Our Update...

[Kayanne]

It's been a while since I updated, and there are so many new people I guess I should also give a recap:

 

From March to May 2009 my 6yr old daughter tested positive for strep 4 times with rapid tests at her pediatricians. The treatments were 5 days of omnicef, 10 days of amoxicillin, 10 days of augmentin with rifampin added on days 7-10, and finally 10 days of clindamycin.

 

By Mid April, she was a different child. Her symptoms included: inability to make decisions, emotional lability, telling on herself, inability to reason with her, she was refusing to eat, screaming and some raging, short term memory loss, couldn't get off the potty, a coughing tic, she couldn't speak, she startled easily with soft voices, she just shut down. At first, it seemed like a sudden case of severe ADD...but after a few weeks she just stopped everything so that her teacher thought she looked autistic...It was a very scary time for us.

 

On June 5th Dr. Latimer diagnosed her, and treated with a month of prednisone, and 100mg of azith daily. We saw improvements over the month, but at the very end, she woke up and began to speak, and socialize again...it was miraculous...we kept her on 5mg daily of prednisone for 2 more weeks for various reasons. By the time she was done in July, she was 98-99% back. By August, she began to want to write again (previously she would make books of her stories for hours), and by Sept, the her final symptom (reluctance to use the bathroom) was also gone.

 

In September (by my request) Dr. Latimer put Becca on 200mg of pen vk 2X/day as a prophylaxis. She continued to do very well.

 

In Oct, she got the flu. She was prescribed Tamiflu, and we didn't see any increase in PANDAS symptoms.

 

In November, she had a BAD head bang that resulted in a bruised knot on her forehead. Also we also immunized all of my children for H1N1. Again, we didn't see any PANDAS symptoms that were significant. What we were seeing was that she slowed down. It took her longer to do things...I guess like a sub-clinical ADD. For example, if she was taking a while getting ready for school, I would go up and check on her, and she would just be coming down the stairs...everything was cut really close (I am the same way...my mother has said for years that I have 2 speeds, slow and stop). We were watching her closely, but it never escalated.

 

In February 2010, my other 3 children tested positive for strep. Becca was still on pen vk, and tested negative. My other children were put on ceftin and duricef. The ped believed the pen vk was working because she kept testing negative. However, we started to see a ramp up of her PANDAS symptoms. 10 days past her sister's positive strep test, we knew the PANDAS was back. Her symptoms this time were...difficulty deciding what to wear in the morning...really inflexible, and complaints of food getting stuck in her throat (she lost 3 lbs in 2 weeks), more edgy with a lot more attitude toward her siblings. One of the peds in the practice put her on 10 days of omnicef 150mg 2X/day based on symptoms alone.

 

March 1, Dr. Latimer said the infection may just be deeper in the tonsils and that pen vk was not good at reaching that. She prescribed 5 weeks of prednisone, and we continued on the same dose of omnicef (we tried amox for a week--she had a mild rash and she did backslide). Her teachers never reported any problems in school, I kept them informed of what was happening at home. Again, the prednisone was successful for my daughter. Her latest set of PANDAS symptoms never got worse, and by the end she was back....even the "slowing down" that we had seen before is gone. Right now, we only see an occasional flare of bad attitude or screaming at her siblings....but honestly, I think a lot of it is developmental....her friends are getting attitudes too.

 

So right now she is on a little better than full-strength omnicef (150mg 2X/day). I try to remember probiotics, but honestly I forget a lot...and the same for fish oil. She also takes a multi-vitamin, vitamin C, claritin and nasonex.

 

We just got the results of her immuno work-up, and everything looks really good. Her IgE was high (I was expecting that because she has seasonal allergies). I still need a little clarification on the s pneuomoniae serotypes, but looking over it initially, it seems that she has passed all.

 

Our next step is a T&A surgery. Both of my girls are getting the procedure done on June 25th.

 

For us, I consider the pen vk a failure as a prophylaxis. So I am guessing that our step down to prophylaxis will probably be a narrow (if there is one) spectum cephalosporin. However, I have no plans to decrease or change her antibiotics just yet.

[dcmom]

Thanks for the detailed update!

 

I am so glad you have been able to manage things pretty successfully with your dd.

 

Please- up the abx before and after T&A. And, if possible, have a steroid burst handy.

 

Keep in touch!

 

Eileen

[7upMom]

Good to hear your update! We have a t&a for our son on July 12- please keep an update afterwards how this goes for your daughter, will keep her in our thoughts. Are you considering culturing after they are removed?

[amy s]

Thanks for the update! For what it's worth- many pandas kids have failure with pen vk. My dd used it about 6 months with NO relief. Good luck with the T&A surgeries.

regards,

amy s

[deby]

It's been a while since I updated, and there are so many new people I guess I should also give a recap:

 

From March to May 2009 my 6yr old daughter tested positive for strep 4 times with rapid tests at her pediatricians. The treatments were 5 days of omnicef, 10 days of amoxicillin, 10 days of augmentin with rifampin added on days 7-10, and finally 10 days of clindamycin.

 

By Mid April, she was a different child. Her symptoms included: inability to make decisions, emotional lability, telling on herself, inability to reason with her, she was refusing to eat, screaming and some raging, short term memory loss, couldn't get off the potty, a coughing tic, she couldn't speak, she startled easily with soft voices, she just shut down. At first, it seemed like a sudden case of severe ADD...but after a few weeks she just stopped everything so that her teacher thought she looked autistic...It was a very scary time for us.

 

On June 5th Dr. Latimer diagnosed her, and treated with a month of prednisone, and 100mg of azith daily. We saw improvements over the month, but at the very end, she woke up and began to speak, and socialize again...it was miraculous...we kept her on 5mg daily of prednisone for 2 more weeks for various reasons. By the time she was done in July, she was 98-99% back. By August, she began to want to write again (previously she would make books of her stories for hours), and by Sept, the her final symptom (reluctance to use the bathroom) was also gone.

 

In September (by my request) Dr. Latimer put Becca on 200mg of pen vk 2X/day as a prophylaxis. She continued to do very well.

 

In Oct, she got the flu. She was prescribed Tamiflu, and we didn't see any increase in PANDAS symptoms.

 

In November, she had a BAD head bang that resulted in a bruised knot on her forehead. Also we also immunized all of my children for H1N1. Again, we didn't see any PANDAS symptoms that were significant. What we were seeing was that she slowed down. It took her longer to do things...I guess like a sub-clinical ADD. For example, if she was taking a while getting ready for school, I would go up and check on her, and she would just be coming down the stairs...everything was cut really close (I am the same way...my mother has said for years that I have 2 speeds, slow and stop). We were watching her closely, but it never escalated.

 

In February 2010, my other 3 children tested positive for strep. Becca was still on pen vk, and tested negative. My other children were put on ceftin and duricef. The ped believed the pen vk was working because she kept testing negative. However, we started to see a ramp up of her PANDAS symptoms. 10 days past her sister's positive strep test, we knew the PANDAS was back. Her symptoms this time were...difficulty deciding what to wear in the morning...really inflexible, and complaints of food getting stuck in her throat (she lost 3 lbs in 2 weeks), more edgy with a lot more attitude toward her siblings. One of the peds in the practice put her on 10 days of omnicef 150mg 2X/day based on symptoms alone.

 

March 1, Dr. Latimer said the infection may just be deeper in the tonsils and that pen vk was not good at reaching that. She prescribed 5 weeks of prednisone, and we continued on the same dose of omnicef (we tried amox for a week--she had a mild rash and she did backslide). Her teachers never reported any problems in school, I kept them informed of what was happening at home. Again, the prednisone was successful for my daughter. Her latest set of PANDAS symptoms never got worse, and by the end she was back....even the "slowing down" that we had seen before is gone. Right now, we only see an occasional flare of bad attitude or screaming at her siblings....but honestly, I think a lot of it is developmental....her friends are getting attitudes too.

 

So right now she is on a little better than full-strength omnicef (150mg 2X/day). I try to remember probiotics, but honestly I forget a lot...and the same for fish oil. She also takes a multi-vitamin, vitamin C, claritin and nasonex.

 

We just got the results of her immuno work-up, and everything looks really good. Her IgE was high (I was expecting that because she has seasonal allergies). I still need a little clarification on the s pneuomoniae serotypes, but looking over it initially, it seems that she has passed all.

 

Our next step is a T&A surgery. Both of my girls are getting the procedure done on June 25th.

 

For us, I consider the pen vk a failure as a prophylaxis. So I am guessing that our step down to prophylaxis will probably be a narrow (if there is one) spectum cephalosporin. However, I have no plans to decrease or change her antibiotics just yet.

 

 

I'm new at this Pandas/meds/abs world, could you explain to me what is prednisone and why the doctor decided to give it to her?

[memom]

Deby,

 

I'll take a shot at this answer. There are two reasons for short term steroids. One is to decrease inflammation of the basal ganglia in the brain caused by the auto antibodies the immune system is producing. The other is to help predict if immune therapy (IVIG) will likely be effective treatment (short burst)

 

Once it is thought that a person is suffering from Pandas, the goal is to rid the body of infection (known or hidden) in hopes the body will stop making auto antibodies (antibodies against self, in the case of Pandas, against the basal ganglia in the brain), then close the blood brain barrier so antibodies can't get to the basal ganglia, and finally to decrease inflammation.

 

There are a few kids that have been effectively treated with antibiotics (usually long term), and a month of steroids allowing the child to return to baseline. In our case, the steroids showed us with certainty that we were dealing with an auto immune disorder, not a mental health disorder as my daughters symptoms dramatically improved on the steroids (unfortunately to return as soon as the meds were tapered).

 

I hope this helps.

[Kayanne]

Deby, yes memom is right.

 

Prednisone is a corticosteroid and it is not only an effective anti-inflammatory, it is also immune suppressing. It is used a lot for many autoimmune issues because it can to suppress the offending antibodies. It is also commonly prescribed for allergies, asthma, inflammation, rashes...and many other things.

 

I hope this answers your question.

 

~Karen

[deby]

Thank you for your responses, is it ok to give the steroid while with abs? any abs?

Why some people give only 5 days and some continue for 1 month?

[Kayanne]

My daughter did take prednisone while taking azith, amox, and omnicef.

 

As for any abs?...you would need to clarify that with a doctor.

 

Dr. K's 5 day protocol is essentially to prove autoimmunity...if there is an improvement on prednisone then IVIG will probably work (but I don't think that is written in stone for his deciding to perform IVIG on his patients).

 

A month of prednisone is usually considered a treatment. Some children can fully recover from a PANDAS episode with just prednisone and antibiotics.

[Kayanne]

Thanks for the detailed update!

 

I am so glad you have been able to manage things pretty successfully with your dd.

 

Please- up the abx before and after T&A. And, if possible, have a steroid burst handy.

 

Keep in touch!

 

Eileen

 

Eileen,

I was going to send a pm, but I remembered your inbox may still be full...I heard from the ENT's office, and the Dr. is going to add IV antibiotics for BOTH of my girls!!

 

Thanks so much for your input today

 

~Karen

[ajcire]

The IV antibiotic during it is standard. My son is getting his done on the 25th too. My non pandas daughter had hers out though and there was automatically IV antibiotics.