Podcast from Dr. P. James B. Dyck on Cidp

    • Anonymous
      December 30, 2010 at 7:14 pm

      I tried to post this on another post but got the link wrong. I am hoping this one is correct.

      It lasts 30 mins. and is wonderful. I neuro. just started our 6 year old on the protocol and we are hoping and praying it works.

      http://beta.aanem.org/Education/Products/PhyPodcasts.aspx

    • Anonymous
      December 30, 2010 at 8:34 pm

      Lori,

      Yes, the link worked. Thank you. I first saw Drs. Tracy & Dyck at Mayo in the fall of ’09. Returned in Mar ’10 after following a plan similar to that mentioned in the podcast, without steroids or PE.

      I’m going back to Mayo in January.

      I hope you can get in as soon as possible.

    • Anonymous
      December 31, 2010 at 10:46 am

      How did the protocol work on you? What was your protocol.

      Lori

    • Anonymous
      December 31, 2010 at 12:29 pm

      Lori what a wonderful pod cast! You deserve a medal for posting that. My blood is boiling after listening to it. The information in it is so clear and informative. We have battled endlessly with hubby’s neuro. over IVIG dosing, and the pod cast clearly outlines a protocal saying why weekly dosing is best. My husband gets the monthly blast of IVIG and then loses function in his hand and his foot drop worsens before every monthly treatment. The post cast talks about the benefit of .4 G per kilo given weekley to prevent that.

      And then they even talked about how quickly they pick up on POEMS disease. One of our members here (Dieno) was recently diagnosed with POEMS and it sounds like the neuro’s here farted around for years without diagnosing him properly–yet the pod cast said there are red flags for that diagnosis and obviously they should have picked up on those red flags before he deteriorated so badly.

      I just wonder why these neurologists (like ours in Vancouver) don’t communicate with one another. It feels like we get 3rd world medical care here, and listening to the pod cast makes me determined to continue advocating for hubby. I was losing my drive due to pressure from his neuro. to go off IVIG and go onto Immuran or Cellcept. But listening to the pod cast saying IVIG is the front line treatment will inspire me to keep fighting for hubby. Yay Lori!!
      Laurel

    • Anonymous
      December 31, 2010 at 12:39 pm

      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.

      Lori

    • Anonymous
      December 31, 2010 at 1:47 pm

      Lori,

      First, let me say I agree with Laurel regarding the quality of your find. I’d love to learn how you found it. I am guessing that a podcast is linked to Ipods because the description at the end of the podcast, as did your previous link, mentioned apple.

      As for my protocol, here it is:

      In the beginning, in the fall of ’08, prior to Mayo, I also was treated with 5 one day doses, in the hospital, followed by 2 days, in a row, once a month at home. That treatment was halted as “too dangerous and ineffective…” It took me several months to be accepted at Mayo. I was self-referred, I did not have a Dr.’s referral.

      At Mayo in ’09 they stated, ‘..you likely did not receive enough IVIG often enough…’

      The plan (protocol) was for IVIG .4g/kg 2 times per week for three months followed by 1 times per week for three months with a return to Mayo to be evaluated.

      The evaluation, which consisted of EMG/NCV and in-office muscle testing, was positive and the taper, or titration, continued at 1 time per week for three months shifting to 1 time in two weeks to return in one year from the evaluation.

      In addition, Imuran (azathioprine) was added at 50mg day for a month, then 100mg/day for a month and then 150mg/day for a month. It has taken the azathioprine about 8 months to begin to ‘knock down’ my immune system.

      However, I became weaker on the 1 time IVIG in two weeks. I reported this, by mail. Ultimately, my follow-up appointment was moved up several months.

      By circumstance of fate I traveled both to Chicago NWU and to University of Calif San Diego (UCSD). I had one bi-weekly treatment at Chicago and then- I couldn’t get my next treatment on time.

      However, after about 3.5 weeks at UCSD I did receive a new 5 day dose of .4g/kg each day followed by an evaluation after three weeks. The evaluation, strictly in-office, showed considerable strength improvement in the muscle groups not affected by atrophy. Following the 5 day dose the UCSD specialist recommended .4g/kg 3 days per week every 3 weeks for “several cycles.”

      Happy New Year, Best of treatment results, and Hope you can get into Mayo quickly.

    • Anonymous
      December 31, 2010 at 4:32 pm

      I didn’t realize imuran and azithiprian (spelling) was the same thing. Dell was on that before 2 years of age for a few months but we didn’t see any improvement.

      I like to do research and typed in Dr. Dyck’s name. You have to watch it because him and his dad’s name is so similiar, too bad they didn’t name him something else, lol.

      Thank you so much for putting your protocol on the post.

      Happy New Year. It is hot here but raining.

      Lori

    • Anonymous
      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.

      Lori[/QUOTE]

      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!
      Laurel

    • Anonymous
      December 31, 2010 at 7:59 pm

      Laurel – If it makes you feel any better I get the same crap from Emily’s neuro about getting her off of IVIG. When I point out to him that she’s been on it for 5 years & look how far she’s come, his response is “That’s why she needs to get off of IVIG”. UGH…so frustrating!

      He also doesn’t like her having a port. Every single appointment, every 2 months, he gives me a lecture on the port. He wasn’t in the hospital holding her down while she was being stuck 5,6,7 times to get an IV, so he just doesn’t understand.

      You just gotta keep fighting. Maybe your husband’s GP would be willing to listen to the podcast?

      Happy New Year!
      Kelly

    • Anonymous
      December 31, 2010 at 8:35 pm

      Laurel,

      I am sure after all the years you have been together, you know your husband is not going to change so just continue to be the bad guy if you want to have him around for more years and doing well.

      We have really never had to fight hard for Dell’s treatments, we have been so blessed but I am sure there could come a day when we do have to fight. I will die fighting.

      Our dr. is around 60, I guess, and will retire one day. I always told him if he moves, we are moving with him, lol.

      The port has been a blessing to us. Now, I might jinx myself and Dell could have an infection next week but we are going on about 2-1/2 years with the port and no infections.

      We watch the nurses like hawks and especially when we go to the hospital and a new nurse does something to the port. Now, the home health nurses, I feel comfortable with them and they know how we feel about his port.

      We have asked a few nurses to wipe the port before inserting something into the line. Sad that you have to do that but better to speak upthan regret it later.

    • Anonymous
      December 31, 2010 at 9:04 pm

      Sadly you do have to watch nurses like hawks over clean and sterile technique. A couple of years ago the local paper published a huge article on infections in hospitals being traced back to lack of hand washing by nurses and doctors. The article said that patients should speak up and ask the nurse or doctor to wash their hands if they noticed that they hadn’t when they are doing a treatment on them. My favourite story is hubby coming home from hospital after having daily IV antibiotics. He said, “You know what? The nurse dropped an alcohol wipe when she was hooking me up, and she picked it up off the floor and used it!” I asked him why he hadn’t stopped her, and he said he felt it would be too critical. Sheesh!
      Laurel

    • January 1, 2011 at 2:26 pm

      That was a great podcast—thank you so much for sharing it. I am going to see if i can get my neuro to listen to it—any good neuro should be thankful to us for sharing it with them. I hope she will follow the advice of the 4 verses 2 gm per kg and the more frequent dosing–in my case listening to the protocal– probably every 2 weeks. once again great info!!!! for us google fanatics–can just google”Dr Dycks cidp podcast” and it will bring you right there too. Lori

    • Anonymous
      January 1, 2011 at 2:31 pm

      Lori 222,

      Just to make sure, you realize it is .04 grams, not 4

      Good luck

      Lori

    • Anonymous
      January 1, 2011 at 4:44 pm

      Lori is it .04 or .4?
      Laurel

    • Anonymous
      January 1, 2011 at 5:11 pm

      I am pretty sure it is .04 or 04. Dell is gettin 04mg/kg.

      I’m not much on math but think that is the same thing, maybe not. Listen to the podcast again. Notice when he says it, at what minute into the podcast and tell your doctor.

      Lori

    • Anonymous
      January 1, 2011 at 8:07 pm

      [QUOTE=Dells mom]I am pretty sure it is .04 or 04. Dell is gettin 04mg/kg.

      I’m not much on math but think that is the same thing, maybe not. Listen to the podcast again. Notice when he says it, at what minute into the podcast and tell your doctor.

      Lori[/QUOTE]

      Hi Lori, I just listened again. Dr. Dyck says 0.4 Grams per kilogram of the person’s weight. I am pretty good at math and if it was .04 Grams that would be only a tenth of the dosage Dr. Dyck recommends. In nursing school, we really had lots of emphasis on the correct math as drugs with decimal points mixed up could cause death. I enjoyed listening to the pod cast again.
      Laurel
      PS Hubby is going to email the pod cast to his neuro. Should be interesting to see if she has listened by the time we go for his March appt.

    • Anonymous
      January 1, 2011 at 9:57 pm

      Even though Dell is only getting 6 grams every 4 days, it will still be more at end of the month than his dosage before. He was getting 17.5 grams.

      Lori

    • January 2, 2011 at 9:09 am

      I’ll be sure to write 0.4 on my note to neuro—im not good with that medical math either –but im pretty sure theres a big difference with 4 and 0.4 when you’re talking per lb or kg LOL—thanks for listening to it again. I think im going to listen to it one more time before discussing it with my dr–Lori

    • Anonymous
      January 2, 2011 at 1:30 pm

      Laurel,

      Does your hubby go to one of the neuro’s that specialize in CIDP?

      I know there are a couple on Vancouver.

      I am also in BC and am having no trouble getting IVIG my GP orders it for me.

      Rhonda

    • Anonymous
      January 2, 2011 at 5:06 pm

      Rhonda I just sent you a private email.
      Laurel

    • Anonymous
      January 2, 2011 at 6:36 pm

      Lori,
      thanks for posting the link to the podcast. Although it does not apply to me – unfortunately – it still was very informative. What was interesting and new to me was the comparison between 2 different methods of administering IVIG. One was the “old” one of 1 treatment for 3 or so days repeated a month later and the other a sustained and more effective treatment without large gaps.

      Sorry to hear about Dells struggles. Hope things turn around. Take care.

    • Anonymous
      May 9, 2011 at 12:10 pm

      bump back to top

    • Anonymous
      May 9, 2011 at 9:59 pm

      I have posted an update on Dell, under a new post. Hope that was the correct way to post it.