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Feeling HOPEFUL AGAIN


mrigsby

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This story is kind of weird so bare with me. Today we finally had our appointment in Ashland KY with who I previously thought was an infectious disease specialist. That is, the ENT told us he was referring us to an infectious disease specialist so that they could get into deeper test with blood work and maybe figure out if there is something that is causing the strep to hang on. However, when we arrived at our destination, it was an asthma and allergy center. We were sent to an asthma and allergy immunologist. At this point I was totally confused because the paper work that I was given to feel out was all about what symptoms of asthma and allergies he is having right now. (WHICH HE HAS NONE) I explained to them that I was told we were coming to see an infectious disease doctor about recurring strep. I was so disappointed because I had set up until 2a.m. last night preparing to give it both barrels if need be to get my son the testing he needed so that he could have the antibiotics he needs. Also, we drove 2 hours on ice roads this morning to get to that doctors appointment. Anyways, they contacted ENT and asked what he was referred for and he told them something to do with checking for nose allergies. By this time, I was ready to cry. Then I made up my mind I was going to give my PANDAS speach anyways. Suprisingly, this doctor listened to me! Then he told me to excuse him for a few minutes. After about 15 minutes he came back to the room. He had went in his office and looked up PANDAS on the internet to breif himself. (HOW cool is that?) Anyways, he says after checking it over, you do realize that PANDAS is still a controversial diagnosis right now. I said yes, I do realize. I also realize that a child cannot possibly have all the diagnosis's that mine has been given in the last 6 years and I also know that you don't grow out of Tourette's and my son had it severely for almost 3 years and 9 months ago it just stopped all together and was replaced by other things. He said I see where you are coming from but I can tell you that this is not my expertise and you may be better suited for an infectious disease specialist or a pediatric neurologist to evaluate your son. He said he would be glad to do a immune work up on him for me. I asked him, if this was your child who would you take him too. He said he would take him to anyone that would see him if it was him until he got the answers he needed. I told him that I had seen with my own eyes that Harleys symptoms improve on antibiotics and all I want is for someone to put him on Azythremicon(not sure of spelling) long term so that he has a fighting chance with this illness. AND here's the kicker. HE said, well I can do that, I do it for a lot of my patients that have chronic infections. I thought I would bust into crying right there. I said thats all I've been trying to get. So, he ends up writing us a 4 month prescription and sending Harley for blood workup. They took 10 vials of blood. We go back on March 9th to find out blood test results. And I am so Happy tonight that I can't even begin to explain how I feel. Now its time to hope and pray that this makes a difference in my sons life, which I truely believe it will. And to think, after all the doctors we have been too, today we go to a wrong one and he is the very one who gives us what we need. God works in mysterious ways. The wrong one turned out to be the only one that mattered!!!

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This story is kind of weird so bare with me. Today we finally had our appointment in Ashland KY with who I previously thought was an infectious disease specialist. That is, the ENT told us he was referring us to an infectious disease specialist so that they could get into deeper test with blood work and maybe figure out if there is something that is causing the strep to hang on. However, when we arrived at our destination, it was an asthma and allergy center. We were sent to an asthma and allergy immunologist. At this point I was totally confused because the paper work that I was given to feel out was all about what symptoms of asthma and allergies he is having right now. (WHICH HE HAS NONE) I explained to them that I was told we were coming to see an infectious disease doctor about recurring strep. I was so disappointed because I had set up until 2a.m. last night preparing to give it both barrels if need be to get my son the testing he needed so that he could have the antibiotics he needs. Also, we drove 2 hours on ice roads this morning to get to that doctors appointment. Anyways, they contacted ENT and asked what he was referred for and he told them something to do with checking for nose allergies. By this time, I was ready to cry. Then I made up my mind I was going to give my PANDAS speach anyways. Suprisingly, this doctor listened to me! Then he told me to excuse him for a few minutes. After about 15 minutes he came back to the room. He had went in his office and looked up PANDAS on the internet to breif himself. (HOW cool is that?) Anyways, he says after checking it over, you do realize that PANDAS is still a controversial diagnosis right now. I said yes, I do realize. I also realize that a child cannot possibly have all the diagnosis's that mine has been given in the last 6 years and I also know that you don't grow out of Tourette's and my son had it severely for almost 3 years and 9 months ago it just stopped all together and was replaced by other things. He said I see where you are coming from but I can tell you that this is not my expertise and you may be better suited for an infectious disease specialist or a pediatric neurologist to evaluate your son. He said he would be glad to do a immune work up on him for me. I asked him, if this was your child who would you take him too. He said he would take him to anyone that would see him if it was him until he got the answers he needed. I told him that I had seen with my own eyes that Harleys symptoms improve on antibiotics and all I want is for someone to put him on Azythremicon(not sure of spelling) long term so that he has a fighting chance with this illness. AND here's the kicker. HE said, well I can do that, I do it for a lot of my patients that have chronic infections. I thought I would bust into crying right there. I said thats all I've been trying to get. So, he ends up writing us a 4 month prescription and sending Harley for blood workup. They took 10 vials of blood. We go back on March 9th to find out blood test results. And I am so Happy tonight that I can't even begin to explain how I feel. Now its time to hope and pray that this makes a difference in my sons life, which I truely believe it will. And to think, after all the doctors we have been too, today we go to a wrong one and he is the very one who gives us what we need. God works in mysterious ways. The wrong one turned out to be the only one that mattered!!!

 

Doesn't it feel wonderful when you take a big step forward? Great job, Mom, way to hang in there!

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And I am so Happy tonight that I can't even begin to explain how I feel.

 

I know exactly how you feel! SCORE! You found a doctor who doesn't think you're crazy and is trying to help. How amazing is that? (and it shouldn't be :angry: )

I agree, God does work in mysterious ways- if you let him.

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This story is kind of weird so bare with me. Today we finally had our appointment in Ashland KY with who I previously thought was an infectious disease specialist. That is, the ENT told us he was referring us to an infectious disease specialist so that they could get into deeper test with blood work and maybe figure out if there is something that is causing the strep to hang on. However, when we arrived at our destination, it was an asthma and allergy center. We were sent to an asthma and allergy immunologist. At this point I was totally confused because the paper work that I was given to feel out was all about what symptoms of asthma and allergies he is having right now. (WHICH HE HAS NONE) I explained to them that I was told we were coming to see an infectious disease doctor about recurring strep. I was so disappointed because I had set up until 2a.m. last night preparing to give it both barrels if need be to get my son the testing he needed so that he could have the antibiotics he needs. Also, we drove 2 hours on ice roads this morning to get to that doctors appointment. Anyways, they contacted ENT and asked what he was referred for and he told them something to do with checking for nose allergies. By this time, I was ready to cry. Then I made up my mind I was going to give my PANDAS speach anyways. Suprisingly, this doctor listened to me! Then he told me to excuse him for a few minutes. After about 15 minutes he came back to the room. He had went in his office and looked up PANDAS on the internet to breif himself. (HOW cool is that?) Anyways, he says after checking it over, you do realize that PANDAS is still a controversial diagnosis right now. I said yes, I do realize. I also realize that a child cannot possibly have all the diagnosis's that mine has been given in the last 6 years and I also know that you don't grow out of Tourette's and my son had it severely for almost 3 years and 9 months ago it just stopped all together and was replaced by other things. He said I see where you are coming from but I can tell you that this is not my expertise and you may be better suited for an infectious disease specialist or a pediatric neurologist to evaluate your son. He said he would be glad to do a immune work up on him for me. I asked him, if this was your child who would you take him too. He said he would take him to anyone that would see him if it was him until he got the answers he needed. I told him that I had seen with my own eyes that Harleys symptoms improve on antibiotics and all I want is for someone to put him on Azythremicon(not sure of spelling) long term so that he has a fighting chance with this illness. AND here's the kicker. HE said, well I can do that, I do it for a lot of my patients that have chronic infections. I thought I would bust into crying right there. I said thats all I've been trying to get. So, he ends up writing us a 4 month prescription and sending Harley for blood workup. They took 10 vials of blood. We go back on March 9th to find out blood test results. And I am so Happy tonight that I can't even begin to explain how I feel. Now its time to hope and pray that this makes a difference in my sons life, which I truely believe it will. And to think, after all the doctors we have been too, today we go to a wrong one and he is the very one who gives us what we need. God works in mysterious ways. The wrong one turned out to be the only one that mattered!!!

I can feel your happiness and hopefulness jumping off the screen! I'm so happy for you. Good luck, and I hope it all works for your son.

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So happy for you! Isn't it amazing how God puts people in our path at just the right time and in just the right way. All it takes is for one person with compassion to hear your story. I just experienced this when I sent 4 page letters to our pediatrician and ENT regarding PANDAS. The letter made all the difference and our ENT is on now board. When there was a strep out break at our 9 year old's school, he agreed to put her on Augmentin for 10 days and then ordered a refill of an additional 10 days when the outbreak continued. He even put one additional refill on the prescription so that I can use it at the next outbreak. Keep fighting, mom! You're doing a great job!

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That is such great news and yes God does put people in our paths at just the right time. I withdrew my son from school on a Friday. That Monday a good friend was telling me about Beth Maloney and Sammy on the Today Show. I felt like she was talking about my son an me. I took him right in and sure enough he had an ASO of 1014. I had gotten the Poo Poo on PANDAS for the previous 6 years, but now we are finally on the right track.

 

So happy for you! Isn't it amazing how God puts people in our path at just the right time and in just the right way. All it takes is for one person with compassion to hear your story. I just experienced this when I sent 4 page letters to our pediatrician and ENT regarding PANDAS. The letter made all the difference and our ENT is on now board. When there was a strep out break at our 9 year old's school, he agreed to put her on Augmentin for 10 days and then ordered a refill of an additional 10 days when the outbreak continued. He even put one additional refill on the prescription so that I can use it at the next outbreak. Keep fighting, mom! You're doing a great job!
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