Dad looking for help

Hello,
Welcome to your new family where we feel what you feel. I have CIDP, different then what your daughter is battling so wait for others to respond. IF YOU TELL US WHERE YOU AND YOUR DAUGHTER ARE, WE WILL TRY TO FIND A LIAISON OR MEMBER IN YOUR AREA. You’re not alone, we are here, NEVER NEVER NEVER NEVER GIVE UP.

hi larae & welcome,

there are no alternate procedures. it is ivig or pp. both may stop the disorder. neither is a cure. steroids are counterproductive to gbs. she should not be taking them. sounds like she is on the road to recovery. ask her what she needs by whatever communication works. gbs stands for Get Better Slowly. make sure she gets plenty of rest/sleep. make sure pt & ot do not work her too hard. it will set her back as a minimum. one death that i know of way caused by it. she will recover a lot. give her time. rest & time is what heals nerves. take care. be well.

gene gbs 8-99
in numbers there is strength

Hello and so sorry to hear about your daughter. Like Liz said where exactly are you located? A local liason might be able to offer you a great deal of support. We here on the forums are happy to help also. That is great news to hear that she is off the vent and can open her eyes. Stay strong and ask lots of questions if you need to. Take care, you are all in my prayers.

Jerimy

larae,

she knows how bad she is. she knows it better than you. you are hiding nothing from her unless you are telling her she’ll recover in few months. from one who knows, as do all of us here, it’s nice to know there is recovery, but it takes time. if she isn’t told it will take time, she can become quite frustrated wondering what’s wrong when, in fact, nothing is wrong. if she isn’t told to make sure she does not over do it & pt or ot pushes her too hard, she won’t know to tell them to stop. your call naturally. take care. be well.

gene gbs 8-99
in numbers there is strength

Yeah I agree, it is best that she knows she will get better but it will be alot of work. Painting too rosie of a picture might really frustrate and upset her in recovery.

I am going to try and find out if you have a liason in your area. I am also going to private message you my phone number, I am the liason here in Southeast Michigan but I would happy to help any way that I can if you need me.

Jerimy

I was just curious as to how doctors who admit that they have not treated much GBS can Dx someone with the ASMAN form of the illness. Also, how can they tell that she has axonal damage so early on? I agree that this illness is not one that people recover quickly from, but they seem to be all doom & gloom for one is so young & healthy to begin with. These two things are very much in her favor as to what her recovery will be like.

Hi there. I had never heard of ASMAN before so did a quick search. I am not sure how they diagnose this variant. I had Miller Fisher which is descending (instead of ascending) and involves the cranial nerves, starts with double vision, facial palsy etc. I too was on a ventilator and unable to move apart from my tongue! It was a while before I could open my eyes or move my head, but once I could I noticed there was something new just about every day. No matter how small the movement it felt like such a big achievement. So if your daughter has opened her eyes and can move her head it sounds like she is starting to regain some movement. It can be really terrifying at times especially as your mind still functions normally. I would encourage you to tell your daughter the full situation but focus on the positives. Most people do recover and lead normal lives. Tell her there are many people on this site who have been through what she has and will be here for her when she is ready.
Unfortunately there is not much you can do to speed recovery – encourage her with her therapy but bear in mind that recovery varies so much from one person to the next.

The symtoms sound like MF a variant of GBS – which I had in 3/06 – and started just like your daughters. Make sure that they do not push her on PT when she can start walking etc – they did that to me and really set me back – rest is the best thing – very boring but will help.
Sally

larae,

many of us take neurontin [gabapentin], a non-narcotic, for peripheral neurological pain. neurontin is specific, it can work even when ordinary pain killers do not, even the opiates like methadone. great success w many. v safe. start at 300 mg 3X/day [900 total] & increase by 300 every other day till pain stops. taking it 6X/day instead of 3X/day gets more bang for the buck. 3600 is theoretical max/day that your body can absorb. 5600 is practical absorption max/day. the only reason for the slo build up is it may make you sleepy till your body gets used to it. take care. be well.

gene gbs 8-99
in numbers there is strength

Hi Larae,

I was ten years old when I was stricken with GBS (and a foster child, too), so I can relate (as others can) on what her fears and anxieties might be. In 1971 little was known about GBS (my first diagnosis was polio) and today there is this wonder drug IVIG and other meds, so your daughter stands a good chance for a full recovery even if it’s a little long and strenuous. My residual was that I have drop foot and have to live with wearing AFO’s. But, when I put them one, few even notice or know, so I’m “Superman” at that point, LOL. I mention this to let you know that although we all hope for a full recovery, a bit of reality is that there might (MIGHT) be some residual effects left behind from the illness and both your daughter and the family should just be prepared for that. Others can talk about their residual(s) effects and I’ll just leave it at that for the time being.

My thoughts and prayers will be with you and your daughter and the family during this period and just know that she’s loved here unconditionally and if we don’t have the answers immediately, there are so many of us that almost [I]too[/I] many of us will be working really hard to find an answer for you, LOL.

Take the PT/OT carefully but diligently as it will help strengthen her, too.

Blessings.

From a Liason-in-training,

Alex

LeRae,

GBS often has characteristics of myelin damage, as well as some axonal damage. Does your daughter have myelin damage as well?

You may have noticed that many of us on this forum are skeptical about diagnoses, especially by doctors inexperienced with GBS. AMAN is a rare subset of a rare disorder, so this makes me wonder how sure they are about it.

Hope recovery is going well.

Suzanne

Welcome and sorry to hear about your daughter. It is great that she is off the ventilator. Take each day as it comes and cherish her progress however small it is. Ask as many questions as you like as there are many knowledgeable people on these forums. We have all been through what your daughter has and fully understand how she feels.

Send Lerae our best wishes.

Kind Regards,
Debbie