Reply To: 12-year old son newly diagnosed

July 30, 2012 at 4:05 pm

Sorry, you asked about the repeat ncv/emg. We had an initial one, then when we were stable the first time and about to start weaning, we did another for a new baseline, it was normal. After the six month period of weaning and symptoms returning, we did another and there were again slowed velocities. this was the tangible proof to show a relapse w/out treatment. Such info is good to have (tangible proof) for the insurance comapny should you have any problems getting back on ivig. As well it can be used to proove that ivig does work. Another unit of measurement, tangible, other than the typical neuro assesmnet is doing a variety of tests through PT. In the begining we had a scrip for PT and did a variety of baseline tests, typical bend and stretch, ability things etc. As well, they used a dimometer to measure grip stregnth. It was something with numbers, real, not subjective measurements. Obviosly not as accurate as a ncv/emg because of variables such as fatigue etc, but it was something. When you do get another ncv/emg, try to insist on the same neuro to do the test. Bring your old reports so that they can replicate the same test, same nerves, same distance measurements etc. Same room temp etc. Apples to apples.

You mention questions to ask, honestly, you have probably learned more from your research than your doc knows. I don’t mean that negatively, it is just that many docs do not have experience with cidp. I would probably ask the doc is she would consider giving loading doses for a year or so and simultaneously wean off the steroids to see if he could do it w/ivig alone. Besides, steroids are not a long term solution, if your son could be off of them before school it would be easier on him with the sleeping issues and mood swings as well as the obvious medical ramifications. True he may need them or some other form of imunosuppressant should ivig alone not work, but finding out through trial and error would be beneficial. Maybe you could also ask about the pt eval for another form of baseline testing. If your doc does do loads, you can get them done at home through home health. That is what we do, same nurse for 6 years, they play xbox and shoot bb guns outside, its like a little man party in the basement, we try to keep it as normal as possible. With you being a nurse, you might be able to have your doc order the ivig through gammaguard or gammunex or whoever and you do the treatment at home. You can also get a fanny pac pump and be mobile if you wanted. We just do the regular pole pump and go directly from the bottles, no pooling like you do for the fanny pac. You can also sign up with the various ivig companies to get on their “frequent flier” program… just kidding, it is a loyalty program, you sign up and they keep track of what you use and should there ever come a time you loose your insurance, they will provide a certain amount for free to bridge the gap. As well, if there was ever a recall, you get a call direct. I would probably ask about considering a port. You might want to have the surgery before school. The first port took about 10 days before it was reasonably healed. If you do go that route make sure they give him an adult port so that it will last. I think ours is called pass port or something, it has three landmarks (little dots) that protrude for easier access. Also have them leave him accessed after the surgery and just flush it so that he is ready for his first treatment. We had so much swelling, they did not have a needle long enough to go through the tissue to the port and we ended up doing peripheral until it healed. For our second port (3 years later, child to adult port) I asked to leave it accessed) I know I am all over the place bombarding you with info, but in case I get tied up with things with my other son going to college and my dad (nursing home ) and Kev at the doc, I wanted to tell you everything I could think of.