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Ginger

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Posts posted by Ginger

  1. 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

  2. My dd10 is one of those asymptomatic strep kids and we weren't pointed to pandas until 6 months ago. So, it's a little difficult to remember back over all these years and chronical the good times and the bad, which over time have manifested into bad times and TERRIBLE.

     

    I have two clues;

    #1 from kindergarten where every month the children were asked to draw a self portrait on a card. At Back to School Night, the teacher explained how we would see the children's pictures improve with each passing month, adding more and more details and we would receive it as a Mother's Day gift in May. Well, hers did not follow the typical pattern and it reminds me so much of those before/after IVIG drawings on Dr. K's site. Hers looked almost exactly the same only over the course of 9 months, I can look back and tell...ah sept and oct- great, lots of detail, nov, dec, jan-barely stick figures, feb, mar-wow! really good again, april, may, back to messy, asymmetrical figures with no hands or feet or nose.

     

    #2- Her homework copybooks from 1st, 2nd, 3rd grade. Homework is written same time everyday in the copybooks. I can flip through the pages day after day and chronical how she was doing behaviorally & cognitively based on the dramatic changes in handwriting. And not only would her handwriting go from pretty good to 'what the heck is that!', but it would also be littered with reversals and sometimes whole words written backwards! In 3rd gr, she would even reverse print letters in cursive!

     

    The fine motor- using utensils, handwriting, drawing, has been one of the most objective measuring sticks. When fine motor is clear, concise and put together, so is she.

     

     

     

     

    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.

  3. 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

     

    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!

  4. 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

  5. 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

     

     

    Should of listened to all of you! The Bactrim is not working! Making up words, can't sit still. I don't think he has stopped talking, yelling since he woke up at 6:30. Please give me the strength. My poor little boy.

     

    Thanks for listening!

  6. Good Luck!! I don't know anything about the IVIG so nothing to offer there.... but I didn't see where it said that girl was better in 2 days? I didn't see anymore news updates so we wouldn't know if there have been any of the results some people have seen here.

    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.

  7. Bactrim is not a typical antibiotic used for strep. It is used most often for ear infections and urinary tract infections. I am not sure why your physician jumped from Augmentin to Bactrim.

     

    Besides Augmentin, what antibiotics has your child been on? IMO, if he has strep while on Augmentin, I would switch to Zithromax.

     

    Colleen

    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

  8. I am hoping to find time to write to the author of the article and brief her on PANDAS. I know it's not the same thing, but there's a bridge to the PANDAS topic hidden in there with symptoms of schizophrenia and bipolar and an autoimmune reaction. I'm from Cincinnati, I've written this newspaper before and never heard back from them. I just read that article thinking how "funny" they found this autoimmune reaction in this woman in Cinci, the same city as Don Gilbert.

    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

  9. The temporary tattoos with the red 40 could be absorbed by the skin making him react the same way he would if he ingests it. Just like a nicotine patch, whatever you put on your skin is absorbed by your body. That invisible glove sounds like it would work to keep the red 40 from being absorbed. I was think a clear nail polish would do the same thing but the invisible glove is probably more safe.

    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?

  10. http://news.cincinnati.com/article/2010033...+monster+tumor+

     

    Nightmarish tumor took her to brink

     

     

    In a way, the devil almost got Kiera Echols.But doctors at University Hospital were able to diagnose the so-called "monster tumor" that was responsible for causing the hallucinations that had the Springfield woman demanding a priest perform an exorcism and chase the devil from her.In early November, Echols, 22, went to the doctor twice, thinking she had the flu. She was feverish and achy with a bad headache. A week or two after she started feeling bad, she passed out.Video: Echols' unusual caseHer parents, David and Chellie Givens, took her to a hospital, where doctors diagnosed her with meningitis. She spent six days in the hospital.But the same day she went home, she began hallucinating. She complained to her parents that children in the corner of her bedroom were fighting and being too noisy.Later in the day, she told her parents she was in labor, though she insisted she wasn't pregnant."She went around the living room and introduced us all to her baby," Chellie Givens said.Back to the hospital they went, about six hours after they left.Doctors there told her parents that Echols needed to be admitted to a psychiatric unit.But the Givenses didn't believe it. There was no family history of schizophrenia or bipolar disorder, which can both cause hallucinations, and she'd no signs of mental illness previously.Echols was transferred to the emergency department at University Hospital, where, as it turned out, she was in the right place at the right time."She was screaming at me to call a ... priest because she needed an exorcism," Chellie Givens said. "She was lunging at people. She was just completely psychotic."Within half an hour, doctors told her parents that they suspected Echols had an unusual form of encephalitis that was causing her hallucinations.And they'd already seen two cases of it that year."It looked very much like the beginnings of a schizophrenic or bipolar episode," said Christopher Kobet, a fourth-year neurology resident at University Hospital who helped pinpoint Echols' problem.But the real culprit wasn't in her head: It was a tiny tumor on her left ovary.The tumor was a teratoma, a freakish, but not uncommon, conglomeration of basic cells growing out of control. Some teratomas, if they're big enough, even contain eyeballs or tiny feet.Echols' body recognized the tumor as an invader, and developed antibodies against it, just like it would develop antibodies against a cold virus or a form of pollen she might be allergic to.Those antibodies attacked certain neurochemicals in the brain, triggering the encephalitis and the hallucinations.Doctors gave Echols steroids to bring down the swelling in her brain, and performed surgery to remove the tumor.The tumor was so small - less than a centimeter - that it wasn't visible on CT scans, said Ed Richards, the director of gynecologic oncology and advanced pelvic surgery at University. But they knew it had to be there.He was able to use robotic surgical techniques to find and remove the tumor."She was totally insane when she came in, to the point where she would lunge at you, thinking she had to defend herself against you," Richards said. "And a few days after the surgery, she was pretty much back to normal."Echols was lucky. Her form of encephalitis - called anti-NMDA receptor encephalitis - was identified only in 2007, though it's probably always been around. A doctor in Pennsylvania developed a way to test for the antibodies that trigger the disorder.University Hospital doctors had already seen two cases by the time Echols came in - one early in the year, and the second in the summer.And two weeks before Echols was admitted, they'd gotten additional training on the disorder."When I first saw it, I thought it was a once-in-a-lifetime thing, what we call a zebra," Kobet said. "But it's not rare at all."Now that doctors know it exists and how to test for it, more cases are cropping up.The implications of not making the right diagnosis are frightening."How many women, as recently as the 1950s and 1960s, were institutionalized with this because people thought they were schizophrenic?" Richards asked.And there's also the fact that encephalitis, if it's not treated, can be fatal, Kobet said.He submitted video of Echols to the American Academy of Neurology's Film Festival.Echols was released on Dec. 23. She's waiting to find out when she'll be cleared to return to driving and to go back to work. And she's working to raise awareness of what made her so ill.She doesn't remember much about the whole thing, other than wishing her husband, Mike, had been with her. Mike Echols, who is in the U.S. Air Force and stationed at Wright-Patterson, was in Texas for training at the time.But, having seen video that doctors took of her while she was psychotic, she worries about other people who might have the disorder and not know it."I know that wasn't me," she said.

     

     

    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!

  11. 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

  12. 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

  13. I don't know what to say except that we are in exactly the same boat as you except that I have two of them (see my post from last night about just having found out that they are both immunodeficient.) Very similar history and everything, except that our PANDAS hasn't been that bad. I haven't known how to feel either. On the one hand, happy to have some answers and happy, in some way, to have results that don't send us all the way back to the drawing board. But on the other hand, left wondering....how did THAT happen? How did my kids get so sick? Why didn't this come out earlier? What's in store for the future?

     

    It's tough - wanting answers given that something is obviously wrong, but deep down really wishing that nothing was wrong and that everything would just come up clean and go away. At first I was happy to have something to work with and "proof" that something was actually wrong. But by the time I went to bed I was depressed and just wished that it wasn't the case and that I didn't have to put them through whatever comes next.

     

    Sorry you are going through all of this! You pretty much explained exactly how I am feeling. When we received the results at the doctors office, I of course started crying. The doctor said I should be happy, because this is curable. I was very suprised how fast he suggested IVIG, based on one test. I suppose he took into account the fact that my son has only been well while on antibiotics...IVIG scares me...what are your feelings on it?

     

     

    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

  14. 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

  15. I need to get my medical records! The winter our dd had her first signs of PANDAS (in hindsight), I'd had a super sore throat and shortly after that developed really bad pain in 1 ankle that lasted maybe 4 days. Day 2 I could hardly walk, by day 4 the pain was almost non existent. Dr did c reactive protein/lupus tests etc but nothing showed. It never came back. Reading this thread, I now wonder if it was related.

     

     

    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.

  16. Just wondering if there is any trend in the birthing history of any of our PANDAS kids. Any of you experience pre-term labor that required the use of Terbutaline to stop contractions or the use of a steroid to speed lung devlopment? I had to take both when pregnant with my PANDAS dd. Pre-term labor started at 20 weeks.

     

     

    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!

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