Jump to content
ACN Latitudes Forums

Long Term PANS and IVIG treatment


bhenry
 Share

Recommended Posts

Croatianmom, Thank you for your words of hope. Its exhausting when you have finally reached a place that you know is the right decision and then someone has to interfere, making you question your decision., we are just waiting on insurance appeal right now and praying it will go through. Have you tried different antibiotics? My dd was on biaxin for two years and showed improvement but not fully . Then developed myco and was put on augmentin and saw a drastic improvement. The steroid bursts are also worth trying. I was very hesitant at first and put it off for a long time, but in the meantime while you are getting IVIG you may want to consider it. I wish you well, its a long journey for us all.

Link to comment
Share on other sites

dear bhenry,

 

my son is augmentin 2x1000 daily for the last 1 year.no help at all. . We tried steroids in Janury 2012 - the worse time ever!!!he had his 2.nd IVIG 3 weeks ago.

So, now we wait to see the results from this IVIG; but, unfortunatly his condition is still the same, so I'm preparing to do some additional lab tests for lyme ecc. as some dear people here advised me here.

Hope Your IVIG will be approved.

Link to comment
Share on other sites

Croatianmum, Im sorry to hear those other treatments didnt work . i would definately test for Lyme! I advise you to see someone who specializes in it. My son 18 had a bartonella rash on his back for 3 years. I thought they were stretch marks until i saw a picture of bartonella rash and brought him to a lyme specialist. His tests all came out negative but we treated anyway because of the rash and it is going away now two weeks into antibiotic therapy rifampin and mynocycline. He also told me he can concentrate better in school and mood swings have improved. He is also being treated for PANDAS.

Link to comment
Share on other sites

Dear bhenry mom,

 

Now when You mentioned rash; I went to google; - bartonella rash- pictures...and OH MY GOD!!!!!!

 

some pictures have the sam rash as my son had 3 times in the last 1 year on his back!!!! Exactly the same!!

I can not be more surprised than this!

 

At the time, we took him to the dr. office; and N oONE (not even dr. K who saw the picture of this rash) conected this with bartonella. They told us this is maybe an autoimmune reaktion, maybe vascultiies; maybe nothing...but they offcourse did nothing.

 

But he had it in total 5 times in the last year!! And it really does makes sence!

 

But, the rash would always come and go in 3-4 days. Is this normal with bartonella?

 

Oh, well this a big, big thing for us!

 

Thank God for the people on this forum, thank You bhenry mom for mentioning this rash to me!

Link to comment
Share on other sites

croatianmom,

 

My sons rash did not come and go but ive heard that they usually do. We are convinced it is definately bartonella because it is clearing now on antibiotics. Like I said it is hard to get a possitive for bartonella. It is also important to take something like bolouke or lumbrouske( not sure if i spelled that right) as a blood coagulator because bartonella forms in the arteries. I definately think my son has both and both need to be treated. Immune system issues from PAndas can make it hard to clear up the bartonella. Or, it could just be bartonella in your case, it can cause neurological symptoms similiar to PANDAS. It would make sense that IVIG would be inefective if he had and active bartonella infection going on. Good luck and hope you find the right treatment. If this isnt enough to make us all crazy!

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share

×
×
  • Create New...