Emilys_mom
Your Replies
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May 16, 2012 at 10:23 pm
My daughter Emily was dx’d with GBS & then later CIDP when she was 4 years old. She is now 10 & roller skates competitively. So yes, it does get better – it takes the right treatment plan & lots of time.
If you would like you can give me your email address & we can communicate. If you would like I would be willing to speak with you over the phone as well.
How many IVIG treatments has your daughter had?
Has she had spinal & brain MRI’s with & without contrast?
Has she had an EMG?
Was she sick or receive vaccinations before her symptoms started?
Kelly
May 13, 2012 at 6:11 pmI just re-read my post. Apparently I should not type before I have my coffee. It’s the schwann cell that remyelinates not squamous cell. Sorry about that. LOL
Kelly
May 13, 2012 at 1:40 pmThere are 2 scenarios that I can think of.
1) The 1st EMG/NCV was botched either by error or environmental factors (I believe being in a cold room can affect the results).
2) You had very slight demyelination & your treatment regimine allowed the squamous cells to do their job & repair your myelin. It may have been such slight demyelination that it won’t show up on an EMG now.
My daughter had very slight demyelination on her 1st EMG. It was MUCH better on the 2nd & by the time she had the 3rd it was almost gone. She hasn’t had one in years but I would be willing to bet she no longer has any.
Kelly
May 3, 2012 at 6:48 pmI have heard of people getting 50+ grams of IVIG in one sitting but it really depends on the person. If you are someone who does not respond well to IVIG or are sensitive to a higher infusion rate, a large dose at one time may not be for you.
I think it also depends on your schedule. You would need to find out how long the larger dose would take & then decide if doing that dose every 3 weeks fits into your schedule than the smaller dose every 2 weeks.
Of course the main thing is are you doing well on your current dose? You need to decide if it is worth it to you to change it.
For my daughter frequency was more important – you may be one of those people too. There are a lot of variables to consider here.
Kelly
April 27, 2012 at 9:18 pmIf you think about it – it makes perfect sense that there would be back pain involved. Emily had it too, in the beginning, when her spinal MRI’s showed inflammation from the lower lumbar down. She no longer has spinal inflammation & she no longer has lower back pain.
Our neuro said the back pain was from the inflammation &, at the time, he was willing to give her neurontin for the pain. I declined & luckily Motrin was enough for her.
Kelly
April 8, 2012 at 9:05 pmHey Lori – Emily is doing really well! Thank you for asking. She’s skating in a competition with her precision team next weekend & a solo competition on Mother’s Day. It’s going to be the BEST Mother’s Day present watching her skate. The Easter Bunny brought her a new bike today & she is beyond thrilled. She’s been riding her bike every day for the last few weeks (loving spring this year in MI!) & it’s also helping with her skating jumps. Her hips were really affected by her CIDP & the bike riding has been great at loosening up those muscles again. Now that she has a bike that is the right size I’m sure it will help even more!
Have you tried also adding iron rich foods to your diet? Emily isn’t a meat eater so she eats lots of spinach, potatoes, etc. Here is a list of iron rich foods that I find helpful:
http://www.webmd.com/diet/iron-rich-foods
How are your potassium levels? Emily has naturally low potassium & so she has to eats lots of foods to help with that too.
Happy Easter!
KellyApril 8, 2012 at 9:33 amGH – I’m not trying to argue with you. I’m pointing out what has been said to me via email & on the phone by other members of this forum. It seems I’m the only one who isn’t afraid to let you know that you do come off as insensitive. It hasn’t just been info you’ve posted relating to vaccines either. I simply wanted to make you aware of it. The problem, as always, with this type of communication is that sometimes the intent is lost while a person is reading your words. I have been accused of being insensitive as well. I had to really consider what I was typing & how other people would interpret it.
As far as the vaccine issue goes – you will believe what you want & others will be believe what they want. Just please try to be more aware of other people’s feelings on the subject.
That’s all I’m saying.
Happy Easter!
KellyApril 8, 2012 at 1:12 amGH – I’m just wondering if you realize how upsetting it is to people, who believe they got GBS from a vaccine, when you tell them they are wrong?
No one can tell me that my 4 year old little girl would have gotten CIDP. 4 year olds aren’t supposed to get CIDP! I know my daughter’s health history & I can assure you, the vaccines played a roll in her disease. I’m sure other people feel the same way about their own illnesses. I’m not saying the vaccines were the only cause but I know they played a major role.
I’m just saying this so maybe you can figure out a way to post your beliefs about vaccines but be aware of people’s feelings.
There is info out there coming from both sides of the issue. It’s just the way you search for it & what you choose to read & take away from it.
The American Medical Association believes there is a link between vaccines & GBS:
http://jama.ama-assn.org/content/292/20/2478.fullKelly
April 7, 2012 at 11:43 pmMy daughter had low iron too when she 1st started getting IVIG. I did some research & found out it was from the IVIG. I decided to give her a multi-vitamin with iron every day. Within 2 months her iron was within normal range & has been ever since.
Kelly
April 6, 2012 at 8:20 pmWhen my mother went to get her flu shot she had to sign a disclaimer that read something to the effect of “I have never had GBS”.
Now, if the government requires a signed waiver saying you’ve never had GBS before getting a vaccine – what makes anyone think the two aren’t related? Why would you have to sign a waiver saying you’ve never had GBS if the government didn’t think you could get GBS from a vaccine? And also, why would you have to sign that waiver if they didn’t think your GBS would either come back or get worse from the vaccine?
The government doesn’t always share ALL the info.
I think there are plenty of people who (used) to post here that did get GBS or CIDP after being vaccinated. My daughter was one of them. She was in the hospital & unable to even feed herself within weeks of a her 1st and only flu shot. Months before she got her 5 year vaccines & within weeks she was complaining of pain in her feet. Coincidence? Maybe. But I’m not ever going to believe a vaccine can’t make a person sick…there is just too much evidence to suggest they can & do.
For the record, I’m not a conspiracy theorist. I do not think the government has secret facilities where they study aliens, I do not believe in zombie day & I do not believe the world is going to end later this year.
GH – Just wondering – how many hours a week would you say you spend researching vaccine reactions?
Kelly
April 2, 2012 at 8:49 pmNot sure where you are in California but there is a Mayo clinic in Arizona. Dr. Dyck at the Mayo in Minnesota has seen many people who post on this forum & they all report that he is great. Would it be possible to have your son’s current dr speak with Dr. Dyck? That may help your son out until you can find another dr.
Kelly
April 2, 2012 at 8:45 pmHi Norb – I’m sorry to hear your CIDP is progressing.
I would think the best bet would be to call your airline & ask them. Then ask if they can either email you their policy or snail mail it. That way you can have a copy of it with you if you have any problems.
I have to say the weather in MI (where I live, at least) has been FANTASTIC! Emily & I are going for a bike ride wearing T-shirts – which is practically unheard of here in early April. I hope it stays like this for your visit.
Kelly
April 1, 2012 at 2:05 pmDiabetes is now thought to be an autoimmune disease & not a metabolic one. Here is an article explaining:
http://www.medicalnewstoday.com/articles/222766.php
Kelly
March 29, 2012 at 8:05 pmI don’t think IVIG could have anything to do with it. I highly encourage you to discuss this with your dr.
I can’t find any literature on IVIG causing your symptoms. I don’t remember every reading anything about it being a possible side effect either.
Kelly
March 29, 2012 at 5:51 pmI’m wondering if the hearing loss is really from the IVIG & not the CIDP itself. If you Google “CIDP & hearing loss” you will get links to different case studies of people who have lost their hearing due to CIDP. It’s called auditory dysfunction.
Have you talked to your dr about this?
Kelly
