Still searching for an expert
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June 18, 2007 at 11:53 pm
Thanks to Ali, Gene, Jeremy, and others who responded to my first post. The information and genuine willingness to help was overwhelming. My first question related to PE versus IMIG. Article was great. Now I’m on to wanting an “expert” neurologist or pulmonologist, etc., in GBS if such a person exists.
My 33 year old daughter is now 6 weeks post diagnosis. She is now in the ICU of a long-term acute care hospital in the Minneapolis area, and has been there about 2 weeks. She has done some backsliding on her minimal progress and until just this weekend had been worse off than ever. She has just re-recovered small amount of finger movement in her left hand and wrist, can roll her eyes, and wiggle her eyebrows. Even has 1/2 of a smile; right side still sags. Still on vent; peg tube feeding is causing issues. In fact, she seems to have a LOT of “side” issues; having drawn the proverbial short straw on almost everything. Cytomegalovirus (CMV) has been identified as the culprit for her GBS, which came on following cough and congestion.
Ten PE treatments and she was still getting worse. No doctor was willing to do more of anything except let her body heal (or not) on its own. At this new facility, one dr. talked about IVIG, but my daughter and her husband decided against at least for now–because of all the potential side effects.
This supposedly rare syndrome certainly has a lot of subscribers. I can’t believe more research and answers aren’t forthcoming! And I can’t believe there isn’t an “expert” out there somewhere. Why my daughter and each of you have to go through bizzare treatments (like the heat thing and hanging upside down to test immune system–yikes!) and suspicions of your making up pain, tiredness, symptpms, etc. is all a cryin’ shame in this day and age.
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June 19, 2007 at 9:20 am
jane,
if she is improving, no matter how slow, there is no need for ivig. if not, ivig, although no guarantees, is safer than the pp she had. pls keep your posts on one thread so we can follow her condition. this is really good info for all [hint]. take care. be well.
gene gbs 8-99
in numbers there is strength -
June 19, 2007 at 11:57 pm
Gene,
Thanks for the input on the IVIG. The “two steps forward, one step back” rhythm of GBS recovery stretches me a bit. I have to keep that in check though, for my daughter’s sake.I appreciate the tip of keeping to one thread and recognize how it would make tracking her progress easier. This is my first experience with a discussion board, etc. so I’m just learning the protocol.
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July 17, 2007 at 10:20 pm
Hello All,
My daughter is on a definite forward trend….and it’s been along, anxious time coming. CV is breathing on her own for most of the daytime hours; relying on the vent at night, and when just plain wore out and tired. Is being fed real food; tube feeding only at night to compensate for any missing caloric intake. PT is cautiously optimistic that in 2-3 weeks she may be able to transfer to the rehab floor of the hospital and out of intensive care.We visited this weekend and saw firsthand the remarkable, albeit incremental, changes over the past two weeks. She can raise her arms from the elbow off the bed against gravity. She waved to us, in a very unsteady motion, as we entered her room. When she makes a fist with her right hand, the middle finger seems to have a mind of its own and uncontrolably pops straight out! (All other fingers stay curled under except the one.) Hmmmmmm…might that be a subconscious statement of what she thinks of this whole GBS situation?! It’s not nice, but it is funny!
I could never thank each of you personally, but I do thank God for you every day. I include prayers for your returning health and strength.
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July 18, 2007 at 12:17 am
Jane, That is good news, many little steps make up a big step. Please keep us posted on CV’s recovery. Take care.
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July 18, 2007 at 11:22 am
Dear Jane,
Believe it or not, you have found the experts on GBS. What specifically would you like to know other than doctors names?
Warmest regards.
Jethro
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July 19, 2007 at 6:19 am
it sounds like she is really starting to make some good progress. It might still seem a long way from where she was before GBS, but think what a long way she has come.
If she is able to eat her swallowing must be ok. They also kept me on NG feeds at night until i proved i could eat enough on my own … luckily the hospital food was nice otherwise i could have found that difficult! Coming off the vent is a big achievement too. Having her on at night is just a precaution, she can still breathe on her own but if she forgets to breathe, the vent will kick in. I would take enormous heart fromt he progress she has made.
Is she able to hold a pen? It made so much difference to me once i could write and communicate again.
Please keep us posted and i am sure we are all looking forward to hear of more accomplishments
PS had to laugh at the middle finger having a mind of its own!
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July 24, 2007 at 12:30 pm
The first thing Nate got back was also being able to lift his arms from the elbow.
It might not seem like much but it was a big effort then.
CV will make small but great improvements. They will come a little at a time but when you think of how sick she was, they seem huge and they are.
Give her all the encouragement you can, tell her about us here too. It will help her.
Trudy,natesmom -
July 24, 2007 at 4:53 pm
I am glad your daughter is making progress, I like the humerous spoof about the middle finger! Soon you will all be able to joke about it! Keep up the stregnth and good thoughts! I will pray for your family!
Dawn Kevies mom 😮
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July 25, 2007 at 2:07 am
Jane,
I am so happy to hear that your daughter is making progress, sometimes with this syndrome, any progress is what matters even if it might seem small. I have a question for you??? I will be coming to Minneapolis/St. Paul in a few weeks, I am not sure if you have been in touch with the foundation, however I would be happy to make a visit if you want. Email me if that sounds like something you would like me to do, jerimyschilz@hotmail dot com. I am a liasion here in Ann Arbor but in reality I like to help everywhere 🙂
Jerimy
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September 26, 2007 at 4:30 pm
It’s been awhile since I’ve been on the site. I will report on my daughter’s progress soon.
Today my question is about menstruating after GBS. Does it comes back? How long after before it came back? What effects did GBS have on it … regular/irregular, heavier/lighter, more painful/less painful, other similarities/differences per/post GBS, etc, etc.
My daughter has asked me to ask.
As always, thanks for your responses.
Wishing GBSers and caregivers better days!
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November 19, 2007 at 11:37 pm
I apologize for showing up only when I’m needy. 😮 Quite honestly, I am so void and vacant anymore, I don’t feel I have much to offer. Please forgive me.
First, my questions; then an update on my daughter.
[B]Q1: To those of you who use/used Lyrica—What was you daily dose? Did you experience increased appetite and/or weight gain?
Q2: To women who were on Lyrica WHILE they were pregnant: What dose were you on? How many times per day? What did your doctor advise you about your pregnancy while on Lyrica? How did your preganancy go? Did the Lyrica affect the fetus/child in any way? Your advice on getting pregant while on Lyrica?[/B]I would also like to hear from Ali 1985 dx, Carolyn, Gene, Jerimy, and others who have already been verbally supportive–whether or not you have personal experience with Lyrica.
Now the update: To quickly recap, CV was diagnosed with GBS on May 11, 2007, four days after onset of symptoms. Cytomegalovirus was cited as the culprit. CV had 11 PE treatments (unresponsive), was intubated within several days, followed by a tracheostomy. A quadriplegic for 6+ weeks. Moved from an acute ICU to a long-term ICU facility in early June.
Miracle of miracles, CV improved steadily, and by all accounts, rapidly (when compared to typical GBS recovery rates). It had to be the countless prayers of people known to us and unknown, people of all denominations and walks of life. CV’s neurologist has called her a prodigy–with no medical or scientific explanation of why or how she could have progressed so far…or so fast.
On September 1, 2007, CV was released to convalesce at home. More later…
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November 20, 2007 at 8:22 am
Hi Jane, You can get answers to most of your pregnancy questions while on lyrica from a site called Medscape-very informative and its the leading site that drs use. If you need me to get the info for you just let me know. I was switched to lyrica from neurontin while in the hospital-i switched myself back to neurontin after I was released a few days later, because of severe headaches while on it, and very little relief. I still use neurontin with no problems. You can also get information about Lyrica from any pharmacist, just call and give a short history.
That is Great News that CV has recovered soo rapidly. Give Her a Big Hug for me.
By the way, no need to apologize, we are here for you when you need us, that’s what Family is for!:) -
November 20, 2007 at 10:00 am
jane,
i’m v happy to hear cv is improving at such a fast rate. pls make sure she does not over do it. rest is important. no one knows how fast nor to what degree any one gbser will recover regardless of how serious the initial gbs attack. i am happy she is in the fast track group. take care. be well.
gene gbs 8-99
in numbers there is strength -
November 20, 2007 at 2:14 pm
Jane,
It is wonderful to hear that CV is doing so much better. I dont want to read too much into your post about Lyrica and pregnancy, I just cant help it ….. so I’ll not say anything until you tell us more sometime 😉 .
Firstly, I will speak to the Lyrica : My doc. started me on a highish dose without first starting small and then slowly increasing. I started on 125mg, but only once a day. I had a horrible reaction to it, and he seems to think that it was possibly because he didnt start me off on a lower dose and work me up. However, the way I felt, I wasnt prepared to try it anymore than the about 10-14 days I was on it for. During that time I drove through 2 red traffic lights, thats how badly it affected me – my brain felt like cottonwool, it was like trying to think through water (so difficult to explain). It did thankfully break the continuous pain I had, which was a great relief. Now I just stick to my Cymbalta 60mg x 2 a day and another med, which helps quite a lot for overall pain, just not the ‘breakthrough’ pain which I can still live with at the moment.
Has CV had the opportunity to speak with anyone who has been through the same or similar GBS experience as she has? For that matter, I think it would do wonders if you were to speak with someone too about your experience as a caregiver, it sounds silly in a way, but you may feel a certain sense of relief in way , as you have been though an awfully traumatic experience.
Keep us posted Jane
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