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Advice on treatment for PANDAS


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Hi Can anyone give me any help with my daughter? About 2 months ago she had a sore throat. Then about 5 weeks ago she overnight developed a facial tic. Blinking, eye rolling and (slight) facial grimace. We took her to the doctor and asked for a strep swab, however he thought she could have an allergy (because her eyes were itchy and sore) and gave her eye drops. These hurt her eyes, however we continued for a few days and then stopped using them. The tics continued and became quite close together, about every 10-30 seconds apart. My husband took her to the hospital. They swabbed her throat , did and EEG, MRI, and attempted 2 lumbar punctures(unsuccessful). After 2 days, diagnosis was PANDAS, neurological tic, exaggerated by Strep. (Prior to this, since young, we noticed that when she watched TV she would raise her eyebrows, and somtimes blink slowly). It seems as if the strep could have accentuated this mannerism. She was put on a Penicillin drip for 24 hours. After 12 hours the tic seemed noticeably improved, down to about 6 minutes apart. We were discharged from hospital with Penicillin V 500mg 2x daily for 10 days. Not sure if this worked (as we later found out, she should not have taken the capsules with jam(to make it easy to swallow)). 9 days after starting the Penicillin she got a fever, sore throat, stomach and vomited. The tics worsened. Back to the doctor who prescribed Amoxicillin Duo 400 2x daily for 6 days. She improved slightly on the first couple of days, then went on camp, where the medicine might not have been kept cold enough. Anyway after 2 days at camp the tic was bad again.She finished the medicine, but the tics remained. We took her to the doctor for a checkup 7 days later(her eyes were itchy and sore again): under advice from the hospital, she was put on Amoxycillin 400mg 3x daily. She has been on this for 2 days and has seemed slightly better at times during the day, but then worse in the sunlight and watching tv. Today the tics have been as far apart as 5 minutes, but then close as 15 secs as well. I am wondering if this may be a photosensitive thing not PANDAS. When they did the EEG in the hospital, every time the light went in her eyes, she blinked and rolled her eyes. In the bright sunlight, watching tv or in bright artificial light the tic gets worse(closer together). She has never been vaccinated, or needed to visit a doctor before, so feel she had a strong immune system. Should we keep her on the antibiotics. We feel maybe we should give her a chance to heal somehow without more antibiotics. Has anyone had any results with alternative therapies? Has anyone heard anything about light sensitivity? Can we get her swabbed and tested for strep while she is on the antibiotics?Any help/ideas would be greatly appreciated. Thanks.

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welcome awana,

 

I'm not a PANDAS mom, but was wondering if you used probiotics along with the antibiotics? And how is her diet? A lot of kids do find a lot of their symptoms lessen taking out food that are loaded with junk. Do you know what she was eating at camp?

 

CP

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Awana,

 

There is a lot of information here on light sensitivity. It is very common in some of our children. Use the search feature in the upper right. I have two quick thoughts for you as well: First, get her a good pair of polarized sunglasses for sunlight and car, and have her sit further away from the t.v. in a well-lit room and at a slight angle, not directly in front. The goal is to force her eyes to take in more of the room than just the screen. Second, I could be wrong, and someone around here will be able to confirm or deny this quickly, but I believe light sensitivity is a side-effect of some antibiotics. Do you recall if the light sensitivity that you observed existed prior to the prescription? or just during?

 

Also, how old is your daughter?

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Did they do zinc levels on her CBC?

You may want to consider doing a test for pyroluria-- she may have depleted zinc, magnesium, and B6 stores. Our son was dxd with pyroluria and it gave him issues of light sensitivity. The sensitivity goes away when he is balanced, and when he becomes stressed it can flare up again. The treatment for pyroluria is vitamin supps and less stressful lifestyle.

Pyroluria is a kryptopyrrole disorder in the blood.

I wrote about it a while back when my ds was first dxd.

http://healthy-family.org/caryn/63

Just something else to read about, in the event there may be a connection.

Testing is easy and can be done in a doctor's office or at home.

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welcome awana,

 

I'm not a PANDAS mom, but was wondering if you used probiotics along with the antibiotics? And how is her diet? A lot of kids do find a lot of their symptoms lessen taking out food that are loaded with junk. Do you know what she was eating at camp?

 

CP

We didn't use probiotics, apart from yoghurt in her diet, didn't know if it would interfere with the antibiotics. We were going to put her on probiotics when she finished the antibiotics. Her diet is generally pretty good, doesn't eat a lot of junk food. We have been trying to eliminate food colourings, artificial flavour etc(not that she has a lot anyway). Am thinking of putting her on a wheat free diet if that would help. The only thing different that i can work out she had on camp was cordial for morning and afternoon tea, pineapple crush/tropical, usually she just drinks water/apple & mango juice.

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Awana,

 

There is a lot of information here on light sensitivity. It is very common in some of our children. Use the search feature in the upper right. I have two quick thoughts for you as well: First, get her a good pair of polarized sunglasses for sunlight and car, and have her sit further away from the t.v. in a well-lit room and at a slight angle, not directly in front. The goal is to force her eyes to take in more of the room than just the screen. Second, I could be wrong, and someone around here will be able to confirm or deny this quickly, but I believe light sensitivity is a side-effect of some antibiotics. Do you recall if the light sensitivity that you observed existed prior to the prescription? or just during?

 

Also, how old is your daughter?

Thanks for those thoughts. Our daughter is 11. She has also had a big growth spurt in the last month or so, don't know if this is related. When she was admitted to hospital (before any antibiotics were given), she had problems with the light. The EEG flashed light in her eyes, and every time the light flashed, she blinked and rolled her eyes, even when the flashes were really close together.

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Did they do zinc levels on her CBC?

You may want to consider doing a test for pyroluria-- she may have depleted zinc, magnesium, and B6 stores. Our son was dxd with pyroluria and it gave him issues of light sensitivity. The sensitivity goes away when he is balanced, and when he becomes stressed it can flare up again. The treatment for pyroluria is vitamin supps and less stressful lifestyle.

Pyroluria is a kryptopyrrole disorder in the blood.

I wrote about it a while back when my ds was first dxd.

http://healthy-family.org/caryn/63

Just something else to read about, in the event there may be a connection.

Testing is easy and can be done in a doctor's office or at home.

No they haven't done zinc levels, can they do that with a blood test?

The pyroluria sounds interseting, I'm not sure if she meets all those criteria tho. Thanks for your info.

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Our son is 10 and was diagnosed with PANDAS at 6 with a sudden onset of tics. We used amox. for several years - we are now on azithromycin which has done wonders. Our son was very sensitive to sunlight, florescent lights (he could not go into stores for a long time - and the school limits them in the classroom and he sits next to the window), and tv - we now only have LCDs in the house and he can tolerate them ok - but when he is sick even those will increase symptoms. We find he does have an increase in tics during growth spurts. Right now he has some symptoms and we were trying to figure out what might be causing them (could be back to school - and florescent lights), and thought it may be because our youngest has a cold - but now think it is a growth spurt - he is eating unbelievable amounts and is always "starving!" We see a naturopath and did a lot of vitamin therapy with our son - with good results. Removing dairy made a huge difference for him. He now has some but we limit it - we also try and limit gluten too. Wishing you all good luck -glad you have a doc who knows something about PANDAS.

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Hi Awana,

 

if you test your daughter for strep while on antibiotics (or too soon after stoppping them) you're likely to get a false negative result.... the culture will be negative b/c the strep has been temporarily "knocked out" but it's actually still there, just levels too low to culture. Ideally you should wait at least a couple of weeks after you stop the antibiotics.

 

Always get a 48-72 hour culture if the rapid test is negative.

 

Does your daughter just have tics or is there any OCD, anxiety, ADHD that came along with the pandas? You might need to ask her if she is having any "bad thoughts" etc. since not all kids will mention this if you don't ask. Mood changes? Tantrums? Other weird behavior?

 

A lot of PANDAS moms have their kids on prophylactic (long term) antibiotics. My now 8 year old dd had PANDAS ocd/anorexia nervosa/ tics (also depressed/suicidal) from a strep infection in January. She was on (over a course of 3mo) augmentin (a stronger version of amoxicilin) for ten days, then switched to amoxicillin, then tried a cephalosporin for 10 days, then back to amoxicillin...finally in June we put her on Azithromycin and that is what really helped her. Her mood improved after 3 days, her OCD/eating got better after 10days, her tics took about 6 weeks to go away. She is great now (eating, happy, no tics, normal)....we still have her on Azithromycin. The rheumatologist recommended keeping her on the Azithromycin another year and then maybe switching to pennicillin.

 

I don't know if it is "normal" for tics to take longer to go away....

 

I would also get throat cultures on other family members to make sure they are not strep carriers (who could quickly re-infect your dd). My younger dd (5 year old) also cultured positive (no symptoms) and we were able to clear her on Azithromycin (but not augmentin).

 

Anyway, different kids react differently with PANDAS...it seems a lot of kids do better on Azithromycin but not all. You have to see what works.

 

Some kids with bad PANDAS (severe tics, severe ocd) don't respond to antibiotics and end up having IVIG. You might check out this website http://www.webpediatrics.com/pandas.html ....Dr. K in chicago (web pediatrics) probably does more IVIG on PANDAS patients than anyone else in the country. His website has a lot of information.

 

If you don't do prophylactic antiboitics I would at least do them before dental cleaning (or extractions).

 

I think whether you decide to keep you dd on long term abs is an individual decision...IMO I do have a conern re. brain damage (basal ganglia) of chronic repeated PANDAS over the years. I wonder how many kids with chronic tics"/tourettes wouldn't have been that way if they were on the the appropriate prophylactic antibiotic. And, in my dd's case, her PANDAS was so devastating that letting her get it again just isn't an option....I'm knocking on wood that the Azithromycin continues to work for her.

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