Ginger

Oops...I forgot IGE. Anyone know how to change a poll??

Hello Everyone, Just curious to see how many of our children have immune issues. Sorry if this has been done before! Thanks! Ginger

Ugh!!! My son did not like that shot!!!! Not sure we are going to be able to do this every month. He is a pro at giving blood, but this shot thing...not so much. Poor little guy!

Hello Colleen, My son seems to have elevated MPV, High Neutrophils and low Lyphoctes. C reactive Protein is always high. However the WBC is usually in the normal range. Sorry I don't know if this helps or not.. Ginger

Good Morning! My son has a doctors appointment this morning, and I have a question. He has been on Antibiotics now since Feb. 15th for strep. The latest being Keflex, this one seems to help the most. Anyway the doctor wants to give him a shot of Amox. this morning. He gives this to his Reaumatic Fever patients. It is suppose to protect him for 28 days?? Has anyone had this? What are your thoughts? Thanks so much! Ginger

Just thought I would post my son has had numerous confirmed strep infections, and with negative ASO tests. We have tested 3 times during an infection, at 3-4 weeks after and the other one I really couldn't pin point, because all of the infections seem to run together. They just never seem to rise. Ginger

Wow. That is great that you have so much proof of this. I can always tell when my son has strep, by the fact that he starts to spell his name backwards...he is only 3 so that is really the only thing he writes, but his coloring and pictures are awful as well.

Is he trying to be funny? Silliness is a common PANDAS behavior. I watch kids at my gym's daycare twice a week and there is a 3 year old that also blurts out random words that he thinks are funny. It's totally him trying to funny because to him and several of the other younger kids, IT IS funny. Thanks for the laugh ladies! As I sit here and read my post I think this really sounds so insignificant, why can't I stop analyzing everything and just enjoy my sweet boy!? I guess when you factor in everything else it just gets so overwhelming, and you what more then anything to have a healthy happy child. He is probably just tying to be funny, and his mommy is just not getting it. I need to work on enjoying him more. Maybe I should just blurt out the word eyeballs every now and then, or I like chicken...and see how he responds..lol Thanks again!

Hello everyone, Just curious if anyone else has experienced this? My son is 3 1/2 and every time he gets strep he starts to make up words. Not really baby talk but words that just don't mean anything and lately we will be talking and he will just blurt out crazy words like eyeballs. It is very frustrating, so I am curious if he is just being 3 or if this could be a tic??? It usually gets better when he is on antibiotics, but this time not so much. Thank so much! Ginger

Just wanted to say good luck tomorrow! Wish I had info on IVIG, but we haven't went down that road yet. Please keep us posted.

Thanks so much!

Thanks for the info Ladies! My son has been on Augmentin, Keflex, tried Biaxin but he won't take it, zithro. Oh gosh, So many I really don't know where to begin! The doctor decided to go with Bactrim based on information he received from the Mayo Clinic. I think, becasue this is the only antibiotic we haven't tried??? My son's IgG levels are really low, in all sub classes but more so in 3. Please see below. I think many of you are experiencing the same thing. Total IgG 355 Ref Range 295-1156 IGG-1 268 range 158-721 IGG-2 70 range 39-176 IGG-3 19.6 range 17.0-84.7 IGG-4 3.3 range 0.4-49.1 IGG E 5 range 0-230 IGG A 58 range 16-94 IGG M 58 range 18-126 C-REACTIVE Protein 0.7 Range 0-0.5 He is not a strep carrier, based on Dr. T's observation. His ASO Titer is always negative. He is a responder to Vaccines, however I don't know which one's the doc tested for. Cole has had Strep more times then I can count. Last year we went through the exact same thing from October-April every month. We have treated everyone in the house including the dog. I change his toothbrush evert week. He has been on antibiotics since Feb. 2 nd this time. I am so tired of sterilizing everything, expecially because obviously it isn't working. I am also OCD when it comes to cleaning. Ugh, really does a number on me everytime..My poor husband and child! lol Thanks for listening everyone!!! Hope you have a wonderful Easter. Ginger

This article gives me hope! Not sure how to post a link, but I am going to try. Vickie thanks for posting the above article, of course I was then curious and found some more info that explains how the doctor found this connection. Good stuff http://journals.lww.com/neurotodayonline/p...p;type=fulltext

OMGoodness...I have never thought of this. We just put 3 Spiderman tattoos on this morning. Sould we worry about dying easter eggs as well?

This is so scary, but also so fascinating. "A doctor in Pennsylvania developed a way to test for the antibodies that trigger the disorder" we need a test like this for PANDAS!

Hello Everyone, Well I am 99.9% sure my son has strep again. I hate strep!!!!!!!! I took him in yesterday to be tested, we did not do a rapid since he is on Antibiotics, so the doc took a culture. He has had all of his normal symptoms...aggresive behavior, problems sleeping, melt downs. This all started a week ago, but I guess I was in denial. Then I noticed the strep breath on Tuesday and Wed. morning he said his mouth hurt. Then our last stage started last night..bed wetting. Guess I should mention there were 2 confirmed cases of strep at his daycare this week also. Hoping you could help with a few questions. He was on Augmentin ES 600mg/5ML SUSP 75ML 1/2 teaspoon morning and night. Was this just not enough to protect him? He is 3 1/2, 40 pounds. The doctor has prescribed Bactrim. This will be his first time taking this medicine (I thought we had tried everything) Have any of you heard of this for Strep? Thanks in advance for your help. Ginger

Thanks for the input. I am doing the exact same thing (Checking Temp)...and yes you are right you can't really see it. I have noticed this on my son before, but never this bad. The doctor seemed pretty sure it was a strep rash. I have to say the yeast thing makes since, because he has been on so many antibiotics. However, his daycare is full of Strep right now. Who knows!! Sometimes I think I am going to lose my mind with all of this. He has been complaining of his tummy hurting as well the last few days. Today was a scheduled appoitment to draw blood and run more tests. We have already confirmed his IgG levels are low. Now we need to figure out WHY. Thanks, Ginger

Hello! My son has that sandpaper rash back again, and a red ear. He is on Keflix twice a day right now and his rapid came back neg. His behavior is actually only ramping a little. Any experience with this rash? Could it be Yeast??? My son is 3 1/2. Thanks in advance!

Hello Everyone, Just curious if anyone has suggestions on what type of Vitamins and Probiotics? How much..Ugh, way too many to choose from. Thanks! Ginger

Hello Again, Just thought I would update everyone on the test's my son had done, and need some advice. First I want to take a moment and let everyone know my thoughts and prayers are with all of you. Everyday I read post's that just break my heart. Thank you for helping me through this, it means more then you could know!!! I have also attached my previous post, so you know what we are dealing with. I do have good news to report, my sweet boy is coming back to us. The only sympton we are dealing with now is bed wetting. Poor little thing this makes him so mad! He is still on Augementin, and I see a huge improvement!!!! We had a bunch of tests done this week, we are still waiting on Lyme, and Streptonase. The only tests that were abnormal were Immunoglobin G it was low at 390 on a scale of 453-916. The other was just slightly elevated and this was C-Reactive protein 0.7 on a scale of 0-0.5. I was very suprised the Immunoligist suggested IVIG. Not sure how Im suppose to feel about all of this...Should I be happy?? I guess this would explain why he is always sick, but is it really that easy??? If so, why didn't we do this a long time ago??? Are we missing something, why does he have this immune def.? Sorry I am really confused by all of this. Any feedback would be greatly appreciated. Thanks for listening!! Ginger Hello Everyone, This is my first time posting on the site. I am looking for some next step advice from all of you. First I want to thank everyone for taking the time to tell your stories. Your stories have given me the strength to stand up and say "I know my son, I know something is wrong!!!" Let me start with a brief history of my son's health. He is currently 3 1/2. Our first confirmed Strep case was when he was about 6 months old, the doctor was very suprised by this, he stated that Strep is rarely seen in children less then a year of age. Prior to this we had numerous ear infections and at 7 months old we had tubes put in. (Not sure how much of this is relevant, but thought I would include as much as I can remember. If I would of known we were going to be going through all of this I would of documented everything better)His ear infections subsided after the tubes, and has only had 2 confirmed ear infections since. Over the last 2 years he has had approx. 12 confirmed cases (Maybe more)of Strep. Most of the time the only way I know he has Strep is by his behavior. In December we had his Tonsils and Adenoids removed he has had two confirmed cases since then. What started me on this PANDAS journey was when he was 2 shortly after a Strep infection he started blinking his eyes repetitively, having horrible melt downs, seperation anxiety, difficulty sleeping, hitting, and couldn't sit still. I talked to his pediatrian about PANDAS, but he quickly dismissed. We have a wonderful pediatrician so , I trusted that I was just being overly concerned and it was just a coincidence. With every confirmed case of strep we would put him on 10 day course of antibiotics and he improved, until another strep infection. I don't think we are getting rid of it and it just hangs out in his system. Finally after 2 years my sons pediatrician has had several other cases and is a believer. This is what has happened in the last 2 weeks. My son had sinus infection and ear infection, so doctor put him on 10 days of Augmentin. He got better after 3 days of being on meds last day of medicine was last Thursday. Come Sunday, crazy strep behavior showed up again. All of the above symptons, it is horrible. He is a completely different child!!!!!!!!!!!!!!!!! Where did my sweet boy go??????? All I could do was cry! Monday I made a appointment for Thursday (Yesterday) I wanted to make sure my husband could go, because we needed to get some answers!! The doctor needed to understand, it is not just me seeing all of this. Wed. night my son told me his mouth hurt...oh no.. I thought. Good thing we are going to the doc tomorrow. Guess what?? He tested positive for Strep again yesterday. The doctor agree's we have to do something different. He is know on 15 days of Augmentin, then the doctor wants to see him to do some tests. I know he is going to test his immune system, which is probably long over due. Back in december we had his ASO Titer checked and they were negative (70). Here are my questions: Any ideas on what test's we should have done? I am having everyone in the house treated with Antibiotics again even the dog. Do you know how long strep can live on surfaces? I change his toothbrush weekly. What other steps would you recommend?(He does go to daycare, so he could be picking up from there.) Thank you in advance for your help! Ginger

My son has complained of his fingers and knees hurting during and shortly after a strep infection, this was one of those times that he had strep back to back for 2 months.

Oh my goodness! Hope you had a c-section! Wish I would of...

No steroids with my son. I had to be induced at 41 weeks. He was very large 9.8. He was Jaundice due to the trauma. Poor little guy, seems like it is always something!