How long does it take your ivig to affect your weak areas?
AnonymousJune 14, 2006 at 11:09 am
Our son is 2. He’s had about 8 ivig treatment for CIDP. He’s doing well. This past time, it was 34 days between last treatment and we could see his neck was affected. It’s usually 28-30 days between.
He could hold his neck up but would drop it slightly if he was looking at something on the floor or an object that was lower than eye level.
The treatment was on Thursday but the neck has not improved too much. I don’t know if it has at all, it’s very hard to tell, esp. since he can’t tell me.
How long does it usually take ivig to work on a body part?
Thanks for any advise.
AnonymousJune 14, 2006 at 11:28 am
I can’t say I speak for everyone as we are each different. I had been getting progressive tingling, numbness, and weakness in my extremities from Nov 2004 til hopsitalized in May 2005. I spent the first two weeks watching the drs aruge over what it could be and they put me in the rehab unit and I begain treatments to learnto live wit the dibilitations. Finally on the beginning of the third week I was transferred to the University of Kentucky Medical Center where I was dx within 24 hours and started my IVIG treatments. By the thrid day I felt like a new woman. I still was weak and had a lot of pain but I was out of bed walking the halls with my toddler by the end of the week it was without any assistance devises.
I have been taking IVIG monthly since then and still not up to par but doing much better. My dr has tried “playing” with my treatment schedule and I feel the effects of that immediately. I know that if I went anything beyondthe 30 days I was bedridden again. I finally talked him into trying them every 3 weeks instead of 4 weeks apart and it has been like nigt and day. Instead of going down hill between every set of treatments (currently 3 days in a row) I feel stronger than ever (since dx with CIDP). I actually have mowed my yard, shoveled 5 ton of sand to put up a pool and still managed to get my house cleaned (that is what I call it 😉 ). I have not slipped back down hill yet and go next week for my second cycle of 3 week apart treatments. I am loving this routine and see my neuro on the Thursday after finishing my 3 day IVIG and hope he will agree to keep me on this schedule. Why mess with something that is working. I still get fatigued and have to do things slower than ususal and take several breaks but life is much better now that I think I’ve found te treatment that works for me.
I hate to hear about anyone having this especially someone so young. I could not imagine my 2 1/2 daughter having this. It effects her enough as is, having to hear her mommy say, ” not now, mommy isn’t up to doing that right now.”. I pray that you and his drs find the treatment plan that worksfor him. My best advise is don’t let the drs tell you what should be working. You are the ones dealing with it everyday. I dealt with that for nearly a year and finally found the strength to stand up for myself (and by myself 😀 ) to say I need to try this. Sounds to me like his treatments need to be closer together to keep him from slipping back down hill between them, like I was.
Hope this helps and I will keep you all in my prayers. God bless and best of luck.
AnonymousJune 14, 2006 at 12:06 pm
I think they need to decrease the number of days between infusions. When I started they had me get it every 3weeks (the half-life of IVIG is 21 days or so), then eventually we got to 4 weeks between infusions. Anything longer then 4 weeks and I can feel myself slipping. I would ask if they could try 21 days for a few treatments and see if that helps get rid of the issues towards the end of the cycle. Hope that helps.
AnonymousJune 14, 2006 at 12:47 pm
My daughter Emily is 4 years old and has CIDP. Her neurologist has her on IVIG every other day right now. Then she’s being moved down to twice a week for 8 weeks. Emily started out getting 5 consecutive IVIG treatments in the hospital then we went down to 3 times a week, then 2 times a week then once a week and she started to have a relapse. For Emily we know it’s relapsing when her right eye becomes paralyzed.
Our neuro is treating it this way because he is trying to get it to go into remission. It sounds like your son’s neuro is just trying to put him on a maintenance plan and that the treatments need to be closer together.
Are you going through a major medical center or just a regular neurologist? Our home care nurse suggests that we go through a major medical center & we’re currently trying to get an appointment with a specialist out of the local Children’s hospital.
Let me know if I can do anything for you. I know how you feel when it’s your child going through this.
Oh and my daughter see almost immediate improvement. She started to have pain when her eye paralyzed again & she got an IVIG treatment that day, by the next day the pain was gone.
AnonymousJune 14, 2006 at 10:19 pm
Thank you for all of your replys.
I wrote the dr. today and he emailed me back and asked tons of questions. I have emailed him with the reply.
His dr. is at a major institution. If it was not for him, Dell would have died. He was so weak when we first met the dr. Dell had been misdiagnosed at a VERY MAJOR institution in Birmingham, AL. We were airvacked to this dr. one night when Dell stopped breathing. Just by talking to me for 45 mins. the dr. knew they had misdiagnosed him.
I will speak with him about getting it every 3 weeks. Maybe that could get him walking. That would be wonderful.
Another question. Are you having problems getting your ivig?
AnonymousJune 15, 2006 at 8:10 am
I live in KY and have not really had much trouble getting my IVIG. I was first on home health and had problems with the pharmacy getting it to me but they had it. Since I started going to the outpatient center at the hospital, they have always had it for me bu it isn’t the brand I’m used to. I think is doing ok for me but not sure if it is the brand or the 3 week intervals that is doing the most good. Hope tis helps. IF your Dr. has emailed you back so quickly and interested in Dell’s health to be asking a ton of questions, it sounds like he should be willing to try the 3 weeks to get him well. Seems like you have found a winner in drs. congrats.
[QUOTE=Dells mom]Thank you for all of your replys.
Another question. Are you having problems getting your ivig?
AnonymousJune 15, 2006 at 9:19 am
Thanks for your email.
I hate that I can’t tell if his neck is getting worse. It’s not getting any better but it’s not a black and white kind of thing. You can tell when a rash is getting worse but not a 2 year old’s neck.
I haven’t heard from the dr. but I did send him all the replys to my question. He’s from Belgium and he treats Dell like he’s his favorite patient. He takes movies of him and photos.
He sent his biopsy to Harvard in December because he said no one would ever believe a 19 month old was positive for CIDP. Based on his weight and heigth chart, we think he was 5 months old when it hit him.
Thanks again, Lori
AnonymousJune 15, 2006 at 10:11 am
I am 59 so I can’t compare my situation with yours. I’ve had the IVIG three times. The first one worked for 3 weeks. The others didn’t work at all. My doctor says I should have it once a month for the rest of mt life. If it doesn’t I’m not spending $12,000 for something that doesn’t work for me. Everything I have read says younger people have better reactions.
AnonymousJune 15, 2006 at 10:33 am
I was just wondering how many grams your son is getting per IVIG treatment. And also what his treatment schedule has been like. You said that he’s gotten 8 treatments, have they all been 30 days apart?
I think most people get 5 consecutive days of treatment (or 2 days in a 5 day dose) then they go from there. I’ve talked with other parents whose children have had 10 consecutive days of treatment also.
It just concerns me that your son isn’t walking yet. I think you should push the dr to order more IVIG treatments closer together. My daughter’s eye becomes paralyzed if she goes more than twice a week without an infusion. Maybe if your son had an induction (that’s when you get tons of meds, almost to the point of toxicity. It’s not as scary as it sounds.) then he is weaned down that would help him. That’s what we did with my daughter & it really did work wonders. Her right eye had been paralyzed for 5 months and when we did the induction it was near perfect again after only 7 treatments.
We haven’t really had any problems getting Emi’s IVIG. We did in the hospital, but the neuro got that resolved by having another hospital share 2 doses. Since then we’ve had homecare & we don’t have a problem at all. As a matter of fact, Emily will be getting 16 treatments over the next 8 weeks & the homecare company is already working on making sure that we get them all.
Also how often do you see the dr? And why are you emailing with him instead of talking with him on the phone? Does he live in Belgium? Does your son get physical therapy & has he had an EMG?
Sorry for all of the questions but I feel like I need to help you help your son. I’ve done TONS of research on CIDP and I’ve talked with alot of different people who have it. I haven’t found many other parents that have young children with it & I know it can be very difficult to be a parent of a child with this disease. What concerns me is that he doesn’t seem to be recovering quickly. I’ve read that children do MUCH better with recovering from CIDP than adults do, they get better quicker & suffer less nerve & muscle damage. Children do tend to have a more relapsing & remitting course but it can be sent into remission with aggressive treatments.
That’s what is puzzling me…if your son is so debilitated by CIDP why isn’t the dr treating it more aggressively? My daughter didn’t have breathing difficulties (looking back we realize that she was having trouble swallowing though) and we are VERY aggressive with her treatments.
There is no clear cut treatment for CIDP but I really do believe that if your son had more frequent IVIG infusions that you would see signifigant improvements with him.
Have you checked out [url]http://www.cidpusa.org[/url] ? It’s a great website with lots of info.
AnonymousJune 15, 2006 at 8:40 pm
Thank you for your latest email and questions. I already typed you a long reply and for some reason, it didn’t take. I’ll try again.
I called the dr. again today and he said come right then. We are 1 hour away. We have no pediatric neurologist on the Mississippi Gulf Coast. Dell was misdiagnosed in Birmingham at Children’s and we also saw another quack in New Orleans, twice. My gut feeling is this guy is a great dr.
The reason I email him is it’s easier than talking to the operator. He’s in an office with lots of doctors. He’s also a computer man and must check his email often. He told me today he likes me to email him. He usually gets back within 6-8 hours.
These are the questions you asked:
-Dell has always gotten each treatment around 30 days apart
-We see the dr. each month, when he’s receiving the treatment. He usually spends around 30 mins with us, writing orders for bloodwork, etc.
-Dell receives speech, pt and swimming
-Dell weighs 21 lbs and last week received 200 ml
I am also wondering about the different brands on the market. He’s had Baxter and Carimune. We might have had another brand before we started keeping up with it.
Thanks for concern,
AnonymousJune 15, 2006 at 9:00 pm
There is an IVIG shortage supposedly right now, we are considered priority patients. For me the brand Gammaguard works the best, I have tried several others including the ones you mentioned and they either didn’t work as well or I had a reaction. My Neuro said it’s good to find a brand that works well for us as the patient and stick with it, with Gammaguard I can get it at full rate, no headaches, no reactions, I just premed with Benadryl and Tylenol. The different companies prepare the IVIG differently so that is the main difference between them. I hope that helps.
AnonymousJune 15, 2006 at 10:25 pm
Sorry if I’m being a pain the butt with my questions. I’m just very shocked at the treatment plan for your son when my daughter’s plan is so much more aggressive. I wish there was some sort of treatment plan guideline available but with this disease it’s pretty much do what works for each individual.
Well, I think it’s pretty cool that you can email with your dr instead of having to sit on hold & be pushed around the phone system. My daughter’s neuro has voice mail for his patients to leave messages on, it usually takes him 2-4 days to get back with you. I’d love having to only wait 6 hours.
Do you have another Children’s Hospital near you? Or a large university hospital? I would think that they would have pediatric neurologists on staff. Emi’s homecare nurse has a few pediatric patients with rare diseases that travel from MI to IL to see specialists because there just aren’t any dr’s here that know how to treat them. You may end up traveling very far to find someone that knows what they are doing.
Don’t give up this fight! I know that it does sometimes get discouraging but eventually you will find the right path. (I remind myself of this everyday) Always go with your gut, if you think this dr is great then he probably is. But remember that he is a dr and they don’t always know everything. I learned that the hard way and since then I’ve pledged to make myself more knowledgable about CIDP then most dr’s are.
AnonymousJune 16, 2006 at 7:47 am
I don’t mind questions at all, that’s how we all learn. I’m usually good at asking questions, my husband says I’m too nosey.
The dr. that we see is on staff at USA Children’s and Women’s Hosp. in Mobile, AL. Although Mobile is not the biggest city, the hospital is a nice size. I think it’s 5 floors.
Also, the dr. is treating a 12 year old girl in my area. How strange could this be–she takes swimming 1/2 hour before my son does and our pt introduced us. With CIDP being so rare, can you believe that? She was diagnosed around the same time as Dell. She had been going to a quacky dr. in our area, not a children’s neurologist.
I do want to gather some more information about a more aggressive therphy and present to the dr.
Thanks for everything. Lori
AnonymousJune 17, 2006 at 9:46 pm
My 2 cents worth !
The I V I G that I get is Baxter, and it works well for me. As was suggested , different brands compound differently, and all of us respond differently.
For Karen, I V I G works on us “older” ones well too, I was 10 years older than you when hit with this nasty disease. The IV I G took me from the wheel chair to walking and driving. Just have low energy, and need my treatment every 4 weeks.
You dear Mom’s dealing with young children with this disease are in my prayers. You can be a great support for one another, along with the rest of us. God will not give you more than you can handle.
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