anyone getting 100% or close..how are the boys?

[Fixit]

i apologize for the long post..

 

I my ds is holding at about 75- 80% better from taper; he is day 19 post taper.

There were 2 days a week ago last sun and Mon.. there were virtually no tics..that I noticed or noted. We did start school last Monday ….95%?????

 

Tuesday I notices some raspberries sounds creeping in, and the head twists I mentioned…I thought well, just a blip…maybe brain inflammation from heat…so the next couple of days I gave cold water coming home from school, cold showers, an ibuprofen. And things seemed to settle by dinner time…

 

By Friday things seemed a bit worse in general…by Saturday I started losing it…not that we are back at his worst but the vocals seem back , again not as bad as they were or as constant but freakin there..The motors are at bay with the occasional head twist and a shoulder twist when he pushes out air….then I noticed him blowing on his hands or elbows….if did this in past it was once a day..Now its a few times..

 

This Saturday night if forgot to give him his probiotics..and Sunday morning I thought Id try krill oil instead of fish oil….Yesterday..(Sunday) even my dh asked what was going on with ds..things were so good…I dont know if I cant fix him if I can make it!!!!

 

This morning..though it was only a little time…seems less…but he is usually pretty good the first hour in the morning…

 

Can I expect 100%???

Can I expect 100% on a taper…..how long will it take..Im scared. Because I can still vision him not ticking…he may not remember as its been 1 ½ years and he is 10 ½??

I felt like we plateaued the last couple of days of taper…then day 3 post we added azith..250mg daily and 2 days later we had a little more improvement…

Then on the 7th day of azith we added back ldn and 2 days later was when we had the SUPER 2 days…

I dont know if we are slipping??

 

Also to note, I took my 7yr old to doc yesterday for an ear infection..?..would that be considered exposure?...we got it really early doc said..and he had his first dose last night…s

Should I double ds abx for a couple of days??

I was lucky in the past with getting 100% remission with just abx…(and no one would give profolatic)..am I asking too much at his age,10, onset 1 1/2years,,,the number of overall years starting at 2 ½-3?

With that, I want to add, when he was young if his abx was red, ds was like a maniac, a couple days in, even though he initially got better with tics..then tics may have gotten a little more as he raced around the house like a ping pong ball….this azith pill is red…..could that be it and can I get it w/o color?

 

Is it possible to get a 5 day taper and maybe nip this in the bud??? Is that advisable?

 

I guess the thing that is adding to my anxiety, Is that with my great visit with doc L. Other parents have reached out to me mentioning that they did not have the same!?!?!?!

Some were patients prior and some new….how could this be????

 

I Feel Terrible…it makes me scared…why was I so lucky??? What if she changes her mind??? What if one of my other kids goes through this and she says yes its pandas but no to pheresis?? With the parents permission, they dont post, I can say that, yes diagnosed pandas…child 14 with facial, grimaces, scrunches, jaw movement etc….she was told she will be fine and that she doesnt do pheresis for tics..that she will be fine…take clonidine..

Well its been on chlon and nothing…and how could she be fine…if you get a mastectomy. Insurance covers for implants as it affects a womans self-esteem, confidence..blah bhal..(and that is under a shirt!)

How could this not affect her teen social life…it is going to affect how she feels about herself everyday more than a haircut, and it will effect who hires her!!!!!!

 

I literally just got off another phone call with a mom who posts rarely and gave me the ok…

Her boy had phersis.stopped ticking for 2 months till he got myco p…then did ivig …did well for a couple months..just had 2 ivig 5 weeks ago…a had 2 weeks of no tics and 2 days ago vocals came back… i could hear them on the phone and i just started crying.

 

I WAS FLOATING ON CLOUDS A WEEK AGO. And now I am more scared than I have ever been!!!!

Why is the new study not including kids with tics!!!????!!!!!!

Why is it just new onset cases??? We are suffering here!!

 

Maybe I should have just said lets go in doc Ls office when I was there!!!!! Fortunately /or unfort….dh took a new job while I was on the road trip, so the new insurance wont start till his start date next Monday. Good news is that its cigna and they cover pheresis for pandas!!!! If doc l will still do it!!!!

 

I will have this knot in my stomach until he comes through the door at 3;40 to determine if today is better, worse or a hold. I AM TIRED OF THIS S.O.T. AND DONT WANT MY SON OR ANYONES CHILD BEING LEFT BEHIND AND NOT HEALED!!!!!

 

PLEASE reply with any thoughts on abx upage, doc l. ivig…hope, tics, steriods

 

Ps..should I try allergy shots before I maybe get approval for pheresis as per doc b?

Should I have tonsils out before hand also??

Today is day 19 post taper.

Again, we are not as bad as bad….but we might be slipping!!!vocals!!!!!!!!

THANKS ALL!!!

I don't mean to be so sad/MAD..i just fluctuate with my boy and have been dealing with this for 7 years.

Edited August 16, 2010 by Fixit

[momto2pandas]

Don't have time now to answer all of your questions, but about the red azith, my boys (esp ds6) are sensitive to red dye also, so we do get the azith pills in white. Our pharmacy has been great about it. The azith pills they give out in a bottle are red, but if they just give you a whole bunch of Z-pac's (which are made up of 250 mg pills, my kids' dose), then those pills are white. So they just send us home with a big bag of Z-pacs each time.

[thereishope]

I am so sorry, Fixit. It sounds like there are a lot of variables right now that could cause a setback in your son. Look at what you changed. Do you think that could have made him worse. How soon in relation to switching did you notice a change for the worse? As for the ear infection in your other son...who knows maybe it is playing factor. Steroids and their effectiveness in maintaining long term positive results vary. At least you have that glimmer of what it can and will be like once you get him better. Are you looking into IVIG or PEX?

 

As for the upcoming study, I didn't hear that they would not accept kids with tics. Where did you here that?

 

As for sudden onset, well I don't remember hearing those words exactly, but if that is what they do it is a way to ensure the child is PANDAS. They have to prove and be very confident that the kids invloved are 100% PANDAS. They can't leave any lingering doubt.

 

Let's hope it is a blip and he will bounce back soon.

Edited August 16, 2010 by Vickie

[Fixit]

Don't have time now to answer all of your questions, but about the red azith, my boys (esp ds6) are sensitive to red dye also, so we do get the azith pills in white. Our pharmacy has been great about it. The azith pills they give out in a bottle are red, but if they just give you a whole bunch of Z-pac's (which are made up of 250 mg pills, my kids' dose), then those pills are white. So they just send us home with a big bag of Z-pacs each time.

 

i just got off the phone with cvs and they called the maker and were to told all pills have red dye, evne the generic and the zpacs and some have blue too..

maybe i need to call a different pharmacy???

any thoghts

on that or other stuff

[Fixit]

I am so sorry, Fixit. It sounds like there are a lot of variables right now that could cause a setback in your son. Look at what you changed. Do you think that could have made him worse. How soon in relation to switching did you notice a change for the worse? As for the ear infection in your other son...who knows maybe it is playing factor. Steroids and their effectiveness in maintaining long term positive results vary. At least you have that glimmer of what it can and will be like once you get him better. Are you looking into IVIG or PEX?

 

As for the upcoming study, I didn't hear that they would not accept kids with tics. Where did you here that?

 

As for sudden onset, well I don't remember hearing those words exactly, but if that is what they do it is a way to ensure the child is PANDAS. They have to prove and be very confident that the kids invloved are 100% PANDAS. They can't leave any lingering doubt.

 

Let's hope it is a blip and he will bounce back soon.

 

my bad..as per this paragraph..it seems to not specify tics, just seems like its danced around a bit

Granted, these new findings are still preliminary and need to be replicated. However, the data relating to PANDAS is compelling enough to warrant following up such leads. NIMH is preparing to launch a new trial of intravenous immunoglobulin (IVIG) treatment for PANDAS this Fall, with support from a NIH Clinical Center “Bench to Bedside” award. The intramural NIMH will provide the clinical care, while data analysis will be carried out by independent teams of investigators at Yale University and the Oklahoma University Health Sciences Center. Dr. Swedo and her team are hoping to recruit 50 children with clear-cut PANDAS. They are predicting that IVIG treatment will produce striking benefits for OCD and other neuropsychiatric symptoms, and will be most effective for those children who start out with the highest levels of strep-triggered antibodies that go astray and attack parts of the brain. Moreover, monoclonal antibodies derived from these patients will be used to develop animal models of OCD that could lead to improved treatments.

 

Thank you for your kind words..and thanks for all you do too.

DS "seems" a little better today?!?! but as many know..i feel like i can't trust what i am seeing..are they actually better or just a little different...but i'll take today over yesterday!!!!

 

i remembered probi last night...back to fish oil this morning and ds7 has his dose of abx last night and this morning...

maybe he's actully a little congested, as when were traveling everyon sounded and got congested with the different pollens.. i do think i hear gung in there

 

i'm looking at pex really as ds is 98% tics..

 

but today at school the oppositional thing kicked in...got in trouble with teacher for removing his name tag off his desk...i asked him why several times, he said he just didn't want it there..the teacher warned him 3 times....what the heck is that...i said do you think i get everything i want..do you think i want to do the dishes, blah , blah

[thereishope]

So his allerges are acting up? Just what you don't need right now! Add another variable into the mix. Will these kids ever get a break?

 

btw...when did he start school? Maybe the stress of starting school, lack of sleep by changing schedule, exposure to other things are adding to it too. There's so much being thrown at him right now!

[Kayanne]

Fixit, when we spoke last night, you said your son was sucking on his shirt a lot...and I didn't think to tell you that I have read that that is a reaction to red dyes until I read this thread today...but I can't remember where I read it...I think it was on the ADHD forum here, and I don't have time to look for it.

 

Anyone else care to post a link or share what they know about dyes?

 

Also, I remember the z packs that I took last year and they were white pills. I know I have read that other parents have requested the dye free version of azith and gotten it...I would try another pharmacy. I gave up on all the big chain pharmacies. There is one near me that is locally owned, and been around since the 1960's, and I go there for everything.

[Stephanie2]

Couple thoughts here. First, I was a little concerned about azith causing clostridia over time in your son since he has past history of yeast/bacteria. This is something that Rossignol and I discussed recently. Azith will not fight clostridia, but Augmentin will (so will vancomycin, but why not use augmentin since it fights strep and clostridia?). He says that clostridia mimics strep in many ways, including tics. When is the last time you had an OAT test?

 

Also, did Scott ever tell you about the "motrin protocol"? He said when symptoms ramp up, start motrin, every 3-4 hours while awake, for 3 days. May have a lasting effect on inflammation.

 

Last, take a deep breath. I KNOW the rollercoaster STINKS (to keep in clean!!), but try to come to some sort of an acceptance in what you are dealing with. Autoimmune disorders are very hard to manage and they require constant upkeep. That's not to say that you can't acheive great control and maintain him there much of the time. I think it is a learning curve for all of us. What sets the child off? What helps him get back on track? These are the things you learn along the way. But for some kids there are lots of blip along the way. I would suggest some serious stress management b/c most likely you will be dealing with this illness on some level for a few more years. Since we are friends, I feel like I can be honest. You remind me of myself when I am not on Lexapro!! This is a hard thing to manage without a little help! I started Lexapro 6 months after my son's first exacerbation b/c it just depleted me so much! I hated that I had to turn to meds, but I found that it numbed me enough to think clearly and just function day to day. When I say "numbed" me, I don't mean that I feel no joy, I just mean that I feel less sadness/anger over the whole darn thing. I am less "affected" when the #### hits the fan.

 

Don't mean to be "in your face" about your stress!! You have every right to be downright PO'd, but I think your brain needs a break!!!!

 

I hope things improve for you! I really think you need an OAT test and maybe a switch of meds! When DS5 last "crashed" on azith, I switched him to augmentin and he was back on track in 3 days.

[philamom]

Fixit, when we spoke last night, you said your son was sucking on his shirt a lot...and I didn't think to tell you that I have read that that is a reaction to red dyes until I read this thread today...but I can't remember where I read it...I think it was on the ADHD forum here, and I don't have time to look for it.

 

Anyone else care to post a link or share what they know about dyes?

 

Also, I remember the z packs that I took last year and they were white pills. I know I have read that other parents have requested the dye free version of azith and gotten it...I would try another pharmacy. I gave up on all the big chain pharmacies. There is one near me that is locally owned, and been around since the 1960's, and I go there for everything.

 

My daughter is currently on Azithromycin 250mg (white tablets) manufactured by SANDOZ. A bottle of 30...from Rite Aid.

[mom md]

We are close...probably 97%. We are trying the gluten free diet to see if we can get the last three percent. We go tomorrow to come up with our next gameplan. We are doing so well and his doctors want to keep him here. I think they want to do IVIG every 3-6 months. We are 5 months out now so I think every 6 might work.

I can honestly say we were 99.9% after plasmaphoresis. It was immediate too. I do not regret it. We relapsed 4 months later but not to our previous level. I think the IVIG may be our maintenance. Our neurologist thinks this will be lifelong and we will always be "looking over our shoulder" for signs. Our immunologist thinks if we can be aggressive puberty may be rough but the immune system seems to reset. I hopeand pray she is right.

Last fall when we relapsed and were awaiting IVIG we keep my son on continuous steroids for two months and then tapered him for two more months. I would see if you could get steroids until you can see Latimer. It is not a good long term solution at all but it can buy you some time. I can only speak from our experience but we did allergy shots for only two weeks (while on steroids) and it was clear they were making him worse. Doing allergy shots in patients with autoimmune diseases is risky. It can stimulate the immune system. I will never try it again.

I also can't remember where you live...if it is atlanta let me know because I have some new doctor info down there and I can't remeber which parent was looking.

If you can't get steroids I would give him Motrin in the mornings before school. It seemed to help some for us.

[smartyjones]

but today at school the oppositional thing kicked in...got in trouble with teacher for removing his name tag off his desk...i asked him why several times, he said he just didn't want it there..the teacher warned him 3 times....what the heck is that...i said do you think i get everything i want..do you think i want to do the dishes, blah , blah

 

fixit - i'm not sure if this will be helpful for you or not b/c i know you are stressed about what decisions to make with meds. . .

i very much fluxuate in my ability to calmly, rationally attempt to see what my son is thinking b/c it is so frustrating to be a part of at times.

 

much of my son's issues are around ODD behaviors. i think this is what is seen on the surface. i believe what is underneath is heart-breaking.

 

he can be controlling of his brother. i believe someone (LLMD-?) posted recently that she learned at the OCD conference of a child who was controlling of his sibling b/c he had thoughts that if she did certain things she would die. recently, i believe my son had an intense herx-like reaction to an anti-viral which resulted in textbook, contamination food issues. i believe he was thinking he would get very ill and/or die if he ate something that had touched anything else - anything - like the inside of the food wrapper itself. i think this also transferred to anyone else eating something someone else had touched - even the outside of the container. so -- the behavior appeared to be a spoiled brat freaking out b/c someone was going to eat something that he rejected for no reason at all. however, i believe he was petrified something bad would happen to that person for eating that. luckily for us, that was a short-lived scenario.

 

most of his OCD seems to be/have been in the 'just right' area. it has taken, and still takes, much for me to understand what this means. he does not seem to have complicated webs of thoughts like i just explained, that is generally thought of as OCD. it's just not the way it should be but it still can produce the same intense reaction as if someone were going to die. to others, it appears that he just wants his own way just because he does and is being a brat.

 

perhaps the name tag thing is along these lines - ? for whatever reason, maybe one he does not even know, the name tag was troublesome. no warnings or rational thoughts can compete with the idea in his mind that it's just not right. therefore, he just can't comply with what the teacher wants. it's not that he doesn't want to comply, he really can't. at the OCD conference, someone spoke about this -- how can the child comply with your rules when they have so many of their own rules and regulations that govern them, and their's take precedence -- not so much by their choice, but by an irrational need.

 

yes, the key is medical treatment to make it better. but, i've found that i need many coping mechanisms also. we use the repeating from the explosive child that seems to be helpful. sometimes, it forces my son to reevaluate and see that what he thought was so very important, really has no basis. we seem to have gotten to the point where he can tell me, "there's no reason", "there's a reason but i can't explain it", "there's a reason that no one can ever, ever know"(during the most traumatic time). so that seems to help me gauge where he's at and have some level of understanding for it.

 

good luck!

[Fixit]

but today at school the oppositional thing kicked in...got in trouble with teacher for removing his name tag off his desk...i asked him why several times, he said he just didn't want it there..the teacher warned him 3 times....what the heck is that...i said do you think i get everything i want..do you think i want to do the dishes, blah , blah

 

fixit - i'm not sure if this will be helpful for you or not b/c i know you are stressed about what decisions to make with meds. . .

i very much fluxuate in my ability to calmly, rationally attempt to see what my son is thinking b/c it is so frustrating to be a part of at times.

 

much of my son's issues are around ODD behaviors. i think this is what is seen on the surface. i believe what is underneath is heart-breaking.

 

he can be controlling of his brother. i believe someone (LLMD-?) posted recently that she learned at the OCD conference of a child who was controlling of his sibling b/c he had thoughts that if she did certain things she would die. recently, i believe my son had an intense herx-like reaction to an anti-viral which resulted in textbook, contamination food issues. i believe he was thinking he would get very ill and/or die if he ate something that had touched anything else - anything - like the inside of the food wrapper itself. i think this also transferred to anyone else eating something someone else had touched - even the outside of the container. so -- the behavior appeared to be a spoiled brat freaking out b/c someone was going to eat something that he rejected for no reason at all. however, i believe he was petrified something bad would happen to that person for eating that. luckily for us, that was a short-lived scenario.

 

most of his OCD seems to be/have been in the 'just right' area. it has taken, and still takes, much for me to understand what this means. he does not seem to have complicated webs of thoughts like i just explained, that is generally thought of as OCD. it's just not the way it should be but it still can produce the same intense reaction as if someone were going to die. to others, it appears that he just wants his own way just because he does and is being a brat.

 

perhaps the name tag thing is along these lines - ? for whatever reason, maybe one he does not even know, the name tag was troublesome. no warnings or rational thoughts can compete with the idea in his mind that it's just not right. therefore, he just can't comply with what the teacher wants. it's not that he doesn't want to comply, he really can't. at the OCD conference, someone spoke about this -- how can the child comply with your rules when they have so many of their own rules and regulations that govern them, and their's take precedence -- not so much by their choice, but by an irrational need.

 

yes, the key is medical treatment to make it better. but, i've found that i need many coping mechanisms also. we use the repeating from the explosive child that seems to be helpful. sometimes, it forces my son to reevaluate and see that what he thought was so very important, really has no basis. we seem to have gotten to the point where he can tell me, "there's no reason", "there's a reason but i can't explain it", "there's a reason that no one can ever, ever know"(during the most traumatic time). so that seems to help me gauge where he's at and have some level of understanding for it.

 

good luck!

 

Thanks..i am going to print this and take it to the teacher..

i'm trying to make an apt...i spoke with the principal a couple of weeks before school started...

Ds does love school....and knowing him and what happend it is just what you are saying

what does odd stand for?

[Fixit]

Couple thoughts here. First, I was a little concerned about azith causing clostridia over time in your son since he has past history of yeast/bacteria. This is something that Rossignol and I discussed recently. Azith will not fight clostridia, but Augmentin will (so will vancomycin, but why not use augmentin since it fights strep and clostridia?). He says that clostridia mimics strep in many ways, including tics. When is the last time you had an OAT test?

 

Also, did Scott ever tell you about the "motrin protocol"? He said when symptoms ramp up, start motrin, every 3-4 hours while awake, for 3 days. May have a lasting effect on inflammation.

 

Last, take a deep breath. I KNOW the rollercoaster STINKS (to keep in clean!!), but try to come to some sort of an acceptance in what you are dealing with. Autoimmune disorders are very hard to manage and they require constant upkeep. That's not to say that you can't acheive great control and maintain him there much of the time. I think it is a learning curve for all of us. What sets the child off? What helps him get back on track? These are the things you learn along the way. But for some kids there are lots of blip along the way. I would suggest some serious stress management b/c most likely you will be dealing with this illness on some level for a few more years. Since we are friends, I feel like I can be honest. You remind me of myself when I am not on Lexapro!! This is a hard thing to manage without a little help! I started Lexapro 6 months after my son's first exacerbation b/c it just depleted me so much! I hated that I had to turn to meds, but I found that it numbed me enough to think clearly and just function day to day. When I say "numbed" me, I don't mean that I feel no joy, I just mean that I feel less sadness/anger over the whole darn thing. I am less "affected" when the #### hits the fan.

 

Don't mean to be "in your face" about your stress!! You have every right to be downright PO'd, but I think your brain needs a break!!!!

 

I hope things improve for you! I really think you need an OAT test and maybe a switch of meds! When DS5 last "crashed" on azith, I switched him to augmentin and he was back on track in 3 days.

 

just lost long stinken note i wrote

long and short i agree,,,,i need meds...but mad because i shouldn't if docs listened years ago...i was a happy, fun person 1 1/2 years ago...really!!!(cranky when hungry)

cant get around idea of maintanence...i want a magic eliquisoure!!!(sp)i just want to live a life w/o wander who washed there hands a bowling lane(no one) and who is sneezing, coughing w/o covering etc..every minute of being "ON"..no off option!!!

 

abx..goint to find dye free, if not try new pharmacey...then switch to aug..

refound info not to take calcium with zith,,does that include milk..and that includ other abx's

 

will try mortin this weekend..dans have such cool secret handshake tricks!!!(just regular body dose??)

 

much love

Edited August 17, 2010 by Fixit

[Fixit]

We are close...probably 97%. We are trying the gluten free diet to see if we can get the last three percent. We go tomorrow to come up with our next gameplan. We are doing so well and his doctors want to keep him here. I think they want to do IVIG every 3-6 months. We are 5 months out now so I think every 6 might work.

I can honestly say we were 99.9% after plasmaphoresis. It was immediate too. I do not regret it. We relapsed 4 months later but not to our previous level. I think the IVIG may be our maintenance. Our neurologist thinks this will be lifelong and we will always be "looking over our shoulder" for signs. Our immunologist thinks if we can be aggressive puberty may be rough but the immune system seems to reset. I hopeand pray she is right.

Last fall when we relapsed and were awaiting IVIG we keep my son on continuous steroids for two months and then tapered him for two more months. I would see if you could get steroids until you can see Latimer. It is not a good long term solution at all but it can buy you some time. I can only speak from our experience but we did allergy shots for only two weeks (while on steroids) and it was clear they were making him worse. Doing allergy shots in patients with autoimmune diseases is risky. It can stimulate the immune system. I will never try it again.

I also can't remember where you live...if it is atlanta let me know because I have some new doctor info down there and I can't remeber which parent was looking.

If you can't get steroids I would give him Motrin in the mornings before school. It seemed to help some for us.

 

Thanks mommd...yes, if you could give me some contacts that would be great!!!!

great info...thanks for sharing....

 

were the allergy shots after or before ivig....i'm leaning to try..even though you had this experience..

ds allergies are just so bad...and i do hear congestion now and spring will s(*&&^^!!!

we have not had a spring in 7 years w/o an onset....

 

maybe if i try now..if i need the big guns(ivig,pex) they will clean up any mess....

Or did ivig help your ds allergies????????? that would be huge!!!!!!..

 

ps..last night we regained some of our loss...not sure how i felt about this morning..i can usually tell by how the moring starts?!?!?

[tired mom]

I wish I had answers for you and know by your words the heartache you feel. It always seems we go 2 steps forward and one back. We leave a panda's specialists office feeling on cloud nine and retreat back to our homes still searching for answers and taking matters in our own hands. Maybe you should consider removing his tonsils especially if they r on the large side. When I had my dd's removed at first the ent did not seem to think they looked too bad, but I pushed to have them removed and he came out ot surgery shaking his head and telling me what a mess they were. Sometimes the back of them are all pocketed and that is where the strep hides and antibiotcs won't touch it.