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If symptoms started 5 yrs ago, and no diagnosis since, can antibiotics


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I read through many posts and it seems that most kids on abx and/or steroids were diagnosed and treated fairly quickly after pandas symptoms started. Am I wrong? My dd's tics started almost 5 yrs ago (had strep and impetigo 4-7 months prior to symptoms coming out)and the idea of pandas was dismissed by pediatrician since aso was normal. Here were are 5 yrs later and finally trying to treat what I THINK is pandas through a great doc that is willing to help. We are doing omnicef now (gave up on zith after short time since no improvement and possible worsening of symptoms)and still nothing. Can it even help now after this long? Is it even possible to still have an active infection after this long? Sorry if it sounds silly but I am new to this and trying to figure it out. I get that if it has gone into autoimmune mode then steroids would be the better choice.

 

Has anyone else jumped in late in the game like me after your child has had symptoms for years and then tried treating with this protocol and had success? I am just not sure I should be going down this road anymore. Any advice?

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Keeptrying --

 

Well, we were SIX years out from our DS's OCD diagnosis and yes, PANDAS treatment has still helped tremendously. We, too, had asked about PANDAS when the OCD diagnosis was first made at age 6 and were waved off . . . not because they tested him for anything, but because our doctors didn't believe PANDAS to be a valid condition.

 

We began antibiotics almost exactly 6 years after the OCD dx, and he responded very well initially, with a definite slowdown of the pace of the positive impact over time, but definitely still a measurable impact. We're now coming up on our one year anniversary of abx and considering tapering, but, to some extent, we're afraid to mess with a "winning combination" of all the treatment components we've cobbled together over the last year.

 

That being said, I still personally think that perhaps for some of us who came belatedly to the PANDAS party, there may be some organic changes to the brain or, at the least, behaviorally-ingrained issues that it will take more than antibiotics to set aside. So we load up our arsenal with weapons of all ilks: abx, therapy, supplements, and, in our case, a low dose SSRI, as well.

 

We don't have tic behaviors, however, and from everything I've read over the last year or so on this forum, it seems as though tics might be one of the PANDAS behaviors that can take the longest to eliminate. I'm sure some others will chime in here.

 

Good luck!

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We're in the same boat. My son is 13 and was dx with OCD and bipolar at 7. Now we think it was probably Pandas. I can't really answer your question, but my son just finished 30 days of amoxicillin a week ago. A few days after finishing, his tics really ramped up. I'm not sure if they got better with amoxicillin, I just know that they've gotten noticeably worse since going off of it. This if further complicated by the fact that at the same time he had a new stressor (going on a 3-day camping trip with school) so I can't say for sure that it was going off the antibiotics that increased his symptoms. I still don't feel like we've got the right doctor or are following the best protocol yet, but I'm going to keep pushing to follow what I understand works best (Augmentin XR or Zythromax.)

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Hi- It seems like I have been here forever, even though it has been less than 2 years. There are so many new faces :( It always breaks my heart a little when I see another family suffering.

 

That being said- unfortunately, for most, antibiotics are not a quick fix for pandas. If that were the case, there would be no need for this forum. My girls were initially (first episode- diagnosed fairly quickly) helped by antibiotics- but not a normal course- over 30 days of daily zithromax. Both of them initially remitted with this Tx. However for each, a subsequent episode was not helped by antibiotics. It took steroids and plasma pheresis.

 

I think it may not be a factor of how long they have been sick (I do agree with Mom that some behaviors are sticky), but that lots of kids are not immediately responsive to antibiotics. Some kids respond to abx quickly, others have taken up to a year, some respond to ivig, others need multiple ivigs, etc. THis is the hardest part about pandas- figuring out what works for your kid (finding a doc willing to do that), and then being flexible enough to try something else if that stops working.

 

This has become all about management for me. When they are good- I leave it alone. If something flares up, we increase the abx, add motrin, and do steroids if needed, if we enter crisis we try to get some serious intervention.

 

Another thing that we don't often mention, but I think most of us agree on, is time. Time is a factor in the healing equation that I don't think can be removed. My kids had fairly agressive treatment, but it still is taking time to heal. (that being said- if the general trend is not positive, I don't think you have found your answer).

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my oldest son was diagnoised with OCD, TOURETTES, ANXIETY, etc at the age of 8. I too asked about PANDAS and was told there was no way he could have this. He is 15 now and 5 months ago had a huge increase in OCD, anxiety, tics went up... things were so bad he could not finish school. He had a strep test ( no sore throat) and it was positive. So we now have the PANDAS diagnosis. probably has been all theses years. He would have anxiety, increased tics, and OCD and everytime his dr. would change his SSRI. Yes like other older kids his temper, mood swings are still hard to deal with but he is in a much better place after 4 months on abx. very very mild OCD, no visable anxiety, no tics. He went back to school and is even on the football team.

 

hopes this helps you feel better. It can be harder with older kids but dont give up. There is always hope.

 

His younger brother now has symptons but we are dealing with it very early and hope we can keep it under control.

 

Robin

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We are in the same boat too. DD14 had initial overnight onset of PANDAS symptoms at age 2.9, one week after being dx with impetigo. She was diagnosed with everything but PANDAS until she was age 7 (i.e., ASD, colitis, bipolar, ADHD, etc.). Abx itself was not enough. She needed IVIg and prednisone on top of high-dose abx. Tics and violent rages were her primary symptoms and they disappeared 2 1/2 months after her first high-dose IVIg infusion. She still has some mood dysregulation and severe anxiety/OCD (scrupulocity) but at this point we are still investigating the possibility of a co-infection (e.g., Lyme, Bartonella, etc.). Too soon to say if there will be any permanent damage, but I remain hopeful. Keeptrying, I would definitely keep trying! Love your screen name.

 

Nancy

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I think you are in the same boat as a lot of us. In retrospect, I believe this started when my dd was 18mos old. She is now 8 yrs old. Signs were alot more subtle until a sudden "explosion" of symptoms in April this year. I feel that step started this all, but now it is a PITAND situation. She had H1N1 is dec 09, now in retrospect, things were slipping since that illness, not sudden, but steady decline, then 1st week April, BAM, too severe to be mistaken for anything else. Abx helped trememdously at that time, but I think when its been burning for this long (I think it was all autoimmune response, no signs of lingering infections), we felt we wanted to opt for IVIG. So we have done 2 dose, third will be next week. Finally seeing some slow progress (relapsed every time abx weaned). Best wishes to you.

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Ds's age of onset was probably 22 months of age with the eye blinking tics. Along the way came a few more tocs, speech delay, sensory issues all seperate and never together. He was diagnosed with Pandas in March of 2010. Dr K said most children who come him are 52 to 58 months post onset and it doesn't matter. If the diagnosis is correct, treatment will help.

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Just wanted to add our experience, my daughter who is now 19 but was 17 when she became ill. It was after exposure to strep, about 3 or 4 weeks later she fell ill with severe separation anxiety among other things. We did not get a dx or start treatment until she was 19, this past December. We do feel now also that with all the history we have had to give that she did have some tendencies way back around the age of 5 but nothing that she experienced throughout that time 5 –17 kept her from living her life, so her biggest exacerbation was at 17.

 

We have been treating with antibiotics since December. She continues to improve. She did not show high strep titers but did have high mycoplasma pneumoniae Igg. She has been on augmetin different strengths and also omnicef. All were helpful for her, the first augmentin she said was like she just woke up finally. She is currently on augmentin xr 1000 2 x day along with 28 days of Biaxin, she will discontinue the Biaxin once the 28 days are up and remain on augmentin for now. She has also seen improvement since adding in the Biaxin.

 

It really seems to be individual at what works for who. So far we have not done IVIG or steroids. Hoping that the antibiotics will do it for us. The other thing I will mention and dcmom mentioned this, time really seems to be a factor. My daughter has not been in school for the last 4 years. After the strep exposure which was in January, by April she was out of school, rested that spring and summer and attempted senior year for a couple of weeks before getting a cold and everything came back and made it hard for her to be in school, she did school from home online. Again in the fall ready for college and had a vaccination and seemed to spiral again, took medical leave and this year we just decided to postpone this year as she seems to be doing pretty good and really want her to heal. Please note she did not have dx or treatment until after taking medical leave last fall...so all her attempts were while she was untreated.

 

Just our experience, hope you can pull something from here to help your daughter.

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at approx 2.9-3 year old ds gets sick..fever not right..i let it go figuring just sick..(he may have thrown up once)...(sorry to repeat story again)...i have never had strep...a healthy person...i figure it will pass.....

about 2weeks the eye blink...i freak..the doc says i don't know about tic...probably transient...don't worry...but he does have strep

 

then again...sick not feeling well..a week or so goes by..in comes eye blink...i run to doc...says again idk about tic but he has strep....

 

3rd time(son still 3)...son fine, playin...just start eye blinking one day...i ask ds a bunch of questions...he finally says yes mommy my throat hurts...

take him to doc...i said doc he's ticcing and his throat hurts...do you think there is anything to strep(which was pos again) and the tics....he says "no mrs X,,,just a coincidence)!!!!!!!!!!!!!!!!!!!!!!!!! THis was 7 years ago...

 

so i started to research..i did find pandas then.ruffly 2003..

so as it would reoccur..i mean the tic would come first, then i would go to doc to find strep and get abs..

..i asked docs about pandas ..he said no such thing..never heard of it..etc..(different docs in practice..we also moved)...so i stopped asking...

thinking...i don't care if they believe...i'll get the abx..and he's better the next day..50% in 2weeks and 100 in 4(abx were traditional 10-14 day doses)

 

then at end of 05ish...ds tic changes to neck roll...post strep...this is once we cant get rid of...we change extend amox...he gets joint pain..we go to hospital..they say hes allergic to abx..change abx and give steroid burst...

he comes out of it in 6 weeks or so.....i am more upset...

IT's time to see a nuero..

of cours its gone by that time...they say transient tic...pandas isn't real

it' like i'm asking if they believe in peter pan...

this is when i started to secretly watch this site off and on...obviously..on when he was sick..off wehn not

 

so we continue to get sick about 3 times a year...continue to remit in full...

the last couple of times ds ticced...he would not swab pos..but at presentation, docs would say with his history and that throat..let's put him on abx

 

onset at 9 was the jumping thing,,,my heart sank..i knew it was going to be different this time...it's been 1 1/2 years..we are trying to find the right locker combination for ds...

i am certain this time it was myco p...a doc did give a script at onset..(we wre in fl) for cephlexan, for 10 days..

and it was almost a full year later till we saw the myco p igg and got biaxin

 

So in short/long...i jumped on it every time...i think after 15 episodes, the last being myco p..it went autoimmune....steroids do help in long run(but hasn't lasted)

 

we went to 2 more nueros in 2009...pandas not real..he has ts...F you know what..

he got so bad i went back to nuero to get rx for cholindein...

i couldn't fill....IT felt so wrong...and if i started that journey..would i be able to uncover what was working the core of the problems not the expression of the problems....

ds has had some very difficult times...the rx is pinned to my bullitin board...

too old to be filled now...but it reminds me i don't need to go there

 

doc k, t, l, b all give pandas dx

 

i've also said for years dh, who has a slight blink and nod...gets better on abx...he is adult pandas..i have no doubt as he gets strep a few times a year still..

doc just saw him yesterday..tonsils are pitted beyond belief and will be coming out soon...(ps dh whole family has history of strep related autoimmune conditions..dh only ticcer..not the other problems)

dh has been on abx for six weeks...his skin looks awesome...i am now however concerned about lupus ..

 

Ds just had his out this morning...ent didn't want to take them out..looked fine...took them out...pitted, inflamed, red, stuff on them..atnoids/and lots of mucus coming out...

 

i wish i had taken them out when he was 5, doctor mentioned...i don't know if we moved or what happened

 

i also don't know if i would have put ds on long term abx from age of 3...and from stories on board strep can still break through...

 

So what do we do with this desease???

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Hi! I have not read all the responses yet so I'm sorry if this is just repeating others experience, not sure.... But I am certain my girls got the strep that gave them Pandas when they were 12 months and 16 months old. I did not learn about pandas or get them on antibiotics (zithromax) until they were ages 7 and 8. They are not cured but SO much better. The abx really helped us. My older dd has gone on to IVIG's and my younger may get some soon too and we are going down the lyme investigation path.

 

Mine do much better on higher doses of abx but so far, our docs don't want to keep them on it and I hoard the abx as much as I can so I keep reducing it to see how they do. I'm about to increase my dd9's abx I think because she is failing and we can't do another IVIG right now.

 

Susan

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Fixit....your son just had his tonsils out this morning?? How is he doing so fr? Hard to tell on day one! :)

 

so, the ENT said they looked fine, but, when removed, they weren't??

 

correct...we saw him in august before our trip to the docs...i said i want them out..he said get a letter from you docs...

in meantime dh changed jobs..and so weird that by time hipaa cleared..i could get appt in oct/nov ...i asked if something sooner they said friday....

 

..so i said this morning no nitrixoide...they said, fine we weren't anywahy..then askied.why i said that..you don't want him to throw up...i said yah...

 

then doc meets me before surgery..i said you going to biopsy and culture...he said no just biopsy...i said could you please culture..he said ok..can you report their condition when they come out ..ok

 

comes out..both he and the nurse talked about how of course they would like that with his history with chronic infections....(oh and slime on his atnoids..couldn't get them to go back to that statement) i didn't say anything about how he didn't want to do it earlier..and make him eat words...as when he also met me preop he went on to almost say that my dh ...who he met yesterday to get tonsils out...just on presentation....i could tell he wanted to say, looked discusting!!!!!

i asked how far out are you scheduling he said 8 weeks...!!!!

 

poor kid has vocals..he's trying to surpress...i didn'w want to wait,as who knows how long this would last anyway....

spitting up/out alot of thick snot..is that normal...

 

i don't know how he'll be in the long run...but i would regret not doing it and they aren't helping hime at this point...i think it would only be a plus...

 

nurse there had her's out a couple years ago...she said its the best thing she's ever done...she doesn't get sick anymore.....

 

so i hope he sent out culture like i asked!!!!!

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My son showed first signs at age 2. He was not diagnosed until he was 11. He started treatment last Oct(augmentin 875mg - 2x/daily since Oct 2009; 1 course of steroids after exacerbation from his sister having pink eye). He has made HUGE progress. He still has a ways to go but this time last year our entire family was held hostage by his symptoms but one short year later I feel like I'm getting a son back that I never knew I had.

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My son showed first signs at age 2. He was not diagnosed until he was 11. He started treatment last Oct(augmentin 875mg - 2x/daily since Oct 2009; 1 course of steroids after exacerbation from his sister having pink eye). He has made HUGE progress. He still has a ways to go but this time last year our entire family was held hostage by his symptoms but one short year later I feel like I'm getting a son back that I never knew I had.

NVAmom, I pray we are in your shoes this time next year! I am so glad to hear that your ds is making progress. This reply struck me because of the way you said, your entire family was held hostage. I am living that right now. As a matter of fact, I have an opportunity to go out with friends this evening with all the kids and i just want to hide all of us. I am ashamed to say that. We have not gone out at all, outside of school in over a month. I have another child that is older that i know is suffering by this too. I feel so guilty to say the least. I just said to my dh today that I wish we were normal and could just go out and have pizza with friends and not have a care in the world. I feel awful that I do not handle these times well. I think I might bite the bullet and go out this evening and just let my kids have fun like they deserve. thanks for your reply. It makes me feel better knowing that there are others out there coming into this late in the game and still seeing success. I am happy for you.

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