Kids and GBS?

I was working full time at a nursing home that required I get a flu shot. I had already had one, but I couldn't find my records. I asked my oby-gyn, and he didn't see any reason a second flu shot would be a problem. Of course, I have no proof, but the timing of that second shot lines up with the other cases of GBS that are linked to the flu shot. Whatever the cause, my symptoms started 9 days after my second child was born in May. They would eventually figure out it was the Miller-Fisher variant of GBS. That starts in the face and works its way down the body. I slid downhill very rapidly. My first ER visit they told me I had a migraine. The second visit I was sent home with steroids. By the time we went to a different hospital, I couldn't even eat soup, I was losing my vision, I couldn't walk, I couldn't feel my baby latch on when we tried to nurse, and I couldn't hold her unsupported. My speech was becoming very slurred. I wrote my two daughters, one 18 months old, and one 10 days old a goodbye letter. I didn't think I had much time left, and I was rapidly losing my ability to communicate. The new hospital was everything the other hospital should have been, and they transferred me to Denver where there was a neurology ward. I spent about six days there before being discharged back home. My family scrambled to take care of my kids while my husband took me to Denver. When I came back to my parents house, I saw my little baby for about one hour before my husband took her to the pediatrician. She had RSV and they hospitalized her for a week. We had some tough decisions to make at this point as a family. My husband had just completed the long preparation coursework to be accepted into the nursing program, and started his first semester to get his RN licence when the shit hit the fan. They offered him a spot that fall and a scholarship that they couldn't hold. We spent a few days at our old apartment - me and my liquid diet and walker, my baby on her oxygen, and my toddler doing her best with everybody when my husband's mother had several medical problems, that put her in the hospital. Shortly after that she broke her hip. So our summer was spent on her ranch, trying to care for her before and after the surgery to fix her hip. My husband and mother in law had to drive to lots of appointments and since she lives in the boonies, that was usually an all day affair. So there I was, the primary care giver for my babies while I was trying to recover from GBS. They all told me I needed lots of rest. I would think about that while I made bottles in the night, and changed poopy diapers and rocked and burped her. By the time my mother in law was over her surgery, it was time for my husband to start the nursing program. I would lay on the couch and have my children trying to wake me up - crawl on me, jump on me, yell mommy. I would know they needed me, but I couldn't respond. I'm still pretty bitter about the timing of my illness. My baby just turned three. I still have days of exhaustion. All the doctor's recommendations pretty much went flying out the window due to all the crazy circumstances surrounding my GBS. The right side of my face has a deficit still, and they have me taking two different anti depressants, a stimulant and sleeping pills at night. I know I am a lot more fortunate than some because I have my mobility back, but just these last few months I have been really dwelling on the bad stuff.

Did anyone else out there have GBS and tiny children at the same time? Any moms who had children and then GBS later have any input on the exhaustion I still feel all the time? I feel like its hard for anyone to take me saying "I'm tired" as anything exceptional since I have a 4 year old and three year old now. My husband did get his degree and license, and has a night job making wonderful money that will start in a few weeks. But that leaves me holding the bag alone again for most days. My only obvious symptoms are my face, and a tendency to mumble and slur my words, especially when I am tired. But I still feel tired all the time.

I have only had GBS since 12/8/13 but mine was just like yours. Starting in the face and worked down to my feet. I got hit the hardest in my feet and my face. Just starting to get my smile back. My speech is slurred at times too. I’m still using a walker. I have four children ages from 7 to 14. I’m a single mother who normally works full time. I still haven’t been able to go back to work. I totally can relate to the tiredness. I also think about all the things that I can’t do or have a hard time with. It’s hard to look back and see how far I have actually come. My kids all thought I was going to die when they saw me in the hospital. The dr says I will recover 100%. However I don’t see it. Especially in the areas I got hit the most with. It’s hard raising a family while having this. I pray everyday for me to be normal again. My youngest son has a rare eye disease which he needs to travel 12 hrs away for surgery. A week after I came down with this is when he was scheduled for surgery. I had to reschedule for January. I was in the hospital for 7 weeks. Just got out and the next day had to have someone drive us to get his surgery as I still can’t drive. I don’t know how I done it but I did. My oldest daughter has epilepsy. My oldest son has ADD. My younger daughter has braces and requires frequent checkups. I just take each day as it comes. My life is hectic and chaotic, but at least I am alive and get to be with my children. I wish you the best and stay strong. Thank you for sharing your story as I can relate.

Laetari, I haven't had GBS, but there was a time because of other circumstances when I badly needed help taking care of my twin babies. I hired four or five different young women from a local college to come and take shifts on different days just to get through. And I still remember how long the last half hour seemed before my husband arrived back home.

I hope you can get someone just to come over once in a while and take the kids to the park or read them some books. Or, even better, do some dishes and laundry for you. Wishing you some rest soon!

Reply to letari: My goodness, it would be hard to top that story. When it rains, it pours ... or it seemed like that is how it was for you and your family. Well, it seems that things are getting better - you have two healthy children and a husband with a promising job. I know some single mothers that do not have healthy children - so, you really have a lot to be thankful for in the big picture...healthy kids and a husband.

Hi, I am so sorry you had such an awful experience when your child was so young. I got GBS when my son was 9 months old and it was also an absolute nightmare. I was completely paralysed and intubated for 6 weeks, not even able to smile. In his eyes I think his Mummy just disappeared. He would come and visit me every day in the ICU but only for a few minutes and since I couldn't talk we didn't really have much bonding.

The hardest part for me when I got home was that he didn't see me as his Mummy anymore. I was a strange woman from the hospital. It took a whole year for things to become normal between us again and that was worse than all the nerve pain and physio. I empathise completely with your feeling of bitterness and guilt about not being able to be there for your children. I also felt the same for a long time, but not I try not to see it as being cheated out of time with my son. I just try to appreciate even more the fact that we have such a great relationship now and that I can get down on the floor and play with him, or pick him up and swing him around.

It is now 1.5 years since I got sick and I am mostly back to normal. It's hard for me to say whether or not the fatigue I sometimes feel is a residual or just because my son had a bad night. I just try to move on with life and not feel guilty about the things I don't do with him but happy about the fact that I am there for him and can talk and smile with him. I think it's human nature as a parent that you always feel you're not doing enough but I'm sure you're doing a fantastic job! I wish you health and happiness.

Dear Swiss: Wow - several of you have had a terrible time with this GBS - not meaning the sickness ... more with needing help to care for your young children. Blessings to you. I am glad you are better. Nebretta



Swiss_milkmaid said:

Hi, I am so sorry you had such an awful experience when your child was so young. I got GBS when my son was 9 months old and it was also an absolute nightmare. I was completely paralysed and intubated for 6 weeks, not even able to smile. In his eyes I think his Mummy just disappeared. He would come and visit me every day in the ICU but only for a few minutes and since I couldn't talk we didn't really have much bonding.

The hardest part for me when I got home was that he didn't see me as his Mummy anymore. I was a strange woman from the hospital. It took a whole year for things to become normal between us again and that was worse than all the nerve pain and physio. I empathise completely with your feeling of bitterness and guilt about not being able to be there for your children. I also felt the same for a long time, but not I try not to see it as being cheated out of time with my son. I just try to appreciate even more the fact that we have such a great relationship now and that I can get down on the floor and play with him, or pick him up and swing him around.

It is now 1.5 years since I got sick and I am mostly back to normal. It's hard for me to say whether or not the fatigue I sometimes feel is a residual or just because my son had a bad night. I just try to move on with life and not feel guilty about the things I don't do with him but happy about the fact that I am there for him and can talk and smile with him. I think it's human nature as a parent that you always feel you're not doing enough but I'm sure you're doing a fantastic job! I wish you health and happiness.

I can relate to your story somewhat. I am only 16 so I don't have kids but my GBS started in my mouth and my feet. it grew to where I couldn't move my face. my first visit to my doctor thought the numbness what because of high blood pressure and the second visit they thought it was bells palsy because one side of my face stopped working and they sent steroids home with me to help. by the third visit I couldn't walk far I had fell twice.

if you don't mind me asking, are your face muscles not working, if not then are they still now working or are they healed? I am a band kid and I am unable to play saxophone is my band. it has been two months since my journey has started and I want to know so badly how long it will take.

the left side of my face has come back almost fully but by right side of my face is still not back all the way. sorry if I am wasting your time with my silly question

-Lexis

Lexis - I feel you have very legitimate questions - I hope you get your face muscles functioning fully in the near future, so you can get back to the band. I think that is a good activity for students. Nebretta

Thank you all for your sweet encouragement and support. It really is a relief to know other women have had experiences like mine. I needed to get some of that bitterness out of my system, but I didn't want to unload it on my family around me. They have been so supportive. When I'm not feeling so bleak, (which is most of the time) it did occur to me that as miserable as I was during the worst times, my children really won't have any memories of the worst of it.

Swiss, my experience sounds like a cakewalk compared to yours!

Purple, all single moms have my utmost respect for all the work they do even when they have no major medical crisis going on at the same time. And you had yours AND your kid's to cope with. You are just awesome.

Dancer, once my husband's new job starts, and we get moved into our new city, the finances should improve enough that help would be possible. And it never occurred to me to look for help on the college campus! That's brilliant.

Nebretta, thank you for your kind encouragement.

I've been lurking in the forums here for a while now and it was a big, helpful step just to say what I've been dwelling on. Thank you for answering me and not scolding me for my pity party.

Lexis,

Your GBS experience sounds like mine. As I'm sure you know, I can't promise that your healing will go like mine, but I'll be more than happy to share what's been going on. The right side of my face is still not back to 100%. I'm not sure it will ever get back perfectly, but I can talk and (sometimes) whistle. It's amazing how much we take our face muscles for granted until they quit working! Trying to eat an apple with no lip control is a bizarre experience you've probably had. For a while I had to turn my head back and forth to help the food move around in my mouth when chewing. Your cheeks do more than smile. Who knew, right?

I don't know what insurance options you have, but you should ask about getting a speech therapist. I had one who was really helpful in giving me tips on how to get back muscle control. I noticed a lot of improvement when I worked on it, but with the kids taking up all of my wakeful time and then some, I didn't really follow up. Make sure the therapist knows what they are doing if they want you to use any electrical stimulation machines for your face. My guy was only familiar with how it worked on big muscle groups. He had me in tears of pain and kept telling me I needed to turn up the current even higher. I met a therapist later at a women's retreat that told me that was ridiculous and that he didn't know what he was talking about. I had already figured out that much for myself, but I sabotaged myself by ignoring everything he taught me and not doing the simple exercises. Basically, I threw the baby out with the bathwater.

What they involved was pretty simple in concept. Get a good hand mirror, or a comfortable place where you can see your face. Focus on the side that is working and do a movement like smiling, or pursing your lips. Feel the side that works and which way the muscle pulls. (A diagram of the muscles in your face might help you here.) Some times the mirror would really help, and sometimes it worked better if I closed my eyes. Now find the spot where that muscle should be working in your face and try to move it. Stare at the spot, keep trying, rub the muscle in the direction it should be pulling. Don't be discouraged if it feels like nothing is happening. If you are anything like me, your face is compensating by using more of the working side than it should. If that's true, work on trying not to move the other side and only try to move the nonworking side. This can be very frustrating, but keep at it. The first few times you do this, you will want your full concentration, but once you start getting results, you can work on exercising a muscle while you watch tv or something and you won't need to concentrate so hard. You are trying to coax the nerves back into doing their job. Be patient with the process.

If it isn't too emotionally painful, try putting your mouthpiece in to track down the muscles you need to get back in the habit of behaving to play.

Sweetie, I was an orchestra kid in high school and I would have been devastated if I had lost my ability to play. Try to find ways to keep the music in your life while you heal. Talk to your director and band friends and see if there is something different you could do or learn. Maybe you can join the percussion section for a while so you can still be part of the band, but have something to focus on besides your missing sax. If that hurts too much, does choir interest you at all? If it does, I'd bet your teachers would help you rearrange your schedule so you can sing with them as you are recovering. And as a bonus, the singing would probably help with the muscles in your face too. Any of the orchestral strings of course, or a guitar or piano. Learning more instruments was fun for me, and helped me be a better musician over all. Don't give up. Hang in there and it will improve.

Sending you big hugs,

Melody

I have another question about the electrical stimulation machines, is it something that I should be doing? I am in PT and Speech therapy.

about the music situation I am currently learning my 11th and 12th instrument, Flute and Piano.

thank you for all your information it helped me a lot reading it :)

-Lexis