New User to the site! Has anyone had problem speaking with MF?

hi,
Sorry for all that your daughter is going through. I have an 11 y/o boy with cidp. While we did have the near paraysis, we do not have the MF varient. Someone on the site will help you soon. One of my friends on the site has a 6 y/o with MF cidp, I will call her and ask her to respond. Has your daighter received ivig? How long did it take for the symptoms to come on? I have never heard of the barbituate issue, but regarding the liver, gbs/cidp does have an affect on the autonomic system. We had issues with the bladder, lungs and intestines, so I would imagine it would be possible to have an issue with the liver. How was her blood work? Billirubin ok? Is she jaundice? jaundice would be an indicator of the liver not functioning. I have no experience with the liver being an issue, so I can only offer what quickly comes to mind. I do not recall reading anything about the liver being connected. Someone with more knowledge will respond.
You mentioned a drug for her stomach, could she be having a side affect from it? (regarding your concearn of the liver, not the mf?)
Good luck,
Dawn Kevies mom.

If you would like to talk, pm me and I can give you my #

Sorry Cassie you are going through this. I found out a bit about Donnatal and when I find more I will post it.

(Donnatal is an anticholinergic and barbiturate combination. It works by decreasing the motion of the muscles in the stomach and intestine and providing mild sedation. Donnatal should be used with extreme caution in CHILDREN; safety and effectiveness in children have not been confirmed.) (Since barbiturates are metabolized in the liver, they should be used with caution and initial doses should be small in patients with hepatic dysfunction.)

Could it be that she had a reaction to the Donnatal this last time and it gave her MF? Is she on any other drugs that together with Donnatal would cause her to get MF?

I hope she gets better as soon as possible

Take Care

Sue

PS: was she taking the elixir? and is it a new bottle? I say that because I wonder what the pharmacy gives us now is exactly what we ordered

Has your daughter been confirmed with a gbs/cidp diagnosis? Could the neurological symptoms be from poisoning from the drug she is on? has it been approved for children? We were on an over the counter medication that caused neuro muscular issues. As soon as we stopped, things stabilized after about 2 weeks. Is it possible that there is now an issue w/ the liver via the meds and now the liver is not filtering out the drug, therefore causing a build up even though she has not taken it for a while?

What tests did they do to confirm a gbs/cidp dx?

Keep us posted.
Dawn Kevies mom

My daughter is 6, dx’d with MF CIDP at 4.

The high barbiturate levels are concerning. It sounds like it could be from her meds. I would be calling whoever prescribed them to her & asking them what the heck they were thinking! Are the dr’s giving you any indication on how her liver is doing at this point?

If she was dx’d with MF there are a few things that you should expect. First off, most people with MF go on to live perfectly normal lives. Just remember that! She’s a child & she certainly has that on her side.

She should receive high dose IVIG ASAP, if she hasn’t already been started on it. I met a lady whose child had MF many years ago. That child was close to being put on a respirator. They gave her 10 consecutive days of high dose IVIG & she’s perfectly fine now – except for absent reflexes.

Will your life change? Yes. It’s already changed. You’ll never look at sickness, drugs, immunizations, or other kids with problems the same ever again. Is that a bad thing? I don’t really think so.

Will your daughter’s life change? Probably not. She’s still young & that is on her side. If she does have MF & the drugs didn’t cause too much damage (which is what I would be more concerned about at this point) then I’m certain she’ll make a near perfect recovery.

It’s important that you don’t stress about her not being able to play the piano or sing right now. Don’t let her know that you are concerned about that at all. It will only cause her more stress. Pretend like everything is ok & all is perfectly normal, while you are in front of her. Showing your stress & fears will only make it worse on her.

It might be a slow recovery. Some kids bounce back quicker than others. But she sounds like an amazing child & I’m sure she will try her hardest to get better sooner.

If you have any questions you can PM me.

Kelly

I was diagnosed with GBS as a very active teenager. My first symptoms were very minor tingling in toes and fingers and my face having a Bells Palsey effect, my speech started slurring and after a couple of days nobody could understand at all what I had to say, along with it came the paralyzed face, inability to close the eyes etc (blurred vision as well) – However I was not diagnosed with Miller Fisher and I am not sure if it was because my particular docs didnt know the different varients in ’85, or if it really wasnt MF. Your daughter seems to be improving slightly and that is a wonderful sign! I agree with Kelly, I know how hard it is to see your child like this, but the outlook is good, it just often takes a long time. I have not heard anything about the liver not having the ability to rid the toxins effectively – but with this, who knows.

I think at this point, it is very important for you to ask as many questions as you can, and not necessarily from doctors. go to the GBS foundations main page and register to recieve mailings, also see if there is possibly a liaison in your area who you could talk to. You need a lot of support at the moment, so keep coming back and everyone will try and help if they can.

i was diagnosed with GBS / MF in July 2006. My initial symptoms wer epins and needles in my hands and blurred vision that i didnt worry about too much and didnt even consider might be related to each other. I decided not to go to work and it was only an hour or 2 later when i noticed my speech was slurred. The actual sound of my voice had changed as well and i had what i call a nasal twang! That was what really freaked me out as i thought i was having a stroke (at 34!) I got on the net and checked stroke symptoms and decided that it probably wasnt a stroke as both sides were affected equally. I googled my symptoms and did actually come across some GBS sites. I decided to go to the ER at the local hospital but the doctors thought i was being hysterical. Luyckily they got a speech pathologist to come and have a look as i was adamant that i wasnt speaking normally. A young girl came and had a look and said my palate wasnt working and air was escaping. if i blocked my nose (to stop air escaping) i sounded much more normal – not a permanent solution though! She said it was most likely neurological – finally someone was taking me seriously.
the doctors got me an appt the next day with a neurologist but i went downhill overnight and was transferred by ambulance. The neuro diagnosed me straight away and i was given a LP to confirm the diagnosis. It wasnt until the results came back a week later that i was told it was Miller Fisher.

I had full paralysis including my eyes and was on a vent. I went on to make a full recovery though and was back at work in 6 months. My eyes were the last thing to come good – i had double vision when i came home from the hospital but that came good overnight a week later. Funnily enough, when i was able to talk with the trachy they didnt know if my vocal cords would have been damaged and if my palate would still be affected but my voice was perfectly normal.

Does your daughter have a speech pathologist and have they checked her palate to see if that is what is affecting her speech? I know i had problems with certain sounds (hard sounds i think like d s f) If it is the MF that is affecting her speech it should be a matter of time for the nerves to heal / myelin to regrow and then hopefully things will come right.

As Ali has said, the prognosis is generally good so focus on each little milestone as another step on the road to recovery.

Hi Cassie.

I am so sorry about your daughter being so sick right now. I have no experience with MF so I have very little advise to offfer. I have to agree with Kelly in that you might want to be careful with stressing in front of her about the piano and singing. She is probably very scared and needs her mommy to be strong.

Please keep us posted…my prayers are with you. I’m glad you found our forum…there is alot of support of knowlege here.

Best wishes,
Stacey

Hi Cassie
I am so sorry to hear about your daughter – it is really tough to be 6 anyway, but to be 6 and sick, well that’s really hard. I had Miller Fisher twice. To have it twice is extremely rare so do not let that worry you. Yes I had trouble talking. My face was totally frozen, and is still partly (no botox needed here), and I went to a speech therepist to work on that while in re-hab. Basically – it comes back pretty good on its own anyway in its own good time. The key being – in its own good time! Be sure to pay special attention to her eyes. Double vision and sensitivity to light are a big problem. Miller-Fishers patients have a really good recovery record. The ones you are talking here, like me, are the rare exceptions who had a tougher time. I bet that by the time the swimming pools are open for the summer, she will be ready to dive-in. And plan on her Christmas piano recital next year. She will be ready. Bear Hugs for her.

Alma
GBS-MFv 1993 and 2004

Get her in to see a good pediatric opthamologist ASAP. It’s important that the dr sees her when her eyes are like this!

Can she move her eyes left-right & up-down?

Is the eye patch the sticky kind? If so, she could develop a rash on her face from the adhesive. If this starts to happen you can buy a pirate eye patch & she can wear that. We did that with Emily too.

What is the treatment plan from this point on? Will there be more IVIG? Will there be physical therapy?

Make sure you schedule follow up appointments with a pediatric neurologist, pediatrician & possibly a pediatric physiatrist (nerve, muscle & bone specialists). Make sure that the neurologist & physiatrist are familiar with Miller Fisher.

I know this is overwhelming, to say the least. I promise you that it gets easier. If you need to talk to anyone just let us know. There’s a group of moms here that have been through the same thing that you are going through right now. If you need us, just let us know.

Good luck,
Kelly

hi hope things are going better ! i had m/f at age of 48 and now am 55 yes i had vision problems on ventilator and the whole terible ordeal but am doing better!,,you can read my story @ [url]www.aboutgbs.com[/url] page#2 down left side ,,i am known as survivor48 in this story! anything i can do to help i will! have a great day!