lmh2402
12-07-2012, 01:12 PM
where to begin...
1. had our first parental follow-up with behavioral psychologist since having DS meet him, and having us fill out these psychological forms - DH and I filled out without sharing our answers with each other, and teacher filled one out independently as well. psychologist reviewed results and said all three of the forms came back suggesting DS was "off the charts" for anxiety and "depression" which at his age would more accurately be a measure of irritability. He was somewhat concerningly high for hyperactivity and low for attention. In an over simplified nutshell, doctor is saying that he would unofficially diagnose DS as having an anxiety disorder that is fueled by OCD and that he might have an ADHD diagnosis in his future.
he said our "tools" for managing this are: a) behavioral strategies, and b) medication.
we started talking behavioral strategies and things to begin implementing. in the meantime, he strongly suggested getting onto a wait list for a psychiatrist to start an eval with them since it will take awhile to get in, and the awhile to complete all the eval visits. doctor is concerned that at this stage, behavioral strategies alone might not be effective with DS, and that medication might be "needed/helpful" to take the edge off and make him more willing and able to function
2. so then i called psychiatrist who called me back last night and told me her shocking fees for the consult visits and then told me before we made an appt, that we should rule out PANS/PANDAS. she gave me the name of the guy we actually had already seen. in fact, we were scheduled to have a conf call to go over the bloodwork with him last night. she said great and to call her back on mon to discuss what, if anything, was found
which brings me to...
3. had our follow-up with the PANS guy. let me preface by saying that after my post here last week re: chicken soup, many of you suggested that maybe he had a sinus infection. well, last fri night he woke up crouping. again. so i said, "enough is enough" and i dragged him back into the pedi on sat morning. she said, "i bet he has a sinus infection." so she put him on a three week course of antibiotics, a brief course of oral steroids to get the cough under control, and added nasonex to his daily regimen of medication.
fine.
yesterday was day 6 of antibiotics. yesterday afternoon, once again...he took a turn in the wrong direction. around 3pm our sitter came to tell me he "looked off." i went downstairs and sure enough, his cheeks were bright, bright red. as was one ear - always it's just one ear that turns flaming red. the rest of his face was stark white. and his voice had gotten really hoarse and he was coughing a congested cough. and of course, our pedi is on vaca for two weeks.
so i went into our call with PANS doc last night hoping that maybe we would get some answers as to what the he** is going on with him.
long story short, his titers measured three different ways, were all negative. This means either he was not exposed to strep (not possible, he definitely had positive strep cultures in the past six months0 or is a "low strep responder." lyme, lyme-co infections, ets all negative.
his pneumococcal titers were low for 4/7 serotypes. This is low for a child who received the vaccine 3 years ago. This suggests he may be a "low strep responder" and that he has PANS with a "silent strep trigger"
overall, his immune system is also borderline low - his IgG and IgA are low, his IgM is normal.
what all this means...unfortunately, i have no idea
the doctor said, "the good news is, there is nothing apparently very seriously wrong. but his immune system is definitely not as strong as it should be. and we don't know exactly why. and there isn't much that can be done at this point."
well thank you. that's just wonderful.
in the meantime, DS up again coughing all night. and woke up this morning with pretty much no voice.
i'm beyond frustrated. and worried. and sad for DS. and mad at everyone that hasn't been able to help us.
something is not right. why can't he fight off whatever it is that is ailing him?!
i just sent the PANS guy a follow-up email basically saying that we need some guidance. that how we left things isn't good enough b/c something is wrong and i don't know who else to see/seek out.
anyway, that's where we stand
if anyone has any ideas, i would love to hear them.
in the meantime, my DS is like a little old man lining up all his medicine cups each morning and night, but with unfortunately little seeming benefit
1. had our first parental follow-up with behavioral psychologist since having DS meet him, and having us fill out these psychological forms - DH and I filled out without sharing our answers with each other, and teacher filled one out independently as well. psychologist reviewed results and said all three of the forms came back suggesting DS was "off the charts" for anxiety and "depression" which at his age would more accurately be a measure of irritability. He was somewhat concerningly high for hyperactivity and low for attention. In an over simplified nutshell, doctor is saying that he would unofficially diagnose DS as having an anxiety disorder that is fueled by OCD and that he might have an ADHD diagnosis in his future.
he said our "tools" for managing this are: a) behavioral strategies, and b) medication.
we started talking behavioral strategies and things to begin implementing. in the meantime, he strongly suggested getting onto a wait list for a psychiatrist to start an eval with them since it will take awhile to get in, and the awhile to complete all the eval visits. doctor is concerned that at this stage, behavioral strategies alone might not be effective with DS, and that medication might be "needed/helpful" to take the edge off and make him more willing and able to function
2. so then i called psychiatrist who called me back last night and told me her shocking fees for the consult visits and then told me before we made an appt, that we should rule out PANS/PANDAS. she gave me the name of the guy we actually had already seen. in fact, we were scheduled to have a conf call to go over the bloodwork with him last night. she said great and to call her back on mon to discuss what, if anything, was found
which brings me to...
3. had our follow-up with the PANS guy. let me preface by saying that after my post here last week re: chicken soup, many of you suggested that maybe he had a sinus infection. well, last fri night he woke up crouping. again. so i said, "enough is enough" and i dragged him back into the pedi on sat morning. she said, "i bet he has a sinus infection." so she put him on a three week course of antibiotics, a brief course of oral steroids to get the cough under control, and added nasonex to his daily regimen of medication.
fine.
yesterday was day 6 of antibiotics. yesterday afternoon, once again...he took a turn in the wrong direction. around 3pm our sitter came to tell me he "looked off." i went downstairs and sure enough, his cheeks were bright, bright red. as was one ear - always it's just one ear that turns flaming red. the rest of his face was stark white. and his voice had gotten really hoarse and he was coughing a congested cough. and of course, our pedi is on vaca for two weeks.
so i went into our call with PANS doc last night hoping that maybe we would get some answers as to what the he** is going on with him.
long story short, his titers measured three different ways, were all negative. This means either he was not exposed to strep (not possible, he definitely had positive strep cultures in the past six months0 or is a "low strep responder." lyme, lyme-co infections, ets all negative.
his pneumococcal titers were low for 4/7 serotypes. This is low for a child who received the vaccine 3 years ago. This suggests he may be a "low strep responder" and that he has PANS with a "silent strep trigger"
overall, his immune system is also borderline low - his IgG and IgA are low, his IgM is normal.
what all this means...unfortunately, i have no idea
the doctor said, "the good news is, there is nothing apparently very seriously wrong. but his immune system is definitely not as strong as it should be. and we don't know exactly why. and there isn't much that can be done at this point."
well thank you. that's just wonderful.
in the meantime, DS up again coughing all night. and woke up this morning with pretty much no voice.
i'm beyond frustrated. and worried. and sad for DS. and mad at everyone that hasn't been able to help us.
something is not right. why can't he fight off whatever it is that is ailing him?!
i just sent the PANS guy a follow-up email basically saying that we need some guidance. that how we left things isn't good enough b/c something is wrong and i don't know who else to see/seek out.
anyway, that's where we stand
if anyone has any ideas, i would love to hear them.
in the meantime, my DS is like a little old man lining up all his medicine cups each morning and night, but with unfortunately little seeming benefit