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3 weeks post TA..and i have questions to discuss


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Ds had his tonsils out 3 weeks ago…yesterday

Heading in we had lost about 60% of our gains from the taper(we were teedering at 90%improved for a while)…so he was onnly holding to 30% improvement from the taper going into surgery

 

He had the screeches going in which I was afraid for him..but you don’t know how long you woiuld have to wait uniti they left..and I din’t want to wait…as I am very close to doing a big gun..and wanted them out….

He was a champ as usual with the procedure…the next day we had a ramp in all activity…I felt bad but wasn’t surprised as his throat was worked on……the mucus that was coming out the next 2 weeks was crazy…he went through 2 boxes of tissues a day..

 

2 days post, everything just kinda fell away….not completely but a good 50% of what he had

We continued over the next week with some ups and downs…my expetations of course are to see everything go away any minute…then we dropped the clinada to 2x a day…things seemed to get a little worse..on 3rd day. I upped to 3x things got better..then last 2 days back to 2x and again decline….

The screech is gone as of 3 day post ta…so it’s that or the clinda which would attack clostridia(which would be the 4 time..that I believe I can correlate the screech to clostrid)(vanco worked past 3 times)

If he does screech it’s once a day…his motors are 95-98% gone..subclinical..and sometimes I wonder if it is just some other kid action…not a tic at all

 

However his vocal,s though not screeches, are pretty constant….some rasberried, a lot of kissy, suck fish sound….and clearing, cough…I do hear a little snot-so that can be triggering the cough, clear…..but the sucking sound?

So overall I would say we are back to 80% improved…I guess….if vocals go…that 2%remaining, I would let go to see what happens

…and maybe I can say 80% because those sounds aren’t too loud, but I am concerned on the consistency of them!!!!!

oh,,,also the last 3-4 days...his mood has been really good...not that it was bad....just that it's better...so i don't know if that is something..maybe becasue he is off abx, the tonsils being out,,,,maybe this is who he really is...not just a great kid, but a super great kid...or just a fluke...as we all fluctuate in temperment!!!!

 

We have been off abx since tuesay 10/5/10…..Friday 10/8/10 was the 3 week mark for the TA…in past it would take a full month maybe 5 weeks to completely clear all tics…..so maybe I need to be more patient….

 

On wed 10/6/10 we starte ole…we have been adding a pill every time and are up to 1000mg 3x a day as of today……maybe this will hold or maybe get some secret parasite we don’t know about….

Ds weighs about 80lbs and here is current med list

 

 

Am.

25mcg levoxly

1000mg c buffered

2 ole 500mg each standardized to 20%

100mg isoquercitin

500mg turmeric standardized to 95% curcuminoids…just add this this moring(I was just giving it the last nights)

 

2 hours later only on weekends…3 tabls..bentonit

 

2pm ish – 2 ole at 500mg

 

6pmish -1 culturelle =10 bil

1 lactobucillus planetarium=10 bil(was doing double this when on pharm abx)

 

 

Bedtime

1 tumeric

2 ole

 

I am going to hold this pattern for the weekend….then?????????

 

On Monday I was going to call our dan to see if maybe a short burst or taper might knock this out..

Ds had a 5 day burst the last 3days of feb 2days of march..at 40mg

He had a 28day taper ending july 28th 40mg30mg20mg10mg

 

 

Here are my questions I like to discuss

he will 10 years 8 monthsat end of oct…..i don’t want to miss the window of healing

onset for this particular ongoing episode will be 2 years april 2011…so about 1 ½ yrs currently

 

1) …..is it too soon to do a taper of some sort…like 10 days.

It will be about 2 months and 2weeks from last one if we do so……

 

2) should I wait another 2 weeks before trying taper to see if ta gives us more benefits…

 

3) should I go back on clindamycin?...i don’t want to build resistance or allergy ….starting to get concerned with the abx’s

 

4) any suggestions on ds’ supplements

 

5) should I just go get pex done…

 

6) Are vocals the hardest to get rid of, of all the tics?

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Ds had his tonsils out 3 weeks ago…yesterday

Heading in we had lost about 60% of our gains from the taper(we were teedering at 90%improved for a while)…so he was onnly holding to 30% improvement from the taper going into surgery

 

He had the screeches going in which I was afraid for him..but you don’t know how long you woiuld have to wait uniti they left..and I din’t want to wait…as I am very close to doing a big gun..and wanted them out….

He was a champ as usual with the procedure…the next day we had a ramp in all activity…I felt bad but wasn’t surprised as his throat was worked on……the mucus that was coming out the next 2 weeks was crazy…he went through 2 boxes of tissues a day..

 

2 days post, everything just kinda fell away….not completely but a good 50% of what he had

We continued over the next week with some ups and downs…my expetations of course are to see everything go away any minute…then we dropped the clinada to 2x a day…things seemed to get a little worse..on 3rd day. I upped to 3x things got better..then last 2 days back to 2x and again decline….

The screech is gone as of 3 day post ta…so it’s that or the clinda which would attack clostridia(which would be the 4 time..that I believe I can correlate the screech to clostrid)(vanco worked past 3 times)

If he does screech it’s once a day…his motors are 95-98% gone..subclinical..and sometimes I wonder if it is just some other kid action…not a tic at all

 

However his vocal,s though not screeches, are pretty constant….some rasberried, a lot of kissy, suck fish sound….and clearing, cough…I do hear a little snot-so that can be triggering the cough, clear…..but the sucking sound?

So overall I would say we are back to 80% improved…I guess….if vocals go…that 2%remaining, I would let go to see what happens

…and maybe I can say 80% because those sounds aren’t too loud, but I am concerned on the consistency of them!!!!!

oh,,,also the last 3-4 days...his mood has been really good...not that it was bad....just that it's better...so i don't know if that is something..maybe becasue he is off abx, the tonsils being out,,,,maybe this is who he really is...not just a great kid, but a super great kid...or just a fluke...as we all fluctuate in temperment!!!!

 

We have been off abx since tuesay 10/5/10…..Friday 10/8/10 was the 3 week mark for the TA…in past it would take a full month maybe 5 weeks to completely clear all tics…..so maybe I need to be more patient….

 

On wed 10/6/10 we starte ole…we have been adding a pill every time and are up to 1000mg 3x a day as of today……maybe this will hold or maybe get some secret parasite we don’t know about….

Ds weighs about 80lbs and here is current med list

 

 

Am.

25mcg levoxly

1000mg c buffered

2 ole 500mg each standardized to 20%

100mg isoquercitin

500mg turmeric standardized to 95% curcuminoids…just add this this moring(I was just giving it the last nights)

 

2 hours later only on weekends…3 tabls..bentonit

 

2pm ish – 2 ole at 500mg

 

6pmish -1 culturelle =10 bil

1 lactobucillus planetarium=10 bil(was doing double this when on pharm abx)

 

 

Bedtime

1 tumeric

2 ole

 

I am going to hold this pattern for the weekend….then?????????

 

On Monday I was going to call our dan to see if maybe a short burst or taper might knock this out..

Ds had a 5 day burst the last 3days of feb 2days of march..at 40mg

He had a 28day taper ending july 28th 40mg30mg20mg10mg

 

 

Here are my questions I like to discuss

he will 10 years 8 monthsat end of oct…..i don’t want to miss the window of healing

onset for this particular ongoing episode will be 2 years april 2011…so about 1 ½ yrs currently

 

1) …..is it too soon to do a taper of some sort…like 10 days.

It will be about 2 months and 2weeks from last one if we do so……

 

2) should I wait another 2 weeks before trying taper to see if ta gives us more benefits…

 

3) should I go back on clindamycin?...i don’t want to build resistance or allergy ….starting to get concerned with the abx’s

 

4) any suggestions on ds’ supplements

 

5) should I just go get pex done…

 

6) Are vocals the hardest to get rid of, of all the tics?

 

OK..no one on this board has 2cents they want to put in???????

I don't believe it :huh:

 

ds' vocals are pretty continuosus.....snort, cough, clear, suck,snort, snort, clear,suck, cough

i am stupified....

no motors?????

does that mean it is flushing out and this is the last step???

or are they just the hardest????

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We've only had minor vocals, but I do consider them a lower level than the physical motor tics, sort of the first thing that shows up (like a little throat clearing) but also the last thing to leave. Sorry I don't have more. I do think looking at ivig might be something to consider since its been so long, but I still think you need to let things settle. I like to evaluate our situation week to week, since daily ups and downs can swing pretty fast and the disease seems to get better (or worse) in waves. No motors is great!! And no screeching - so it looks like things are looking up.

 

We are 8 weeks post ivig, and we've seen some symptoms disappear, but we still have a couple that are almost unchanged...just stuck(intrusive thoughts). So, I don't know if that's as good as it gets, or if he needs another ivig, or if he will continue to improve but at a slower rate than the first 6 weeks after ivig.

 

DS had pitand. I'm assuming your son has classic pandas and only reacts to strep exposure? In which case, maybe removing the strep and keeping him from reinfection will be enough only time will tell. Either way, getting rid of those tonsils sounds like a very wise decision.

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You may have this info in your post,but I admit I'm tired this morning and the words are all blurring together. Post surgery...what antibiotics was he on? Was it a prophylatic dose or full strength? You say he finally starting seeing improvement again post t and a. That's great! So how long have been at this plateau now?

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Fixit from skimming your post it seems like you need some major anti-inflammatory action. Enhansa (curcumin) may take a while to kick in. LDN? Spiro? IVIG? Have you tried giving a big dose of ibuprofen? I'm curious to see if you notice a difference. Do you see a difference after clay or charcoal?

 

What did the OAT test show? I can't remember...

 

See my post about our 3week update on OLE. We had some very loud screeches show up after I stopped biocidin. I added it back in and as of this morning they are gone. Does that mean there is some bacteria? Biocidin is really good at getting rid of clostridia. I don't know...I am tweaking things as I go along, I certainly don't have all the answers and I am waiting for some OAT results.

 

Is there any way you are seeing yeast from OLE? Any die-off of some sort? So many variables.

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Yes...so glad i got them out..i feel like a complete J.A. for not doing it when he was5-6

 

he was classic pandas before...

this onset i am 99% certain was myco p an all ....broke loose

 

he still has mucus i can hear and he still spits out...yesterday his eyes were red...i asked if allergies were bothering him, he said yes.

i asked did this just start today(sun) he said welll....yesterday night i was at neighborsa and they have 2 dogs and 2 cats.....(they used to only have one of each and maybe that wasn't a tipping point for him)(i'm not saying hes exaspertaing right now)it's just re-reminds me about his allergies and what to do....

last allergy season was scary on his pan/pits condition

with that i think the snot triggers a another pull to get it just right(or maybe i'm over reacting and like when i have drainage i have have to keep swollowing till it feels gone)...then he'll cough or clear...which would also seem normal, considering the length of his sucking it in..but then some rasberries, or a kissy sound..

but it is constant triad or quadad.....

 

yes a very good improvement after ta..again(like the taper) i thought i might get complete remission...maybe i will, but just need to be patient and/or figure out rest

we stopped clindamyacin a week ago...he was on that about 18 days...

the plautaue has been as long as we've been off of clinda....

 

i meant to give him a some nystatin this moring just to keep his yeast in check...

i completely forgot aobut ibuprof...i didn't realize curcumin would take a while....

i might add ldn back.....would that give me a quicker response?

 

to me the screeches indicate clostridia i guess..steph it seems like you get the same results when you attachk it...and this would be the 4th time i've addressed it and had remission....so i guess i need to just keep it gone..

 

my thought though, are his vocals in a getting it just right cataogory, or other things ..ie snot triggering the chain,...or none of the above and all just tics....

 

but as we talk about sweet spots in treatment...i feel i need to just decide on a big gun ..he's 10 1/2 and if the white paper comes out and says..x for this kid and y for that one....i dont think that will resolve good majority of the kids...so i feel like i have 2 weights on my back...

 

i might do the allegy shots...gotta call doc b today to start...i think...idk.....his allergies are gonna undo us...i know it...as again, we haven't had a spring w/o and episode...

this way if there is a reaction it will just push me into pex first....

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Fixit-

 

I hesitated to answer, because we haven't dealt with tics, only ocd- but I will offer my 2 cents FWIW.

 

You have a lot of info in your post. I think the T&A was a good move, although (from our experienc) don't know if that alone will bring on remission.

 

It sounds like you have some issues that you are not sure if they are resolved: clostridia and allergies? I think treating, getting these under control will help with pandas symptoms. I would try to do this in the most gentle, but effective way. I would hesitate to continue the clindamycing for too long.

 

I would try short term advil, and consider a steroid burst (if that has been successful before) to see if you can push the improvements forward.

 

Pandas boggles the mind. But, I do think it is important to be somewhat methodical about your course of treatment. Lay out your plan, and then follow it without letting your emotions make the decision. Our plan looks like this:

 

daily antibiotics

if we see a flare up: increase antibiotics and add advil for a week

if this is not working: we try a steroid taper

when we did all of these things, and still did not see progress- we did pex

 

I think you need to look at behavoirs on a weekly trend. Healing definately takes time- and it is a balance between giving it the time it needs, but not letting the episode go on too long. IF you are seeing even baby steps of progress weekly (with some sawtooth), I would take that as a good sign- and stay the course. If you do hit a plateau for a month- I would then consider a steroid burst.

 

Remember, IVIG can often make kids worse for a significant period of time- so I would really evaluate where you are before jumping in.

 

I don't think PEX has ever made anyone worse- but remember for most the progress with this procedure is also not immediate.

 

Good luck...

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Fixit-

 

I hesitated to answer, because we haven't dealt with tics, only ocd- but I will offer my 2 cents FWIW.

 

You have a lot of info in your post. I think the T&A was a good move, although (from our experienc) don't know if that alone will bring on remission.

 

It sounds like you have some issues that you are not sure if they are resolved: clostridia and allergies? I think treating, getting these under control will help with pandas symptoms. I would try to do this in the most gentle, but effective way. I would hesitate to continue the clindamycing for too long.

 

I would try short term advil, and consider a steroid burst (if that has been successful before) to see if you can push the improvements forward.

 

Pandas boggles the mind. But, I do think it is important to be somewhat methodical about your course of treatment. Lay out your plan, and then follow it without letting your emotions make the decision. Our plan looks like this:

 

daily antibiotics

if we see a flare up: increase antibiotics and add advil for a week

if this is not working: we try a steroid taper

when we did all of these things, and still did not see progress- we did pex

 

I think you need to look at behavoirs on a weekly trend. Healing definately takes time- and it is a balance between giving it the time it needs, but not letting the episode go on too long. IF you are seeing even baby steps of progress weekly (with some sawtooth), I would take that as a good sign- and stay the course. If you do hit a plateau for a month- I would then consider a steroid burst.

 

Remember, IVIG can often make kids worse for a significant period of time- so I would really evaluate where you are before jumping in.

 

I don't think PEX has ever made anyone worse- but remember for most the progress with this procedure is also not immediate.

 

Good luck...

 

wow..thanks...you have some good ideas...

writing it down and not letting emotions takes over....THATS gonna be a challenge...i want to grab everything and throw it on the fire..

 

yes ....i am concerned about clinda and now the more i know...about being on any abx....for ds..being that he dose have allergies...developing an allergic reaction...and with the pens...and steroids he does need to be on antifunglas...as all the years of abx with this thing

 

i always question if you can get sawtooth even w/o ivig so thanks for that info

 

yes i am concerned with ivig and tics....that's why i want pex...at least first...and again thanks for telling me that may take time too...i would have been flipping....

 

thanks for the replies...all

if anyone else has thoughts..i am always open to them....

 

does anyone think it is too soon to do another taper...maybe a mini..like 10 days, if that's an option...remember we did a 5 day in early march....and a 28day in july...so roughly 2 months, 2 weeks since finishing it

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Fixit, is he allergic to mold? In our area mold has been high for a really long time. I don't know what my non-PANDAS son is allergic to, but his allergies are at a high this year and still here. As for reaching a plateau after going off the clindamycin....I look at it from the persective of at least he didn't drmatically backslide once going off of it.

 

Now for that cough....is it a normal cough? Do you think it's a cough from his sinuses draining due to allergies? Do you think it warrants getting his chest listened to? Don't want to scare, but a cough can be a symptom of Myco P. I am not saying that's what it is, but if you're trying to piece together what is going on , maybe it's something to rule out.

 

Like dcmom, my son didn't have tics, so I'm not much help there. But people consistently say it's one of the hardest symptoms to get rid of. I'm sorry I couldn't offer more help:(

 

 

Yes...so glad i got them out..i feel like a complete J.A. for not doing it when he was5-6

 

he was classic pandas before...

this onset i am 99% certain was myco p an all ....broke loose

 

he still has mucus i can hear and he still spits out...yesterday his eyes were red...i asked if allergies were bothering him, he said yes.

i asked did this just start today(sun) he said welll....yesterday night i was at neighborsa and they have 2 dogs and 2 cats.....(they used to only have one of each and maybe that wasn't a tipping point for him)(i'm not saying hes exaspertaing right now)it's just re-reminds me about his allergies and what to do....

last allergy season was scary on his pan/pits condition

with that i think the snot triggers a another pull to get it just right(or maybe i'm over reacting and like when i have drainage i have have to keep swollowing till it feels gone)...then he'll cough or clear...which would also seem normal, considering the length of his sucking it in..but then some rasberries, or a kissy sound..

but it is constant triad or quadad.....

 

yes a very good improvement after ta..again(like the taper) i thought i might get complete remission...maybe i will, but just need to be patient and/or figure out rest

we stopped clindamyacin a week ago...he was on that about 18 days...

the plautaue has been as long as we've been off of clinda....

 

i meant to give him a some nystatin this moring just to keep his yeast in check...

i completely forgot aobut ibuprof...i didn't realize curcumin would take a while....

i might add ldn back.....would that give me a quicker response?

 

to me the screeches indicate clostridia i guess..steph it seems like you get the same results when you attachk it...and this would be the 4th time i've addressed it and had remission....so i guess i need to just keep it gone..

 

my thought though, are his vocals in a getting it just right cataogory, or other things ..ie snot triggering the chain,...or none of the above and all just tics....

 

but as we talk about sweet spots in treatment...i feel i need to just decide on a big gun ..he's 10 1/2 and if the white paper comes out and says..x for this kid and y for that one....i dont think that will resolve good majority of the kids...so i feel like i have 2 weights on my back...

 

i might do the allegy shots...gotta call doc b today to start...i think...idk.....his allergies are gonna undo us...i know it...as again, we haven't had a spring w/o and episode...

this way if there is a reaction it will just push me into pex first....

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Fixit, is he allergic to mold? In our area mold has been high for a really long time. I don't know what my non-PANDAS son is allergic to, but his allergies are at a high this year and still here. As for reaching a plateau after going off the clindamycin....I look at it from the persective of at least he didn't drmatically backslide once going off of it.

 

Now for that cough....is it a normal cough? Do you think it's a cough from his sinuses draining due to allergies? Do you think it warrants getting his chest listened to? Don't want to scare, but a cough can be a symptom of Myco P. I am not saying that's what it is, but if you're trying to piece together what is going on , maybe it's something to rule out.

 

Like dcmom, my son didn't have tics, so I'm not much help there. But people consistently say it's one of the hardest symptoms to get rid of. I'm sorry I couldn't offer more help:(

 

 

thanks again!...even though we had myco p....i didn't think of it coming back....(per converstioon with docs about 2 months ago...see below)

i think this board is so crucial...as a mom you get tired..and start forgetting to check the obvious...a second, third time..

when i last checked his myco level it did come up .20...on a scale that says above .90 could be postive...

docs said don't worry about it...docs say there is a margin of error in tests

so maybe it time to recheck....if its up more i guess i have another target

 

i also think the cough could be sinus from allergies..as i do actually hear a little something, in there now and then.

 

and yes he just came up with mold this last test with doc b in august....we are not treating allergies other than

vita c

quercitine which i upped to 500 yesterday and today...i gave benedryl last 2 nights... 2 tsp ...he's 75-80 lbs

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my son had some tics that disappeared with ivig. Day one of ivig - a minor throat tic - gone. He had a little eye blinking, and little head ticcing, gone in a couple weeks (these were very minor at the time of ivig) His major compulsion or tic? was looking into the sun very quickly - it looked just like a head tics, and if you didn't know he was looking for the sun, you would never put it into the category of compulsion - so we called it a compuls-tic. This took longer to go away, about 3/4 weeks, but its now gone.

 

There are a number of threads on pex vs ivig. I started one a few months ago, you can search for it. We decided to do ivig because it seemed like there was less relapse. Theory being that pex offers immediate relief - removes antibodies from your own blood and returns your own blood, while ivig overwhelms your system with 1.5 times the amount of antibodies (or 2 times the amount), and there may be a mechanism for "retaining" certain cells, because the donor cells are functioning properly. Perhaps you should consult with a doctor that does both. If you are trying to get PEX I guess you will be because I think only one is doing PEX, and she is doing more and more ivigs from what I am seeing in posts on the forum.

 

The ideal would be true plasma exchange - your blood is reomoved, cleansed and reinfused along with the donor antibodies. No one does that that I know of, but I do know that several people have followed up PEX with ivig.

 

ivig does work for tics. I'm pretty sure that one of the requirements for swedos original ivig vs pex study was that the subjects had tics (not just ocd). ivigs worked for us for us (indeed all our tics are gone - we just have one really bad ocd thing, and some minor mood stuff - although I think that mood stuff mostly related to the ocd thing)...it works for lots of ticcers - look at lauren johnson - her sneeze tic started to resolve almost immediately...you can see it if you review the history of the videos on her. She still had some eye blinking going on (maybe sitll does for all I know) but very minor compared to complex motor/verbal tic that was her "sneezing".

 

my ds was not in exacerbation at time of ivig. but when he exacerbated before ivig - he had horrendous painful head and neck whipping, that would last for hours each day. He'd have some calm periords - he didn't do it in the classroom much, but recess, at home, playing sports - it was non stop. He's had one cold since ivig, and although he's had a bit of a setback, he did not exacerbate, and did not start ticcing again.

 

I can only speak from our experience, but for us the ivig has worked for the tics, but not the OCD!(its worked a little bit for it, but seems stuck now)

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my son had some tics that disappeared with ivig. Day one of ivig - a minor throat tic - gone. He had a little eye blinking, and little head ticcing, gone in a couple weeks (these were very minor at the time of ivig) His major compulsion or tic? was looking into the sun very quickly - it looked just like a head tics, and if you didn't know he was looking for the sun, you would never put it into the category of compulsion - so we called it a compuls-tic. This took longer to go away, about 3/4 weeks, but its now gone.

 

There are a number of threads on pex vs ivig. I started one a few months ago, you can search for it. We decided to do ivig because it seemed like there was less relapse. Theory being that pex offers immediate relief - removes antibodies from your own blood and returns your own blood, while ivig overwhelms your system with 1.5 times the amount of antibodies (or 2 times the amount), and there may be a mechanism for "retaining" certain cells, because the donor cells are functioning properly. Perhaps you should consult with a doctor that does both. If you are trying to get PEX I guess you will be because I think only one is doing PEX, and she is doing more and more ivigs from what I am seeing in posts on the forum.

 

The ideal would be true plasma exchange - your blood is reomoved, cleansed and reinfused along with the donor antibodies. No one does that that I know of, but I do know that several people have followed up PEX with ivig.

 

ivig does work for tics. I'm pretty sure that one of the requirements for swedos original ivig vs pex study was that the subjects had tics (not just ocd). ivigs worked for us for us (indeed all our tics are gone - we just have one really bad ocd thing, and some minor mood stuff - although I think that mood stuff mostly related to the ocd thing)...it works for lots of ticcers - look at lauren johnson - her sneeze tic started to resolve almost immediately...you can see it if you review the history of the videos on her. She still had some eye blinking going on (maybe sitll does for all I know) but very minor compared to complex motor/verbal tic that was her "sneezing".

 

my ds was not in exacerbation at time of ivig. but when he exacerbated before ivig - he had horrendous painful head and neck whipping, that would last for hours each day. He'd have some calm periords - he didn't do it in the classroom much, but recess, at home, playing sports - it was non stop. He's had one cold since ivig, and although he's had a bit of a setback, he did not exacerbate, and did not start ticcing again.

 

I can only speak from our experience, but for us the ivig has worked for the tics, but not the OCD!(its worked a little bit for it, but seems stuck now)

 

Oh norcal...i was doing so well.

last night and this morning i felt comfortabble(though i know i wasn't done,as ds has obvious stuff going on) but just to plan the next step..ie..iburpfren, allegery stuff...

now...the one note from the teacher has me in tears......

i feel like am failing him...why can't i make decission

do a steroid..ok..so he gets better..am i just masking something that might retrigger..next month, 2 years..???

do i do pex..just to relapse..but maybe he will be the one to hold??

do i do ivig..to have some things get better and have things appear that i've never had to deal with before???

.....

if i get one...i think i will really need 3 to pick a number..as per all the years of infection off and on....

and then what if he relapses in 3 years.....or is this supposeed to reset him so he doesn't relapse...

will they(who ever is writing this paper,,,say that in case of relapse or not acheiving 100% redo ivig)

and why can't i hold it together..he is better than he was..but it obvioulsy is effecting him ...as the school is so great...so far...and to initiate the last email...means its beyond his norm at school...

 

this is what i was going to ask lyme mom

 

 

ds had igenex done 2 weeks after...

finishing a month of biaxin.

2 weeks of aug xr and

one month after a 5 day taper..(this was april this year 2010)

 

band 41 + on both

band 39 ind on one....

a poster here, was told by his lyme doc with similar results it was liyme and saw some improvement...

doc B says its not lyme....

do you have an opinion...thought...

i live in ga so would have to go to nc to a lyme doc there.....

thanks

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re: allergies If the Benadryl will help, it could take up to a week to get full effect. You could look into that D-Hist Jr. That has quercitine along with other stuff for inflammation and to loosen mucus. My non-PANDAS son weighs about the same as your son. One tablet twice a day helps him more than the Claritin did. And you can go up to 2 tablets twice a day. Something to think about if allergies don't get better in a week.

Edited by Vickie
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