pictures just a week ago, very dramatic real life drawings. Now he is drawing like a 2 year old. (he is 10). Should the doctor 3 different drawings so that they could see the difference. They were also amazed at how bad the most recent one was. Also his joy and strong desire to draw is gone. Doctor did a rapid strep, came back negative and said there is nothing else they can do. I asked for titers to be done but they said they were not needed because he didnt have strep. Has anyone else had issues with the doctor's like this? I dont know how to get them to look at the numbers.

We are newly diagnosed and I am finding the topics on here so helpful. One issue I didnt mention previously is that my son is allergic to all pencillins and augmentins. I also have fears of using other antibiotics because I was also allergic to the 'cillins and then in 2009 almost died for an unrelated antibiotic. Now my doctor has me on strict orders no antibiotics. What do children with PANDAS do when allergic to penicillin? We just treated him with zithromax, but I fear if he continues taking it he may get really sick like I did. Thanks.

We are also in Central Maine. I have really felt like we were the only one in the area that has ever dealt with this! It's nice to know my son is not the only one in the Bangor area. If I knew how to private message on this forum I would send you a message. LOL Thanks for all the helpful advice everyone. I started journaling my son's history and realized there is a good chance that he has had this for over a year as he was showing the same signs last year except for the severe head tic. We lasted a couple of weeks without any symptoms and this past Friday he has started a facial tic, throat clearing, and oh my extremely moody/obsessive and pacing. Looks like we might have to head back to the doctor on Monday. I have started making calls to find a doctor for him for the PANDAS. I realize that this is going to be a long process, but I would like to get it atleast moving now. Has anyone read the "Saving Sammy" book?