Emilys_mom
Your Replies
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July 6, 2012 at 4:37 pm
My daughter says IVIG makes her feel “tingly” inside. She has always had a drastic improvement within days of receiving a loading dose of IVIG. For some people it can take longer though. It’s different for everyone.
Make sure you stay hydrated! It is probably the most important way you can help yourself. If you get dehydrated you are more likely to get a headache or other side effects. So drinks LOTS of water!
Also, you can ask to be premedicated with Benadryl and either Motrin or Tylenol.
Make sure to report back on how you are doing.
KellyJuly 6, 2012 at 4:17 pmHey Fred -As Laurel said, I have quite a bit of experience with this stuff. My daughter had a Broviac catheter (similar to your Permcath but with only 1 lumen) for a few months when she was 4 years old. It got infected & then we switched to a port. I believe she had a Port A Cath….not 100% on that though. It’s been so long, lol. Her port lasted from August 31, 2006-April 29, 2011.
Permacath’s are more prone to infection & are usually only used for short periods of time due to that risk. A port is MUCH less likely to get an infection because it is under the skin. As long as your skin in cleaned thoroughly (I requested cleaning with an alcohol swab & then a Chloraprep) and proper sterile technique is used, there is low risk of infection. Make sure your nurse wears a mask & gloves too. The nurse should also put a sterile bandage (usually a Tegaderm) over the port immediately after it is accessed. Basically, just make sure you have a nurse that knows what they are doing & do NOT be afraid to ask questions or speak up if you are concerned.
You can let the nurse know you are “prone to infection” & they should take extra care. Emily got that label, after her Broviac infection, and everyone had to be even more careful while accessing her port because of it.
The surgery to get your port put in is outpatient. You will probably be sore for a few days afterwards & there will probably be some bruising at the site. Find a really good surgeon & ask him/her to use dissolvable stitches. You will be advised to keep the site bandaged & dry for a few days after surgery to prevent infection of the incision. After that the only time it has to be covered is while it is accessed.
Honestly, getting a port for Emily was the very best decision I could have made for her at that time. I highly recommend them if you are having issues with vein access. It made life so much less stressful & her port lasted for nearly 5 years. It would have lasted longer but she grew (doubled in size) and the catheter wasn’t positioned correctly anymore.
If you have any questions feel free to ask.
KellyJune 27, 2012 at 8:12 pmI totally understand where you are coming from. My daughter was 4 when she was dx’d with GBS & later CIDP. Her neuro has never really treated anyone with CIDP before – let alone seen someone with her variant. It took a lot of researching on my part to finally convince him that I knew what I was talking about. Once he finally saw that I had indeed done my research, then he was more willing to listen to me.
I ended up devising my daughter’s treatment plan. I was allowed to do that because I was the one who was with her all the time & I could see deterioration before the dr could. When he finally acknowledged that & we got her on the correct treatment schedule for her, she started improving & hasn’t stopped.
Finding a good dr is key but also finding a dr that is willing to listen to YOU is also important.
Good luck with the new dr. Did you ask to be put on the cancellation list? Then maybe you can get in to see him/her sooner.
Kelly
June 27, 2012 at 8:06 pmMy daughter Emily has had CIDP for 5 1/2 years now & she has received more IVIG than anyone I have ever heard of. It took us 5 years to get to IVIG every 5 weeks. She is now moving to every 6 weeks.
Over the years I have learned that just because the Dr wants to try something new – it does NOT mean you have to agree to it. You have the RIGHT and obligation to say NO if you are unsure about a new treatment plan. And if the dr doesn’t like it – then find a new one! Hopefully one that will listen to what you have to say & take your feelings into considerant.
By the way – going 5 weeks between treatments is AMAZING!
Kelly
June 27, 2012 at 7:59 pmWhat part of MI are in you? My dad is the administrator of a nursing home/rehab facility in the Detroit Metro area.
Dr. Richard Lewis is a good dr to go to for CIDP. In fact, he is the “Lewis” of the Lewis-Sumner variant of CIDP. He is out of Wayne State…here is his contact info: Dr. Richard Lewis Phone: 313-577-1244 Email: ralewis@med.wayne.edu
Kelly
June 27, 2012 at 5:19 pmI’m glad you are seeking a 2nd opinion & that your current neuro is doing more research.
Do you know what the flow rate for your son’s IVIG is? An increase in blood pressure while getting IVIG is not uncommon & the rate can be decreased to help with this. I have not come across research suggesting CIDP can cause high blood pressure – but I have not actively looked into that research either. I’m guessing, if the CIDP is the cause, it is because his autonomic nervous system (which controls heart rate, breathing, swallowing, etc) has been affected.
I hope to not scare you with my next statements.
May I ask why your son is also taking Imuran? You may find that after getting him on a better IVIG schedule that he will not need the Imuran. I Googled “Imuran & children” and found a link to the FDA site. Here is the link if you would like to check it out: http://www.fda.gov/Drugs/DrugSafety/ucm250913.htm
It says the use & benefits of using drugs like Imuran on pediatric patients should be carefully weighed due to the increased risk of a rare & fast growing cancer.
Kelly
June 18, 2012 at 5:17 pmI’m very sorry to read about your tough time. It seems your symptoms do resemble GBS or CIDP but it could also be other illnesses as well. There are SO many of them that present the same way. Your dr could diagnose you with “atypical CIDP” so your insurance company will continue to cover your treatments. If your diagnosis later changes it will be ok because MANY people are misdiagnosed.
When the MRI’s were done, did they do them with & without contrast? MRI’s done with contrast will show inflammation.
If you are near a Mayo clinic, I think it would be wise to call them to get an appointment. I (pretty much always) recommend Dr. Dyck at Mayo in Minnesota. My daughter has not seen him but I have researched him & I agree with his treatment protocol. There are people who post here who have seen him.
There are also Centers of Excellence that the GBS/CIDP Foundation consider to be highly qualified hospitals to treat the 2 illnesses. You can find those on the home page for the foundation.
Kelly
June 12, 2012 at 12:21 pmAt what point in all of this was there a mention of polyclonal gammopathy? If you had blood work taken after receiving IVIG – it could affect your blood work. IVIG would show abnormal levels of immunoglobulin in any blood work done.
I can’t remember – did you have a brain MRI? It may explain the neuro opthamologist’s findings.
Kelly
June 12, 2012 at 12:03 amThis thread is why I wish we still had private messages. It was a way to give out your personal info so others could contact you.
I set up a “throw away email” that I can give out in just this instance. Once someone emails me, I will then email them from my real email address.
Kelly
June 12, 2012 at 12:01 amIt’s very easy to appeal to your insurance company. First, your dr needs to draft a letter stating that the additional MRI’s are necessary to dx you. It will be cheaper to do them all at the same time – so that will appeal to the insurance company. Usually it works & you don’t need to take additional steps.
I think it’s pretty crappy that some person in a cubicle gets to decide what tests/treatments are necessary. I think that should be left up to the dr’s – after all that’s what they went to medical school for. Insurance companies are in the business to make money – it’s the way the system is set up.
We have been VERY fortunate that our insurance company hasn’t given us any problems with covering Emily’s treatments/tests. (KNOCK ON WOOD!)
Good luck!
KellyJune 11, 2012 at 5:48 pmForgot to add…she was dx’d with cranial nerve inflammation & opthalmoplegia.
Here is a good link explaining opthalmoplegia:
http://medical-dictionary.thefreedictionary.com/ophthalmoplegiaKelly
June 11, 2012 at 5:44 pmEmily was not dx’d with optic neuritis. She was dx’d with cranial nerve inflammation. At one point the eye dr said if her eye was not better in a year that we would have to do surgery to repair the nerves & muscles. Luckily there was enough improvement that she didn’t need to have the surgery.
Kelly
June 10, 2012 at 2:07 amMy daughter had the up & down ride for awhile. We finally figured out she needed treatment 3 days before her symptoms showed up. CIDP is attacking your myelin before your symptoms appear.
At one point she was having symptoms 10 days post infusion. We did a loading dose & then put her on weekly infusions. She did that for a LONG time – about a year. We have gradually moved her infusions apart & she’s now getting them every 5 weeks & we will soon be going to every 6 weeks.
My recommendation would be to talk to your dr about doing another loading dose (so you can get back to baseline) & then start weekly infusions again. It sounds like your body wasn’t quite ready to go longer between treatments.
ALS does not respond to IVIG because it is not an autoimmune disease.
Kelly
June 10, 2012 at 2:02 amI don’t know anyone in the Denver area but I regularly (like always) recommend Dr. Dyck out of Mayo in Minnesota.
Google him.
There have been quite a few people on this site who have gone to see him.
Kelly
June 10, 2012 at 1:59 amI can tell you from experience, it’s better to just get it all done at one time. My daughter was 4 when her symptoms started. She was sent to the hospital & on the 1st day a brain MRI was ordered. It came normal then was changed to she has a slight chiari malformation (her brain stem is 2mm too long). On the 2nd day in the hospital she had to be sedated again & a spinal MRI was performed.
To me, it just makes sense to do both. That way the dr can look for any lesions, masses, inflammation, etc that could be causing your symptoms. I believe it’s more comprehensive health care.
Kelly
