Lori Ann

I notice that many of you see that your children get better on their own after several weeks. Is this the norm? Also, many have also said that their children get better after a few days to a week on abx. We are waiting for CamK test results, but I am afraid that they will come back negative and we are back to square one with a diagnosis! DS has been raging for a couple of weeks now (took him off azith in July) He is back on 500mg of zith, but no improvement in four days. Am I expecting too much? We have had no relief in months! Does this mean that he does not have PANDAS? It is the ONLY diagnosis that makes total sense, no other disorder fits all his symptoms so well.

I see you are from Atlanta? I can give you the name of our neurologist near Charlotte. I know it is a bit of a drive (and he is a little slow to diagnose, but does believe). When are you going to Dr. L? We have an appt. in October too.

Thank you, thank you, thank you! You just helped me solve one more problem!

Quit the gym in April, can't even take the dog for a walk when DH is away on business. That cold glass of chardonnay after ds goes to bed helps reset my brain so I can do it all over again the next day!

I would ask the pharmacist if there should be any interactions to worry about. If not, I would think that between the doctor and pharmacist, the rx should be safe.

Not getting anywhere with current neurologist lately. I have an appointment with Dr. L in October and ped gave us a three month rx for zith this week. DS has been raging lately, which I think is due to stopping abx a couple of weeks ago. He will become very defiant and violent, then turn around and hug me two seconds later, telling me that he loves me and asking if I know that he loves me. It is very strange. Here are my questions: I can have a phone consult with doctor K in Sept, which will be costly and not covered by insurance or should I wait for doctor L who will be covered by my insurance and is a little closer to home? Another question, how long does it take to come back from an exacerbation after the infection flares up? We have been on abx for three days now and I have not seen any changes. Things were tolerable over the summer while he was on abx, but school is supposed to start next week and I do not think it is going to happen. Any advice is greatly appreciated.

I am fairly new to all this. Tics started in November (all the other symptoms started coming on after that) and we are still waiting official diagnosis, although PANDAS is most likely the culprit. (Cam-Kinase test results in two weeks!) I am calling the doctor every week to let him know that nothing is working and things are getting worse. We just got word that he is having seizure activity (EEG) and was started on depakote. Since we discontinued abx three weeks ago, things have gone from bad to worse, ds rages have become violent and he is now cursing which is new. In addition, he is hurting the poor dog. I am crying more often than not and e-mailed boss today about taking a leave of absence from work (really don't want to do that), but I am afraid he will not be able to go back to school in two weeks. I just called again today to let doctor know that rages are getting worse and depakote is producing more night time seizure activity, not less. We have an appt. in two weeks, am I overreacting or should I be calling so much? The doctor so far has been nice, but I am afraid he will ignore me if I keep bugging him. Please chime in- should I just wait until our next appt. or am I justified in demanding help right now? Also, how do you cope with this? I feel as if I am grieving the loss of my sweet, smart little boy while trying to care for the monster living in my house. How horrible does that sound?

Found out something interesting today about iron. Strep bacteria actually sequester iron from the host in order to reproduce. " Group A Strep produces extracellular protease that releases iron from ferritin". (Journal of infection and immunity) My son never had iron problems (or even any symptoms of iron deficiency) before this. I am wondering if his low iron levels are due to the infection instead of the other way around which is what I originally thought. I also wonder if I am doing more harm than good by supplementing his iron intake. Some studies show that increasing iron availability to the strep will allow it to thrive. Since we increased his iron and stopped abx, I have seen an increase in rages and negative behavior. I know we need to get his iron levels up, but I wonder if they would not increase on their own if we completely eliminate the strep?

My son's ferritin is low too. It was 11 and now after three months of supplementation, it is at 36. Our doctor says that it should be above 100. Below 50, neurological problems can occur such as restless leg syndrome, mood changes (as iron is important to the production and function of certain neurotransmitters) and sleep problems. Our doctor still thinks that low iron is the root of all our problems, but I disagree. I think that PANDAS might be linked to his low iron. If he had low iron before the PANDAS, why did we not see any of the signs? He slept well, did very well in school and had no mood problems before his bout with strep late last fall. He was recently diagnosed with seizure disorder too after an ambulatory EEG. I am convinced that the infection is the cause of the seizures as well. I am looking into the relationships, but there is very little information out there. Make sure that if you are supplementing that your child gets plenty of vitamin C, this helps the body absorb the iron more efficiently (keeps the iron from oxidizing too quickly). Also, supplement throughout the day, as the body can only absorb so much at a time.

Just started some advil this morning to see if there is any difference. Will ask doc for steroid course to see if inflammation is the problem. Thanks for your help! You are all wonderful support!

My "mommy gut" has always been right in the past and it is now telling me that this is not Tourette's or OCD or any other mood disorder. I think I will be more vocal with the doc and express my concerns more clearly.

Thanks for the help. We are taking the iron seriously and he is on iron supplements right now. Thanks for the information on Dr. C's lab. I did e-mail Kathy, but I have not heard from her yet. I am considering seeing Dr. Latimer if we don't get moving on this soon. I will talk to my doctor on Monday to change CJ's meds for the 5th time. I might ask him to try a short course of steroids to see if this helps at all and to determine if it is PANDAS? We have tried antibiotics. They helped bring down the titers a bit, but did not help his symptoms. A couple of years ago we noticed behavior problems and a few transient tics. After having his tonsils and adenoids removed, he improved tremendously, I don't know if this qualifies as an earlier episode or not. I am sorry that you are going through this. I am hoping that the PM from Suzan can be of help to you. You mentioned that your son has elevated strep titers - is he being treated for that with antibiotics? Low iron, of course, is not to be ignored, and it sounds like your doctor may be trying to treat the low iron while pursuing PANDAS diangosis using the cunninham test. When you say you cannot get in touch with Dr. Cunningham - have you emailed her lab? (info at http://www.pandasresourcenetwork.com/research-programs.html). I am surprised that Dr. K said to find someone in your area... that is making me wonder if he is also thinking this is not PANDAS for some reason. How long do you think your son has had PANDAS symptoms? Has your son had antibiotics in the past (for any illness), and has he gotten relief of his neuropsychiatric symptoms from them? Best wishes to you as you navigate to finding help for your son.

Hi everyone, I am new to posting on this forum, but have been reading it a lot lately for help. I suspect my seven year old has PANDAS, but I am having trouble getting the diagnosis and treatment he needs. I even picked a doctor that was recommended by other parents on this forum. My son fits the profile for PANDAS and even has elevated strep titers! Our doctor however, thinks that low iron and sleep problems are of more concern than PANDAS and is dragging his feet with a diagnosis. He did give us the collection tubes and paperwork for the cam kinase II test, but the paperwork looks dated and I can not get in touch with Dr. Cunningham's lab. I e-mailed Dr. K, but he told me to find a doc in my area (Charlotte, NC), as it would be an unneccessary expense to come and see him. Here are my questions: How do I get my doctor to diagnose PANDAS? How do I get him to treat for PANDAS? How do I get the doctor to understand the the absolute ###### that we are living in? (sorry for the lack of better terms) The longer we drag our feet, the more worried I become. Every day is a struggle. I am usually reduced to tears before lunch and I am dreading the start of school, which happens to be when I have to return to work too. We have tried four different anti-pyschotics and nothing touches his anxiety, OCD, hyperactivity, defience, or depression. It has been such a help listening to your stories and knowing that I am not alone, although it feels that way here in the real world.

You are not alone. I keep saying the same thing, "tomorrow, I will do better". My sweet, smart, little six-year old boy has become someone else. I know this is not comparable to physically losing a child, but I feel grief as if I have lost my son. We are still waiting for an official diagnosis, but after reading about PANDAS, I know this is it. He is responding to amoxicillin and our Ped has been supportive and has extended his prescription, but somehow I do not think this will be enough. He has manifested symptoms (facial and vocal tics, hyperactivity, defiant behavior, etc...) for several months now. I miss my baby and want him back. I am feeling the same way... So so much to learn.. and while reading here alot of stuff I have always just dealt with with my DD who is 8 (and who 3 weeks ago was told she has PANDAS) I'm learning are more then likely the PANDAS.. and now I'm feeling guilty for how I have acted when she was doing alot of this stuff.... I am right there with you and ds will be 8 in less than 2 weeks so I can imagine your life up until now.....- we are about 6 weeks into this and the night wakings, behavior, enuresis, need to have the night light on, his repetitive statements when exacerbated I thought was just being defiant, his reverting to talk like a baby from time to time, his inability to sit still sometimes but perfectly others his real truth that he could not control himself and how I always thought he could...now don't get me wrong my son is still willful when he is not exacerbated and will try and manipulate everyone but you can reason with him- when exacerbated- not a chance......I know that now and I still could not help getting really mad at him today- tomorrow I will do better.