Please help! We are new to all of this!

[Dr_Rosario_Trifiletti]

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

 

Dear Ginger,

 

I'd be happy to speak to you and advise your pediatrician if you would like. No charge. Please feel free e-mail me at trifmd@gmail.com with contact info.

 

Dr. T

[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

 

Dear Ginger,

 

I'd be happy to speak to you and advise your pediatrician if you would like. No charge. Please feel free e-mail me at trifmd@gmail.com with contact info.

 

Dr. T

 

 

Dr. T,

 

Thank you so much! This means more then you could know. I have been reading how wonderful you are...think I know why. I will be e-mailing you soon.

 

Sincerely,

 

Ginger