Off all meds,including now, zithromax (now what)

[melanie]

Danny had his 6th LD IVIG (1g) and is now completly off meds He is getting the intrunuv 1mg daily now in the am (the ave dosage for a 140lb person is 4mg so Im thinking im appeazing myself)

 

The immunologist wants him off the azith and is giving him nystatin orally 500,000unit 3x a day for 2 weeks.

 

Hes doing pretty good not perfect but ok.

 

Had an appointment with Dr L but she cancelled.Think I may call Dr B and see him over the summer.

 

Melanie

[ajcire]

Why the nystatin? When Dr. L cancelled she doesn't reschedule for another day?

 

 

 

 

Danny had his 6th LD IVIG (1g) and is now completly off meds He is getting the intrunuv 1mg daily now in the am (the ave dosage for a 140lb person is 4mg so Im thinking im appeazing myself)

 

The immunologist wants him off the azith and is giving him nystatin orally 500,000unit 3x a day for 2 weeks.

 

Hes doing pretty good not perfect but ok.

 

Had an appointment with Dr L but she cancelled.Think I may call Dr B and see him over the summer.

 

Melanie

[EAMom]

Why is he off antibiotics? It seems kind of risky.

[melanie]

Off the antibiotis because she believes hes on it to long.Can cause soo many issues.Maybe she feels because he gets IVIG every 21 days hes covered.

[EAMom]

Off the antibiotis because she believes hes on it to long.Can cause soo many issues.Maybe she feels because he gets IVIG every 21 days hes covered.

 

That's lame. Tell her people with Acute Rheumatic Fever are on antibiotics for many many years (sometimes their whole life).

 

IVIG every 21 days hes covered

he's not even getting high dose IVIG

 

What happened to Dr. T? Can he put him back on abs? I just think taking Danny off is a big mistake.

 

I just feel like your doc is making stuff up without consulting a PANDAS expert or going by the Swedo research...that low dose will do anything, that Danny doesn't need antibiotics.

Edited May 22, 2010 by EAMom

[melanie]

Off the antibiotis because she believes hes on it to long.Can cause soo many issues.Maybe she feels because he gets IVIG every 21 days hes covered.

 

That's lame. Tell her people with Acute Rheumatic Fever are on antibiotics for many many years (sometimes their whole life).

 

IVIG every 21 days hes covered

he's not even getting high dose IVIG

 

What happened to Dr. T? Can he put him back on abs? I just think taking Danny off is a big mistake.

 

I just feel like your doc is making stuff up without consulting a PANDAS expert or going by the Swedo research...that low dose will do anything, that Danny doesn't need antibiotics.

 

Im not sure sometimes whats wrong or what right.I know shes doing exactly what she thinks is right.She knows PANDAS ,maybe not as good as some ,but she knows.I dont know about DR T I havent heard from him.Ill call him this week and maybe see him once scchool is out.I think I will also make an appointment with Dr B and see what he thinks.Remember danny is 16 .I dont think shes wrong,I think shes cautious.

 

Melanie

[Stephanie2]

Maybe she is right about being covered with IVIG every 3 weeks. If you are uncomfortable going "uncovered" you could give your son some Olive Leaf Extract which many within the autistic community use for strep/pandas control. I think they give it 2-3 times a day, away from probiotics.

 

Stephanie

 

Danny had his 6th LD IVIG (1g) and is now completly off meds He is getting the intrunuv 1mg daily now in the am (the ave dosage for a 140lb person is 4mg so Im thinking im appeazing myself)

 

The immunologist wants him off the azith and is giving him nystatin orally 500,000unit 3x a day for 2 weeks.

 

Hes doing pretty good not perfect but ok.

 

Had an appointment with Dr L but she cancelled.Think I may call Dr B and see him over the summer.

 

Melanie

[sf_mom]

I just wanted to follow-up with what EAMom stated.... I know personally of several situations where the child was been taken off antibiotics after IVIG and relapsed.... requiring further IVIG treatments. In one situation the child who had not had IVIG but was well for over 1 1/2 years was taken off antibiotics and six weeks later BAM the child is sick again.

 

I'd check his liver functions to confirm everything is o.k. and proceed with antibiotics if there is no problems. Once your child is 100% recovered and in remission perhaps then there might be some consideration for lowering dose.

 

Recent Guidelines From Europe for RF are 5 years or Adolescence. LIFE TIME if there is cardiac involvement.

 

http://www.orpha.net/data/patho/GB/uk-RF.pdf

 

AMA are attached to Diana's Website.

Edited May 22, 2010 by SF Mom

[melanie]

I just wanted to follow-up with what EAMom stated.... I know personally of several situations where the child was been taken off antibiotics after IVIG and relapsed.... requiring further IVIG treatments. In one situation the child who had not had IVIG but was well for over 1 1/2 years was taken off antibiotics and six weeks later BAM the child is sick again.

 

I'd check his liver functions to confirm everything is o.k. and proceed with antibiotics if there is no problems. Once your child is 100% recovered and in remission perhaps then there might be some consideration for lowering dose.

 

Recent Guidelines From Europe for RF are 5 years or Adolescence. LIFE TIME if there is cardiac involvement.

 

http://www.orpha.net/data/patho/GB/uk-RF.pdf

 

AMA are attached to Diana's Website.

 

 

I agree with you but he gets infusions every 21 days.So whats the point of the antibiotics (I think thats what she is saying.Oh I dont know whats wrong or whats right.Kindof feeling a bit discouraged .I think I get like this every couple of months.Hes doing well ,but I was hoping by now he would be perfect.Hes off all of the meds,thats a great thing ,I didnt want him on that anymore ,It wasnt making a difference anyway.He seems to be talking to himself alot not sure what thats about.UGGGGHHHH.

 

Melanie

[sf_mom]

I would get a second opinion from a PANDAS specialist. Your idea of going back to Dr. T or making an appointment with Dr. B is fantastic. Is there anyway to keep him on antibiotics until you are able to get to an appointment?

Edited May 23, 2010 by SF Mom

[tpotter]

I think Dr. B. would be a better option. He's also an immunologist, and knows from that perspective. Also, from our experience (and experience of others), you will continue to have difficulty getting followup from Dr. T, and that will make you crazier. BTW...my boys are also teens, and I, personally wouldn't take them off abx without consulting with a PANDAS specialist. Maybe, you could call Dr. Swedo? Dr. K. would certainly know,too.