Missmom

Wow, I read that book-my heart goes out to you for all that you have been through. So glad you never gave up. You and moms like you are paving the way for future generations. Thank you for your response. I feel better knowing that at least there are many people out there trying to find answers.

I posted about a week ago with my story. I think you could still find it. My ds 12 starts with tics overnight when he gets a strep infection. We went two years between each infection but this time seems worse. He also gets moody, hyperactive, and argumentative. He has improved by about 90-95% so far on augmentin but I am so scared when it runs out that it will all return. I do also have 6 mos of keflex prophylactic. Hoping it is enough.

I am new here and I know most of you understand this way better than I do so I thought I would see if any of you could help me understand this better. As I read all the info regarding pandas they'll talk about how the body creates antibodies to fight off the infection (o.k. I get that). Then the antibodies mistake the healthy tissue on the basil ganglia for the strep bacteria and starts fighting off or attacking the basil ganglia. (still I get that). Here is where I get confused.... Once the child takes an antibiotic to kill off the strep infection and the infection goes away then what happens to those antibodies? Do they continue to attack the BG which in turn keeps the pandas symptoms active? Do the antibodies eventually weaken and die off putting the child into remission until another infection re-exasperates the symptoms? If so why do antibiotics continue to work and why would the child need long term full antibiotics unless there is an active infection? If the infection is cured how long on average would it take before the the antibodies start to weaken. Instead it seems like the child's symptoms seem to keep lingering or getting worse once the active infection is gone. Is there an article anywhere I can read about this in so called. "laymans terms"? Thank you all in advance for any input you might have.

Ditto, I posted earlier on another topic about how brave each of you have been in trying all of these scary, unconventional, and sometimes controversial treatments all in the efforts of helping these children. You are all blazing a trail for all of us newbies out here just trying to figure it all out. You are brave for standing up to all in the medical communities who are non-believers, and not taking no for an answer. The more information we all know the sooner we can make a difference with our children.

Thank you all for all of your responses. You are all very brave moms who have been willing to try almost anything to cure your children, even if it meant trying controversial, scary, and unconventional treatments. You really are blazing a trail for all of us newbies out here who are just trying to figure it all out. You all seem so very educated and at this point I would bet that most of you could teach a thing or two to a lot of medical professionals out there. I enjoyed reading all of your responses and hope to hear many many more success stories.

We have a salt system and it is much easier on the skin and hair. I know it is expensive to switch initially but you really do save money on all the chemicals. Less hassle as well. Just a thought. We buy one or two bags of salt a month about $5 each.

Just curious what dose of keflex was your ds taking. My ds was given a prophylactic dose of 500mg daily for 6 months. He weighs about 95 lbs. just wondering if the treatment dose is double that.

Thank you for your message. What I find very frustrating is that pediatricians are hesitant to prescribe the strong doses then it can turn into weeks of failed antibiotics. I wish we could just buy them over the counter our selfs just like you can in Mexico and other places. I think that is the reason this episode is going on for so long. What I have found is that urgent care places give higher doses but I really don't want to go that route now especially since the rapid tests have been coming back negative for strep. The pediatrician did ask me if I thought getting tonsils out would help but then I was like "what do you think". He should be telling me what to do..... I am not the expert here.... How Long did your ds third episode last? How bad was the surgery for him? I am open to that if my ds doesn't get better soon. We live in Mississippi so it is at least a two day drive for us to see an expert. Although I would jump in the car in a heartbeat if necessary. Do you have a pandas doctor or just someone who is learning as well.

I have been on such an emotional rollercoaster for the past two weeks. I have blamed myself for not catching it sooner, etc.... And I think I have lost about 10 lbs. I know this site is filled with moms just like me who are looking for answers but my biggest fear now is if most of these children do get better and go on to live normal productive lives. I wish there were more answers. Do they suffer long term brain damage or have the pandas develop into other things such as Tourette's. There should be a forum on here with follow up stories and testimonials from moms who have beat this terrible illness. I know I am having a pity party here and I am such a worrier, but this is very overwhelming. my dh told me to quit reading so much on the Internet but I feel that I need to be educated... For those of us not seeing a true pandas specialist we absolutely have to know what is going on and what to ask for. Sorry to vent but I feel like crying all day long. My ds12 has always been such a normal, bright, happy, popular, kid. I am afraid now if the other kids see these tics he is experiencing that they will start to make fun of him and totally ruin his self esteem. Middle school years are tough enough without having all of this to have to deal with.

Thank you for your response, my son weighs about 95 lbs so maybe he needs a little stronger dosage. I may call the dr. On Monday and ask for a little stronger dose if he is not doing better. I have no idea what probiotics would be helpful or where I would purchase them, are they basically the same as vitamins? As I said I am new here. I live in Mississippi and will travel to see someone more experienced if necessary but for now my pediatrician seems to want to help, plus I need a referral for insurance to see a specialist. This last time because the rapid tests came back negative we did the blood test to determine the strep. so I was hoping that if we go back another blood test might indicate if the infection is gone. I am so sorry you are dealing with this with a five year old. It sounds like you have a pretty good plan though. We can only pray that these children outgrow this at puberty.

I am new here but have found most of your posts very helpful. My ds12. Is now on his third pandas episode although we just got an official diagnosis ten days ago. The first was when he was eight and it was very mild just mainly a mild grunt and some anxiety. At the time I just assumed it was a nervous habit and it went away. I did not associate it with his recent strep infection. The second was a blinking episode that lasted about a week he was 10 years old. He complained of a burning throat at that time and the doctor called in biaxin it went away. About a week after that I read an article in our local paper describing pandas symptoms and it sounded as though I could have written the article myself. My son also had a fear of germs and washed his hands before putting anything in his mouth (not a bad thing right). He also needs reassurance that he is going to be ok. Now he is 12 and started with a head nod overnight and it was almost constant.. I immediately knew it was strep related. Took him pediatrician who took two rapid tests both came back negative. I asked for the strep blood test which took five days to come back positive for strep. The pediatrician then diagnosed him witH pandas and consulted with another ped. Neurologist. I have two weeks of augmentin and then a daily dose of keflex for six months. My questions are. How long should it take before tics go away? They immediately subsided some but are still present. Now it seems like they are remaining constant but not severe.. His attitude seems to be improving and less fidgety as well. How do I know if this is a strong enough prescription and if the infection is going away? Can the doctor run another blood test to see if it is gone? During the two previous episodes the tics were gone in about a week. How do I know if this is a strong enough dosage? I am afraid this is not strong enough then we are back at square one. I have read other posts saying that the tics are usually the last symptom to subside. He is taking 500 mg aug. twice a day. This is my pediatricians first case of pandas he is on board but has been consulting with another dr. Who has seen cases. So he is learning as well. What are some good questions to ask him on my next follow up visit? I know we are learning by trial and error here so I hope to learn and benefit from all of your experiences. We had almost two years between episodes so I am just hoping to get back to normal. Thanks. Missmom