Need some advice...

[Vicki]

Vicky,

 

Thanks for sharing this story. Its great to hear that your son is doing better. As others have said though other antibiotics are often needed, I have seen that with my daughter. You also need may see symptoms gradually subside...as well as suffer through flares. For ourselves we have tried to minimize social contact with sick kids, homeschool etc. We just pulled the kids from a home school group as several of the families have been battling strep and we noticed immediate symptoms with the kids.

I just started this year homeschooling him and my daughter. With the clinginess and anxiety he has he would have never set foot in a classroom all day without me. We can't even get him in Sunday School for church anymore.

[Vicki]

Vicki, best of luck and God Bless your and your kiddo. Sounds like your on a good path of figuring it out.

 

If strep is an issue, prophylactic PenVK is a very safe option.

 

I cannot stress enough about checking for other bacterial or viral infections.......EBV(mono) and Mycoplasma and some others.

 

Immune dysregulation and some chroic infections are a pain, but it is manageable with abx if needed and a whole host of other supplements.

 

If you need some help or guidance and our experience of our journey, feel free to PM me.

He has had over 2 dozen impetigo and herpe zolster infections in his nose and near his eye since he's been a toddler. The ped is just now looking back over all his history and things are adding up now to the pandas. Impetigo is either strep or staph and every time he gets it his tics and fears come out overnight. She is just now recognizing how things are making sense. Praise God!

[kim]

vicki,

 

Would you mind saying what your sons status is regarding the varicella vaccine? Did he get 1 or 2 vaccines or did he ever contract a case of naturally occuring chicken pox (varicella)? With herpes zoster being a reactivation of the varicella virus, it seems like your ped would have questioned immune function in such a young child with the # of infections that he had. Did you notice behavioral changes with the zoster outbreaks or only with Impetigo?

 

In regards to amoxicillian, my ped always said that it was like water on a fire where strep was concerned. My kids lived on it. This was long before I started questioning anything. After mulitple rounds my youngest was said to be a carrier too. He never had his tonsils removed, his brother did. Anyway, I would not accept one round of amox. not yeilding a negative culture as "carrier status," without some further investigation. Here is something that might be helpful

 

http://www.urmc.rochester.edu/news/story/index.cfm?id=981

Penicillin, Amoxicillin: Step Aside for Strep Throat Treatment

excerpt:

Pediatricians at the University of Rochester Medical Center found that 25 percent of children treated for strep throat with penicillin ended up back in the doctor’s office within three weeks of treatment. Children treated with amoxicillin returned 18 percent of the time. The numbers were 14 percent for older-generation cephalosporins, and just 7 percent for newer ones like cefpodoxime and cefdinir, which are given for just four or five days.

The new results buttress previous work by physicians Michael Pichichero, M.D., and Janet Casey, M.D., showing that more children who receive the older drugs relapse, prolonging their illness and forcing doctors to turn to even stronger drugs. Yet, said Pichichero, doctors across the land continue to prescribe ineffective medications. Studies have shown that approximately 60 to 80 percent of children treated for strep are prescribed amoxicillin; 10 to 20 percent are prescribed penicillin; and just 10 to 20 percent receive a cephalosporin.

“Most doctors are shocked to learn of the high failure rates of the older medications,” said Pichichero, a professor of Microbiology and Immunology.

 

 

Also, you might want to read here

 

Pinned (at the very top of the 1st page of the forum) These are some commonly asked questions

Helpful Threads & Links for PANDAS

http://latitudes.org/forums/index.php?showtopic=6266

Q: My doctor has said that my daughter is a strep carrier and that the positive strep culture is meaningless. Is this true?

Edited September 9, 2014 by kim

[Mayzoo]

My daughter was positive for strep for almost 60 days. She took 10 days amox then 10 days augmentin. Then 40 days Zithromax before her rapid test was negative.

[Vicki]

vicki,

 

Would you mind saying what your sons status is regarding the varicella vaccine? Did he get 1 or 2 vaccines or did he ever contract a case of naturally occuring chicken pox (varicella)? With herpes zoster being a reactivation of the varicella virus, it seems like your ped would have questioned immune function in such a young child with the # of infections that he had. Did you notice behavioral changes with the zoster outbreaks or only with Impetigo?

 

In regards to amoxicillian, my ped always said that it was like water on a fire where strep was concerned. My kids lived on it. This was long before I started questioning anything. After mulitple rounds my youngest was said to be a carrier too. He never had his tonsils removed, his brother did. Anyway, I would not accept one round of amox. not yeilding a negative culture as "carrier status," without some further investigation. Here is something that might be helpful

 

http://www.urmc.rochester.edu/news/story/index.cfm?id=981

 

Penicillin, Amoxicillin: Step Aside for Strep Throat Treatment

 

excerpt:

 

Pediatricians at the University of Rochester Medical Center found that 25 percent of children treated for strep throat with penicillin ended up back in the doctor’s office within three weeks of treatment. Children treated with amoxicillin returned 18 percent of the time. The numbers were 14 percent for older-generation cephalosporins, and just 7 percent for newer ones like cefpodoxime and cefdinir, which are given for just four or five days.

 

The new results buttress previous work by physicians Michael Pichichero, M.D., and Janet Casey, M.D., showing that more children who receive the older drugs relapse, prolonging their illness and forcing doctors to turn to even stronger drugs. Yet, said Pichichero, doctors across the land continue to prescribe ineffective medications. Studies have shown that approximately 60 to 80 percent of children treated for strep are prescribed amoxicillin; 10 to 20 percent are prescribed penicillin; and just 10 to 20 percent receive a cephalosporin.

 

“Most doctors are shocked to learn of the high failure rates of the older medications,” said Pichichero, a professor of Microbiology and Immunology.

 

 

Also, you might want to read here

 

Pinned (at the very top of the 1st page of the forum) These are some commonly asked questions

 

Helpful Threads & Links for PANDAS

 

http://latitudes.org/forums/index.php?showtopic=6266

 

Q: My doctor has said that my daughter is a strep carrier and that the positive strep culture is meaningless. Is this true?

 

I stopped all vaccines when my son was entering K. I heard too many stories and also my sister-in-law stated a good case of why she doesn't vaccinate. I also watched my friend's healthy daughter become autistic and they are saying its because of vaccines. He may have had the varicella vaccine before K. He has had the herpes zoster that started when he was a year old. He gets it right near his left eye. Comes out once a month til I cut gluten out two years ago and only comes out about every 9 months now. He had chicken pox 2 years ago. It was around Christmas time when he was 7. He was always extremely cranky and quickly frustrated every time the herpes zoster came out. That was a true sign it was coming out. Allergies trigger it, like a wood stove, cats, and pollen. And gluten.

Thanks for the information on amoxicillin. I will check the link out now...

[Missmom]

Have you had another appointment with your doctor? Just wondering if the antibiotics have been changed. I think you will find that your son will need at least thirty to sixty days at a stronger than average dose. Just push to get him back to baseline before you start thinking about a maintenance program. Your son will get better and it is great you have a supportive doctor there who is willing to help.

[kim]

Vicky,

 

I think your son would have gotten a varicella vaccine at one year if you were followimg the schedule at that time. If he had a herpes zoster outbreak (sound like it's mild) that would have made sense. There have been other reports of children getting shingles after getting the vaccine. The virus stays dormant in your body and can reactivate as shingles. The part I don't understand is having a case of chicken pox 2 years ago. From what I understand the virus always reactives as shingles.

 

Has anyone ever confirmed that it's herpes zoster with a lab test?

[Vicki]

Vicky,

 

I think your son would have gotten a varicella vaccine at one year if you were followimg the schedule at that time. If he had a herpes zoster outbreak (sound like it's mild) that would have made sense. There have been other reports of children getting shingles after getting the vaccine. The virus stays dormant in your body and can reactivate as shingles. The part I don't understand is having a case of chicken pox 2 years ago. From what I understand the virus always reactives as shingles.

 

Has anyone ever confirmed that it's herpes zoster with a lab test?

[Vicki]

He has had multiple positive herpes zoster tests. His strep came back negative after round of amoxicillin. He is starting on two homeopathic meds. .. streptoccocium and lycopodium. Fish oil, vitamin D, and a probiotic as well. Plus they are running more blood work. And putting him on an anti inflammatory diet.

 

 

 

 

Vicky,

 

I think your son would have gotten a varicella vaccine at one year if you were followimg the schedule at that time. If he had a herpes zoster outbreak (sound like it's mild) that would have made sense. There have been other reports of children getting shingles after getting the vaccine. The virus stays dormant in your body and can reactivate as shingles. The part I don't understand is having a case of chicken pox 2 years ago. From what I understand the virus always reactives as shingles.

 

Has anyone ever confirmed that it's herpes zoster with a lab test?

[Vicki]

Have you had another appointment with your doctor? Just wondering if the antibiotics have been changed. I think you will find that your son will need at least thirty to sixty days at a stronger than average dose. Just push to get him back to baseline before you start thinking about a maintenance program. Your son will get better and it is great you have a supportive doctor there who is willing to help.

He had another culture Friday and came back negative so I am guessing the amoxicillin kicked it out. But, he is still having vocal and motor tics and the fears have all come back. The doctor actually wrote down a plan. Fish oil, probiotic, vitamin D, and 2 homeopathic meds... one called streptoccocinum and the other is lycopodium. Have you ever heard of these before? She also is putting him on an anti-inflammatory diet.

[Missmom]

I would bet that even though the strep culture came back negative your sons immune system is still highly activated. I believe it takes about three weeks for any antibodies that your system makes to actually weaken then eventually die off, so that may be the reason your son still has the symptoms or possibly you are dealing with more than just strep. I don't have experience with any of the supplements you mention. Give it a few weeks and see if you start to notice a reduction of symptoms and if not you may need to run further testing. Sometimes it is good to test everyone in the household as well just to make sure there are no strep carriers that you son could be reacting to.

[Vicki]

I would bet that even though the strep culture came back negative your sons immune system is still highly activated. I believe it takes about three weeks for any antibodies that your system makes to actually weaken then eventually die off, so that may be the reason your son still has the symptoms or possibly you are dealing with more than just strep. I don't have experience with any of the supplements you mention. Give it a few weeks and see if you start to notice a reduction of symptoms and if not you may need to run further testing. Sometimes it is good to test everyone in the household as well just to make sure there are no strep carriers that you son could be reacting to.

Thanks so much! I would like our whole family to be checked to see if we are strep carriers. Thanks for the advice!

[Jane]

Not sure if you had answers about a good book. Chidlhood Interrupted- 'The complete guide to PANDAS and PANS, by Beth Alison Maloney, has been a great help to us.

Also, 'Your Child has Changed. Should you consideer PANDAS?' A booklet you can buy online from Latitudes.

[kim]

I think your son would have gotten a varicella vaccine at one year if you were followimg the schedule at that time. If he had a herpes zoster outbreak (sound like it's mild) that would have made sense. There have been other reports of children getting shingles after getting the vaccine. The virus stays dormant in your body and can reactivate as shingles. The part I don't understand is having a case of chicken pox 2 years ago. From what I understand the virus always reactives as shingles.

 

Has anyone ever confirmed that it's herpes zoster with a lab test?

 

 

 

He has had multiple positive herpes zoster tests.

 

 

 

Just thought I would share what looks like a reasonble explaination for this

http://www.sciencedirect.com/science/article/pii/S0264410X12007761

Review of the United States universal varicella vaccination program

 

excerpt from

 

12. Safety of varicella and HZ vaccinations 12.1. Complications of introducing the vaccine- or Oka-strain varicella zoster virus (VZV)

Consider a child that is administered the live Oka-strain varicella vaccine and is subsequently exposed to an individual shedding VZV—either: (a) a child with varicella or HZ infection or ( an adult with HZ infection. If the VZV strains are sufficiently heterologous (genetically distinct), a second case of varicella can result. There are at least five VZV genotype variations or virus clades known at this time, in addition to 4 rarely-reported provisional clades.

Edited February 7, 2015 by kim