reactive

Oh WOW. I had no idea you have a son also...I am so sorry to hear about all his troubles. If you could just get him to realize what could be wrong...and have the testing done...I will be thinking of your family. Good luck.

Faith...if you see this...I get the same doubts you do. My ds9 has had symptoms since age 3 or 4. The symptoms were so dramatic and severe then, and of course also had the weird joint pain thing where he could not walk at the time. Our neurologist at the time said it was not PANDAS due to a normal ASO titer. It was the ONLY lab that was checked. So we went about our lives and dealt with it. Or should I say have been dealing with it. It only occurred to me recently what I deal with all the time with my so called currently mild symptom son may not be that mild at all. Yes, he does really well. But if I am really honest, life for our family is HARD. You get used to a lot-especially with the OCD stuff. In addition, at least in our case, I have realized that no, this is probably NOT just OCD/TS for us because I keep going back to the joint pain thing and the staring episodes where he appeared "gone". I just don't that that could be regular OCD/TS. I do not know your history. But currently, our son sounds a lot like yours, like he could be just OCD/TS. But I don't think he is. And your son could be PANDAS as well. Lastly, I most recently have made the parallel with my son and my reactive arthritis. To put it in perspective, this arthritis can be caused by infections. And, it was so severe, with a 103 fever, when it first came I could not walk at all or work for over a month. After blood cultures and 14 other tubes of blood to check for infections and other things, no infection or abnormal lab was found. But it is autoimmune, and comes and goes when it wants. A lot of autoimmune diseases do that- come and go. So I wonder, there may be different triggers for autoimmune conditions... and maybe they can be hard to find. When my arthritis flares it isn't always when I am sick. And they don't check me for infections, they give me short term steroids to calm it down. Just food for thought....treating the autoimmune process of the disorder instead of stressing all the time about what is the trigger...I think that is what Dr. K. means when he says in his website that antibiotics may not be the long term solution and why he pushes for the IVIG...

Well said. If we get "cured" I want to continue the fight as well.

WOW. To me this is exciting stuff. Don't forget the power of numbers. If everyone who reads this PANDAS forum gave $10 or possibly $20, imagine what that could add up to...I'm just saying...but we can all look for larger donors too. I am fascinated by all of this information. My ds9 who is PANDAS has had issues since age 3 or 4. I cannot tell you how many times I thought he had Asperger's. At the most recent appointment with our developmental pediatrician, he told me he just doesn't see it. He is too social. But I'm telling you he has a lot if overlap here. We kept taking him to this developmental guy, we actually had him tested for autism before the BIG PANDAS flare. After the big flare this doctor says to me "Autism does not appear overnight". I have kept that comment with me ever since. But as we all know, PANDAS does happen overnight.

Good to know. We live near Akron.

Question: I had read Dr. K's suggestion as above on his website. He also said by email the cost of IVIG can be $6,000 to $9,000 based on patient weight. I wonder if that cost is for the whole 2 day treatment or do I need to double that since it is 2 days. Also, why do some kids get one two day treatment and others have IVG every so many weeks?

My son pronounces words OK but he does funny little mix up phrases. For example, he will say "by the sides" instead of "besides" Sometimes it is funny...my younger son picks it up too though...

I live in Ohio, so maybe each state is different; but I told a little of my son's story to a second grade teacher I know, and she thought my son would benefit more from something called a 504 instead of an IEP. She told me the 504 was more for medical problems and the IEP is more for behavior. For example, more time to take a test due to not being able to finish in time due to OCD, ect. We were told by a developmental pediatrician our son may need a keyboard, but we never got to that as his symptoms come and go, and we don't need it now. I'm not sure how that would have worked in 3rd grade? I do know of a family that had to leave a private school as the school did not have the resources to deal with their DD's dyslexia and ADD. She did much better in public school, having those resources. I always say, private school for middle kids, public for advanced kids (access to gifted programs) and kids with needs. That is why I never considered private school for my ds. Just my opinion, though.

We want to see Dr. K also. I contacted the info on their site and called one of the offices. I am waiting on a lot of medical records that I want to send ahead of time, but his staff on the phone was helpful and will tell you what to do.

To me it smells like a yucky medicine like smell. Not like spoiled food or anything, but distinct and different. Sorry, it is hard for me to describe. I still wonder about sinus areas and stuff like that because he had no sore throat or fever...just increase in tics and OCD and the smell.

My plan is to wait for Dr. K. I did not write this in my first post, but we have seen many local physicians over the years. Myself, I had been unsure that my son really had PANDAS until recently reading Dr. K's site and reading this forum. Now I feel he has to have it. But I want Dr. K's opinion. At one point, I had been seeing one of our local infectious disease specialists, and I asked him about antibiotics. He gave us a 7 day supply and told me to call back. When I called back the nurse gave me the brush off. That told me he was not on board, which he could have just told me in the office. Our family doctor is reasonable, but I also do not think it is fair of me to expect him to treat something that frankly, I know more about than he does. With a full recommendation from a specaialist (Dr. K), I think our doc would me more receptive.

I agree that rashes can be hard for health care providers. Some can look similar to other conditions. See my prior reply: if the doc cannot see it fullblown and only sees it faded and almost gone, what can you do? In an adult with no sore throat and the fever is gone, and kids not currently with strep, my doc did not think of strep at the time.

Yes, although maybe a little more fine and sandpapery. I have a dermatology book since I work in healthcare, and it looked like scarlet fever or a nonspecific viral rash. If my ASO was not elevated the next week after my son came down with strep, I would have thought it was a virus only. But to me, it seemed too coincidental. And it happened over Easter and the rash was almost gone by the time my doctor saw it.

Here's a bit of our history, dd7 has a history of absent staring seizures, short stature, tummy and bowel trouble and behavior trouble. We started seeing a Dan! (Defeat Autism Now) doctor because she had a lot of issues seen in children with autism. The DAN! protocol includes gluten and casien free diets because many people find that behavior and physical issues will often get better. When we went gluten free, my dd's seizures went away, tummy and bowel trouble cleared up, she started growing and she was better behaved. My dd8 went gluten free and her skin (itchy, eczema, etc.) cleared up 100% and she became less angry and better behaved. This was all before learning about PANDAS. We also found out that they did test positive for gluten intolerance but regardless of that, it is believed that even if they did not, that gluten free can still help with a lot of this stuff. Wheat for one causes inflammation in the body just by nature of the grain. Removing it can reduce inflammation and cause less pain or other symptoms that may be related to it. Somehow I think that PANDAS and autism are related and following some of the protocol's for autistic children can also help our children. I'm sure others will have more info than I have but this is where we were coming from when we started gluten free. Just as a side note....I since learned I'm allergic to wheat so I don't eat it any more either and my skin allergies and itchiness went completely away too. Susan It is interesting that you would say PANDAS could be related to autism. We had to have that ruled out, and had several visits with a developmental pediatrician.

No culture, since treating anyway. He does not have tonsils anymore, not sure if that makes a difference in the effectiveness of the rapid. But he had no sore throat or fever either. If the doc was not giving antibiotics, he would have cultured him, I'm pretty sure.

My ds9 wanted to switch to our family doctor since his old ped was female. He had his second visit with him a few weeks ago to follow up asthma. He knew briefly of the possible PANDAS thing, but I did not push the issue with him since we are planning to see Dr. K in the next few months. I asked the doctor to check him for strep (please) even though he did not have a sore throat that day because he started having a symptom flare a few days before the appt. Our doctor said to me "we can test him, but even if it is negative I want to treat him anyway...he smells like strep." So they did a rapid strep: negative. He was started on Omnicef for ten days. His symptoms abated with the Omnicef. Now, I have to tell you, that he did have a certain weird breath smell; I could even smell it in the waiting room while we were waiting, and had this smell for a few days. It is now gone. It makes me wonder where the strep is/was...I think Buster or someone else said it can be in the sinuses?

This is not related to math, but my son went from advanced above level reading to average and most recently failed his state reading assessment test in reading.

I put scientist for my husband's occupation as he has a degree in computer science. He is now a web developer. However, before getting that degree, his first degree was in graphic design and illustration and he did that for a number of years. As for myself, I put other. I am a nurse practitioner (OBGYN). I'm not sure if our son had symptoms before PANDAS like symptoms. To me, it is a blurred line. He was three when I noticed something, but that is in hindsight to the explosion from when he was four. I mean, all kids do unusual things sometimes and I only later realized his sx at age 3 were probably related. And, our son had strep and was sick so much I would have to say yes that it was related to illness but would that be because he was sick often and it just appeared to be with symptoms? Another reason to see the immunologist, which we have not yet done. But, as in my fist post, most times now I can see the correlation with illnesses.

Hello to all. I have been reading this forum for four weeks. First, I am so thankful to have found this forum and the PANDAS Network. I really believe there are outside forces at work; me finding this site. You see, my ds9 most likely has had PANDAS since the age of 3 or 4. One day, about a month ago, I was cleaning out my favorites on my internet at work. I came across a site I had saved when my son was 4- a site on PANDAS. I must have bookmarked it since it was such a good site for PANDAS info. I'm sure I had not seen the site in the last 5 years. Turns out, it was Dr. K's site. I scrolled down to see this picture- you know the one- of the dolls the little girl drew before and after IVIG. I was FASCINATED. This school year, my ds has had trouble with drawing and writing issues more so than normal, and mostly when sick. At one point, he brought a paper home from school, and I could not even read the handwriting. The pictures above it I swear were SCRIBBLES only. But when he was better, the writing returned to normal. I have spent this entire school year so far trying to figure out why my mostly straight A son has been failing the state standardized tests. We had a full speech evaluation and appointments with pediatricians and developmental pediatricians. No one can find anything wrong. But that is not the whole story. This is our experience, but it is long. But I think the more info that is out there, the better. My dh and I have spent the last 5 years assuming our son does not have "PANDAS" but rather classic OCD and Tourette's with "PANDAS LIKE" exacerbations. He does well, but definitely has symptoms when sick or with strep. Where to start? Let's see... Age three, lining up letter puzzles nonstop. He'd make us buy more puzzles to make more words, and we would do it. Hand flapping. Food aversions. Severe separation anxiety. Took him to preschool the first time and he threw up he was so upset and did not drink anything the whole day. Went to pick him up and he was standing by the fence waiting for me, crying, while the other kids played. Age four, hand flapping, but also now has head shaking back and forth and this marching hop thing. I mean, what the heck? But this is transient. So when I tell the doc, she has no answer. Still severe separation problems. A few months later starts the eye blink. I took him to the eye doctor as any good Mommy would do, and his eyes are normal. Then the real stuff starts a few months after that. March, 2005. I can remember this like yesterday. My ds starts spitting. Not just a little. Spitting all the time and saliva everywhere. He does this spitting thing for about four days. Then, in a 2 day period, he lost it. The spitting was joined by huge unusual body movements: arms up and down and around. Marching with head moving back and forth and arms moving at the same time AND humming and unusual noises. In addition, he could not eat. He was so hungry but could not eat. He would only try to eat an english muffin but we had to make it a certain way and we had to let him oversee. He would sit there, all of four years old, and pick up his plate and lower it multiple times with these unusual vocal noises. He would put the plate down and then do an arm rake thing over the food. Most times he still could not eat it and even if, only a mouse bite. Plus, he was seeing flies and was upset there were flies on the muffin. He would see flies while riding in the car. We hid his board book "I know an old lady who swallowed a fly" which I'm sure is where that came from. At one point his body is moving in all directions and he looked at me and cried " I just want to eat my food!" He was so hungry but could not eat. I still get upset thinking about it, as he could not eat for almost 2 weeks and were close to taking him for hospitalization. At this time, he is also doing a robot walk thing and doing this staring thing- like he was not "in there". He would be gone for up to an hour at a time, then come back. SO scary. We were very aftraid one of those times he would not come back. Of course, this was so distressing as it exploded over 2 days, we were sent to the ER. They just watched him. And, decided it was OCD so see psychiatry. You know what? In hindsight, thanks for nothing. That led us to no where a la Saving Sammy as of course, it was an 8 month wait to see a psychiatrist. We were then also told to see a neurologist. It was there, with him that we first heard the word PANDAS. This neurologist ordered a CT scan of the head and an EEG to rule out seizures. He ordered an ASO titer. I remember taking our ds for these tests, and in addition to his other symptoms he developed this horrible leg/hip/knee pain; but no swelling. He had to be carried to the bathroom, as it was so bad he could not walk. I remember asking the doctors about this pain, but to be honest, the other symptoms were so distressing at the time I think it got shoved under the rug by us and the doctors. This severity of symptoms lasted about two weeks, and at our follow up appointment with the neurologist, we were told this was not PANDAS as the ASO titer was normal. It took both my dh and myself 3 weeks off work to care for him. He very very gradually improved. About 6 weeks after this happened he could go back to preschool, but he was still spitting. They let him spit in a trash can but still come. I took about 3 months for these symptoms to fade. Since the ASO titer was normal, my dh and I assumed this was OCD and Tourette's and dealt with it, and have ever since. Over the years since that horrible time, our ds has done very well. He does well in school. He has friends. He goes to birthday parties. But the symptoms still come back; but not in a debilitating way. I have watched this over these 5 years and can say with confidence that he will begin with tics one day, the next day get a mild sore throat and fever, and the following day have a high fever and be positive for strep. He will get Omnicef for the strep as he is allergic to amoxil and our ped doesn't like zithromax. And he will gradually get better. My dh and I joke that his tic increase is a better indicator of strep than the rapid test in the office, and we had a few negatives of those when testing "too early". When our ds was 6, he had his tonsils and adenoids out after having strep throat nine times in a row. That was not fun- it would not go away. After the surgery he would still get strep, just not as often. My younger son has had some bouts of strep, to be expected. I have had strep throat several times over the last 4 years. My husband had his tonsils out so doesn't get it as often. Two years ago, I was sick for several days with what I thought was a virus. Then, the first day my fever was gone I had a rash from the neck down. One of my coworkers swears I had scarlet fever, as she had seen it before. I couldn't get in to the doctor until after the weekend and by this time both my knees were swollen. At my appointment I was given prednisone and told it was most likely viral. But about 4 days after that, my ds had tics and of course a few days later positive for strep. My doctor then checked my ASO titer and it was elevated. He gave me amoxil. What a joke! Looking back now, I can put the pieces together. My ds mirrors many kids on this forum: frequent strep, strep in the family. Allergies. Sick all the time with all kind of crap that isn't even going around at school. Asthma. You name it, we have it. Plus all the other family stuff you all mention. It really is truly amazing to me, all of my ds's little quirks and nuances are listed here. So for now, I plan to join this forum, continue to research as much as I can, and see Dr. K (he is closest) as soon as we are able. If Dr. K says he has PANDAS, I will not be surprised. If Dr. K says he does not have PANDAS, I will not be surprised. And, by the way, if anyone is still reading this ridiculously long post (I should be in bed), it took me awhile to choose my "name" for this forum. I chose "reactive" because I was diagnosed many years ago by a rheumatologist with "reactive arthritis". This autoimmune disease causes arthritis and swelling in multiple joints. When I first got it I couldn't walk for a month. It comes and goes. It is considered "reactive" because your body is "reacting" to something; like Lyme disease, or other infections or to some thing else that is unknown (as is my case, cause unknown)...I am starting to think maybe strep?