Gracie-4 years old

Hi Gracie’s Mom – I’m so sorry to hear about your daughter’s diagnosis, but take heart, things will get better. My son had GBS in 2010 at 19-months-old, and he is now a very active 3-year-old who loves to dance. It took a lot of hard work, and most of all patience, but he returned to his little monkey self & so will she. They have youth on their side & they can be remarkably determined. Was she treated with IVIG? It is great that you were able to start her OT & PT already (we had a lot of red tape to go thru before my guy was able to start his). Any questions please post, it’s good that you are reaching out for support as well – hang in there!!!! All the best, Dee & ds

She should recover, but it will definitely take time and hard work. In the meantime, I suggest you learn as much as you can about the disease, so you can reassure her that she will get through it and recover. I suggest you also talk to the representative of the Foundation, which sponsors this website, to arrange for visits from someone who has suffered from GBS and recovered from it.

I found the book “Guillain-Barré Syndrome (from diagnosis to recovery)” by Parry and Steinberg to be extremely helpful when I was first learning about my condition. My daughter found it and read it first, then passed it on to me.

My son was was 10 when he was dx with gbs. After 6 months the dx was changed to cidp. Gbs/cidp is a very tricky dx. Each person is different regarding recovery and response to ivig or other protocols. For instance, we had an immediate response to ivig. After the four day loading dose we went from not being able to walk, breathe, urinate, picu ward to running down the halls. He could not even hold a pencil or feed himself, let alone walk. It started with the tiredness, heavy legs, tripping, not being able to hold a cup, not able to dress himself to not being able to walk. It took about 4-7 weeks to get this way. Unfortunately we fell right at the edge of the gbs dx and that is how it was treated. After we were better from the load dose of ivig, we went about 4 months and started feeling tired and fatigued again. But PT, school, basketball, regular kid life and recovering for gbs was used as an explanation. By six months we were worse and had another ncv/emg which confirmed new demylienation which changed the dx to cidp. We now get ivig at a maint dose every 2 weeks over one day and lead a normal life regarding physical ability. Can keep up with and excel peers, runs 4 miles, swims, carries 40lbs of gear while running around in the forest playing airsoft. I am not going to lie and say things are perfect, we do suffer greatly from 2 types of migraines since this started. The first one is aseptic meningitis due to the ivig infussion and the second is from I think, the inflamation on his spine. As well, food allergies also contribute to these migrains. Another obstacle is cold/flu season. When we get sick it causes his cidp to flare. He gets tired and has pain in the areas that were most afflicted.
The best advice I can give to you is to keep a diary with symptoms and changes. These next months will be confusing in trying to decipher if it is fatigue from Pt and healing or new demylienations indicating cidp. The quickest way to confirm is to repeat a ncv/emg and compare it with the original to see if everything is the same. If you do get another ncv/emg, try to have the same neuro do it and make sure the exact measurements, nerves and enviroment are the same. This will insure an exact comparison. If you would like to talk, maybe you could leave your email and we could exchange phone numbers. Good luck and prayers to you. Courage and stregnth will get you through this and both of you will be stronger because of it!
Dawn

Hi – in regards to my ds not being able to communicate his pain, that was one of the very frustrating things we had to deal with. And when we asked the docs we would get mixed responses as to how much discomfort he was going thru. If you look at my post on this board from that time (titled ’19 mo w/gbs’) you’ll see I got a number of responses from those with older children who were able to put some words to what it was they were feeling.
We would give him acetominophin (spelling? basically children’s Tylenol) when he seemed very uncomfortable, usually to help him sleep or after PT. Your doc should be able to advise if this is ok for your dd. Also, we tried not to overdo it & not push him too hard, too fast – rest was really important. You will notice little changes that indicate she is getting her strength back (& those little things mean a lot!) – Dee

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

I’m very happy to hear she got a correct diagnosis & she is improving.

Are you near one of the GBS/CIDP Centers of Excellence? Or Mayo?

I have a few concerns…

IVIG is the 1st line treatment for CIDP. Usually a person with CIDP is given a 5 day loading dose of IVIG of 2 grams per kg. If your daughter only received 2 days then she did not get the correct dosage. (My daughter was also given only 2 days of IVIG when she was first dx’d. She got worse & ended having to take massive amounts of IVIG to get better)

Also, prednisone is a drug that should ONLY be used (on children especially) when IVIG alone does not work. Her sole source of treatment should NOT be prednisone. That is the old school way of treating CIDP – new research shows IVIG is tolerated by children MUCH better than prednisone.

Research Dr. Dyck from Mayo in Minnesota. His treatment protocol seems to be the most up to date & I agree 100% with it.

I wish we still had private messages so I could send you my phone number. It helps so much to be able to speak with other parents who have gone through this. If you leave me your email address I will get in touch with you.

Kelly

Hi Kelly,
I noticed you said 2gms per kg. Is that per infusion or for the whole loading dose?
My two loading doses were done at .4gms per kg for a total of 40gms (I was 100kg). My fortnightly maintenance doses are also .4gms per kg.
I am curious as to the difference.
Regards Tim

Tim – For most people they get 2 grams per kg over the course of the whole infusion. My daughter received 4 grams per kg per infusion when she was 1st dx’d – she is certainly not the norm.

I’m really terrible at remembering how to figure out how much IVIG you should get. I think the formula would be:
100X2.2=220
220/5=44

So your daily dosage (if getting a 5 day loading dose) should be 44 grams. Most dr’s would probably round that up to 45 grams. Your total loading dose for a 5 day period would be 220.

I’m going to then assume if you are on a maintenance dose it would be half of the loading dose (since a maintenance dose is generally 1 gram per kg), so you would then receive 110 grams. You would probably receive that 110 grams over the course of a month by breaking up the treatments depending how you respond.

If you receive IVIG every 2 weeks then you would get 55 grams at every infusion.

However, if you are doing well on your current treatment plan then that is FANTASTIC because it means you are getting less than a maintenance dose!

I hope that makes sense. Like I said, I’m not very good at the math.

Kelly

Hi Kelly,
I think we are basically on the same wave length. If I take your original figure of 2gms/kg then at 100kg I should receive 200gms.
200 divided by 5 days is 40gms per day (per infusion), which is what I received.
Since I have lost some weight, then I am actually receiving a higher dose per kg.
However my progress is extremely slow and I have been on Ivig for two years now. I received a second loading dose 7 months ago. For every 100 steps forward I seem to take 99 back, but I guess that means that I am still coming out in front. I also spent 12 months on Methotrexate and am now on Imuran.
Regards Tim

Groesch34-I’m not sure if you’re still posting on the forum, but I’d be interested in connecting with you.  My 12-year old son has been diagnosed with CIDP and is also receiving the weekend dosing of prednisone.  Would you be willing to discuss with me?  Our institution (Washington University School of Medicine in St. Louis) seems to lean towards prednisone as a first-line treatment instead of IVIG and they also feel that this weekend dosing leads to less side effects.