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so don't want to throw thoughts in you don't want, faith - but i feel you are open to all thoughts and then sort through them and do with what you will. . .

 

when i see things you write, i do just think about our experience -- that we had such a horrible experience with azith, where most see good results. our ped at the time was willing to write it off as 'strep over, case closed' and send us on our merry way for years of behavioral treatments. we switched peds, luckily to one who listens, who believed he had a sinus infection, which was confirmed on CT as all six cavities infected and saw 100% improvement on keflex. i'm not trying to convince you of anything - i just really believe that some kids have different reactions to different abx.

 

Just curious how you knew it was sinus infection. Was it obvious or something that was coming and going? keflex is a cephalasporin correct? How long did he take it?

 

The reason I ask is that since my son Myles was a toddler, he has bags under his eyes a lot. Not all the time though. I read in Dr. Bock's book that the horizontal lines under the eyes are a good indication of allergies or nasal congestion, swelling, and increased blood flow to the ethmoid sinuses. did you see that with your son? For mine it is there more often than not, and when he doesn't have them it is a pretty big change in the way his face looks. He's taking omnicef right now for an ear infection. If it is a sinus infection, it will be interesting to see if the lines disappear for awhile. I've been thinking I need to have him tested for allergies as well.

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I am certainly not a doctor, but will just say a few things based on my experience:

 

antibiotics are needed (full strength at least initially, to rid the infection)

 

antibiotics are helpful to prevent future illness (though certainly not 100%)

 

there is also thought to be an immune modulating effect of antibiotics

 

BUT:

 

antibiotics are not always enough to calm the autoimmune aspect, and quell the brain inflammation

 

this is why we are all here- really. If antibiotics did the trick, it would be oh so easy.

 

For my dd,6, antibiotics worked on her first episode! They were not enough to calm her relapses.

For dd, 9, who has had this longer- the antibiotics calmed things, maybe, but not enough.

 

You certainly could try a different antibiotic, or two antibiotics at a time. You certainly should look for infection if that is what you feel. However, I will tell you, my daughter looked fairly healthy when she had the flu. The day after she recovered, at the start of a pandas relapse- she looked HORRIBLE; pale, dark circles, in a daze. She started steroids after a couple of days of this, and within a couple of doses- she looked healthy again

 

I believe pandas episodes, alone, can make your child appear ill.

 

The next step is steroids. Then IVIG or PEX. The cunningham test is a really good idea!

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I am certainly not a doctor, but will just say a few things based on my experience:

 

antibiotics are needed (full strength at least initially, to rid the infection)

 

antibiotics are helpful to prevent future illness (though certainly not 100%)

 

there is also thought to be an immune modulating effect of antibiotics

 

BUT:

 

antibiotics are not always enough to calm the autoimmune aspect, and quell the brain inflammation

 

this is why we are all here- really. If antibiotics did the trick, it would be oh so easy.

 

For my dd,6, antibiotics worked on her first episode! They were not enough to calm her relapses.

For dd, 9, who has had this longer- the antibiotics calmed things, maybe, but not enough.

 

You certainly could try a different antibiotic, or two antibiotics at a time. You certainly should look for infection if that is what you feel. However, I will tell you, my daughter looked fairly healthy when she had the flu. The day after she recovered, at the start of a pandas relapse- she looked HORRIBLE; pale, dark circles, in a daze. She started steroids after a couple of days of this, and within a couple of doses- she looked healthy again

 

I believe pandas episodes, alone, can make your child appear ill.

 

The next step is steroids. Then IVIG or PEX. The cunningham test is a really good idea!

 

I agree 100%. PANDAS is an immune system that has gone wrong, and antibiotics will only get you so far...next step is to try to address brain inflammation and calm/supress/reboot the immune system---thus the need for additional treatments. Regardless...it will still take time for the brain to heal, and it may do so with just antibiotics, but I think the other treatments will speed the recovery process.

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I am certainly not a doctor, but will just say a few things based on my experience:

 

antibiotics are needed (full strength at least initially, to rid the infection)

 

antibiotics are helpful to prevent future illness (though certainly not 100%)

 

there is also thought to be an immune modulating effect of antibiotics

 

BUT:

 

antibiotics are not always enough to calm the autoimmune aspect, and quell the brain inflammation

 

this is why we are all here- really. If antibiotics did the trick, it would be oh so easy.

 

For my dd,6, antibiotics worked on her first episode! They were not enough to calm her relapses.

For dd, 9, who has had this longer- the antibiotics calmed things, maybe, but not enough.

 

You certainly could try a different antibiotic, or two antibiotics at a time. You certainly should look for infection if that is what you feel. However, I will tell you, my daughter looked fairly healthy when she had the flu. The day after she recovered, at the start of a pandas relapse- she looked HORRIBLE; pale, dark circles, in a daze. She started steroids after a couple of days of this, and within a couple of doses- she looked healthy again

 

I believe pandas episodes, alone, can make your child appear ill.

 

The next step is steroids. Then IVIG or PEX. The cunningham test is a really good idea!

 

I agree 100%. PANDAS is an immune system that has gone wrong, and antibiotics will only get you so far...next step is to try to address brain inflammation and calm/supress/reboot the immune system---thus the need for additional treatments. Regardless...it will still take time for the brain to heal, and it may do so with just antibiotics, but I think the other treatments will speed the recovery process.

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I had that same experience, only it was azith. I can't say there was any remarkable improvment on the first round, but during a two day break, I felt he was almost doing better with no abx those days, and then the next pill started a huge increase in vocal, it was off the wall increased......can't say I know what that was about, but I opted not to continue, and it did calm down the next day.

 

-Faith

 

so don't want to throw thoughts in you don't want, faith - but i feel you are open to all thoughts and then sort through them and do with what you will. . .

 

when i see things you write, i do just think about our experience -- that we had such a horrible experience with azith, where most see good results. our ped at the time was willing to write it off as 'strep over, case closed' and send us on our merry way for years of behavioral treatments. we switched peds, luckily to one who listens, who believed he had a sinus infection, which was confirmed on CT as all six cavities infected and saw 100% improvement on keflex. i'm not trying to convince you of anything - i just really believe that some kids have different reactions to different abx.

 

thanks, I do understand, we've talked on this before. right now we did do a course of amoxicillian for post op on the T&A (I know not the best, but that's what the ENT gave us, and I had him off abx prior to this because of the azith experience). I do want to try out another type abx, such as the keflex. I don't see any indication of any sinus trouble here,..was this something out of the blue for you, or there was sinus problems. I forget, did you say that you saw some improvement within a few days? are you doing keflex still?

 

only thing I can say about abx, is that somehow, the sound seems to change somewhat, but still totally there.

don't know if that means anything or is coincidence.

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I am certainly not a doctor, but will just say a few things based on my experience:

 

antibiotics are needed (full strength at least initially, to rid the infection)

 

antibiotics are helpful to prevent future illness (though certainly not 100%)

 

there is also thought to be an immune modulating effect of antibiotics

 

BUT:

 

antibiotics are not always enough to calm the autoimmune aspect, and quell the brain inflammation

 

this is why we are all here- really. If antibiotics did the trick, it would be oh so easy.

 

For my dd,6, antibiotics worked on her first episode! They were not enough to calm her relapses.

For dd, 9, who has had this longer- the antibiotics calmed things, maybe, but not enough.

 

You certainly could try a different antibiotic, or two antibiotics at a time. You certainly should look for infection if that is what you feel. However, I will tell you, my daughter looked fairly healthy when she had the flu. The day after she recovered, at the start of a pandas relapse- she looked HORRIBLE; pale, dark circles, in a daze. She started steroids after a couple of days of this, and within a couple of doses- she looked healthy again

 

I believe pandas episodes, alone, can make your child appear ill.

 

The next step is steroids. Then IVIG or PEX. The cunningham test is a really good idea!

 

I agree 100%. PANDAS is an immune system that has gone wrong, and antibiotics will only get you so far...next step is to try to address brain inflammation and calm/supress/reboot the immune system---thus the need for additional treatments. Regardless...it will still take time for the brain to heal, and it may do so with just antibiotics, but I think the other treatments will speed the recovery process.

 

totally understood and agree. its just that for me, (and I could be wrong) I think I would feel more confident and sure if I could at least know there was evidence of strep or infection to be dealt with. I realize that some say it doesn't matter, for the strep could have been a while back, and I do have that in the history, but if that was three years ago, and there hasn't been strep since, shouldn't my son's symptoms be at least on the way down by now? maybe the damage has been done all these years, but if we look at it as an antibody response, then where is it coming from, and why isn't the abx backing them down. don't know if I'm making sense. I understand, I may have to go to the next level of treatment, but again, I'd feel so much better if I knew there was something concrete to base it on.

 

I have some other info re my son's tonsilectomy, and I'll update that on another thread, sorry, don't mean to hijack this thread, but it looked like simplygina and me had a similar experience.

 

Faith

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faith-

 

You may never find the strep link- which stinks.

 

Have you done the Cunningham test? I think that would be really helpful for you to see what is going on. It is not an absolute- but it is helpful to see...

 

If pandas is an autoimmune issue- so many things can be triggers, I guess depending on how sensitive the child is.

 

Do your kids have tics or ocd- or both? If ocd- I wouldn't think twice- I would do the steroid burst. It is so helpful to see the improvement it may bring. If there are tics involved, the cunningham test may ease your mind (if positive for pandas) about trying the burst.

 

Wish I could help you. Pandas is so frustrating! I am the type of person that wants anwers, and absolutes (esp where my kids are concerned). I can only say, that, in our case, in my gut- I feel like we have eradicated infection (of course I have tons of moments of doubts). I think this is as simple as an autoimmune disorder has been turned on in my kids (which sucks). They create these autoantibodies, and I guess like other autoimmune issues (which I think I should start studying) there are many known triggers, and probably lots of unknown triggers. My kids suffering did not stop on antibiotics alone.

 

I hope this doesn't seem depressing (I am in a bit of a bad spot right now), because I am hopeful that this disorder can be successfully managed. Unfortunately health insurance, financial issues, and some doctors stand in our way.

 

You will find the correct path for your kids....

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faith-

 

You may never find the strep link- which stinks.

 

Have you done the Cunningham test? I think that would be really helpful for you to see what is going on. It is not an absolute- but it is helpful to see...

 

If pandas is an autoimmune issue- so many things can be triggers, I guess depending on how sensitive the child is.

 

Do your kids have tics or ocd- or both? If ocd- I wouldn't think twice- I would do the steroid burst. It is so helpful to see the improvement it may bring. If there are tics involved, the cunningham test may ease your mind (if positive for pandas) about trying the burst.

 

Wish I could help you. Pandas is so frustrating! I am the type of person that wants anwers, and absolutes (esp where my kids are concerned). I can only say, that, in our case, in my gut- I feel like we have eradicated infection (of course I have tons of moments of doubts). I think this is as simple as an autoimmune disorder has been turned on in my kids (which sucks). They create these autoantibodies, and I guess like other autoimmune issues (which I think I should start studying) there are many known triggers, and probably lots of unknown triggers. My kids suffering did not stop on antibiotics alone.

 

I hope this doesn't seem depressing (I am in a bit of a bad spot right now), because I am hopeful that this disorder can be successfully managed. Unfortunately health insurance, financial issues, and some doctors stand in our way.

 

You will find the correct path for your kids....

 

 

He is predominantly tics, mainly vocal the past few years, but tics since about 3 or 4 years old. ocd in the way of erasing and retracing letters came on about two years ago. we're working on that with ERP right now.

 

Cunningham test was 179. To remind, I was afraid to do the 30 day steroids from Dr. L. and so opted not to up til now. ... I'm not convinced all this does not have autoimmune components either. So even if the infection is gone, there is still an autoimmune reaction?

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Faith- What are the negatives to the steroids? Is it that if it's TS the steroids could make things worse? or are you concerned about other things with it?

 

 

..

 

 

He is predominantly tics, mainly vocal the past few years, but tics since about 3 or 4 years old. ocd in the way of erasing and retracing letters came on about two years ago. we're working on that with ERP right now.

 

Cunningham test was 179. To remind, I was afraid to do the 30 day steroids from Dr. L. and so opted not to up til now. ... I'm not convinced all this does not have autoimmune components either. So even if the infection is gone, there is still an autoimmune reaction?

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I don't really know for sure. my fear was that it would spike tics and make him worse. I have no proof that's what would happen, but there were a few reports of that, so it was enough to make me think twice. also, I don't see it as a permanent fix, just temporary, so for now, I'm waiting. I believe that Diana P. has said somewhere back a ways (don't shoot me, I read that in a post of hers) that a steroid burst is really somewhat an act of compassion (I suppose for those in a crisis mode) and can be used to buy time. I didn't think my son was that bad, but I can certainly see where those that are really affected can benefit.

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Thanks, that makes sense.

 

 

I don't really know for sure. my fear was that it would spike tics and make him worse. I have no proof that's what would happen, but there were a few reports of that, so it was enough to make me think twice. also, I don't see it as a permanent fix, just temporary, so for now, I'm waiting. I believe that Diana P. has said somewhere back a ways (don't shoot me, I read that in a post of hers) that a steroid burst is really somewhat an act of compassion (I suppose for those in a crisis mode) and can be used to buy time. I didn't think my son was that bad, but I can certainly see where those that are really affected can benefit.
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faith-

 

You may never find the strep link- which stinks.

 

Have you done the Cunningham test? I think that would be really helpful for you to see what is going on. It is not an absolute- but it is helpful to see...

 

If pandas is an autoimmune issue- so many things can be triggers, I guess depending on how sensitive the child is.

 

Do your kids have tics or ocd- or both? If ocd- I wouldn't think twice- I would do the steroid burst. It is so helpful to see the improvement it may bring. If there are tics involved, the cunningham test may ease your mind (if positive for pandas) about trying the burst.

 

Wish I could help you. Pandas is so frustrating! I am the type of person that wants anwers, and absolutes (esp where my kids are concerned). I can only say, that, in our case, in my gut- I feel like we have eradicated infection (of course I have tons of moments of doubts). I think this is as simple as an autoimmune disorder has been turned on in my kids (which sucks). They create these autoantibodies, and I guess like other autoimmune issues (which I think I should start studying) there are many known triggers, and probably lots of unknown triggers. My kids suffering did not stop on antibiotics alone.

 

I hope this doesn't seem depressing (I am in a bit of a bad spot right now), because I am hopeful that this disorder can be successfully managed. Unfortunately health insurance, financial issues, and some doctors stand in our way.

 

You will find the correct path for your kids....

 

 

He is predominantly tics, mainly vocal the past few years, but tics since about 3 or 4 years old. ocd in the way of erasing and retracing letters came on about two years ago. we're working on that with ERP right now.

 

Cunningham test was 179. To remind, I was afraid to do the 30 day steroids from Dr. L. and so opted not to up til now. ... I'm not convinced all this does not have autoimmune components either. So even if the infection is gone, there is still an autoimmune reaction?

 

Faith,

I totally understand your reluctance to try the steroids. I think if I was in your shoes right now, (please don't take this as me telling what you should do...just trying to steer your line of thinking a little...) I would be trying my best to really understand what that 179 result from the Cunningham test means. Does this number really distinguish between other types of TS and PANDAS? I truthfully couldn't tell you, but maybe an email to Dr. Cunningham is in order, and spending time trying to disect her JNI paper. It may make you more comfortable with the treatment options for PANDAS. Also, I think that if you do come to believe that your son has PANDAS, then perhaps skipping the steroids and going right for IVIG may be an option.

 

While she was not in an PANDAS exercerbation, my daughter's score was 112--overlapping with normal--But I have no doubt that she has PANDAS because her's is a classic, clear-cut case. I think this test should be used in conjunction with clinical diagnosis.

 

~Karen

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tmom - do you believe the issue is inflammation in the tissues of the basal ganglia - in effect the swollen brain tissues?

 

 

If someone knew for sure we might all be on some other forum chatting:)

 

Today Diane Rehm on NPR interviewed a woman who has written a book on the victims of the "sleeping sickness" of the last century--(Remember the movie "Awakenings", about Oliver Sacks and his patients who "woke up"?)

 

Guess what: Those with this illness were reported to have had "flu" symptoms and sore throats...then the encephalitis hit.

It is believed they may have had STREP infections which triggered the encephalitis.

 

Fascinating interview. Basically inflammation -- brain encephalitis.

 

The author is a historian and she presented case studies...

She understands PANDAS and responded to a caller about this illness as well--

 

The author said that in pediatric cases historically the children with the "sleeping sickness" presented with OCD !

Encephalitis = inflammation = OCD ...in this case tied to "the sleeping sickness", they say those affected were still fully cognizant of all that went on around them.

 

I could not help wondering about my d and Sammy -- both of whom held their eyes shut for extended periods of time--

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tmom - do you believe the issue is inflammation in the tissues of the basal ganglia - in effect the swollen brain tissues?

 

 

If someone knew for sure we might all be on some other forum chatting:)

 

Today Diane Rehm on NPR interviewed a woman who has written a book on the victims of the "sleeping sickness" of the last century--(Remember the movie "Awakenings", about Oliver Sacks and his patients who "woke up"?)

 

Guess what: Those with this illness were reported to have had "flu" symptoms and sore throats...then the encephalitis hit.

It is believed they may have had STREP infections which triggered the encephalitis.

 

Fascinating interview. Basically inflammation -- brain encephalitis.

 

The author is a historian and she presented case studies...

She understands PANDAS and responded to a caller about this illness as well--

 

The author said that in pediatric cases historically the children with the "sleeping sickness" presented with OCD !

Encephalitis = inflammation = OCD ...in this case tied to "the sleeping sickness", they say those affected were still fully cognizant of all that went on around them.

 

I could not help wondering about my d and Sammy -- both of whom held their eyes shut for extended periods of time--

I looked up the diagnosis code from the neurologist's bill for my PANDAS ds...

Diagnosis Code 323.62 = Other postinfectious encephalitis and encephalomyelitis

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