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Please help! We are new to all of this!


Ginger
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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

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Ginger,

 

I don't know how much help I can be, we just got our diagnosis a few weeks ago and are running through our second try at abx - the first try was 15 days of Azith and it was working before the Dr. wanted to wait to renew until he could ck him again. My little guy is only 2 1/2 and he first presented about a month before his 2nd birthday.

 

There's lots of helpful information on here. Someone named Buster created a system for logging/tracking PANDAS behavior and tics and charting it. We just started doing it and it seems like it would be very helpful to have that information when you go see your Dr. Vickie bumped up the thread that had the information just yesterday, so it should be relatively close to the top of the forum list.

 

We haven't had any extensive testing done to this point, so I can't help you there - but the folks on here seem to be very nice and helpful!

 

Sandra

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I am sooo sorry to hear what is happening with your sweet little boy! Thankfully, your doctor is a believer now! I can tell you one thing I learned yesterday with my son's first appointment with Dr. Murphy in St. Petersburg, FL. My five year old (he just turned five in Jan.) had his blood tested for titers in December. We were seeing some of the same behaviors you mentioned above--specifically anxiety, nightmares, frequent urination, separation anxiety and OCD at first. Anyway, his levels came back in the normal range. I was crushed because his local pediatrician said this proves he does not have PANDAS. I knew in my heart that he had to have it, but my pediatrician was not willing to budge. Anyway, to make a long story short, Dr. Murphy told me that she has only seen one or two preschoolers that have had elevated titers...it's more the norm for them to be in the normal range. She said from her experience, she has seen preschoolers keep low or normal titers, then as they get older some internal trigger or something develops that causes their titers to become elevated. She also suggested that it may be that he has an immune dificiency (sp). If that is the case, and I hope I am not misquoting, his titer levels would never read high because they aren't strong enough to fight an infection anyway. That may explain the titer problem anyway. I know it meant a lot to me because at first, I believed my local pediatrician...if his levels aren't elevated, it can't be PANDAS. That is simply not the case!! Hang in there--my prayers are with you that your little boy will get the treatment he needs!! Also, I hope I didn't relay any misinformation above. I stated it to the best I could remember.

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Welcome.

 

Has your son ever had a negative strep test? Has the doctor discussed him possibly being a carrier?

 

Strep can live pretty long on surfaces. Like you said, change tooth brushes after being on abs for 24 hours, clean the bathrooms and other rooms, with a bleach solution if you can, change bedding, wash stuffed animals he sleeps with, etc.

 

As for the daycare, I admit, I worry. I wonder if my son got reinfected over and over at his preschool. Have a serious talk with them. Make sure he doesn't share cups with anyone, ask how often they sterilize the toys, make sure they inform you if there are any cases of strep in his room.

 

Here are some good threads you can read regarding PANDAS....

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Something you could pass onto the daycare if you wish to help them understand

http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

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Welcome.

 

Has your son ever had a negative strep test? Has the doctor discussed him possibly being a carrier?

 

Strep can live pretty long on surfaces. Like you said, change tooth brushes after being on abs for 24 hours, clean the bathrooms and other rooms, with a bleach solution if you can, change bedding, wash stuffed animals he sleeps with, etc.

 

As for the daycare, I admit, I worry. I wonder if my son got reinfected over and over at his preschool. Have a serious talk with them. Make sure he doesn't share cups with anyone, ask how often they sterilize the toys, make sure they inform you if there are any cases of strep in his room.

 

Here are some good threads you can read regarding PANDAS....

 

PANDAS Fact Sheet

http://www.latitudes.org/forums/index.php?showtopic=6265

 

PANDAS FAQ

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Something you could pass onto the daycare if you wish to help them understand

http://www.schoolnursenews.org/BackIssues/.../pandas0903.pdf

Thank you to everyone for the information. Yes my son has had numerous negative strep test's, so we have ruled out him being a carrier. I know the daycare situation is so frustrating, the really strange thing is my son is usually the only reported case.

 

Thanks Again!

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A lot of parents here have found that someone in their family gets strep without any symptoms, so maybe this is the case for one of the children in your son's daycare. Are parents required to report it? The other possibility is they just aren't reporting it, and this could be resolved with a request from the daycare.

 

My other thought is that a 15 day course is not enough. If he's getting strep repeatedly, he needs to be on longer-term antibiotics to wipe out his existing infection completely and then to prevent any more infections/exacerbations.

 

Thank you to everyone for the information. Yes my son has had numerous negative strep test's, so we have ruled out him being a carrier. I know the daycare situation is so frustrating, the really strange thing is my son is usually the only reported case.

 

Thanks Again!

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A lot of parents here have found that someone in their family gets strep without any symptoms, so maybe this is the case for one of the children in your son's daycare. Are parents required to report it? The other possibility is they just aren't reporting it, and this could be resolved with a request from the daycare.

 

My other thought is that a 15 day course is not enough. If he's getting strep repeatedly, he needs to be on longer-term antibiotics to wipe out his existing infection completely and then to prevent any more infections/exacerbations.

 

Thank you to everyone for the information. Yes my son has had numerous negative strep test's, so we have ruled out him being a carrier. I know the daycare situation is so frustrating, the really strange thing is my son is usually the only reported case.

 

Thanks Again!

 

 

Thank you! I agree 15 days is not enough. Thank goodness the Dr. agree's with this as well. He wants to see him back on the 14th day to run some tests then he will give us another prescription.

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Ginger, I wanted to say hello and to tell you that your story is very similar to ours with the chronic ear/strep infections and such early exposure and normal titers (I have seen ours slightly elevated at times but not anything to concern anyone) and the behavior changes you saw. I am glad you are getting some antibiotic treatment. It took us several years longer to figure ours out so I hope you will really benefit from finding this out now.

 

A warm (yet sad) welcome to our group!

 

Susan

 

PS... also wondering, where do you live? I am interested in cases where the children get strep so young. I live in NC.

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Ginger, I wanted to say hello and to tell you that your story is very similar to ours with the chronic ear/strep infections and such early exposure and normal titers (I have seen ours slightly elevated at times but not anything to concern anyone) and the behavior changes you saw. I am glad you are getting some antibiotic treatment. It took us several years longer to figure ours out so I hope you will really benefit from finding this out now.

 

A warm (yet sad) welcome to our group!

 

Susan

 

PS... also wondering, where do you live? I am interested in cases where the children get strep so young. I live in NC.

 

Hello Susan,

 

It is so refreshing to read all of the similiar stories, yet so unfortunate. As you know it really takes a toll on the entire family. With that said I finally have hope, that big cloud of feeling crazy is slowly lifting. We all know our children and in my gut I have known something was wrong for a very long time. It sounds like you may of been feeling the same way. May I ask how your child is doing and what treatments you have been using? Have you had any tests done to check immune sytem?

 

We live in Iowa. Thank you for the warm welcome!

 

Ginger

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Unfortunately, a lot of parents will just call and say "Tommy is sick" without full reason. Or they will send the kid sick anyway because they need to go to work.

 

You can discuss with the daycare about sending notes home with the parent requesting they notify the school with known cases of strep. If they refuse, ask them if they send notifications home about peanut allergies. Did they request parents notify them about known cases of H1N1? Like previously said, a lot for PANDAS kids do not get symptoms of strep (no sore throat or fever). Also, there is a chance there is a carrier in his room. Can he be switched to another room?

 

I want to quickly ask anout the negative strep tests. Were they done as follow ups after a +? If so, how soon after finishing abs. Also, were they rapids AND cultures?

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Unfortunately, a lot of parents will just call and say "Tommy is sick" without full reason. Or they will send the kid sick anyway because they need to go to work.

 

You can discuss with the daycare about sending notes home with the parent requesting they notify the school with known cases of strep. If they refuse, ask them if they send notifications home about peanut allergies. Did they request parents notify them about known cases of H1N1? Like previously said, a lot for PANDAS kids do not get symptoms of strep (no sore throat or fever). Also, there is a chance there is a carrier in his room. Can he be switched to another room?

 

I want to quickly ask anout the negative strep tests. Were they done as follow ups after a +? If so, how soon after finishing abs. Also, were they rapids AND cultures?

 

 

Yes, I agree that many parents send there kids to daycare even when they are sick. I can guarantee if they were going through what all of us have been through they would think twice. I will certainly ask them to notify me of any recent strep cases going forward. Very interesting that you asked about switching rooms. My son was moved to the 4 year old room just at the end of December and we were strep free for a month in a half, then they moved 4 kids that were previously in his room to the 4 year old room last week.

 

I am a little OCD myself when it comes to taking my son to the doctor. With that said anytime I start to see the crazy Strep behavior I take him in and request a strep test. At first the doctor was very reluctant, because he usually doesn't show any of the normal signs of strep (Sore throat, fever, etc.), so we have had several negative strep tests this way. Always to my suprise, until I started reading that other infections, virus's seem to set off the behavior as well. So usually he has been off antibiotics for a little bit when negative. The strep usually responds to the Rapid tests, I can remember two times that the doctor called back in a couple days after it appeared in the culture. We have also had negative rapid and cultures after finishing antibiotics to make sure the strep is gone, this usually happens when he has it back to back and we think it he is just not getting rid of it each time.

 

Thanks!!!

 

Ginger

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Hello Susan,

 

It is so refreshing to read all of the similiar stories, yet so unfortunate. As you know it really takes a toll on the entire family. With that said I finally have hope, that big cloud of feeling crazy is slowly lifting. We all know our children and in my gut I have known something was wrong for a very long time. It sounds like you may of been feeling the same way. May I ask how your child is doing and what treatments you have been using? Have you had any tests done to check immune sytem?

 

We live in Iowa. Thank you for the warm welcome!

 

Ginger

 

We have done some immune testing on both girls (I've got 2 with PANDAS). So far, everything is coming back in the low normal range, not enough to show an immune deficiency. But they don't show a strong immune response to much of anything so I do believe they have an immune deficiency that we just have not discovered (or they don't understand) yet.

 

The only thing we've really found is a high HHV6 herpes titer on my 8 yr old and so she is on a 6 month run of valtrex to see if we can clear that virus. They are both on daily full dose zithromax. As long as we stay on this daily dose, they are doing OK, my younger better than my older one although she is also much improved. I hope to get her IVIG some day but I am still working on that with our doctors.

 

dd8 has very bad allergies so we are trying allergy shots. No one really knows whether the allergy shots are OK for pandas kids, but we are giving it a try since we don't have much else to try. As long as she can withstand the shots, we'll keep on and see if it will help calm her immune system related to her allergies.

 

Susan

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I asked about the timing of the negative strep tests because if the child is on antibiotics at the time of a swab, you can get a false negative. This is true for a timeframe after taking abs as well.

 

Here is a segment of the PANDAS FAQ page that explains the ideal timing to try to get the most accurate results...

 

 

http://www.latitudes.org/forums/index.php?showtopic=6266

 

Q:Should I check for clearing of my non-PANDAS children if treated for strep

A: Yes. About 3 weeks after completing treatment for strep you can check for clearance by getting a negative culture. The dosing levels on antibiotics are designed so that about 80% of children with normal immune systems are cleared with a "standard" dosing of antibiotics. Some strains of strep are harder to eradicate and either longer treatments or use of antibiotics like azithromycin and augmentin seem to be effective on these strains.

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hi my name is hannah. i am also new to this forum to this will be my first post. im sorry to here about your son. im am 19year old i was diagnosed with pandas when i was 11 years of age. my mum and dad first notice something wasnt right when i kept gettin tonsilitus then one day i was getting really bad stomache pains and lost the use in my legs. i was taken to so many different hospitals because doctors do not no that much about pandas it took them a while to find out i had it. then i was taken to great ormond street and a doctor was studing pandas a he took a simple blood test. then i was alowed to go home a week later. then got a letter ffom my gp saying i had pandas. i wasin a weel chair for 4 years i had pysio and speech thearpy to help me to walk and talk again. i am now healthy and a mum to my gorgeous little girl olivia. i advise you to have blood test done on your son. hope this helps! and i wish you all the luck in the world that you son make a speedy recovery im sure he will

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