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Test Results. I am so confused!


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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

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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.

 

 

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

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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

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Sorry you are going through it too! I am not sure how I feel about IVIG. The immuno talked about it at the kids' last visit (when he prescribed the tests), even before we got the results. Primary immune deficiency is most of his practice so perhaps he anticipated the results. At the time I didn't think about it too much because somehow I still thought the tests would come out normal, and when I did think about it, it was about how we would pay for it if we chose to go that way given that I assumed their tests would be normal or at least marginal. (I know this doesn't make sense given that we were there in the first place, denial I guess...) We haven't seen the immuno yet since getting the results, but now I'm pretty sure he'll want to pursue it and they do meet criteria for our insurance to pay for it.

 

On the one hand, it seems like it's the holy grail of PANDAS and that I should be glad that we'll get it paid for...and I should be glad that it should help... but it always seemed like a distant "there if we need it" thing for far in the future, especially given that my little guy is only 3 and has only had 2-3 episodes of minor PANDAS symptoms in his whole life. I'm still making the adjustment to thinking of them as moderate (I guess?) immune deficiency rather than minor PANDAS. Now that it's looking like IVIG probably is in the future, I'm thinking about the actual process of going to the hospital, getting the IV put in, having side effects, risks, etc. and how to explain it to the kids when from their points of view they just have stuffy noses, uncomfortable socks, and occasional pissy moods. They don't currently have symptoms that make them feel "different" from others. I also worry about the fact that some kids have worse PANDAS after IVIG, since my kids are not badly off from that perspective right now, so we have a lot to lose. It would be a no-brainer if they were not functioning to begin with and we HAD to try something, but the truth is that they are functioning fine (albeit constantly on and off of antibiotics) and though it would be a dream come true to see them completely free of symptoms without antibiotics, I am also scared of losing what they've got. I have seen ds6 in a bad way in the past (1.5 years ago), and I do NOT want to go back there. They are happy boys with good lives right now, fussy days and stuffy noses notwithstanding.

 

My husband and mother have said the same thing your doctor said: why are you bothered, this is great, this makes it easy? I don't know - maybe I need to make that adjustment but my feelings aren't that simple at the moment.

 

 

 

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

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