Antibiotics and PANDAS

[Dedee]

Yes, it is the Amoxicillin 250mg capsules twice daily. Like you said, pretty much a miracle for us. Still some residual very mild tics (not every day), that really no one else notices but me. My husband even says it isn't a tic, but we mothers know from constant observation :-). But, I can most definately live with that. I just hold my breath and pray alot that things dont go hay-wire.

 

Dedee

[michele]

Have you ever noticed repetitive cracking of joints or what kinds of tics does he have?

 

My son cracks which I wonder is it a compulsion or a tic? He does scream out kind of a shrill scream which I think is a tic. Also after the nystatin two doses one fourth a tsp at one million strength Andrew has had diarreah since 5:00PM today over and over. Is that what you can expect from antifungals? I don't see how I can send him to school like this plus he wantd him on it three times a day! I know you said you've given it to your daughter before.

Michele

 

Yes, it is the Amoxicillin 250mg capsules twice daily. Like you said, pretty much a miracle for us. Still some residual very mild tics (not every day), that really no one else notices but me. My husband even says it isn't a tic, but we mothers know from constant observation :-). But, I can most definately live with that. I just hold my breath and pray alot that things dont go hay-wire.

 

Dedee

[michele]

Emma,

The DAN treats alot of spectrum disorders and autoimmune problems too. Specifically sees PANDAS and strep related autoimmune problems. That is why he really recommended Actose because it is supposed to build the immune system up. I've thought of taking it for myself. He lists super GLA by Solgar effecting essential brain and immune development. Also MCT oil controls dysbosis gi yeast and virus, soothes and supports GI and CoQ10 that supports the brain and areas that have low blood flow extends vitamins especially B to these tissues and oxygen. I think the GLA and zinc go together for the pyrrole. His moods are better since the zinc. Not as explosive. He does have diarrhea right now as a side effect from the nystatin. I am thinking this can worsen behavior and release toxic material from germs temporarily.

 

Michele

 

 

 

Dedee, So happy to hear such a positive story. I notice mild symptoms with the low dose Pen VK (we are on a lower dose than Michelle, even though my daughter is 9 years older!) -- not sure others would notice, but I watch her like a hawk. Are you giving 250 mgs twice a day of antibiotic?

 

I use Culturelle every day and I have just started one Omega 3. I notice you mention milk. I stopped using all milk for a while and noticed no change. To be quite honest, I noticed no improvement with anything -- we were definitely floundering until the antibiotic -- which worked like a miracle, relatively speaking. But after I reintroduced milk, I noticed that having a glass of milk actually calmed her.

 

Michelle, GLA comes from Borage Oil and Evening Primrose Oil. It is Omega 6 -- which Chemar has said is a no-no for those with autoimmune issues (which PANDAS is). So far, I have tried to stay away from Omega 6, though my doctor didn't seem to have an opinion on whether it would be good/bad. But Chemar really seemed to know what she was talking about. Has your DAN worked with children with autoimmune issues?

 

I remember you saying that the DAN had thought treating the pyroluria would make a dramatic difference. What do you think so far?

 

A small amount of GLA is in a lot fish oil capsules, primarily those made by Nordic Naturals and Equazen. In fact, Nordic Naturals told me Omega 6 or 9 (or both) is in all of their capsules.

 

I have pretty much stopped talking to my daughter as she is doing relatively well, and seems happy. She is at an age where "being different" is just the worst, and she once told me that my questions made her feel different. I try to just watch, though I occasionally cannot contain myself and ask, "So how are you feeling?" or "Feeling OK?" She always says yes.

[Dedee]

The tic I see only rarely is him stretching his neck out and turning his head. It is sort of like his old head jerking tic only disguised (if that makes sense). It is more obvious when he is doing it more frequently. But then I usually increase his supplements or give him a higher antibiotic for a few days and it will go away. He did have a finger movement thing in the beginning, when his tics first started. He said he felt like he needed to hold his fingers and stretch them. Dr. Murphy told us this was a classic sign in almost all PANDAS kids. He has not had this at all since the antibiotics though.

 

Just my two cents on the tummy trouble with the nystatin. If you aren't already using probiotics, try those to see if it might help some. My daughter never had that issue with nystatin, but she tends to be constapated all the time anyway. Hope things get better soon.

 

Dedee

[michele]

He prescribed one million strength three times a day. It seems like alot for a month. We will start with one time per day. We do daily probiotics. Does MCT oil work for this too? He did tell me he could use that too. We started with the repetitive chorea finger movements too. Now they and the eye blinks are gone but the cracking is still here.

 

Michele

The tic I see only rarely is him stretching his neck out and turning his head. It is sort of like his old head jerking tic only disguised (if that makes sense). It is more obvious when he is doing it more frequently. But then I usually increase his supplements or give him a higher antibiotic for a few days and it will go away. He did have a finger movement thing in the beginning, when his tics first started. He said he felt like he needed to hold his fingers and stretch them. Dr. Murphy told us this was a classic sign in almost all PANDAS kids. He has not had this at all since the antibiotics though.

 

Just my two cents on the tummy trouble with the nystatin. If you aren't already using probiotics, try those to see if it might help some. My daughter never had that issue with nystatin, but she tends to be constapated all the time anyway. Hope things get better soon.

 

Dedee

[kim]

Deedee/Michele,

 

Do either of you feel that your kids tics are less abrupt or jerky than what some tics seem to be? I never really knew the meaning of the word chorea. Just came across it recently. I had described a movement my youngest son was doing in a PM to another parent recently. He was making a fist and swinging his wrists outward. It almost looked like he was doing it to music. He also will spread and stretch his fingers, and do a shoulder roll with a little neck stretch. They are just such subtle movements. They don't stand out as being jerky tics. He did have 1 brief episode of head shaking, similar to what his older brother has now, but it was short lived, quite a while ago. Just curious. I have also wondered if the abrupt onset of PANDAS is really necessary criteria. Michelle, would you say that your son has an explosive onset of symptoms with his strep infections? Deedee?

[michele]

Now he does not get the strep just the symptoms since we are on daily antibiotics. The first is a repeptive need to go pee, then an increase in joint cracking. Plus emotional liability and hyperactivity. It comes on like a train wrek. His started abrubtly as those perfect finger chorea movements and eye blinks rpidly. Tiny jerks like piano playing. Now these are major cracking and pressing to hold the pressure. However they seem uncontrollable at this point. Like he will jump up from his seat to do it. I can't figure if he is addicted to the release of the pop or what? He said he has a feeling inside like he has to get it out. Does his toes too. For awhile hw was bending down at the knees and touching the groun to crack. I guess it is a tic or compulsion of some type. The Augmentin doesn't seem to remove it neither has the zinc or taurine. I wonder if we should try to remove the antibiotic and see the results as to if it really warrants itself. Did your son have strep recently? Did anyone else in the house?

 

Michele

 

Deedee/Michele,

 

Do either of you feel that your kids tics are less abrupt or jerky than what some tics seem to be? I never really knew the meaning of the word chorea. Just came across it recently. I had described a movement my youngest son was doing in a PM to another parent recently. He was making a fist and swinging his wrists outward. It almost looked like he was doing it to music. He also will spread and stretch his fingers, and do a shoulder roll with a little neck stretch. They are just such subtle movements. They don't stand out as being jerky tics. He did have 1 brief episode of head shaking, similar to what his older brother has now, but it was short lived, quite a while ago. Just curious. I have also wondered if the abrupt onset of PANDAS is really necessary criteria. Michelle, would you say that your son has an explosive onset of symptoms with his strep infections? Deedee?

[P_Mom]

Now he does not get the strep just the symptoms since we are on daily antibiotics. The first is a repeptive need to go pee, then an increase in joint cracking. Plus emotional liability and hyperactivity. It comes on like a train wrek. His started abrubtly as those perfect finger chorea movements and eye blinks rpidly. Tiny jerks like piano playing. Now these are major cracking and pressing to hold the pressure. However they seem uncontrollable at this point. Like he will jump up from his seat to do it. I can't figure if he is addicted to the release of the pop or what? He said he has a feeling inside like he has to get it out. Does his toes too. For awhile hw was bending down at the knees and touching the groun to crack. I guess it is a tic or compulsion of some type. The Augmentin doesn't seem to remove it neither has the zinc or taurine. I wonder if we should try to remove the antibiotic and see the results as to if it really warrants itself. Did your son have strep recently? Did anyone else in the house?

 

Michele

 

Deedee/Michele,

 

Do either of you feel that your kids tics are less abrupt or jerky than what some tics seem to be? I never really knew the meaning of the word chorea. Just came across it recently. I had described a movement my youngest son was doing in a PM to another parent recently. He was making a fist and swinging his wrists outward. It almost looked like he was doing it to music. He also will spread and stretch his fingers, and do a shoulder roll with a little neck stretch. They are just such subtle movements. They don't stand out as being jerky tics. He did have 1 brief episode of head shaking, similar to what his older brother has now, but it was short lived, quite a while ago. Just curious. I have also wondered if the abrupt onset of PANDAS is really necessary criteria. Michelle, would you say that your son has an explosive onset of symptoms with his strep infections? Deedee?

 

 

PANDAS Mom's,

I don't know if any of you have heard of this, or would be willing to try for I know this is a very natural Forumn, but, a five day course of Prednisone given in a flair up for PANDAS kids can produce SIGINIFICANT symptom improvement. Prednisone is an anti-inflammatory and immune suppresent, just what PANDAS kids need. I read a forumn from a girl, now 16, who had PANDAS as a child and backed this up, as well I have read several articles on the success of Corticosteriods (you just can't use it long term like antibiotics.) She is well today, when there was a point she thought she wouldn't be able to function normally, and she stated her treatment consisted of Prednisone, IVIG, and corticosteriods ( which prednisone is one) She stated she felt she was well today because of the steriods. Just wanted to make you all aware, something to think about. God Bless.

kelly

[emma1]

Kim, I know you just asked Dedee and Michele, and my daughter is atypical because of her age, but (in case this means anything to anyone) my daughter's tics/ocd were explosive in that one day there was nothing and the next day very obvious. However, I have never noticed any jerking motions. Mosly it is a vocal tic. The only other thing I noticed is a hand motion (gone now) but it looked more like playing piano. (At the time she was doing it, I didn't even realize it was a tic, but now I am thinking it was because of the timing of it starting.)

 

Prednisone has never been mentioned to me for PANDAS. I did have a child need to use it once because of a severe allergic reaction. The doctor said that for the short term (5 days) there wouldn't be side effects we needed to worry about, but that those that need to use it long-term could experience weight gain, swelling, and a lot of other pretty significant side effects.

[P_Mom]

Kim, I know you just asked Dedee and Michele, and my daughter is atypical because of her age, but (in case this means anything to anyone) my daughter's tics/ocd were explosive in that one day there was nothing and the next day very obvious. However, I have never noticed any jerking motions. Mosly it is a vocal tic. The only other thing I noticed is a hand motion (gone now) but it looked more like playing piano. (At the time she was doing it, I didn't even realize it was a tic, but now I am thinking it was because of the timing of it starting.)

 

Prednisone has never been mentioned to me for PANDAS. I did have a child need to use it once because of a severe allergic reaction. The doctor said that for the short term (5 days) there wouldn't be side effects we needed to worry about, but that those that need to use it long-term could experience weight gain, swelling, and a lot of other pretty significant side effects.

 

 

Yes. prednisone is not good long term, but shows excellent results for flair ups. ( 5 days worth of it)

[michele]

Something I found.

 

Q: Isn't acidophilus as effective as nystatin?

 

A: No. Acidophilus is what people call a "probiotic." The theory is you introduce "good" bacteria into the gut to fill in the space that the bad bacteria and yeast used to occupy. Unfortunately, this does not work in practice. Laboratory studies actually show that acidophilus helps yeast to grow. In my experience, patients often have some slight improvement when they start acidophilus, because it clears another bad bug called "clostridia." Then, the patient gets worse as the acidophilus is continued, because the acidophilus is helping the yeast grow. I do not recommend it long term (more than 2 weeks). Interesting since it contradicts what we have been told. http://www.nutritioninstitute.com/FAQ.html

 

Steroids

Steroids, such as prednisone are used to treat autism if it is thought that the root cause is autoimmune. IVIG would also treat an autoimmune problem however; steroids work in a different manner. Steroids “shut down” or partial “shut down” the immune system thereby preventing the autoantibodies from attacking the brain cells. Also, neurologists sometimes use steroids to treat underlying seizure disorders.

 

http://www.bhare.org/treatments.html

 

I just happened to come across these while researching nystatin. I just quit prednisone 5-10 mg. per day. I've taken it for polyarthritis pain since May. I have gained five pounds and am very swollen. I can no longer wear my rings. I no longer was seeing the benefit.

 

Michele

 

also

Kim, I know you just asked Dedee and Michele, and my daughter is atypical because of her age, but (in case this means anything to anyone) my daughter's tics/ocd were explosive in that one day there was nothing and the next day very obvious. However, I have never noticed any jerking motions. Mosly it is a vocal tic. The only other thing I noticed is a hand motion (gone now) but it looked more like playing piano. (At the time she was doing it, I didn't even realize it was a tic, but now I am thinking it was because of the timing of it starting.)

 

Prednisone has never been mentioned to me for PANDAS. I did have a child need to use it once because of a severe allergic reaction. The doctor said that for the short term (5 days) there wouldn't be side effects we needed to worry about, but that those that need to use it long-term could experience weight gain, swelling, and a lot of other pretty significant side effects.

 

 

Yes. prednisone is not good long term, but shows excellent results for flair ups. ( 5 days worth of it)

[emma1]

I've been searching, and I cannot find any information regarding PANDAS and steroids -- I seriously doubt I could get my doctor to try it unless I could show him something. Would you use this with antibiotics when there is a flare-up?

 

Do most PANDAS kids have flare-ups? As we get farther and farther from the original infection, is it supposed to get better? (It should eventually go away, right? I was told it would eventually stop -- but the other autoimmune illnesses I can think of aren't that way, so. . .) With my autoimmune prob -- it is forever.

 

We'll go along several days with everything fabulous (no symptoms) and then out of the blue, I'll see symptoms (not explosive -- usually subtle -- but definitely there -- more ocd than tics). It lasts a day, and then we'll go back to no symptoms. I know I am probably looking for a trigger on the days there are symptoms, is that right? Can't figure out anything different -- seems random so far. Any other PANDAS child with this pattern?

 

Michele, I am very surprised about the probiotics. I have read a lot about them -- almost all really good. And I've had several tell me that they thought they experienced die-off with probiotics alone, and that you could get rid of a mild yeast problem with probiotics.

[michele]

EMMA,

I was wondering have you tried the gluten free deit for your autoimmune problems? I was reading that it helps alot of diseases. Also I read autoimmune could come on from yeast overgrowth. An article I have read said a patient cured her arthritis from the yeast free diet. Also wonedering if it could be related to undiagnosed celiac disease that we get this autoimmune problems? The more I read the closer I see that the kids autoimmune problems are closely related to ours. Like you mentioned ours do not go away. Dr. Demio said Andrew's may not go away. Although with improved immune maturity it should get better. Since Pandas is a new diagnosis I wonder when they will research the outcome of kids with this diagnosis. I guess NIMH is finished with the studies for now. I know some here have outgrown it. I don't know about the author of this probiotic statement. I am still giving it. Just thought it was interesting.

 

Michele

 

 

 

 

Something I found.

 

Q: Isn't acidophilus as effective as nystatin?

 

A: No. Acidophilus is what people call a "probiotic." The theory is you introduce "good" bacteria into the gut to fill in the space that the bad bacteria and yeast used to occupy. Unfortunately, this does not work in practice. Laboratory studies actually show that acidophilus helps yeast to grow. In my experience, patients often have some slight improvement when they start acidophilus, because it clears another bad bug called "clostridia." Then, the patient gets worse as the acidophilus is continued, because the acidophilus is helping the yeast grow. I do not recommend it long term (more than 2 weeks). Interesting since it contradicts what we have been told. http://www.nutritioninstitute.com/FAQ.html

 

Steroids

Steroids, such as prednisone are used to treat autism if it is thought that the root cause is autoimmune. IVIG would also treat an autoimmune problem however; steroids work in a different manner. Steroids “shut down” or partial “shut down” the immune system thereby preventing the autoantibodies from attacking the brain cells. Also, neurologists sometimes use steroids to treat underlying seizure disorders.

 

http://www.bhare.org/treatments.html

 

I just happened to come across these while researching nystatin. I just quit prednisone 5-10 mg. per day. I've taken it for polyarthritis pain since May. I have gained five pounds and am very swollen. I can no longer wear my rings. I no longer was seeing the benefit.

 

Michele

 

also

Kim, I know you just asked Dedee and Michele, and my daughter is atypical because of her age, but (in case this means anything to anyone) my daughter's tics/ocd were explosive in that one day there was nothing and the next day very obvious. However, I have never noticed any jerking motions. Mosly it is a vocal tic. The only other thing I noticed is a hand motion (gone now) but it looked more like playing piano. (At the time she was doing it, I didn't even realize it was a tic, but now I am thinking it was because of the timing of it starting.)

 

Prednisone has never been mentioned to me for PANDAS. I did have a child need to use it once because of a severe allergic reaction. The doctor said that for the short term (5 days) there wouldn't be side effects we needed to worry about, but that those that need to use it long-term could experience weight gain, swelling, and a lot of other pretty significant side effects.

 

 

Yes. prednisone is not good long term, but shows excellent results for flair ups. ( 5 days worth of it)

[Rachel]

Hello, my name is Rachel. I am not well versed with online discusssion boards but I need desparate help.

 

After a year of strep, signaled by behavior - no physical symptoms my daughter Sophie age 6 and my son, Boone age 4 have been diagnosed with PANDAS. They were diagnosed after they already had their tonsils removed. They had had strep 12 times before we were able to consider getting their tonsils removed.

 

I tried to explain the behaviorial sypmtoms to the ENT specialist prior to surgery in fact I said they had strep the day we went to discuss the surgery. However, he did not have a strep swab in his office because he is concerned about the over use of antibiotic. I went to our family doctor who put them on the antibiotic which ended the day before surgery. This was August 22, 2007 and on that day I took my then seven month old to be tested for strep. After Sophie and Boone's tonsils were removed on Aug. 23 we thought we were done.

 

On October 5, 2007 I noticed extreme behavior related to their strep. I didn't take them to the doctor til Oct. 9. They had no sore throat or fever, but after the swab, "You were right mom they do have strep". A week later a friend of mine found an article in in Prevention magazine October 2006 referring to PANDAS and my husband and I referenced the 1998 Susan Swedo article. First, we went to the specialist who was not supportive nor listening to me. I called the National Institutes of Mental Health and talked to clinical social worker in reference to the article my children's behavior.

 

Then, we brought it to our general practitioner who started the next series of antibiotic. We tried amox. first, then ,PEN V, now my daughter is on zithromax (she seems to be responding ) and my son isn't. Now I suggested to my doctor to try him on amox. again so I can observe his sypmtoms without he and his sister antagonizing each other.

 

In the meantime, per the recommendation of the 1998 Am. Journal of Psychology, Swedo article we saw a psychologist for remediation of behavior when they have an exaserbation. But not having any experience working with PANDAS she said I would be educating people about their disorder and recommended a book by Dr. Stanley Greenspan about "floor time". Then, she said this is a medical issue that has to be treated with antibiotic.

 

When they had their tonsils I noticed an allievation of symptoms seven days after being on antibiotic. The antibiotic would end and within days symptoms would reappear. Now, since tonsils have been removed I am witnessing an ebb and flow of symptoms while constantly being on antibiotic. And, we are trying to find the right antibiotic. My doctor said if I can find an doctor that has treated PANDAS please let her know.

 

Yes, we are taking fish oil, probiotic and an multivitamin. Right now, I'm considering the Feingold diet. I"m homeschooling and trying to figure out a routine in the midst of on-demand-living and behaviorial management. Any suggestions, love, and support?

 

Thank you !!! (Emailing from library home computer on the mend - ugh.)

[michele]

Rachel,

 

How is the behavior therapy going with such young children? What kind of things do they do with them? That is something we have never tried yet. Research I have read and Dr. Murphy at Shands does not recommend tonsils out because symptoms usually return and the tonsils are a germ barrier. She has had patients who thought their kids were cured only to have it come back with a vengence in a few months. How did you get the Dr. to put your child on azith? Is it long term or just a short term antibiotic? We have not had any luck getting as strong an antibiotic as azith. People here say it works the best for PANDAS because it is immune modulating. Interesting it didn't help your son though. What are their current symptoms? We heve seen behavior improvement with Gluten free and low sugar. There is a brain gut connection and gluten is like a drug of opium to these kids who have neurological trouble. Also watch additives and artificial colors because they also exacerbate symptoms. You seem ahead of the game if you are on long term antibiotics already. Research Dr. Murphy at Shands. She is in charge of a lot of PANDAS research on the web. However, what you are doing sounds exactly what she would recommend. Take care. Two kids with this must be very traumatic. How about the baby any sign of neurological trouble? Have you vaccinated? I have a nine month old and I am freaked out about the twelve month shots because that is when my son started having strep! Talk to you soon.

 

 

Michele

 

Hello, my name is Rachel. I am not well versed with online discusssion boards but I need desparate help.

 

After a year of strep, signaled by behavior - no physical symptoms my daughter Sophie age 6 and my son, Boone age 4 have been diagnosed with PANDAS. They were diagnosed after they already had their tonsils removed. They had had strep 12 times before we were able to consider getting their tonsils removed.

 

I tried to explain the behaviorial sypmtoms to the ENT specialist prior to surgery in fact I said they had strep the day we went to discuss the surgery. However, he did not have a strep swab in his office because he is concerned about the over use of antibiotic. I went to our family doctor who put them on the antibiotic which ended the day before surgery. This was August 22, 2007 and on that day I took my then seven month old to be tested for strep. After Sophie and Boone's tonsils were removed on Aug. 23 we thought we were done.

 

On October 5, 2007 I noticed extreme behavior related to their strep. I didn't take them to the doctor til Oct. 9. They had no sore throat or fever, but after the swab, "You were right mom they do have strep". A week later a friend of mine found an article in in Prevention magazine October 2006 referring to PANDAS and my husband and I referenced the 1998 Susan Swedo article. First, we went to the specialist who was not supportive nor listening to me. I called the National Institutes of Mental Health and talked to clinical social worker in reference to the article my children's behavior.

 

Then, we brought it to our general practitioner who started the next series of antibiotic. We tried amox. first, then ,PEN V, now my daughter is on zithromax (she seems to be responding ) and my son isn't. Now I suggested to my doctor to try him on amox. again so I can observe his sypmtoms without he and his sister antagonizing each other.

 

In the meantime, per the recommendation of the 1998 Am. Journal of Psychology, Swedo article we saw a psychologist for remediation of behavior when they have an exaserbation. But not having any experience working with PANDAS she said I would be educating people about their disorder and recommended a book by Dr. Stanley Greenspan about "floor time". Then, she said this is a medical issue that has to be treated with antibiotic.

 

When they had their tonsils I noticed an allievation of symptoms seven days after being on antibiotic. The antibiotic would end and within days symptoms would reappear. Now, since tonsils have been removed I am witnessing an ebb and flow of symptoms while constantly being on antibiotic. And, we are trying to find the right antibiotic. My doctor said if I can find an doctor that has treated PANDAS please let her know.

 

Yes, we are taking fish oil, probiotic and an multivitamin. Right now, I'm considering the Feingold diet. I"m homeschooling and trying to figure out a routine in the midst of on-demand-living and behaviorial management. Any suggestions, love, and support?

 

Thank you !!! (Emailing from library home computer on the mend - ugh.)