Still lost on why antibiotics work for some and not others

[lismom]

I am so scared that antibiotics are not going to take his symptoms all away. He is better having been on antibiotics for 3 months but still has mild ticcing and emotions. And still looks sick half the time. Saving sammy never had ivig. Someone posted when do you know when this is not working. Of course every child is different, this disorder is so varied, and there are no guidelines. I get nervous reading the posts of being on antibiotics for over a year and it didn't work. But then you hear about cases where child has been on for over a year and things turn around. So confusing sometimes. I know some of this is still uncharted terrritory. I guess I am not always sure I am doing everything I should. Kathy

[sf_mom]

I guess it comes down to how aggressive do you want to be on behalf of your child?

 

IVIG was NOT a scary proposition for our family because it saved our younger son's life and I was treated with IVIG while undergoing fertility treatments. We wanted to hit PANDAS hard in hopes we would never see another episode. We were actively pursuing IVIG from the moment we concretely knew it was PANDAS in August. He is 4 weeks 3 days post IVIG and 98% better. Prior to IVIG there was a baseline of symptoms we had gotten used to over the last year and passed it off as just part of his personality or normal development for his age! Now, we know better.

 

Our energy has now turned to how do we support his weakened immune system and prevent him from getting ill again? Our entire house is now taking probiotics, his younger brother and sister are taking SyImmune to boost their immune system, we are very proactive about any illness in the house and treat any fever aggressively. We are building our inventory of Dr.'s for the 'just in case'..... We now have an Immunologist on board locally that if our son should have another episode he will treat him. We are considering another IVIG treatment to boost him through THIS winter without having to vaccinate to help quite auto-immune response while he gets better.

 

-Wendy

[lismom]

One family was able to get 1 ivig for pandas from similar insurance co. but he was in the middle of crisis and was being admitted to the hospital to get the ivig. The immunologist around my area are not onboard. I have a wonderful pediatrician who writes my zith scripts but my insurance won't pay for that as well. I pay every month for zith. I do have an appointment with the chief of neurology at the Univer. of Rochester, NY. on Nov. 4. He said they just had discussions about PANDAS at their conference for TS. I will bring up ivig to him becuase of these ongoing symptoms. Kathy

[EAMom]

why won't insurance pay? will they only pay for 5 days/mo? We had that problem with our old HMO but got an exemption (is that what you call it) so then they paid for all of it.

[lismom]

why won't insurance pay? will they only pay for 5 days/mo? We had that problem with our old HMO but got an exemption (is that what you call it) so then they paid for all of it.

 

 

yes, we only got 5 pills. The insurance co. was so happy to quote from Dr. Kurlan. What i really want is ivig. Just don't know how to get it yet. We are not in an exaserbation and we are not immune deficient. Kathy

[KeithandElizabeth]

Lisman:

 

Can you remind me as to where you live again? I am just trying to think about doctors for you....

 

Elizabeth

[sf_mom]

Both my husband and I are self employed... so we have an independent PPO through Blue Cross with $5,000 deductable. They did cover a good portion of bill for Dr. K/IVIG unfortunately most of it went toward our deductable. Its definitely worth looking into IVIG and your insurance coverage. Dr. K was $2,400 for two days at surgery center, medication 'IVIG' is approximately $1,000 per 10 pounds of child and surgery center was $1,600 for two days.

 

-Wendy

[lismom]

Lisman:

 

Can you remind me as to where you live again? I am just trying to think about doctors for you....

 

Elizabeth

 

 

We live outside of Buffalo Ny. I do have an appt. with the chief neurobiologist at Univ. at Rochester dept. of movement disorders. He said he is familiar with PANDAS. We have no immmune deficiency and not in extreme symptoms right now because the zithromax does help some, but I know I should do ivig to resest immune system. Kathy

[EAMom]

Why don't you try Dr. Bouboulis? http://www.latitudes.org/forums/index.php?...art=#entry41096

 

btw...United Health Care PPO was good for us...covered IVIG and they cover the Azith. (all 30 days).

 

Have you done bloodwork through Dr. Cunningham? Our immunologist agreed to IVIG based on those results.

 

Any insurance co. that spouts Kurlan is evil.

[EAMom]

I pay every month for zith. I do have an appointment with the chief of neurology at the Univer. of Rochester, NY. on Nov. 4. He said they just had discussions about PANDAS at their conference for TS.

 

I would be leary about anything that is said about PANDAS at a TS conference. The TS community seems to be very anti-PANDAS. That is where Kurlan and Singer are coming from...all their proported PANDAS patients (in their studies) are actually pulled from Tourettes Study groups.

[EAMom]

why won't insurance pay? will they only pay for 5 days/mo? We had that problem with our old HMO but got an exemption (is that what you call it) so then they paid for all of it.

 

 

yes, we only got 5 pills. The insurance co. was so happy to quote from Dr. Kurlan. What i really want is ivig. Just don't know how to get it yet. We are not in an exaserbation and we are not immune deficient. Kathy

 

We weren't in a big exacerbation/crisis either when our immunologist agreed to do the IVIG. But, we were still having symptoms (and milder exacerbations) despite being on 250mg/day Azith. The Cuningham blood results were the real clincher for us, in getting IVIG done locally. (Dr. K would have done it without.)

[lismom]

Why don't you try Dr. Bouboulis? http://www.latitudes.org/forums/index.php?...art=#entry41096

 

btw...United Health Care PPO was good for us...covered IVIG and they cover the Azith. (all 30 days).

 

Have you done bloodwork through Dr. Cunningham? Our immunologist agreed to IVIG based on those results.

 

Any insurance co. that spouts Kurlan is evil.

 

 

I couldn't agree more. My insurance co. is called Independent Health here in NY. They are so bad. I am going out to a doctors appt Nov. 4 to see the chief neurobiologist/movement disorder at the Univ. of Rochester, NY. I made sure to ask that he is in no way associated with Dr. Kurlan and his secretary said no. Dr. Mink, who I am seeing says he is familiar with PANDAS. We will see how familiar he is. While I am there I should stop by Kurlan's office and give him a piece of my mind... Thinking that maybe Dr. Mink might be willing to run some blood tests. We'll see, if not I'll do the Cunningham study. Kathy

[KeithandElizabeth]

I agree with EAmom about possibly trying Dr. Bouboulis. I often speak with another mother who does not post, but has a child with PANDAS and they are very happy with Dr. Bouboulis. Plus, he is recommended by Dr. Leckman. And, he is in Connecticut, which is probably closer than many of the other doctors treating PANDAS.

 

Elizabeth

[coco]

We have been working with Dr. Bouboulis in Darien for the past 4 months. We did our first ivig in chicago with dr k and our second with dr. b. We think very highly of him and he was a great referral from Dr. Leckman at Yale who we also saw. He's about an hour from NYC.

[Betty04]

why won't insurance pay? will they only pay for 5 days/mo? We had that problem with our old HMO but got an exemption (is that what you call it) so then they paid for all of it.

 

 

yes, we only got 5 pills. The insurance co. was so happy to quote from Dr. Kurlan. What i really want is ivig. Just don't know how to get it yet. We are not in an exaserbation and we are not immune deficient. Kathy

 

We weren't in a big exacerbation/crisis either when our immunologist agreed to do the IVIG. But, we were still having symptoms (and milder exacerbations) despite being on 250mg/day Azith. The Cuningham blood results were the real clincher for us, in getting IVIG done locally. (Dr. K would have done it without.)

 

 

EAMOM

 

We live in the SF area... do you mind sharing who your immunologist is? We are still looking into IVIG and have a phone consult with Dr K, but I would prefer to do the actual IVIG local.

 

Thank you.