All about Guillain-Barré syndrome: Lyndsi Graf had GBS as a 20-month old baby, with pain and autonomous disturbances

My name is Pam Graf and our family lives in St. George, Utah. On November 22, 2002 my 20-month-old daughter was life-flighted to Primary Children’s Hospital in Salt Lake City, Utah. She had experienced a severe cold the previous week, followed by an ear infection.

Her symptoms began on the preceding Saturday. She had cried when trying to crawl up our steps and would scream in pain when we tried to change her diaper. By Sunday night she was very clingy and not sleeping well. As the week progressed she seemed that she was having pain in her lower back. The pediatrician’s office ran a urine sample to check for a kidney infection. We saw one of the P.A.’s at our doctor’s office and he said he thought she had “toxic hip” from her cold. He sent us to the hospital for blood tests and said he would call and check on her the next day. At that time she was still able to walk a few steps, but it obviously caused her severe pain. Each night her sleep had become more sporadic – by Wednesday night she wouldn’t sleep more than 1 ½ hours at a time. I put her in bed with me and she seemed like she was in too much pain to sleep.

The next day (Thursday) she laid perfectly still on the couch where I had put her; she had her hands in a fist up by her face and was unwilling to move her head other than keeping her face to her right. If I touched her at all she screamed in pain. My husband called and talked to a different P.A. He told us to bring her back immediately. He checked her reflexes; they were there, but faint. He had us admit her to the hospital.

The pediatrician had been out of town for the day and came over to the hospital to evaluate her that evening. When he saw her he knew right away what she had. They did a spinal tap and started an IV. When the results of the tap showed her elevated proteins they sent us to Children’s Hospital by life-flight.

They did an extensive MRI on her when we got there. It showed swelling of her nerves where they exited in her lower spine. The doctors did a lot of tests to rule out anything else. They placed her in ICU for 2 days.

During this time she was in so much nerve pain that she would not allow us to put clothes on her or even cover her with a blanket. If we covered her, even if she was asleep, she’d wake up and cry.

Lyndsi never did develop paralysis, which I think is what made them unsure of the GBI diagnosis. They wanted to do a nerve conduction test on her. I asked them if it would change their treatment plan – they said it wouldn’t, it would only verify their diagnosis. Because we had heard how painful the test is we refused to allow them to do it. On Monday they started the IGIV therapy for 2 days. That is when she began to make major improvements.

The medications they had her on were Tylenol, Naprosyn, and Neurontin. As long as we were never late for these she did pretty well, but for nearly a week she still had pain even with all the medication.

Unfortunately, a few days later she developed a severe blood infection. Her temperature spiked suddenly to 104 degrees and her heart rate was at 225. They started her on IV antibiotics, which we continued and extra week after we got home.

Other things we noticed with this were that her blood pressure was erratic, we went through several days of her heart monitor going off because her heart rate would drop when she slept, then we went for a few days where her respirations would drop when she slept. They never had to use a respirator, but there were several days she had times of “blow-by” air where they put the oxygen next to her and let it blow toward her face. That seemed to be enough to help.

We were in the hospital for 15 days. When we got home she was unable to do any physical skills other than to lie on her stomach on her elbows for short bouts and roll over in bed. She couldn’t sit, stand, crawl, etc. The doctor told us it would be weeks if not months before she would walk again, but 4 days later she was up and going!

It’s been 2 months today since we went to the hospital. I think she’s pretty much at 100%. She does tire a little more easily physically if she’s been playing hard, and occasionally we’ll have a day where she complains about “owies,” but those are becoming rarer.

The doctors are just amazed at how quickly she has recovered. I must tell you, there was an immense amount of prayer for this baby by many friends, relatives, and neighbors, and even complete strangers.
I feel somewhat guilty writing about how well she has done after reading so many other SAD stories of people suffering with this, and I realize how truly blessed and fortunate our family has been for some reason. I just hope that in sharing my story, maybe someone will find an answer or connection they’ve been looking for.

Pam Graf
01.2003

September 2003 Update:
I wanted to write and give you a brief update of my daughter, Lyndsi, whose case study you published on your website several months ago. In one month it will be a year since Lyndsi contracted GBS. As I read through your stories on your website I weep. We have been so very blessed and fortunate.

Lyndsi no longer has any physical symptoms…she finally stopped complaining of occasional “owies” about two or three months ago…I didn’t even realized they had stopped until someone asked me about it. The only thing I still see is that she tires easily and at 2 ½ years old she daily takes 2 or 3 hour naps…I can live with that!!!!!

Thank you so much for your website and all of the information available.

Sincerely,
Pam Graf

February 2005:

Lyndsi seemed to have no symptoms for the first year after her return from the hospital and subsequent recovery, other than tiring easily and having very long naps.
However, almost a year to the day that we got home from the hospital, she lay down on the floor one day and cried and cried. She seemed to be exhibiting the same symptoms we had noticed with her original onset – pain in her legs and lower back. Nothing I did could soothe her or relieve her pain. This went on for about 2 hours (all the time my mind racing through the 101 questions of “what now?” “can we go through this again?” “should we go back to the doctor right now??” “I thought she was all better”).
I must admit, panic is a pretty fair description of my feelings at that moment! But then, 2 hours later, just as suddenly as it had started, it ended. She literally jumped up and started running around again.

I truly do not think she was faking it – after that incident she began having occasional pain in her toes. At first we thought she was having muscle cramps. We increased the amount of calcium she was taking, made sure her shoes fit well, did stretches, and anything else we could think of that would help. When I took her to the pediatrician for her 3-year-old checkup, I was telling him about this and she actually had an attack of this toe pain while he was still in the room. He worked with her leg during the pain and confirmed that it was NOT a cramp, but said that in some individuals who have had Guillian-Barre there is lingering pain in the feet and hands from the nerve damage. He feels confident that over time it will completely heal.
We can go for stretches of time (maybe a week or more) with no pain, and then we can have a number of days of nearly constant pain. She seems to be worse when she is getting a virus, like a cold. I have found that occasionally when things are especially bad, Motrin seems to help the symptoms.

There are a few other random things I notice, but I don’t know if they are related to GBS or not. However, I thought that I would include them in case others have noticed the same thing.

I have noticed that when she gets cold she does not easily warm back up. The main times I notice this are when she has a bath, and if she has something cold to eat, like a milkshake. I have wondered if this IS related to the GBS because in the hospital we had noticed that she had a lot of difficulty with regulation of her autonomic systems due to the GBS, such as blood pressure, heart rate, and body temperature. But what I find funny is that when she DOES get cold like this, her reaction is to become tremendously tired and she begs to go to sleep.

She still tires easily and will frequently nap 2-3 hours/day even though she will be turning 4 in March. I have been told that this should get better with time, also. When she IS awake, though, she is constant energy and motion. We took her on a family hiking trip last summer and were surprised how often she said that she needed to be carried, and we gave in to her requests because we weren’t sure if she was truly in pain, or just enjoyed the fact that her teenage brother and sister would give her free piggy-back rides! We still aren’t sure on that one.

We have seen some amazing improvements. At the time we finished her physical therapy she still had major flexibility issues, and I was concerned that she would never regain that. She also had lost all of her reflexes in her elbows and knees. I am happy to report that she has almost completely regained all reflexes, and she is incredibly flexible. We signed her up for a toddler gymnastics class, and you would never know that she had ever had a problem. She is the most limber child in the class and is full of energy and enthusiasm. She also is one of the strongest children in the class, which brings tears to my eyes when I see her now and yet remember that when we left the hospital she could barely even hold up her head by herself.

I think, though, that in sharing this story, it’s also important for parents of children who have experienced GBS to know of my personal emotional road through this. I find that even now, 2 years later, I feel that it is important for me to be able to share this story with others, especially when I see what great things she can do now – it’s kind of like “Hey, you need to understand how far she has come!” But if I spend too much time thinking or talking about our experiences, I still get pretty emotional. I can’t look at her and see the things she’s doing without thanking the Lord for her miracle and for having her in our life. I look back at all the growth I have experienced through these lessons and the compassion that I have gained. I think that just maybe I don’t take things for granted as much anymore. And on a funnier note, I find that around Christmas (since it happened over the holidays) I get really paranoid about being completely ready for Christmas early “just in case” something should happen in our life. I realize that this is totally irrational, but it’s just something that “came with the package” for me.

When we were at PCMC they gave me a journal and said that I should write down EVERYTHING. I did, and 60 pages and 15 days later I had a great record of what had happened; I am really grateful for this because so much of that time seems like a blur. Last Fall I decided to type that journal onto the computer and burn in onto a disk so that we would always have it. I was surprised how emotionally hard it was for me to type that, yet getting it finished helped me to have some closure with the experience and maybe feel like I could move on now.

I didn’t realize just how much of an impact this whole thing had had on my oldest daughter until last semester. She is a PDBio major at BYU and decided that for one of her research papers she would write about GBS. She figured it would be a “breeze” because we had done so much research and had first-hand accounts. But she didn’t get very far into her work before she realized that this was still too emotionally charged for her and she had to change her topic.

I’m just so grateful for the wonderful outcome we have had and truly feel that it is because of the faith and prayers of so many friends and even complete strangers. I realize that we are very fortunate with her quick recovery and subsequent good health. But experiencing GBS is something that will truly change your life forever, and it’s ok to struggle with your emotions and feelings. It’s been 2 years now and I’m not sure if I will ever get past the lump in my throat when I think about that experience. But I can think of so many worse things.

I hope that somehow my sharing our experiences can help others who feel lost, or alone, or who just want to understand. It’s really going to be ok.

Sincerely
Pam Graf
02.2005