Lori Ann

I am so sorry to hear about what you have gone through. We live in the Charlotte area and have had very little success here. I hope Dr. B can help you. We ended up seeing Dr. L in MD and received the help we needed. I do have a pediatrician here who is willing to work with Dr. L and prescribe antibiotics. I have heard that the doctors in Concord are familiar with PANDAS, but it is extremely difficult to get an appointment and the one doctor we saw in that office completely forgot to call us with his strep titer results! I found out from the psychiatrist (luckily she had access to his medical records because she was affiliated with the same hospital) about the possibility of PANDAS. When I called to ask them about the titer results they said that they were only slightly elevated and that if I wanted to we could start him on ten days of amox. We dismissed this doctor right away. Our son had a titer of 685 and he had not been sick in months! He had a cam kinase of 175 and Dr. L said he was borderline SC based on a physical examination. We also discovered that it is difficult to find a Lyme doctor in NC. There was a really good one a few years ago, but he got in trouble when he treated a patient with long term antibiotics. Doctors are afraid to touch Lyme in NC now. Our dog tested for Lyme a couple of years ago by our Vet here, so at least the animal doctors believe it is possible to contract it. Good luck to you.

By the way, I do not think there is any such thing as 100% recovery. We still see some residual behavioral things happening. I think that some behaviors become ingrained (ocd and defiance) and it is takes time to undo the damage that has been done. Vicki, I could not agree with you more. After surviving this nightmare, we will be extremely vigilent from now on and will always keep PANDAS on the top of the list of concerns. For all of you that are new to this disorder, I highly suggest making an appointment with a PANDAS doc instead of wasting time on a doc who is unfamiliar it. We traveled 8 hours to see Dr. L and it was worth it. Our darling son was lost for months and now he is back. I thank God and Dr. L everyday for his return.

I did not vote because our son fits into another category. We had success with steroids. He had been on seizure meds, mood meds, and antibiotics for months with no relief. Dr. L prescribed a 28 day predisone taper and we have seen great improvement. We finally have our son back. We are just waiting to hear about preventing relapses in the future. Good luck to you.

If you are experiencing recurring skin infections such as staph and impetigo, it is definately related to the eczema. Our son has eczema and suffered several staph infections and molluscum (a viral skin infection. I read in several journal articles that people with eczema are lacking two important skin proteins that protect against infections, making them more susceptible. At the same time, I happened upon an article about treating eczema with probiotics. The bacterium Lactobacillus rhamnosis (found in Stonyfield Farms yogurt) works with the immune system in the gut to suppress the autoimmune response to eczema, thus preventing the infections. I am trained in biochemistry, not immunology, so I am not exactly sure of how this works. When our son was at his worst with skin infections we began feeding him yokids yogurt once a day. He likes the taste and his skin infections cleared up within one or two weeks and he has not had a single one since. We use the yogurt now as our main probiotic since he is on Zith. I definately think there is a connection between eczema and PANDAS, but it is difficult to find researchers that know much about this. If there are proteins missing in the epithelial tissue on the inside of our body, they may also be missing in the inside of the body too, making it easier for strep to enter the body. We all have strep and staph lingering in our throats and skin, but some of us are more susceptable to these infections than others. good luck to you

Thank you so much Emerson, you just explained to me how my son feels. He can not express his feelings in words, but you can do so eloquently. You just made things a little bit better knowing that it is not so much me, but the PANDAS.

I know that I am not the only person going through this right now which is why I am on here typing this. How do we keep from going insane with the crazy things that are happening to our children and the lack of care from the medical community. I am sitting here in tears this morning because my ds 7 has just called me an idiot for the fifth time this morning and refuses to do anything I ask. He has just told me that I should be dead and I don't think I can do this anymore. He is the most important thing in my life and I will do anything for him, but right now, I can not stand to be around him. The doctors we have seen so far do not care that this is happening in our home and refuse to treat for PANDAS with anything other than antibiotics. Matter of fact, they do not seem to care about the behavior side of things at all, only the tics and other movements. They don't seem to care that he is scared to death of school and it is a struggle to get him to let go of me in the morning. They don't seem to care that I am bleeding right now because of the scratches on my arm (I asked him to turn off the video game he was playing). They don't seem to care that I am spending countless hours balled up on the floor crying, grieving terribly for the wonderful son that I lost in February. If my neurologist had this happen to his child, I bet he would not hesitate to do everything possible to treat them. Why does he make me feel like a horrible mother when I ask for something more than abx? He says that his case is not severe enough to put him through such invasive procedures such as PEX or IVIG. What does he expect me to do when the abx don't work (which they are not!). It would be one thing if I was a terrible mom and raised a terrible child. I would not be concerned about his future. But the truth is, I am not a bad mom. I have done a wonderful job raising my son. He was always friendly, smart, funny, and very helpful. He turned into something else over night and I do not think that I should accept this change. It is not right! Sorry for the rant, but I just had to vent to my cyber family. You can all understand the frustration and fear I am feeling right now.

Our son in on the mild side, mostly tics, separation anxiety, and mood. Doctor wanted to dismiss it as low iron, but Cam K came back a 175. Doctor stil won't treat with anything but abx, so we are going to see Dr. L next month.

Wow, this sounds like my ds who just turned 7! He used to be a happy, healthy little boy until this whole thing hit last fall. He is just one big ball of negativity. For a while, he was very impatient too. You are right about not being able to entertain him 24/7. I used to be able to get anything done. (Thank God, I finished my Masters thesis the month before he became sick!) Now, it feels as though I can't get anything accomplished because he is so demanding. This is behavior I would have never condoned before. It is hard to discipline him because he does not realize what he is doing and he does not respond to normal discipline anymore anyway. We are going to see Dr. L in October. I am hoping that steroids are the answer to our prayers too. He has been on Abx for a couple of months now with no real relief. Good luck to you. I am anxious to see what other parents say.

Sorry for what you are going through and praying for you!

Charlotte, is way too far from you. My best advice if you do not see a doctor on this forum is to call neurology or immunology centers in your area and ask if they are familiar with the disorder. Once you are pretty sure about the diagnosis, you might want to get in touch with one of the PANDAS doctors. We found that many of the local doctors did not really know enough about the disease to help us and we ended up making an appointment with Dr. L anyway. I wish you the best of luck!

Thanks for your input Emerson, for a teenager (I'm a high school teacher, I should know), you are very bright and articulate. I think you are right about the doctors and I think I have the right combo now. I am seeing Dr. L next month and already have the pediatrician on board to work with her here at home. Looking forward to moving in the right direction. You are doing a good job taking care of yourself! Remember, your gut feeling is almost always right.

I agree, I will ask for the full report tomorrow so that I can give it to dr. L. So glad I am going to see her next month!

Doc did not explain much, but thought that the behavior was tied to the seizure disorder. Started ds on depakote, but we have seen no changes at all on this med, which is another reason why I am going to another neurologist tomorrow.

After reading Emerson's post about her abnormal EEG, I had to ask the question. How many of you have had abnormal EEG results come back? We had an ambulatory EEG two months ago and when the results came back our doctor said that he has a seizure disorder and that he probably did not have PANDAS (titers were decreasing on antibiotics). He was very vague about the type of seizures and when they are happening. He was sure that the behavioral problems we have been experiencing (separation anxiety, defiance, rages) are due to seizure activity and low iron and that the PANDAS (if he had it at all) is so mild it is only responsible for the tics????? This does not make sense to me. Why does every other PANDAS child out there exhibit the SAME EXACT symptoms, but only our child's symptoms are not PANDAS related??? Oh yeah, did I mention that our child was perfectly happy and healthy before he caught swine flu and an URI last fall and he had a positive cam K test? There has never been any signs of low iron or seizure disorder before then. so, I have an appointment with a neurologist at the hospital where the EEG was performed to ask more questions about this diagnosis. I don't expect her to believe in PANDAS (have appointment with Dr. L next month), but maybe I can convince her that the seizures have an infectious etiology and maybe we can treat for that? I have read that steroids can be administered to treat seizure disorders that are caused by infection. Although we are on antibiotics, our doc has refused to do more because he believes this to be such a mild case of PANDAS. (If it were his son, maybe he would feel differently?) I believe that the low iron and the seizures are all part of the PANDAS and we should get rid of the inflammation in his brain first to see if we can solve the other two problems. Wish me luck tomorrow, I hope I actually get somewhere with this doc. Something positive has to happen sometime, doesn't it?

I am sorry you have to go through this. We are going through this with our own son as well. I am starting a new thread now to ask others about seizures and PANDAS.

Fantastic! You give hope to us that are still waiting to see the right doctors and get a treatment that works. Thank you and enjoy having your child back!

You are not alone. I am going through the exact same thing with my ds7. I feel the same way as you. I think it is very hard to have such a wonderful, healthy child disappear before our eyes. It is like we don't see our child anymore in the new person they have become and we are desparately trying to find them and bring them back. I don't know how else to describe it, but it is a grieving process we go through every day. I keep telling myself that my baby is in there and he wants to come back to me and this is what keeps me going every day. As loving parents we continue to fight no matter how frustrated or tired we become because we will do anything to save our children and their future. My husband has been working away from home for the last several months, making this whole experience that much more difficult. I just pray that one day we can celebrate the return of the child we once knew and can start living once again.

Where do you live in NC? I am in the Charlotte area and may be able to tell you what I have experienced with the doctors here so far.

I knew crotch grabbing was a tic! My son did it all the time until we upped his lamictal! My dad has Parkinson's and his sister had MS. My PANDAS son has eczema which is also assumed to be autoimmune. I do believe there is a BIG connection between Parkinson's and PANDAS.

I am right with you! My husband is working in Florida right now and our ds and I are missing him terribly. I too am waiting for the zith to really work, but after three weeks we saw a decline in violent rages and major meltdowns. He mostly just gets frustrated and says awful things, then apologizes shortly after. I am hoping this is just the start of the path to recovery. Sorry I could not offer more than a sympathetic ear.

How long does it last and how do you help her get over it?

Thank you! calling pharmacy now to check for interactions with the other meds he is on!

Just got Cam K number back today. 175! I think I am relieved? At least now we have some real answers and my intuition is right on. I guess I feel as if I am truly part of this family now. I do have a question for all of you veterans. My ds was doing well at school these last two weeks (only had to beg and bribe to get him to go), however, his tics started again two days ago and were full blast yesterday. We have been keeping them under control with lamictal. I thought that it might be some stressor at school, but I am noticing that I have a sore throat and headache developing. Could this recent exacerbation be the result of my illness? Could he be a "canary in the coal mine"? He is on zithromax (500mg) right now and it seems strange that he could get strep from me, but what if it is viral? Could this cause an increase in symptoms? Going to see Dr. L in October. Excited to get some real help and answers.

Where are you in NC? I am near Charlotte and have found both a pediatrician and a neuropyschiatrist who help me with abx prescriptions. I have an appt. with Dr. L in October. My DS 7 is on 500mg/day and we have only seen mild changes since he has been on it (two weeks) His neuro thinks he will be on it for a very long time should his CamKin II come back positive (any day now).

Thanks! We will keep holding our breath and hope that things get better this week! Neuro is back from vacation and dad took time from work to help as I get ready to go back to work (teaching teenagers, no less!) My gut feeling is that he is a carrier and we are dealing with a resistant strain.