IVIg Protocol

[BoyIowa]

Not sure if I am doing this right; first time posting a new topic.

 

My son was diagnosed with PANDAS and Lyme disease. He had symptoms for over a year. Like most, we have been rejected for studies because of the lack of diagnosis in its early stages. We went to see Dr. K in Chicago and have been recommended for IVIg. We are on antibiotics from a Lyme literate doctor in Iowa, Dr. P. If the antibiotics are not fully effective, he recommends IVIg.

 

We are seeing that the antibiotics aren't as effective as they used to be and are considering IVIg. We have found out that our insurance covers the procedure and the medicine, but we were looking to have it done closer to home and by a PPO doctor/facility.

 

Our local pediatrician said that he would be willing to do IVIg for us if we could get Dr. K's protocol. Our local pediatrician has done IVIg for other disorders, but not PANDAS. We asked Dr. K and he said "Unfortunately because of legal implications I cannot provide the protocol".

 

Does anyone know what Dr. Ks protocol is? Is it more effective than other protocols? Is it much different of more effective than NIHM suggests?

 

I know that most on here are parents, not doctors, but it seems we know more than some of the doctors we have seen. I have received loads of helpful information from this site, and any appreciate any help on this topic.

 

Thank you in advance

[Jodine]

He can't give it out. You need to have it done by someone who is familiar with PANDAS. My nephew sees Dr. K and we're glad that we chose him as he is one of the most knowledgeable about PANDAS PITSAND.

 

I would really try to get the IVIG with Dr. K.

 

 

 

 

 

 

 

Not sure if I am doing this right; first time posting a new topic.

 

My son was diagnosed with PANDAS and Lyme disease. He had symptoms for over a year. Like most, we have been rejected for studies because of the lack of diagnosis in its early stages. We went to see Dr. K in Chicago and have been recommended for IVIg. We are on antibiotics from a Lyme literate doctor in Iowa, Dr. P. If the antibiotics are not fully effective, he recommends IVIg.

 

We are seeing that the antibiotics aren't as effective as they used to be and are considering IVIg. We have found out that our insurance covers the procedure and the medicine, but we were looking to have it done closer to home and by a PPO doctor/facility.

 

Our local pediatrician said that he would be willing to do IVIg for us if we could get Dr. K's protocol. Our local pediatrician has done IVIg for other disorders, but not PANDAS. We asked Dr. K and he said "Unfortunately because of legal implications I cannot provide the protocol".

 

Does anyone know what Dr. Ks protocol is? Is it more effective than other protocols? Is it much different of more effective than NIHM suggests?

 

I know that most on here are parents, not doctors, but it seems we know more than some of the doctors we have seen. I have received loads of helpful information from this site, and any appreciate any help on this topic.

 

Thank you in advance

[BoyIowa]

Dr. K is out of network for our insurance, and the facility that he uses for the IVIg is not in network either. We can't afford the treatment right now, if they want cash out of pocket like our doctor visit. We want to get it done soon if, as he says, it is better to not wait too long for the IVIg.

 

He can't give it out. You need to have it done by someone who is familiar with PANDAS. My nephew sees Dr. K and we're glad that we chose him as he is one of the most knowledgeable about PANDAS PITSAND.

 

I would really try to get the IVIG with Dr. K.

 

 

 

 

 

 

 

Not sure if I am doing this right; first time posting a new topic.

 

My son was diagnosed with PANDAS and Lyme disease. He had symptoms for over a year. Like most, we have been rejected for studies because of the lack of diagnosis in its early stages. We went to see Dr. K in Chicago and have been recommended for IVIg. We are on antibiotics from a Lyme literate doctor in Iowa, Dr. P. If the antibiotics are not fully effective, he recommends IVIg.

 

We are seeing that the antibiotics aren't as effective as they used to be and are considering IVIg. We have found out that our insurance covers the procedure and the medicine, but we were looking to have it done closer to home and by a PPO doctor/facility.

 

Our local pediatrician said that he would be willing to do IVIg for us if we could get Dr. K's protocol. Our local pediatrician has done IVIg for other disorders, but not PANDAS. We asked Dr. K and he said "Unfortunately because of legal implications I cannot provide the protocol".

 

Does anyone know what Dr. Ks protocol is? Is it more effective than other protocols? Is it much different of more effective than NIHM suggests?

 

I know that most on here are parents, not doctors, but it seems we know more than some of the doctors we have seen. I have received loads of helpful information from this site, and any appreciate any help on this topic.

 

Thank you in advance

[BoyIowa]

The other problem that we have is that we don't have anyone near where we live that is 'familiar' with PANDAS. Our current ped is seeing another boy with PANDAS too, and he is willing to learn and help these kids.

 

Dr. K is out of network for our insurance, and the facility that he uses for the IVIg is not in network either. We can't afford the treatment right now, if they want cash out of pocket like our doctor visit. We want to get it done soon if, as he says, it is better to not wait too long for the IVIg.

 

He can't give it out. You need to have it done by someone who is familiar with PANDAS. My nephew sees Dr. K and we're glad that we chose him as he is one of the most knowledgeable about PANDAS PITSAND.

 

I would really try to get the IVIG with Dr. K.

 

 

 

 

 

 

 

Not sure if I am doing this right; first time posting a new topic.

 

My son was diagnosed with PANDAS and Lyme disease. He had symptoms for over a year. Like most, we have been rejected for studies because of the lack of diagnosis in its early stages. We went to see Dr. K in Chicago and have been recommended for IVIg. We are on antibiotics from a Lyme literate doctor in Iowa, Dr. P. If the antibiotics are not fully effective, he recommends IVIg.

 

We are seeing that the antibiotics aren't as effective as they used to be and are considering IVIg. We have found out that our insurance covers the procedure and the medicine, but we were looking to have it done closer to home and by a PPO doctor/facility.

 

Our local pediatrician said that he would be willing to do IVIg for us if we could get Dr. K's protocol. Our local pediatrician has done IVIg for other disorders, but not PANDAS. We asked Dr. K and he said "Unfortunately because of legal implications I cannot provide the protocol".

 

Does anyone know what Dr. Ks protocol is? Is it more effective than other protocols? Is it much different of more effective than NIHM suggests?

 

I know that most on here are parents, not doctors, but it seems we know more than some of the doctors we have seen. I have received loads of helpful information from this site, and any appreciate any help on this topic.

 

Thank you in advance

[Rain]

We had a very similar experience. I will send you a PM.

[little red]

Hi there.

 

Some on this forum probably remember more details, but I remember reading on a post that Dr. K. once was working with another doctor to give an out of town PANDAS child IVIG. There was some kind of complication or reaction and the other doctor didn't really want to handle it or solve the problem. Dr. K. wasn't even there. I think it created some problems and put Dr. K. in a bad position. So, it kind of makes sense that he has shyed away from that sort of thing.

 

Although, I do definitely understand your position regarding insurance and related medical costs!

 

I hope everything works out well!

[Worried_Dad]

Hi there.

 

Some on this forum probably remember more details, but I remember reading on a post that Dr. K. once was working with another doctor to give an out of town PANDAS child IVIG. There was some kind of complication or reaction and the other doctor didn't really want to handle it or solve the problem. Dr. K. wasn't even there. I think it created some problems and put Dr. K. in a bad position. So, it kind of makes sense that he has shyed away from that sort of thing.

 

 

I'm afraid this was us: http://www.latitudes.org/forums/index.php?showtopic=4447

 

The local pediatric neurologist who agreed to "arrange" local IVIg for our ds refused to get involved when our son became dizzy, weak, and nauseous halfway through the 1st day. The local infusion clinic didn't correctly follow Dr. K's protocol: they were infusing about twice as fast as Dr. K recommends (even though I told them this up-front and during the procedure). The ped neuro's office was literally 1 floor away from the infusion clinic, but she refused to get involved and told the infusion nurse to contact Dr. K, effectively leaving him "on the hook" for supervising a procedure from hundreds of miles away.

 

Sigh. SO sorry to hear that this may have discouraged Dr. K from working with local docs on behalf of PANDAS kids. If this is the reason, then the local ped neuro here did more than just a gross disservice to our ds: her refusal to accept responsibility for a patient has harmed the entire PANDAS community.

 

From what I recall, the main things about Dr. K's protocol that were unique were:

 

• Gamunex Ig @ 1.5g / kg
  
• Infusion spread over 2 days
  
• Very slow infusion rate that gradually ramps up, depending on patient reaction (almost twice as slow as most "standard" rates at infusion clinics)
  
• Lots of fluids (D5W? IV drip) before and after (Gamunex cannot be flushed with saline!)
  
• Benadryl before procedure to relax the patient
  
• Decadron steroid after infusion if patient's condition is severe
  

 

The main thing about Dr. K's protocol when he directly supervises at the Oakbrook Surgical Center outside Chicago - he and the staff there are experts at dealing with the special challenges presented by PANDAS kids in exacerbation. We did 3 rounds there, and I don't believe our ds would have made it through the procedures at any "standard" infusion center. It takes extraordinary patience and creativity to make this work for a kid with extreme OCD, anxiety, and/or tics.

 

Wishing you the best of luck, BoyIowa. It shouldn't be this hard to get help for suffering children!!!

[Iowadawn]

BoyIowa-I PM'd you. We are in Iowa and see Dr. P. We have gone the Dr. K route. We get IVIG done in Des Moines now. Dawn

[cab40]

Hello,

 

I really want to know from those of you out there both familiar with Dr K's protocal, used him or something like it What protocal should be done; can the one time high dose help them or do they need frequent infusions, what has been your experiences. thank you so very much.

Edited March 23, 2012 by cab40

[Salinamom]

Did you manage to get dr k protocol? We are not having luck getting it either, so desperate and frustrating and helpless to see our child suffers..

[Mom23boys]

I have no information about Dr Ks protocol but agree wholeheartedly that depending on your child, IVIG in a center not used to dealing with pediatric patients or PANDAS kids may be a nightmare. I have a friend who just went through this with her child. First IVIG done in an infusion center with pediatric staff and dealing with a lot of PANDAS kids and approved for home health infusion for the next one. This was a disaster. She ended up driving 4 hours to the center where the original infusion was made, with pediatric nurses on staff and who do multiple PANDAS IVIG infusions a week. The home health nurse tried two days in a row and due to severe anxiety, not cooperating, etc. could not get a vein.

 

This may not be the case for milder cases, but when you deal with the anxiety level of so many of these kids, plus the difficulty of dealing with pediatric patients in general (not the least of which is getting a vein in a tiny arm, which you want to get right the first time!), you want someone with experience dealing with kids.