I still have ques. re gbs or cidp 10yro boy

Dawn I will try to give you some information I found
A diagnosis of CIDP requires the following:

* Weakness of at least two limbs;
* Complete or partial loss of tendon reflexes;
* Progression over eight weeks or relapses;
* Evidence of myelin damage in the peripheral nerves from nerve conduction studies.
CIDP is a chronic condition and is only distinguished from GBS by virtue of its pattern of progression. In GBS the low point is reached within four weeks whereas in CIDP the initial progressive phase lasts longer, usually much longer.

GBS The worst degree of weakness is usually reached within four weeks and always within six weeks. Some patients deteriorate very rapidly to a state of severe paralysis over the course of a few days but this is uncommon.

Sue
Here is a good place to get more information
[url]http://www.gbs.org.uk/aboutgbs.html[/url]

Dawn,

That was a good write-up of the events. When you write it up it makes it easier for someone to read a couple times and think and review and ponder the facts. I myself have always had problems writing the facts because it is hard emotionally, you thought me that that is the best way as you can review what you have written several times and make sure that you have not missed anything and edit it, When we are telling the story-history there is so much information that we have it is easy to miss a fact that might be important.

I hope someone can help shed some light on Kevin’s situation. I read this a couple of times and the thing that sticks out to me is that initially, on Aug. 28th, Kev’s EMG was normal and it took till, (? what was the date of the 2nd EMG that showed the blocks and delays) _____ for the EMG to reflect the weakness that you could see. Could that be the case again, that it will take the EMG time to reflect his current weakness?

Cindy

First off, did you email me a few weeks ago? I didn’t recognize the name so I didn’t respond. We’ve been getting alot of spammers on this site recently & I wasn’t sure if the email was from a real person or not. Sorry.

I think I read somewhere that in order to get a dx of CIDP with an EMG/NCV it should register at 28 or below in any extremity. My daughter’s arms are worse than her legs.

If it were my child I would probably ask for another loading dose (5 days) of IVIG to see if there is improvement. I say this because IVIG has been a lifesaver for Emily. Being able to walk on her heels is a HUGE indicator to us that she is doing well. When she starts to lose that we know that she’s relapsing.

I know just how scaring this is for you. You have to remember that kids fare alot better than adults do with this disease & it is possible for it to get into remission one day. You just need to find a maintenance schedule that works for him.

I hope that helps.
Kelly

CIDP

In CIDP the weakness develops slowly and may take 6-to 12 months or even longer to peak. Many can have recurring relapses with CIDP.

Sue did a great job in telling you alot of the facts about CIDP.

In most cases CIDP does come on very slowly, where GBS comes on strong and fast, but some patients such as my husband, his came on fast, thus his diagnosis of GBS and he received IVIG, In time Frank started getting worse with his symptoms over a 6 month period and his Neuro sent him to a Neuro-Muscular Dr who specialized in GBS and CIDP. After hours of testing, Frank was given a new diagnosis of CIDP. He had axonal damage to his body. He also had recurring relapses over the years and he never recovered from them.

In the first round of IVIG he improved greatly, then he’d relapse. Get IVIG again felt good then relapse, after awhile the IVIG didn’t help him anymore.

Everyone’s body acts differently, I’m not saying there is no hope because there is. Some people will get better and be able to function very well with treatments.

If Kevin is having a relapse it’s hard for us to tell you yes it’s a relapse, only a Dr can do that. He also might just be experiencing residuals, as extreme tiredness and weakness are just a few of the residuals of both GBS/CIDP.

Take care.

Just a side note: With kids it is hard to keep them tied down and not over do activities. They feel good they play hard…..they don’t feel good they push to keep up with friends. Watch the exercise before an relapse to see if there is a connection. Remember if there is any damage to the myelin it is leaking energy which will cause fatigue so 9 hours of sleep might not be enough sleep. The brain never seems to get tired and goes into what I call hyper thoughts that the body is never going to be able to meet those expectations. Kids fill their thoughts with what they want to do next….adults fill those expectations with things they have to get done! Responsibilities make it hard to listen to your body. Both ages have to learn to get on a routine that works for them and listen to your body! Over do exercise or activity levels will surely set you back a few days! Would be interesting to keep a Journal on Kevin to see if those times he declines are do to more activity days before. Just a thought! Hang in there it takes time for the body to heal. He is still in the healing process and no where close to knowing what residuals of this he will always have. Tests will show increase or decrease over a period of time. Listening to your body will be the best indication learned from listening to your body. That will change daily, weekley and monthly. He will definately learn to be patient! Take care of yourself Dawn, this is also hard on our caregivers!

Dawn,

If anyone had a problem of some sort, believe me, they would want Dawn on their side! Just from speaking to you once Dawn, I know you wont rest until you find an answer, I just wish there was something more concrete we could give you in the way of answers. I could hear the frustration and hurt in voice and my heart broke for you. We all feel helpless with regards to our illness, and wish so that we knew more about it, also, I think many of us wish that doctors would be more willing to work with us and try to help us, instead many of us struggle alone for years and years, finding help, comfort and answers through this forum.
My daughter was diagnosed with Hirschprung Disease (sp) at the age of 20 months, then came a 6 hour op, removal of most of her intestine and a colostomy bag and after that another 6 hour op. I know what it is like for all you mothers out there who are dealing with these illenses, I know what it is like to watch your child suffer and feel that there is nothing you can do. For almost 2 years, the doctors didnt believe what I told them, my heart goes out to you all, I am praying for you and your families.

Website you may want to check — “What’s in a Name? Important Differences between GBS, CIDP and Related disorders”

[url]http://www.gbs-cidp.org/newsletters/printer%20versions/what%20is%20in%20a%20name.htm[/url]