Jump to content
ACN Latitudes Forums

Negative Titers are making me lose my mind!


Recommended Posts

I admit I only skimmed this thread, but...

 

Once the pandas is put in motion by a strep infection (which may resolve on its own before you can test it)...

 

pandas exacerbations can be caused by any immune challenge (depending on your child): virus, dental issues, vaccine, cold, etc...

 

This was noted in Swedo's original study, and is what has happened to my kids. Theoretically, if it has become an autoimmune issue- strep is no longer needed. I had a collegue of Swedo's tell me early on, not to try to track titers with episodes. Frankly, I have completely discounted titers in my kids....

Link to comment
Share on other sites

  • Replies 43
  • Created
  • Last Reply

Top Posters In This Topic

Top Posters In This Topic

If strep is up in the sinuses, it probably won't show up on a swab. I think you can ask them to swab the nose, but you can only get so high up there!

 

As for the titers, you can have an infection even without a rise in titers. What is it? Around 40% won't have a rise in titers? If step is on the skin, I don't think you'll have a rise either. I think I remember reading once on here that if you have strep for a long time, eventually the body somehow adapts to it and the titers may begin to fall even if you have the infection still. Anyone have info on that?

 

If you think there's a sinus infection and the ped won't listen, go to an ENT. Yes, they are more money, but, you won't have to pay up front and in the long run, it will be cheaper than numerous visits to the reg dr trying to figure out what is going on. Also, an ENT will give a longer script for a sinus infection.

 

My insurance is horrible too. Like you,Gina, I pay everything up front until I reach my high deductible.

Link to comment
Share on other sites

I am just trying to reconfirm also....if the strep is up in the sinuses it won't show positive on the quick test

But we are saying the titers arent rising either(same may be if its in the gut or ears etc)...but still infected somewhere and still showing symptoms per some infection, just no "medical test" is confirming it...is that correct?

 

 

Our experience is that numerous doctors (from NIH related to Children's Hospital) told us not to "bother" trying to capture titers. IF over a year (or two) you did a bi-monthly titer pull and saw a spike, THEN you may have captured the fact that titers are elevated.

 

Your child's titers may run high, they may run low, they may not be "caught" at just the right time--

 

The issue, in my opinion, is that IF OCD and TICCING are relieved by antibiotics and/or steroids then that is telling you there is an inflammation issue causing your child's neuro-psych issues.

 

Don't get hung up on the titers--Doctors who do not understand the situation are the ones getting hung up on these--

Instead, I'd document--daily, carefully, the reaction to anti-inflammatories (ie antibiotics...etc.)

Good luck,

TMom

Link to comment
Share on other sites

If strep is up in the sinuses, it probably won't show up on a swab. I think you can ask them to swab the nose, but you can only get so high up there!

 

As for the titers, you can have an infection even without a rise in titers. What is it? Around 40% won't have a rise in titers? If step is on the skin, I don't think you'll have a rise either. I think I remember reading once on here that if you have strep for a long time, eventually the body somehow adapts to it and the titers may begin to fall even if you have the infection still. Anyone have info on that?

 

If you think there's a sinus infection and the ped won't listen, go to an ENT. Yes, they are more money, but, you won't have to pay up front and in the long run, it will be cheaper than numerous visits to the reg dr trying to figure out what is going on. Also, an ENT will give a longer script for a sinus infection.

 

My insurance is horrible too. Like you,Gina, I pay everything up front until I reach my high deductible.

 

well, i figure the omnicef will clear the ear infection and a sinus infection if he has one. I just think it is interesting that he happens to get all 3 at the same time. to me that says the strep is in more than one place, OR he is harboring strep and when he gets a cold the strep is opportunistic.

Link to comment
Share on other sites

I admit I only skimmed this thread, but...

 

Once the pandas is put in motion by a strep infection (which may resolve on its own before you can test it)...

 

pandas exacerbations can be caused by any immune challenge (depending on your child): virus, dental issues, vaccine, cold, etc...

 

This was noted in Swedo's original study, and is what has happened to my kids. Theoretically, if it has become an autoimmune issue- strep is no longer needed. I had a collegue of Swedo's tell me early on, not to try to track titers with episodes. Frankly, I have completely discounted titers in my kids....

 

Well I think that is what we have going one here. I think DS has probably had PANDAS at least two years, but more likely the exacerbation that brought on the OCD wasn't the onset. Looking back he has displayed PANDAS symptoms from about 3 on. Any illness seems to make everything much worse. Would that technically make it PITANDS? I guess that is why I'm beginning to wonder if we should just buck up and go see one of the main PANDAS doctors. The last time we talked our dr. he said that the way he saw it was that if there weren't elevated strep titers, it wasn't PANDAS. I need someone who can look at the whole picture, illness history, behavior history, academic history etc. and connect the dots so we can actually start helping this kid.

Link to comment
Share on other sites

Thanks, SF Mom. First time I've ever seen documentation that ear infections can be specifically strep-related. Our DS12 had non-stop re-occurring infections from about 18 months until we finally submitted him to tympanostomy at 3.5 years. If he got a cold (virus), he'd have an ear infection (bacterial) within days!

 

Gina -- It's possible that your son's improved attitude (and apparent improvement in emotional lability) is a result of the antibiotics, even if some of the other behaviors do not seem responsive . . . yet. Isn't it possible your son caught a virus, so while the abx isn't assisting him with what that brings, it still is having some impact on the other inflammation triggers? If the virus caused congestion and fluid to build up in the ear, then, from what I recall anyway, the fluid could harbor bacteria (strep?) that would in turn cause the ear infection itself.

 

Taken from the attached article: 'Patients aged 0-18 years with AOM (Acute Otitis Media), from whom a specimen of middle-ear fluid was obtained and cultured during 1999-2003, were enrolled.

 

http://cat.inist.fr/?aModele=afficheN&cpsidt=16960644

 

It's so hard to say if the abx is responsible for certain improvements when everything else is so much worse! I did notice something this morning. Normally when you cuddle with him, if you put your arm around his middle, he starts this stomach in and out tic. This was his first tic and appeared with the OCD. Today he didn't do it. He had lots of other stuff, but that one was gone and it is the one that is always present.

 

Somebody talked about their child regressing to the age he first got PANDAS with each exacerbation. I noticed that this week DS is waking up really early again, coming into my room to cuddle and wanting to talk talk talk. I thought we had grown out of that. He started doing that really young. For about a year he's been sleeping later and staying in his room to read or play his Nintendo DS, which seems about right for a 10 year old. I'm not a morning person, so while I missed the snuggles in the morning, I have always hated the non-stop talking. He doesn't even care if you answer, he just talks.

 

He used to get soooo many ear infections as a little guy. Before we put tubes in his ears we were doing abx, a week later he'd have another one so a new abx, over and over. Finally I guess we pulled out the big guns so we could get the tubes because we were driving to the doctor every day for 5 days to get an abx shot. The tubes helped big time with the ears. Then we started all over again with strep. The T & A seems to have helped that too. Interestingly, I just listened to the episode on Autism One Radio with Dr. K. He said the operation seems to help for about a year, then it doesn't. We're at 1 year and 3 months. Whether it is strep or just a virus, overall he doesn't get sick as often as he used to. But when he does I know we will definitely see an increase in symptoms.

 

Definitely possible he has a virus and some bacteria took advantage of that. His ear feels much better now and his head is draining. He told me his throat hurts again, but it looks like it is drainage from the head, especially now that he has a cough to go with it.

 

Fun times.

Link to comment
Share on other sites

simplygina,

I can relate to alot of your post and the experience/symptoms you describe. I found it interesting that you said you did a round of augmentin with a couple days break in between and then when you restarted, an increase in symptoms started. I had that same experience, only it was azith. I can't say there was any remarkable improvment on the first round, but during a two day break, I felt he was almost doing better with no abx those days, and then the next pill started a huge increase in vocal, it was off the wall increased......can't say I know what that was about, but I opted not to continue, and it did calm down the next day.

 

 

What I find kind of strange tho, and maybe the others could comment, if your boy was getting sick or you think he had an infection coming, and that was why the tics increased, why would that happen while on abx? tht part I don't understand, when I hear some report that the child gets strep or other even during the abx. isn't the abx supposed to do just that -- prevent strep or infection?

 

I feel I have to say that for me, I feel that if things are worse on the abx, then maybe it isn't working. I know some think an improvement in one area means success, but I don't know, I'm still out on that one, as we all know these symptoms all wax and wane, come and go. really hard to gauge if it is because of the abx or not.

 

 

-Faith

Link to comment
Share on other sites

simplygina,

I can relate to alot of your post and the experience/symptoms you describe. I found it interesting that you said you did a round of augmentin with a couple days break in between and then when you restarted, an increase in symptoms started. I had that same experience, only it was azith. I can't say there was any remarkable improvment on the first round, but during a two day break, I felt he was almost doing better with no abx those days, and then the next pill started a huge increase in vocal, it was off the wall increased......can't say I know what that was about, but I opted not to continue, and it did calm down the next day.

 

 

What I find kind of strange tho, and maybe the others could comment, if your boy was getting sick or you think he had an infection coming, and that was why the tics increased, why would that happen while on abx? tht part I don't understand, when I hear some report that the child gets strep or other even during the abx. isn't the abx supposed to do just that -- prevent strep or infection?

 

I feel I have to say that for me, I feel that if things are worse on the abx, then maybe it isn't working. I know some think an improvement in one area means success, but I don't know, I'm still out on that one, as we all know these symptoms all wax and wane, come and go. really hard to gauge if it is because of the abx or not.

 

 

-Faith

Sometimes I feel drained from trying to find the strep. My ds9 used to have LOTS of strep. He doesn't get it as much the last three years after tonsillectomy. He did have the strep smell thing I wrote about in January, and it went away after omnicef, but the smell came back last week, so his doc gave him a z-pack and ordered a sinus x-ray. The x-ray was negative and the smell went away again. Curious to see if it will come back (the smell). I had a antiDNase B done on him few weeks ago preparing to see Dr.K as he said do one and it was negative. During this time his tics are worse.

 

So, sometimes we get a lot of strep and sometimes we don't. We haven't had documented strep in several months. But my ds9 has a girl in his class who was + for strep 3 times in the last two months. Also, I would like to add, that in our case my ds symptoms will be triggered with strep or some but not all viruses. If strep triggers his symptoms, I do not notice that getting him on antibiotics right away decreases the symptoms. With my son it is like the strep "triggers" something and once it is triggered it has to take its course. We have not done long term antibiotics though.

Link to comment
Share on other sites

What I find kind of strange tho, and maybe the others could comment, if your boy was getting sick or you think he had an infection coming, and that was why the tics increased, why would that happen while on abx? tht part I don't understand, when I hear some report that the child gets strep or other even during the abx. isn't the abx supposed to do just that -- prevent strep or infection?
Antibiotics will help prevent strep, but it is not 100% effective. Like with t and a. T and a is suppose to lower your chance of strep by 80%. Well, we have kids on here who continue to have chronic strep after t and a.If your child has a virus while on antibiotics that could make PANDAS symptoms surface. Same thing with allergies, stress, and other infections (like Mycroplasma P). If you are on Augmentin and catch Mycro P, the abx won't help or prevent that.

 

 

 

I feel I have to say that for me, I feel that if things are worse on the abx, then maybe it isn't working. I know some think an improvement in one area means success, but I don't know, I'm still out on that one, as we all know these symptoms all wax and wane, come and go. really hard to gauge if it is because of the abx or not.

 

I don't remember, did you ever do blood tests for Lyme, Faith?

Link to comment
Share on other sites

vickie,

yes I did do that recently. showed nothing, all negative.

 

I have a feeling that I may hve been dealing with whatever for too many years, and so abx may just not be something that will ever work for us.

 

reactive,

you say you havn't had the strep there for some months, but here its more like years, lol. well, tht I know of anyway. so here, I don't think strep is the thing for us, or at least its not anymore. I just don't know.

Link to comment
Share on other sites

Well as I've posted before, my son was taking Augmentin for 10 days, some improvement, then off for 4 days, then back on. 2 days into the second round his tics and ocd ramped up BIG TIME! Sunday he started complaining of a sore throat. Tuesday morning he complained of his ear feeling clogged up, and he now had congestion in his head. We got in to see the doc and he confirmed an ear infection. He thought the throat looked fine, and it did look better than when I looked at it on Monday. He said he didn't know about a sinus infection but since DS wasn't complaining he didn't think so. I keep reminding him that DS NEVER says it hurts, he just says it feels weird or feels plugged up. He asked if things were improving on the Augmentin and I said they weren't since DS got sick it was all much worse. He could see the visible ticcing and evening up. He gave me Omnicef and we decided to run lyme, myoplasma and I saw ASO and AntiDNAase on the lab form when I checked it as well. We swabbed the throat and he confirmed he would culture it as well.

 

Two days later the ticcing and OCD as the worst it has ever been. He usually cycles through OCD issues and tics. Right now he has every tic I've ever seen and every OCD issue I've ever seen as well. Luckily, his mood is fantastic. He's patient and nice and not at all oppositional. His handwriting is horrendous and I sat down with him to do a basic math sheet last night and he literally could not do it. It took forever. Not only could he not remember his times tables, but he was distracted by EVERYTHING!!! I was doing my best to be patient but I was getting really frustrated by how long it was taking and the simple mistakes he was making. But, again, his mood surprised me. We have had some serious upsets during homework and usually my lack of patience would have started a battle. Last night he just looked at me and said, "You're feeling pretty impatient about how long this is taking, huh?". Which of course helped me suck it up and help him finish it up.

 

Most the results of the blood draw came back today.

 

Test results back so far:

Rapid strep: negative (not surprised)

Beta Strep Group A Screen: negative (this surprised me)

Lyme Borrelia Burgdorferi Abs: .44 Normal

Mycoplasma: Igg .01 Igm .07 Normal

 

I was so hoping the culture would come back positive. I think it is interesting that the last few times DS had an ear infection, sore throat and sinus congestion he tested positive for strep. When I was a kid and got strep, my mom always knew it was strep because we didn't have congestion, just a sore throat. I really think the strep spreads to his ears and sinuses. But this time, I think the Augmentin may have cleared the strep in the throat, but not ears or sinuses. Is that possible? But you can't swab ears and sinuses.

 

Unless his strep titers come back elevated I still haven't established a direct relationship between exacerbations and strep. I guess I have established an exacerbation during an illness, but for my doctor that isn't enough.

 

I'm just frustrated because I don't understand why some kids don't show elevated titer responses. how on earth do you know for sure if it is PANDAS then? Did I jump the gun and miss our connection because I put him on abx? I'm not sure how I'm ever going to establish the strep connection.

 

If his strep titers don't come back elevated, I'm going to seriously go crazy.

 

We may just end up using our frequent flyer miles to go see Dr. T. I know my crappy insurance won't pay for it. I'm tired, I'm confused and I'm broke. I honestly don't care if its PANDAS or TS/OCD. I think he fits the PANDAS profile to a T, but I just want a doctor that knows what to do if it is, to agree with me or tell me it's not. I don't want to have to educate and prove it.

 

I need a vacation without kids where I can just forget about all of this for awhile.

 

PM me and we will set up a time to talk. No charge. There may be a few tests to do if strep tests are negative, like Lyme with Western Blot and some basic immune testing.

Save the $400 you would spend on travel costs to come see me and spend it on the Cunningham test.

Then we will be able to use state-of-the-art testing to determine if this is infectious or not.

 

Dr. T

Then we can determine if it might be infectious or not

Link to comment
Share on other sites

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

 

-Faith

 

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

 

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

Link to comment
Share on other sites

The issue, in my opinion, is that IF OCD and TICCING are relieved by antibiotics and/or steroids then that is telling you there is an inflammation issue causing your child's neuro-psych issues.

 

Don't get hung up on the titers--Doctors who do not understand the situation are the ones getting hung up on these--

Instead, I'd document--daily, carefully, the reaction to anti-inflammatories (ie antibiotics...etc.)

Good luck,

TMom

 

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

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...