my turn to dispare again....

[Fixit]

Ds has started his new regime….of amox xr and fluconazole.8 days ago…the good news is …no sign of pain or rash as before….

 

Day 5..teacher emailed me,said vocals up is there anything I can do for him…went to school with clay…she emailed and said it wasn’t better 45 minutes later….I was very upset…..no screeches at school, he holds it and does a lot of throat clearing

(ps the screech might be likened to what doc t calla falsetto pitch in his write up)

(his screeches are down a little over the last week or so…(because he was so congested and couldn’t get enough air to make the squeal, or because pollen count is coming down))

Anyway he gets home…and I don’t think its bad at all…..i don’t think she gets or sees what I get…

I begin to wonder/hope if it will work…day 6 was kind of turning point last time(but were also on biaxin…so maybe it was the combo?)

He ends up having an accident in the middle of night and tells me the last 2 days,, when he has to go, it’s always like an emgency and can’t get there fast enough

 

Day 6,… better day overall than yesterday…pollen count down to 95….out of the the 3-5 THOUSAND range we were in a couple of weeks ago…

 

Day 7…OK…things look good right of the get go… pollen 84…no reports from school….comes home,motors down..squeels maybe every ½ hour, almost like he forgot to do it…maybe 15-25%even 35%ish better than we were ,so very happy, looks like we are on our way…i can breathe

.go to 7pm soccer game....on way home lets out a couple squeals

Takes shower and doing homework…squeeling every 5 minutes….squeeling as he’s falling asleep…..

 

 

Today day 8…squeeling this morning, motors are up….pollen 93

 

IT is just so correlated to him being home inside for several days..…..go out play in grass for an hour and bam..up tic on everything,compulsions….noticed last night he licked something… I noticed the lick a week ago, one day…I don’t call that a tic…that would be a compulsion or an ocd…..if he is in constant motion…even when sitting down….is that chorea...he's skin picking, hair pulling some??

 

Last year onset 4/6/09 worst pollen count day of the year…..is it all just allergies for ds…

 

Is this where we are saying that once the toll receptor gets changed or triggered by his past streps that anything can retrigger his symptoms...He did come up HIGH on myco p igg..

 

Do I even know what I am seeing anymore? Is it all in my head? You know….you just keep hearing docs tell you is all a coincidence…a friend or 2 say just do what the docs “traditional”tell you to do and stop doing this to your kid and yourself if the docs call it ts its ts….why are you fighting???

My gut feels like doing that would be wrong, especially with EVERY other episode completely remitting with abx……..but I am so confused, I am so tired of this…things look so good and then the smack down……

Is this why doc k says that treating with abx doesn’t work…Maybe ds has had too many reinfections……and ivig resets the receptors?

Very important to me is...does ivig really help with allergies, because every year spring sets off an episode...or at least it weakens him to get something else in combinatoin....

 

maybe its doc t’s analogie..its like an asthma attack and need help to settle down…but the abx maybe not do it, or are they and I haven’t given it long enough,,,could this be saw tooth pattern

or is it things were getting better and the exposure was the pollen(I wish it were food, that you can control…he’s got to go outside even its to get in the care) and acts like it would be a reexposure to strep….

 

Am I expecting too much…..I need it to be 2 years from when this is behind us or its more widely accepted and we have more knowledge……

[trggirl]

I'm so sorry. I am asking myself the same questions. I keep wishing we were 2 years ahead and had lots more studies and papers. Yet I'm so grateful that we even know about PANDAS now.

[thereishope]

I can see your thoughts spinning as I read this. I wish I could just give you a break and let your mind rest for at least a day.

 

Did you mean Augmentin XR (was amox xr a typo)? What was on on right before switching to the new meds? As for the high myco p, have you had them retested to see if anything changed? Does anyone know what interval you should retest at to see if it could indicate an existing infection?

[dcmom]

fixit- So you are seeing that allergies trigger exacerbation, or at minimum a ramp up in symptoms. In that case, I am not sure antibiotics will be of major help- although I do advocate staying on them. I have NO experience with allergies, but is he on allergy meds? Is there a possibility of doing a steroid burst- have you done that before? A month long burst might give you sustained improvement, and take you to a later date where maybe the pollen is lower? I do believe IVIG can help with allergies and/or asthma as well as pandas- so you may have a double reason to give it a try....

[Joan Pandas Mom]

I'm am sorry to hear this. We are going through rough, rough time too. Could it be the type of pollen? Right now the Pine pollen has started.

[Stephanie2]

Fixit, I am so sorry I have been there so many times (like every day) with both of my boys. It feels like I will never get out of h#ll!! But I have a couple of thoughts.

 

First, who prescribed amoxicillin xr? Scott? I have never heard of his prescribing that! Also, I have to tell you that my son used to experience the same thing where he would start having meltdowns anytime he played outside! I think Buster once suggested that when a child is "exercising"(or under stress) it opens up the blood-brain barrier so that the antibodies can get in there and start stirring things up. Another theory is what you are describing with it being allergy related. You may have seen my posts regarding Spironolactone...the one thing I noticed right away on this drug is that my son did not have anymore meltdowns while playing outside. Then when I increased the dose (you increase it once a month for 3 months) I saw some amazing things happen (less irritability, less sep anxiety and I think less verbal tics). Motor tics are still there. Scott prescribed this, so it is an option. I started my 2 year old on it last night...we will see.

 

Another thing that Scott suggested to me, and I have not tried yet, is claritin and pepcid AC. These are histimine blockers and the combination will block H1 and H2 receptors. Also, he suggested quercetin to calm the allergies and close the BBB or something like that.

 

I'm not saying he has ALL the answers but he really does have a lot of "alternative" tricks up his sleeve, don't hesitate to call him when things get bad, I can usually get him on the phone the very same day for a phone consult (expensive, but what else is there to do?). He can also prescribe some traditional meds for acute times of stress. I don't like that route but I am finding that with 2 pandas boys and my husband out of town, sometimes ya gotta do whatever it takes for your sanity, ya know?

 

Hope things get better for you. My son does (did) the screeching thing, too - it's horrible.

 

Oh, and I get all the crap from my family too about doing all this "stuff". they think I am crazy and making him worse. They think I should stop his special diet and take him off all supplements/meds and things will get magically better. Well then, how do you explain what a mess he was BEFORE I started all that stuff!! He was worse! Some people tell me he needs to be "whipped" into shape, my 2 year old is just learning all this "behavior" from his big brother (even the TICS...what?) and it is just a "lack of control" on our part.

 

Sometimes I think that if everyone really believed in this diagnosis they would stop beating me up about it and they would roll up their sleeves and offer to help!

 

OK, I'm done with my own pity party!! LOL

 

Stephanie

[dcmom]

I hear you Stephanie. There is such a bias against mental illness out there, even if it is caused by biological. My very supportive, well meaning, SIL said something the other day that just sums up the perspective of SO many. I was saying how good the girls were doing, how insurance stinks, etc. I said I would get them PEX treatment every year if that is what it took to keep them well (I was trying to explain to her how straightforward the procedure was). Her reaction was: well that would be expensive, wouldn't it? (I am not sure if she meant for us or for insurance, but I am thinking for insurance because they are the ones who paid).

 

Now I certainly don't compare pandas to all of these illnesses, but, if my child needed a medical procedure for any other reason (appendicitis, T&A, chemotherapy, etc)- no one would ever suggest that the treatment is so expensive- in a way that meant don't do the treatment.

 

I just plow forward and consider people (including doctors) who make comments like this, ignorant. But really- I don't give a $%#* how much the treatment costs the insurance co (or me, as long as I have the $) - I need to help my child live a healthy, happy, productive life.

[Stephanie2]

I hear you Stephanie. There is such a bias against mental illness out there, even if it is caused by biological. My very supportive, well meaning, SIL said something the other day that just sums up the perspective of SO many. I was saying how good the girls were doing, how insurance stinks, etc. I said I would get them PEX treatment every year if that is what it took to keep them well (I was trying to explain to her how straightforward the procedure was). Her reaction was: well that would be expensive, wouldn't it? (I am not sure if she meant for us or for insurance, but I am thinking for insurance because they are the ones who paid).

 

Now I certainly don't compare pandas to all of these illnesses, but, if my child needed a medical procedure for any other reason (appendicitis, T&A, chemotherapy, etc)- no one would ever suggest that the treatment is so expensive- in a way that meant don't do the treatment.

 

I just plow forward and consider people (including doctors) who make comments like this, ignorant. But really- I don't give a $%#* how much the treatment costs the insurance co (or me, as long as I have the $) - I need to help my child live a healthy, happy, productive life.

 

Yes, people can't quite get around the thought that maybe if you tried "just a little harder" you could get better control of your child, no matter what his/her illness. My inlaws who are usually very understanding of this...they just keep telling us all the strange things that my son does, as if we should be able to "go to battle" with it. Like I can make my son stop making strange noises at the dinner table, etc. THEY ARE TICS! I can say it until I am blue in the face, but to everyone else, he is just out of control b/c I sit back and "let" him make the noises!!!! UGHHH!!!!!

 

I often say to my husband that if our kids had almost any other illness that was causing our family to become debilitated like this then they would all be at the door with meals, offering to help, etc. But they all sit back and point the finger - it's just so awful!!

 

And I agree about the money. I would rather live on the streets with two normal boys than live in a nice house with two wild animals...

 

Stephanie

[Fixit]

We pretty much stopped everything as per doc t about the end of march to run more labs mid april...doc t is busy so i was able to get ahold of scott smith, went to see hime and ran more labs 4/19/10....continuesd doing nothing till all samples were sent, start program 4/23/10...

we got amox tr,,,isn't that generic for aug xr...sorry....should i get the augmenti tr????

 

i tried quescent on day 5, but we also had upswing in ds condition, so i stopped till i spoke with scott which was next day...he said wait on adding anything else, as per upswing, the urinatina issue, and now i look back there was an increase in pollen....he wanted to wait to let ds adjust to meds so liver and kidney can adjust and that seems to have adjusted....thngs settled alot by next day and day 7 was looked like my dreams were coming true..

 

let me ask...as i'm writng this...i think of all the other parents and i say ...you got it ,keep going...........but i don't see that for me.....is it all my imagination...and like wornout and jayjay...will ivig work....i'm guessing i don't have a choice but to try....

 

anyway..we are not on any allergy meds or herbs.....the pecid thing is on my program but havent' gotten there yet.....i guess i should email scott again....

i told him nasonex seemed to ramp up his tics(as per getting back on plane to go home, son was in tears, and he doesn't cry easy and has high pain threshhold)

scott put down singulare....from this board....i haven't heard great reports about it.....so i'm more scared

another reason allergie keep popping back...we a had 2 dogs...once they went to heaven...we went 5 months before this last episode...less things keeping his body aggrivated....(only lab that came back is ds is still highly allergic to CATS, see buster!!!!) did get the paper work, scott just mentioned the one...we'll go over everything at one time..

 

 

how does pecide ac work...i don't get it>>>>

 

and i almost want to do ivig just for the allergy relief if that is a true benefit....ds was almost asleep in scotts office his allergies are so bad....has to sleep sitting up to breath...

i am scared to use anything for ds allergies as i think he gets so beaten by them, and maybe the meds only mask the symptoms, but let it into his brain....i am scared TO DO ANYTHING.....if i upset the apple cart will it be better or worse????

Ds is someone who would really benefist from allergy shots....but i don't think i'll ever give him another of any kind,,, and will have to get an examption for the one for requred by GA(is it the same in other states) for versella(he failed, only a 7, what ever that means on his serum test)..

i wish i could talk with someone who's done the sublinguals(not the homeopathic kind)the kind they use in europe

 

i asked scott about myco p and adding, but he thought i would be gone since we were on abx for that for a month......but can't it be chronic like strep...or lymes...at least that is what i keep saying....... i had a second myco run about 2 weeks after start of abx but with quest, as i am fully covered on labs with them...the igg with lab corp showed pos anything above 320 ds was 631....quest was above 1.10 and ds came back at 1.60....scott said that it was coming down.....does anyone know how to compare the 2.....i ran the second to have a baseline going forward with quest......

i guess i could retest in future...but if i fight one thing now...and myco shows up again....we're just in a big circle....

just noticed...this lab shows an igm...316......but under 770 is neg????? on labcorp's there wasn't an igm reading ..or they just don't print it if neg?????

 

So as per buster thoughts....the exercising could have opened things up.....so maybe slow and steady wins the race and let things resettle let the abx do their thing....

 

Thanks to all letting me know they are going through the same thing....it makes me feel better....i think

[Fixit]

Amen to both of you!!!! Do you think i want to do this!?!?!?! At least i have a chance of "curing my kid" with everyone out here....with other docs, they'll admit ....oh we dont know what causes it....so then, lets at least follow my lead as a parent and what i've obsevered....

this would have been resolved a decade ago with doc swedo.....

 

but apparently the better suggestion is to drug him over and sacrifice him in order the rest of us can go on our merry way....and that wouldn't necessarilly be the case anwawy...as so many ened up on 7 drugs and go off of them in the end....just as bad as when they started...

[thereishope]

Now that you mention it, I think you're right. The generic of Augmentin comes up as "amox w/ clauv" on the bottle. Sorry about that.

[Stephanie2]

Wow, your post has my head spinning! Where do I start?

 

Did Scott really prescribe singulair?? I get it, but there can be some rough behavioral side effects with that. My son was on it and I had to take him off. But then again, maybe your son will benefit. It is anti inflammatory.

 

I'm not sure about pepcid and how it works but I know it blocks histimine in some way, which is related to allergies and immunity.

 

As far as your son's allergies, have you ever tried taking him off dairy products? My son (and myself) used to have very severe allergies/asthma. Since we have started the DAN protocol (which is basically what you are doing with scott) the allergies/asthma are 99% gone. Only problem is that pandas symptoms are not!! Scott said that even if the child does not have typical allergy symptoms, the immune response can still be there and cause pandas issues.

 

Let me tell you my son used to be on the nebulizer about 5 days a month. Now, he has only needed it for about 2 days in the past year. Also, he is off all allergy/asthma meds, only one croup attack in the past year (used to be 3 days a month). I am also off all meds. My allergist couldn't understand why I have only been in to see him once in the past year! He said he did not beleive in going dairy-free and all that nonsense, but I said to him " well, I'm not seeing another allergist!! I haven't been in here b/c I don't have allergies anymore...plain and simple".

 

OK, I'm just rambling. Anyway, thank you for starting this thread b/c let me tell you it really helped me to vent earlier today!!

 

Stephanie

We pretty much stopped everything as per doc t about the end of march to run more labs mid april...doc t is busy so i was able to get ahold of scott smith, went to see hime and ran more labs 4/19/10....continuesd doing nothing till all samples were sent, start program 4/23/10...

we got amox tr,,,isn't that generic for aug xr...sorry....should i get the augmenti tr????

 

i tried quescent on day 5, but we also had upswing in ds condition, so i stopped till i spoke with scott which was next day...he said wait on adding anything else, as per upswing, the urinatina issue, and now i look back there was an increase in pollen....he wanted to wait to let ds adjust to meds so liver and kidney can adjust and that seems to have adjusted....thngs settled alot by next day and day 7 was looked like my dreams were coming true..

 

let me ask...as i'm writng this...i think of all the other parents and i say ...you got it ,keep going...........but i don't see that for me.....is it all my imagination...and like wornout and jayjay...will ivig work....i'm guessing i don't have a choice but to try....

 

anyway..we are not on any allergy meds or herbs.....the pecid thing is on my program but havent' gotten there yet.....i guess i should email scott again....

i told him nasonex seemed to ramp up his tics(as per getting back on plane to go home, son was in tears, and he doesn't cry easy and has high pain threshhold)

scott put down singulare....from this board....i haven't heard great reports about it.....so i'm more scared

another reason allergie keep popping back...we a had 2 dogs...once they went to heaven...we went 5 months before this last episode...less things keeping his body aggrivated....(only lab that came back is ds is still highly allergic to CATS, see buster!!!!) did get the paper work, scott just mentioned the one...we'll go over everything at one time..

 

 

how does pecide ac work...i don't get it>>>>

 

and i almost want to do ivig just for the allergy relief if that is a true benefit....ds was almost asleep in scotts office his allergies are so bad....has to sleep sitting up to breath...

i am scared to use anything for ds allergies as i think he gets so beaten by them, and maybe the meds only mask the symptoms, but let it into his brain....i am scared TO DO ANYTHING.....if i upset the apple cart will it be better or worse????

Ds is someone who would really benefist from allergy shots....but i don't think i'll ever give him another of any kind,,, and will have to get an examption for the one for requred by GA(is it the same in other states) for versella(he failed, only a 7, what ever that means on his serum test)..

i wish i could talk with someone who's done the sublinguals(not the homeopathic kind)the kind they use in europe

 

i asked scott about myco p and adding, but he thought i would be gone since we were on abx for that for a month......but can't it be chronic like strep...or lymes...at least that is what i keep saying....... i had a second myco run about 2 weeks after start of abx but with quest, as i am fully covered on labs with them...the igg with lab corp showed pos anything above 320 ds was 631....quest was above 1.10 and ds came back at 1.60....scott said that it was coming down.....does anyone know how to compare the 2.....i ran the second to have a baseline going forward with quest......

i guess i could retest in future...but if i fight one thing now...and myco shows up again....we're just in a big circle....

just noticed...this lab shows an igm...316......but under 770 is neg????? on labcorp's there wasn't an igm reading ..or they just don't print it if neg?????

 

So as per buster thoughts....the exercising could have opened things up.....so maybe slow and steady wins the race and let things resettle let the abx do their thing....

 

Thanks to all letting me know they are going through the same thing....it makes me feel better....i think

[Fixit]

yes he said singulair...i asked if he was sure about that...i heard some not great stuff about it.....he said that what he meant..

we have slowed our protocal...and don't know if we'll get that far.....

 

we have been dairy free again since feb.....

 

as far as your allergist......i think every allergist realizes milk is a histamine and or an inflammaorty of some sort....even when i was a kid and would get a cold my mom wouldn't let me have milk or ice cream..and tha'ts almost a hundred years ago....

 

i never got to email scott....i'm trying to ride it out..there should be a hot line somewhere just for this sh(*&^(%..... it just changes and pops up so quick you don't know up from down and when you are in it, it's hard see it from a good perspective...you need an outsider....

 

 

 

Wow, your post has my head spinning! Where do I start?

 

Did Scott really prescribe singulair?? I get it, but there can be some rough behavioral side effects with that. My son was on it and I had to take him off. But then again, maybe your son will benefit. It is anti inflammatory.

 

I'm not sure about pepcid and how it works but I know it blocks histimine in some way, which is related to allergies and immunity.

 

As far as your son's allergies, have you ever tried taking him off dairy products? My son (and myself) used to have very severe allergies/asthma. Since we have started the DAN protocol (which is basically what you are doing with scott) the allergies/asthma are 99% gone. Only problem is that pandas symptoms are not!! Scott said that even if the child does not have typical allergy symptoms, the immune response can still be there and cause pandas issues.

 

Let me tell you my son used to be on the nebulizer about 5 days a month. Now, he has only needed it for about 2 days in the past year. Also, he is off all allergy/asthma meds, only one croup attack in the past year (used to be 3 days a month). I am also off all meds. My allergist couldn't understand why I have only been in to see him once in the past year! He said he did not beleive in going dairy-free and all that nonsense, but I said to him " well, I'm not seeing another allergist!! I haven't been in here b/c I don't have allergies anymore...plain and simple".

 

OK, I'm just rambling. Anyway, thank you for starting this thread b/c let me tell you it really helped me to vent earlier today!!

 

Stephanie

We pretty much stopped everything as per doc t about the end of march to run more labs mid april...doc t is busy so i was able to get ahold of scott smith, went to see hime and ran more labs 4/19/10....continuesd doing nothing till all samples were sent, start program 4/23/10...

we got amox tr,,,isn't that generic for aug xr...sorry....should i get the augmenti tr????

 

i tried quescent on day 5, but we also had upswing in ds condition, so i stopped till i spoke with scott which was next day...he said wait on adding anything else, as per upswing, the urinatina issue, and now i look back there was an increase in pollen....he wanted to wait to let ds adjust to meds so liver and kidney can adjust and that seems to have adjusted....thngs settled alot by next day and day 7 was looked like my dreams were coming true..

 

let me ask...as i'm writng this...i think of all the other parents and i say ...you got it ,keep going...........but i don't see that for me.....is it all my imagination...and like wornout and jayjay...will ivig work....i'm guessing i don't have a choice but to try....

 

anyway..we are not on any allergy meds or herbs.....the pecid thing is on my program but havent' gotten there yet.....i guess i should email scott again....

i told him nasonex seemed to ramp up his tics(as per getting back on plane to go home, son was in tears, and he doesn't cry easy and has high pain threshhold)

scott put down singulare....from this board....i haven't heard great reports about it.....so i'm more scared

another reason allergie keep popping back...we a had 2 dogs...once they went to heaven...we went 5 months before this last episode...less things keeping his body aggrivated....(only lab that came back is ds is still highly allergic to CATS, see buster!!!!) did get the paper work, scott just mentioned the one...we'll go over everything at one time..

 

 

how does pecide ac work...i don't get it>>>>

 

and i almost want to do ivig just for the allergy relief if that is a true benefit....ds was almost asleep in scotts office his allergies are so bad....has to sleep sitting up to breath...

i am scared to use anything for ds allergies as i think he gets so beaten by them, and maybe the meds only mask the symptoms, but let it into his brain....i am scared TO DO ANYTHING.....if i upset the apple cart will it be better or worse????

Ds is someone who would really benefist from allergy shots....but i don't think i'll ever give him another of any kind,,, and will have to get an examption for the one for requred by GA(is it the same in other states) for versella(he failed, only a 7, what ever that means on his serum test)..

i wish i could talk with someone who's done the sublinguals(not the homeopathic kind)the kind they use in europe

 

i asked scott about myco p and adding, but he thought i would be gone since we were on abx for that for a month......but can't it be chronic like strep...or lymes...at least that is what i keep saying....... i had a second myco run about 2 weeks after start of abx but with quest, as i am fully covered on labs with them...the igg with lab corp showed pos anything above 320 ds was 631....quest was above 1.10 and ds came back at 1.60....scott said that it was coming down.....does anyone know how to compare the 2.....i ran the second to have a baseline going forward with quest......

i guess i could retest in future...but if i fight one thing now...and myco shows up again....we're just in a big circle....

just noticed...this lab shows an igm...316......but under 770 is neg????? on labcorp's there wasn't an igm reading ..or they just don't print it if neg?????

 

So as per buster thoughts....the exercising could have opened things up.....so maybe slow and steady wins the race and let things resettle let the abx do their thing....

 

Thanks to all letting me know they are going through the same thing....it makes me feel better....i think