Anyone use Minocycline?

[melanie]

Hi

 

Saw the immunologist today and had some more blood tests(she likes the blood tests) thank god dannys good with needle thing.He did have a throat issue phanagitis? Something like that.She put him on Azith for 5 days and then minocycline for 3 months .His next IV is Friday and we talked about the dosage She is giving him 1kg per kilogram.She says the insurance company will fight anything more but didnt dimiss it completely.

 

We also went over all of his other blood results

 

he failed all of the strep markers

numbers were all low low

 

She spoke about the mycoplasm (high)

 

It was an informative day.

 

We feel good and positive

 

Melanie

[peglem]

Haven't used minocycline, but here's a thread where I asked about it:

 

http://www.latitudes.org/forums/index.php?...;hl=minocycline

 

Sounds like it has some potential side effects that you should watch out for.

 

Pharangitis? Isn't that just a throat infection? Was Danny on abx already?

 

Glad you found a helpful immuno!

[melanie]

Haven't used minocycline, but here's a thread where I asked about it:

 

http://www.latitudes.org/forums/index.php?...;hl=minocycline

 

Sounds like it has some potential side effects that you should watch out for.

 

Pharangitis? Isn't that just a throat infection? Was Danny on abx already?

 

Glad you found a helpful immuno!

[melanie]

Yes Pharangitis is a throat infectiion .Thats what the zith was for She feels minocycline is a good antinflamatory and danny does have asd so hey whatever helps. I think we will give it a try .Thanks Peg ,any luck yet for Allie??

 

Melanie

[nomoz]

Hi

 

Saw the immunologist today and had some more blood tests(she likes the blood tests) thank god dannys good with needle thing.He did have a throat issue phanagitis? Something like that.She put him on Azith for 5 days and then minocycline for 3 months .His next IV is Friday and we talked about the dosage She is giving him 1kg per kilogram.She says the insurance company will fight anything more but didnt dimiss it completely.

 

We also went over all of his other blood results

 

he failed all of the strep markers

numbers were all low low

 

She spoke about the mycoplasm (high)

 

It was an informative day.

 

We feel good and positive

 

 

 

Melanie

 

 

 

Melanie

What have you learned about the micoplasm relation to PANDAS? My daughter had a recent bout with it, had two rounds of Azythro.. and still her exposure numbers are high.

She has been episodic since January, calmed a bit by Augmentin, but complaining every day of a stomach ache. She has a fever currently, has dark circles, and looks very pale. Our local pediatrician doesn't see any more need for more Azith. I beg to differ.

Just wondering about that micoplasm relation.

Thank you!

[Alex]

Hi Melanie,

 

Did your doctor swab your son's thoat to see if it was a strep infection?

 

Also, just to put it out there again, Dr. K is adamant that 1g/kg is not only ineffective but possibly harmful for PANDAS kids. I certainly don't want to seem like I'm insisting you contact him, but he is the guy who has treated 500 PANDAS patients, and it really might be worth an e-mail exhange to get his thoughts. He had a long covnersation with our pediatrician to explain his protocol so I know he would be happy to speak to your doctor.

 

I have yet to read of anybody on here who was having success with the monthly 1g/kg dose, but when I spoke to Dr.K a few weeks ago, he had been inundated with calls from people whose children were getting the dose that your son is getting who were not seeing postive results. I can guarantee that he will say that the dose your immunologist is giving your son is too low. Also, after getting the higher dose, 1.5 g/kg or 2g/kg, there may be no need for further treatment, but if there is further IVIG, it won't be for 2 to 3 months. So the insurance company pays the same or possibly much less in the long run. That might be the argument you need to get them to go along with it.

 

Good luck, Alex

[melanie]

Hi Melanie,

 

Did your doctor swab your son's thoat to see if it was a strep infection?

 

Also, just to put it out there again, Dr. K is adamant that 1g/kg is not only ineffective but possibly harmful for PANDAS kids. I certainly don't want to seem like I'm insisting you contact him, but he is the guy who has treated 500 PANDAS patients, and it really might be worth an e-mail exhange to get his thoughts. He had a long covnersation with our pediatrician to explain his protocol so I know he would be happy to speak to your doctor.

 

I have yet to read of anybody on here who was having success with the monthly 1g/kg dose, but when I spoke to Dr.K a few weeks ago, he had been inundated with calls from people whose children were getting the dose that your son is getting who were not seeing postive results. I can guarantee that he will say that the dose your immunologist is giving your son is too low. Also, after getting the higher dose, 1.5 g/kg or 2g/kg, there may be no need for further treatment, but if there is further IVIG, it won't be for 2 to 3 months. So the insurance company pays the same or possibly much less in the long run. That might be the argument you need to get them to go along with it.

 

Good luck, Alex

 

 

Hi Alex

 

 

I am not disagreeeing with you.I spoke to her about this and she doesnt disagree also she wants to treat his immune issues first and see how he progresses(sp) I am going to give it 3-4 treatments at this dosage,and see.

 

Thanks Melanie