Symptoms worse after starting abx

[JJMom39]

First time posting here and am so grateful to have this forum as a resource! My son was diagnosed with PANDAS last week and has been on a generic of Omnicef (cefdinir) for 5 days. Some of his PANDAS symptoms (rage, tantrums) have returned or increased, and we are dealing with what seem to be motor tics. This is a new manifestation for him. When I spoke with his doctor today she said she was not surprised that symptoms had increased 1 day in to abx treatment, but she was not as certain about why they would still be intensified. I am trying to figure out if this is a herx reaction, or if there is something else going on. I have tried to piece together information I have read here about herx reactions, but I am confused about information that says these reactions happen with Lyme, mycoplasma, bartonella, babesia and a few other bacterial infections. Does this mean that herx reactions do not happen with strep? As far as I know my ds does not have any of these other infections, but he has not been tested for them. I understand that herx reactions can happen with yeast die-off also so maybe that is what is happening? As far as I know he does not have a yeast issue, but this has not been tested either. Maybe one does not need to have a yeast issue to have a problem with yeast die-off though? To complicate matters he is also taking Enhansa (a curcumin supplement) that can have the side effect of yeast die-off. To further complicate things, his nighttime anxiety returned prior to starting the cefdinir. About a month before that he was on an amox-clav abx for a staph infection in his finger. We did not know at that time that he has PANDAS. His inattention improved while on that med. He stopped taking it after 10 days because the infection in his finger was gone. A couple of weeks later his nighttime anxiety returned (after being absent for many months) and his inattention went through the roof. I'm wondering if being on the amox-clav helped some underlying strep infection and that is why his inattention improved, and then when he was no longer on it the infection acted up again so his anxiety returned and the inattention escalated. I am just trying to figure out why we are having an escalation in some symptoms and now the new symptom of tics. Any input would be so much appreciated!

[peglem]

Omnicef should not cause yeast die off. 4 years ago, my daughter was put on omnicef while awaiting tonsillectomy. I think it hurt her tummy or something, but it worsened her behavior. Zithro works well for her instead. Maybe you should try the augmentin again, if it helped before. Finding the right abx is an individual thing, but many on here seem to do well with either zith or augmentin. Have you tried prednisone to reduce inflammation?

[kferricks]

Wow. I was going to post similar except my dd was on Omnicef and the doc switched her to azith and put her on another taper. 3 days later and well this weekend was not good at all. I thought I was almost back to the begining of all this. Scared me bad. Today was a bit better, and eyes had color for part of the day. Tonight is another story. I'm just hoping that it is the meds working and that soon she will be at least back to where she was..

Sorry I'm not any help. Just letting you know that I'm there with you. Have you tried giving him ibuprofin?

[pixiesmommy]

My thoughts-

 

Is it dye-free? It could be a dye or something else besides the med making him react. You can get meds in white tablets usually, or if not, a compounding pharmacy can help w/getting pure meds without dye or gluten, etc.

 

Ibuprofen, Benadryl, epsom salt baths can help w/herx and inflammation.

 

We went through several abx before we found one that worked, and I think most of us would say that here. Don't give up yet. I would also absolutely do the Lyme testing. We did the Igenex one and found my daughter was ++ on a lot of bands, and this is one year after her hdIVIG and a year on antibiotics. She also just came back positive for HV6 and Mycoplasma, also while still on antibiotics.

 

Hugs.

[LNN]

First, welcome to the forum and congratulations on your research skills! Many kids go much longer before their parents are able to connect dots and recognize that the behaviors are illness-triggered. So you're ahead of the curve, even tho I'm sure it doesn't feel that way.

 

Second, you raise some good questions and before you tie yourself into a pretzel, I'd recommend some blood work for the following:

1. ASO and Anti-DNase B strep titers

2. Western blot for lyme (a negative result won't rule out lyme but a positive one would save you from additional testing)

3. C3a and C4a immune complexes (these are early markers of lyme and might be covered by insurance - http://www.survivingmold.com/docs/Resources/Shoemaker%20Papers/Lyme_acute_C4a_1_08_glovsky.pdf)

4. C3d immune complex - a rise in this can tell you if there's a chronic infection and elevated complexes can cause false negatives on other tests (tho if you're doing the C3a and C4a, this one could probably be skipped - as far as I know, it isn't a test for a specific antigen)

5. Candida albicans blood test (for yeast)

6. mycoplasma

 

You can also ask for an IG panel to measure the overall health of the immune system, but your doctor may start to feel that you're playing doctor here...so this might be saved for a trip to a specialist - depends on your doctor). Any positive/indeterminate results of #2 & #3 will tell you if you should pursue an Igenex basic panel for lyme ($240 out of pocket but a portion is often reimbursed if you submit your own claim to insurance co. after the fact). Based on your child's rage/tantrum symptoms, any positive or indeterminate lyme bands might warrant follow-up with tests for bartonella or other tick-borne infections. But that can come later. Most kids will have both lyme (Borrelia burgdorferi) and a co-infection. It's far less common to have bartonella without lyme, but possible.

 

In the meantime, continue to lobby for continued antibiotics. Once you get these lab results, if you feel that your local doctor won't be on board with this long term, you may want to make an appt. now with a specialist, as appointments can be several weeks out. There's a list of helpful doctors under the "helpful threads" section of this forum or you can contact www/ilads.org for a list of "local" LLMDs (lyme literate doctors) who are more comfortable with hunting down bacterial infections and using long term antibiotics to treat infection-triggered neuro-psych illnesses.

 

Finally, I'd highly recommend getting a few books to start working with your son on Cognitive Behavior therapy (CBT) or Exposure/Response Prevention (ERP) if there's OCD. You don't mention your son's age, but for younger kids, I'd suggest Up and Down the Worry Hill, What to Do When You Worry Too Much or What To Do When Your Brain Gets Stuck for OCD. For a really young child, I recommend Tiger Tiger Is It True (about not letting irrational thoughts take control). For you, I'd recommend Freeing Your Child from Anxiety, Freeing Your Child from OCD, Talking Back to OCD (if your child is older) or The Explosive Child (for tips on handling rages).

 

It sounds like you have good instincts and are on the right path!

 

(forgot to mention - don't forget about a good probiotic - you can do a search on "probiotic" in the upper right corner of this forum and find lots of discussions on brands, doses, etc).

Edited February 22, 2011 by LLM

[JJMom39]

Omnicef should not cause yeast die off. 4 years ago, my daughter was put on omnicef while awaiting tonsillectomy. I think it hurt her tummy or something, but it worsened her behavior. Zithro works well for her instead. Maybe you should try the augmentin again, if it helped before. Finding the right abx is an individual thing, but many on here seem to do well with either zith or augmentin. Have you tried prednisone to reduce inflammation?

We have not tried prednisone. Our dr. hasn't even mentioned this as a possibility. She uses Enhansa to address inflammation. She starts with Omnicef because of studies showing it is more effective against strep than amox. My ds is only on the Omnicef for 5 days. I asked his dr. yesterday if he should be on it for longer, and she said she wants to wait a few days and see how he does once the Enhansa kicks in. If there is not improvement then she will continue the Omnicef. 5 days doesn't sound like enough to me. I will ask her about trying augmentin. We are only 6 days into our PANDAS diagnosis so there is still so much to learn!

[JJMom39]

Wow. I was going to post similar except my dd was on Omnicef and the doc switched her to azith and put her on another taper. 3 days later and well this weekend was not good at all. I thought I was almost back to the begining of all this. Scared me bad. Today was a bit better, and eyes had color for part of the day. Tonight is another story. I'm just hoping that it is the meds working and that soon she will be at least back to where she was..

Sorry I'm not any help. Just letting you know that I'm there with you. Have you tried giving him ibuprofin?

Thank you! I did give my ds ibuprofin this morning before school. Fingers crossed he doesn't have a meltdown at school. His behavior at school has always been good, but we haven't seen tantrums and rage for a long time so I don't know what will happen.

[JJMom39]

My thoughts-

 

Is it dye-free? It could be a dye or something else besides the med making him react. You can get meds in white tablets usually, or if not, a compounding pharmacy can help w/getting pure meds without dye or gluten, etc.

 

Ibuprofen, Benadryl, epsom salt baths can help w/herx and inflammation.

 

We went through several abx before we found one that worked, and I think most of us would say that here. Don't give up yet. I would also absolutely do the Lyme testing. We did the Igenex one and found my daughter was ++ on a lot of bands, and this is one year after her hdIVIG and a year on antibiotics. She also just came back positive for HV6 and Mycoplasma, also while still on antibiotics.

 

Hugs.

Thank you for all the suggestions. As far as I know his omnicef does not have dye, but I will double check. I do not know about gluten so will check on that also. It hadn't occurred to me that there might be gluten in the med....so much to think about and remember!

I am overwhelmed by the possibility of all these other bacterial infections. I knew a tiny bit about PANDAS before our diagnosis but nothing about all the other infections that cause neuro-psych illnesses. This is probably a dumb question but would there be symptoms of these other bacterial infections besides the neuro-psych ones? I know my ds has had strep once, and maybe other times that were asymptomatic, but there have not been other illnesses that were symptomatic except for repeat bouts of croup. When I mentioned some of the other infections to my dh he said "no way, there have never been tick bites." The tick-related infections totally confuse me. Maybe if I knew what some of the symptoms were something would ring a bell, but then again if all these things can be asymptomatic that would not make a difference. And the fact that a child can have multiple infections, even while on antibiotics, scares me to death.

[JJMom39]

First, welcome to the forum and congratulations on your research skills! Many kids go much longer before their parents are able to connect dots and recognize that the behaviors are illness-triggered. So you're ahead of the curve, even tho I'm sure it doesn't feel that way.

 

Second, you raise some good questions and before you tie yourself into a pretzel, I'd recommend some blood work for the following:

1. ASO and Anti-DNase B strep titers

2. Western blot for lyme (a negative result won't rule out lyme but a positive one would save you from additional testing)

3. C3a and C4a immune complexes (these are early markers of lyme and might be covered by insurance - http://www.survivingmold.com/docs/Resources/Shoemaker%20Papers/Lyme_acute_C4a_1_08_glovsky.pdf)

4. C3d immune complex - a rise in this can tell you if there's a chronic infection and elevated complexes can cause false negatives on other tests (tho if you're doing the C3a and C4a, this one could probably be skipped - as far as I know, it isn't a test for a specific antigen)

5. Candida albicans blood test (for yeast)

6. mycoplasma

 

You can also ask for an IG panel to measure the overall health of the immune system, but your doctor may start to feel that you're playing doctor here...so this might be saved for a trip to a specialist - depends on your doctor). Any positive/indeterminate results of #2 & #3 will tell you if you should pursue an Igenex basic panel for lyme ($240 out of pocket but a portion is often reimbursed if you submit your own claim to insurance co. after the fact). Based on your child's rage/tantrum symptoms, any positive or indeterminate lyme bands might warrant follow-up with tests for bartonella or other tick-borne infections. But that can come later. Most kids will have both lyme (Borrelia burgdorferi) and a co-infection. It's far less common to have bartonella without lyme, but possible.

 

In the meantime, continue to lobby for continued antibiotics. Once you get these lab results, if you feel that your local doctor won't be on board with this long term, you may want to make an appt. now with a specialist, as appointments can be several weeks out. There's a list of helpful doctors under the "helpful threads" section of this forum or you can contact www/ilads.org for a list of "local" LLMDs (lyme literate doctors) who are more comfortable with hunting down bacterial infections and using long term antibiotics to treat infection-triggered neuro-psych illnesses.

 

Finally, I'd highly recommend getting a few books to start working with your son on Cognitive Behavior therapy (CBT) or Exposure/Response Prevention (ERP) if there's OCD. You don't mention your son's age, but for younger kids, I'd suggest Up and Down the Worry Hill, What to Do When You Worry Too Much or What To Do When Your Brain Gets Stuck for OCD. For a really young child, I recommend Tiger Tiger Is It True (about not letting irrational thoughts take control). For you, I'd recommend Freeing Your Child from Anxiety, Freeing Your Child from OCD, Talking Back to OCD (if your child is older) or The Explosive Child (for tips on handling rages).

 

It sounds like you have good instincts and are on the right path!

 

(forgot to mention - don't forget about a good probiotic - you can do a search on "probiotic" in the upper right corner of this forum and find lots of discussions on brands, doses, etc).

Wow. I had no idea how complicated all of this was going to be. At least now I have much more information and some direction so thank you! We had both strep titers done. My son's ASO was 413 and his Anti-DNase B was 302. But, he was on an antibiotic at the time of the test so his dr. said his numbers might have been higher. (He had an infection in his finger at the time so that is why he was taking an antibiotic.) His dr. routinely checks strep titers in her patients who have a history of strep and neuro-psych symptoms. She also did an ANA screen and titer and his came back positive, homogeneous/speckled pattern 1:320. I do not know if she does any of the other testing you recommended so I will ask. We have only been with her for about a month, but so far she seems like the type who is willing to go digging. If not, I will find someone else. Good to know there is a list here of helpful doctors.

When my son (age 8 now) started having horrible anxiety over 2 years ago we did take him to a psychologist for CBT. At the time no one knew why he exploded with anxiety. We used some of the books you mentioned, What to Do When You Worry Too Much and Freeing Your Child From Anxiety, and found them to be very helpful. He has never had compulsions, just an obsession/fear with the house burning down, but that has been absent for some time. Right now we are seeing a return of anxiety at night, some rage and tantrums, subtle motor tics (brand new for symptom for him), and lots of spinning, but the spinning has been around for a while.

He started taking a probiotic about 3 months ago and just last week his dr. switched him to the OrthoBiotic brand. Maybe I should increase the dose to twice per day?

[LNN]

Your DH may be right. The suggestions about lyme testing can get passionate because some of us have spent a long time and a lot of emotional and financial resources pursuing Pandas only to find out after treatment failures that our kids had either a tick-borne infection or both Pandas and lyme. The symptoms of both can overlap quite a bit. So the suggestions to rule out lyme come from a desire to help others rule it in or out to save you from some of the roller coaster ride we went on. Just be aware that a large percentage of lyme patients don't recall a tick bite or a bulls-eye rash. Some speculate mosquitoes and fleas may also contribute to infection. It's just something to consider screening for. As for other lyme symptoms, you can find lists on many lyme web sites. Things like muscle pain, brain fog, attention issues, OCD, gut issues, fever, rage - are overlaps with Pandas.

 

Try not to be too afraid of the multiple infections issue. It's the untreated infections that are more of a concern. The suggestions for testing is to help identify the right infection(s). Treatments are like a dating game. You need to match the right antibiotic with the right infection or you may get less than an optimum response. So it's germ warfare. You have to get to know the enemy and arm yourself with information. Forums are great resources, but nothing guides a doctor the way blood tests and neurological exams can. You may also want to keep a journal of symptoms, infections, unusual events...it can all blur together after a time.

 

BTW - what prompted your doctor to treat for 5 days with omnicef?

[momaine]

LLM gave you some great advice, which I would also concur with. I did want to add that my dd did better on Augmentin than anything else when we we were only treating PANDAS. She too is one of those kids who started out with only a PANDAS diagnosis but when treatments for PANDAS did not get her to 100%, with more digging, we found out that she had other infections, namely Lyme and Bartonella. It's been a long road to figure this all out and I wish we had realized some time back that western blots aren't very sensitive and can show a lot of false negatives. Now that my dd is on antibiotics to specifically treat lyme, she is moving forward again.

 

The media talks a lot about joint pain associated with Lyme disease but that is just one presentation. It can cause only neuropsychiatric symptoms as well. For a long time I ignored the posts on Lyme thinking they didn't pertain to my daughter, only to find out later that they did.

 

It is all a bit overwhelming. There is so much to learn. And both diagnosis are controversial so you really have to do your homework.

 

Best of luck to you. This forum has a lot of great people on it who can help steer you in the right direction.

 

Different antibiotics work better for different kids. Since you saw improvment on Augmentin, I'd see if your doc will switch your son back.

[JJMom39]

Your DH may be right. The suggestions about lyme testing can get passionate because some of us have spent a long time and a lot of emotional and financial resources pursuing Pandas only to find out after treatment failures that our kids had either a tick-borne infection or both Pandas and lyme. The symptoms of both can overlap quite a bit. So the suggestions to rule out lyme come from a desire to help others rule it in or out to save you from some of the roller coaster ride we went on. Just be aware that a large percentage of lyme patients don't recall a tick bite or a bulls-eye rash. Some speculate mosquitoes and fleas may also contribute to infection. It's just something to consider screening for. As for other lyme symptoms, you can find lists on many lyme web sites. Things like muscle pain, brain fog, attention issues, OCD, gut issues, fever, rage - are overlaps with Pandas.

 

Try not to be too afraid of the multiple infections issue. It's the untreated infections that are more of a concern. The suggestions for testing is to help identify the right infection(s). Treatments are like a dating game. You need to match the right antibiotic with the right infection or you may get less than an optimum response. So it's germ warfare. You have to get to know the enemy and arm yourself with information. Forums are great resources, but nothing guides a doctor the way blood tests and neurological exams can. You may also want to keep a journal of symptoms, infections, unusual events...it can all blur together after a time.

 

BTW - what prompted your doctor to treat for 5 days with omnicef?

I am relieved (although overwhelmed!) to have the information about Lyme and related infections and the tests for them. If there is anything else that could be in the picture and causing my son's illness I want to know about it. I think my dh is just freaking out right now. He doesn't understand PANDAS, and we have been through previous diagnoses (Benign Essential Tremor, Developmental Coordination Disorder, dyspraxia, and dysgraphia) so he is confused about why another diagnosis and whether or not all the other things my son has are related or not. I don't recall a tick bite but that doesn't mean it hasn't happened, and fleas and mosquitoes are certainly possibilities. This is all on my list for our dr., and thank you again for all of the information.

I am not certain why our dr. likes the 5 days on Omnicef. That is on my list of things to ask her. She mentioned that there are studies showing Omnicef is more effective with strep than amoxicillin, but I don't know why it's 5 days. I do know she is not a fan of long-term use of antibiotics for PANDAS, at least not on their own. She uses Enhansa (curcumin) to treat the inflammation and immune response. At the time she prescribed the Omnicef for 5 days I didn't know enough to ask why 5 days instead of another protocol. I need like 4 hours with her to get through all my questions....

[SSS]

Just wanted to chime in a little (welcome)

When my dd5 was clinically dx'd with PANDAS, our Dr. also wanted to start with Omnicef- I gave it for 7 days, and wasn't seeing really anything- my intuition coupled with obsessive reading, wanted Azithromycin. I asked for it, got it, gave it dosed for treatment body weight, along with ibuprofen, and had some huge Wows!

After 7-8 weeks, we started to back track quite a bit- then tried Augmentin SR 2x a day, my daughter's gut could NOT handle it- stopped after 3 days, we are back on Azith. (and I can't seem to stop giving ibuprofen, it helps so much)

We did a 4 day steroid burst- things were not good while on the steroid, but now that we are off, I am seeing improvement...

Watch out for yeast, (we give an anti-fungal) and probiotics are a must...

Hang in there!

I have used Enhansa before, and thought it was another Wow for us at the time (did not know about PANDAS then)

[SSS]

Sorry, also wanted to add:

Enhansa itself can cause serious die off in some kids- that is why it is best to go very slowly with it-

Did you start both at the same time? Then it's hard to tell what is what.

Here is Enhansa fact sheet, where it talks about die off:

http://www.leesilsby.com/enhansa.php

 

HTH.

[dabel]

You have received a lot of great information from the others! Welcome to the forum! I am sorry that you have to be here but when that is the case, it is a great place to be for information and support. I know how confused and alone one can feel at first.

 

I just wanted to mention that I noticed your son had a staph infection. One of my sons (I have several with this condition) really goes down hill from staph. One of his biggest 'crashes' was following a staph infection so that may very well be a contributing factor for your son's flare in symptoms also. Here the crash always occurs after the infection.

 

I, like others, have also been down the PANDAS only trail. In the end I found my children suffer from multiple chronic infections including Lyme. I wish people had recommended that I rule that out when we started our journey into this complicated world.

 

My children all run high strep titers so I though it was just strep. I was wrong. The others are right that it is best to identify the enemy as best you can and go into full out battle to get your child better!

 

The good news is that with proper treatment you can get your child back! The road is not always easy but there is hope!

 

Hang in there!