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So to catch you up....I took my 7 yo ds to his first neuro appt last week and that went better than I though! My first time of saying "i think my son might have this". She said "when he has strep again, call me, and if he is having symptoms - I'll treat it".....seemed too easy.

 

Well, of course I KNEW something was brewing with him. Took him to the ENT today and sure enough - sinus infection. He immediately swabbed his nose to send it off (he always does this)....but then I had to broach the dreaded subject with the ENT (had no clue if he had even heard of it) - and naturally he had NOT. So....I described it to him, essentially sounding off my rocker...BUT (drumroll) he did not seem phased one bit. Said why would he think that was crazy - when look how many illnesses we know are caused by viruses and bacteria (even gave an example or two). He said we would talk more when the results came back and prescribed him antibiotics.

 

Something odd happened though....the pharmacy called me and said the strength was very unusual and were calling the doc. I didn't think at the time anything about it - just thought it was a boo boo. But, maybe he did it on purpose. I don't know...but when the pharmacy called him, he changed it. Omnicef. After the test comes back I'll contact the neuro and I expect she will change or up the dose significantly.

 

So....what have I not thought of? What am I forgetting? Could I REALLY have gotten this lucky and hit the jackpot with these docs? I'm afraid to ask in a way after reading such stories.... Thoughts?

 

GH

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That is great to actually have doctors not look at you like you have two heads, isn't it? And to treat you like you have valuable information that can help them do their jobs! Way to go, score one for our side! B)

 

 

So to catch you up....I took my 7 yo ds to his first neuro appt last week and that went better than I though! My first time of saying "i think my son might have this". She said "when he has strep again, call me, and if he is having symptoms - I'll treat it".....seemed too easy.

 

Well, of course I KNEW something was brewing with him. Took him to the ENT today and sure enough - sinus infection. He immediately swabbed his nose to send it off (he always does this)....but then I had to broach the dreaded subject with the ENT (had no clue if he had even heard of it) - and naturally he had NOT. So....I described it to him, essentially sounding off my rocker...BUT (drumroll) he did not seem phased one bit. Said why would he think that was crazy - when look how many illnesses we know are caused by viruses and bacteria (even gave an example or two). He said we would talk more when the results came back and prescribed him antibiotics.

 

Something odd happened though....the pharmacy called me and said the strength was very unusual and were calling the doc. I didn't think at the time anything about it - just thought it was a boo boo. But, maybe he did it on purpose. I don't know...but when the pharmacy called him, he changed it. Omnicef. After the test comes back I'll contact the neuro and I expect she will change or up the dose significantly.

 

So....what have I not thought of? What am I forgetting? Could I REALLY have gotten this lucky and hit the jackpot with these docs? I'm afraid to ask in a way after reading such stories.... Thoughts?

 

GH

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So to catch you up....I took my 7 yo ds to his first neuro appt last week and that went better than I though! My first time of saying "i think my son might have this". She said "when he has strep again, call me, and if he is having symptoms - I'll treat it".....seemed too easy.

 

Well, of course I KNEW something was brewing with him. Took him to the ENT today and sure enough - sinus infection. He immediately swabbed his nose to send it off (he always does this)....but then I had to broach the dreaded subject with the ENT (had no clue if he had even heard of it) - and naturally he had NOT. So....I described it to him, essentially sounding off my rocker...BUT (drumroll) he did not seem phased one bit. Said why would he think that was crazy - when look how many illnesses we know are caused by viruses and bacteria (even gave an example or two). He said we would talk more when the results came back and prescribed him antibiotics.

 

Something odd happened though....the pharmacy called me and said the strength was very unusual and were calling the doc. I didn't think at the time anything about it - just thought it was a boo boo. But, maybe he did it on purpose. I don't know...but when the pharmacy called him, he changed it. Omnicef. After the test comes back I'll contact the neuro and I expect she will change or up the dose significantly.

 

So....what have I not thought of? What am I forgetting? Could I REALLY have gotten this lucky and hit the jackpot with these docs? I'm afraid to ask in a way after reading such stories.... Thoughts?

 

GH

Some people might say you are lucky, but I'd say your are BLESSED! So cool that you are able to document the infection, so cool that the ENT prescribed for you! It would probably be a good idea to journal symptoms and how they get worse w/infection, better w/abxs (hopefully?).

And hey, you can't be in this forum until you've gotten the "oh you poor crazy thing" look about a dozen times! Just kidding! So happy for you.

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Wow! That is great news! I have an ENT that is very supportive too, and it has made a world of difference. Just remember, though, that the nasal swab does not have to come back positive for strep for this to be a PANDAS/PITANDS situation. Children with PANDAS often go on to develop symptoms with ANY infection - not just strep... so any sinus infection can set off PANDAS. If your son can take ibuprofen, it might be good to keep him on it while he is recovering from the sinus infection. It will help to reduce inflammation and may decrease the length and severity of any exacerbation.

 

All the best to you!

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Congrats on having supportive doctors!! We have a great team in place with our pediatrician, neurologist and Dr. Muprhy that we've been blessed with. I've always felt silly coming on here talking about our wonderful doctors and our "easy" path through the dx when so many others struggled for so long.

 

But then I remember, if it wasn't for all of their struggle and fighting, we wouldn't have more and more doctors every day willing to treat and dx PANDAS. Those same tenacious parents have also helped us be equipt with the information and skills we ned to be prepared if we do hit any skeptical doctors.

 

So to all the moms out there who paved the way for these victories (however small!) - THANK YOU!!! :wub::wub:

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I absolutely agree! THANKS to our PANDAS "pioneers"!

 

Only one of the 3 dr.'s I have been to (neuro, internist/pedia/double certified, ENT) had even heard of it - the neuro. Hrmmmph!

 

You know...as I typed "lucky"....I, too, thought what a blessing it really is. I have a lot of battles right now before me on a lot of levels and I'm not sure I would have the strength to battle this one head on w/o this support and faith on my side.

 

Another question for you all: If/when you are trying to inform/educate a physician about PANDAS....is there one single "go to" piece of info you share with them? You know, if you took just ONE print out or document or journal - what would it be? I am going to email my 7 yo ds's ENT some ifno about it since he was so receptive (or do you think that it might be pushing it since he is already receptive to the idea)....and wanted to share some valuable info. My first thoughts - a link to the NIMH website's latest info on PANDAS.

 

;)

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