Will doctor agree with protocol

December 31, 2010 at 6:28 pm

[QUOTE=Dells mom]Laurel,

I am hoping this protocol helps my son and your husband. Will your dr. listen and follow the directions?

We are so luck to have a dr. that will take advise as well as give advise. I read so much on the net and share it with him and he doesn’t treat me like an uneducated mom.

We are working on getting to Mayo. The weather will probably be an obstacle, I love to drive places but guess flying would be the best.

Yesterday, we tried the protocol for the first time. It was very nerve racking giving a 34 lb. child 1 gram of solumedrol but we did and are not seeing any bad side affects, yet. We go back Monday for another 04 mg/kg of ivig. It only works out to be 6 grams but if you could how much he’s getting for the month, it is more than before.

Good luck and keep me posted.


Hi Lori,
I am a bit dubious whether hubby’s neuro. would follow the protocol (or even take the time to listen to the pod cast). One major thing we are dealing with in British Columbia is a committee that has drawn up lists of approved medications that will be covered by the Provincial medical plan. They want cheaper drugs substituted for expensive drugs. They are basically saying that IVIG is too costly and next on the list is oral steroids to be substituted instead of IVIG, and then adding Imuran and Cellcept as steroid sparing drugs. I think they push oral steroids instead of IV steroids because the cost of the patient going to medical daycare to receive the IV meds. We don’t have any home treatment here.

Two years ago I won the battle to keep hubby on IVIG when I created a big stink with the neuro. I asked, “So you are saying my husband has to take a more dangerous drug (Cellcept) with less efficacy because the government won’t pay for IVIG? I think that is unethical.” (Hubby had the episode of sepsis when he took Imuran.) The neuro. went quiet when I asked the question and said we would have to go before a committee and see if they would agree to carrying on with the IVIG. We kept waiting for the summons to the committee which never came. I suspected the neuro said that patient’s wife is a retired nurse and is going to make a big stink if we push for the Cellcept and cut off the IVIG. However, the neuro at the last six month appointment starting making the demands to decrease the IVIG and said she couldn’t justify its use indefinitely without him trying other drugs first. At that time we asked for a referral to a different neuro. It turns out the other neuro. (who we hoped would be a little more pro patient instead of pro government) has a two year wait list–so hubby will need to stick with the current neuro. while waiting for the other one. The thing that really worries me with the current neurologist is her belief that other drugs are just as good as IVIG–sort of the denial that IVIG is the front line effective treatment. I find that incredible. It is like she disregards all the literature or doesn’t read it. And even the fact that she thinks oral steroids are just as good as IV pulsed steroids.

Hubby’s GP is a good guy and he does the current prescribing of the IVIG. In theory, he has to follow the consult reports from the every six month appts. with hubby’s neuro. But so far he is very open minded and when hubby takes him an article to read or tells him that his hand is weak after the dose was reduced as directed by the neuro, the GP will just up the dose again without consulting with the neuro. But probably at some point he will get his knuckles wrapped for not following the neurologist’s orders. Our system has some real kinks in it. While we are lucky to have socialized medicine overall, we have some major glitches happening within the system that results in some pretty poor standards.

I get really tired of the six month appts. where the focus is fighting for IVIG versus “how are you doing, what works for you, how can we make sure you are at your best and are comfortable with the treatment you are getting”. I still believe that to win this battle, I will likely have to bring in the media and complain loud and long about the lack of ethics when treatment is based on cost and not what works and what is safest. And I do get supremely annoyed with hubby who won’t speak up for himself at these appointments. He leaves me to be the bad guy and he is Mr. Friendly and Smiley while I am asking the questions and saying things like, “My husband is quite frightened of Cellcept since he had sepsis with Imuran. He has frequent bouts of diverticulitis and has frequent chest infections so I don’t think he is a good candidate for Cellcept. He does well on IVIG”. The neuro. just frowns and agrees to another six months of IVIG, but makes it clear that I am a pain in the ass. Sorry for the long ramble, but I needed to let it out .

I am just hoping the neurologist will have seen the pod cast by the time we go back in March.

Thanks for your help Lori. The forum has been a blessing to me. Dawn (Kevie’s mom) has been so helpful over the years too.

Happy New Year!