All about Guillain-Barré syndrome: Jimmy Logan's story! About childhood GBS.

Jimmy's first diagnosis was GBS but then a year later it was changed to CIDP because he wasn't making the progress like the doctors had hoped. The doctors still don't know if this is something that he was born with or if he acquired it after birth.

Jimmy Logan was born on 9/30/99 after a normal pregnancy with no complications. He was delivered by c-section and weight 5.5lbs. Everything looked good.
At his four month check-up, in January 2000, his pediatrician noticed that he seemed to be laying crooked. He sent us for an x-ray and diagnosed him with scoliosis and sent him to a specialist at the University of Virginia Hospital.

We saw the specialist who didn't think it was too bad, said that the bones in his spine were formed correctly, but set him up for an MRI and sent us to a developmental pediatrician. We saw the developmental pediatrician at the beginning of March 2000 and he did a evaluation and said he thought he had Spinal Bifida. During his evaluation he used a pointed object and stuck it in his legs and feet with no response from Jimmy. At this point he was 5 1/2 mo and unable to roll over or sit up unassisted.
We had the MRI done and two days later they called to say that he didn't have Spina Bifida.

The following day, he was with the babysitter at Wal-Mart when he started having a hard time breathing and they called 911. My husband and I caught up with him at the hospital and the doctors thought he had a seizure and decided to send him to the University of Virginia hospital in Charlottesville, VA , about an hour away.
At UVA, they did numerous tests, spinal taps, EKG, EMG, Cat Scan, blood work, muscle and nerve biopsies. After three days at the main hospital they sent him to the Kluge Children's Rehab Hospital (KCRC) in Charlottesville. The day we arrived there the doctors came in and told us that he was mal-nourished and would need to insert a NG tube. She said that he had Charcot Marie Tooth disease and did not expect him to live but a few months. Needless to say my husband and I were devastated.

A week after his admission we were discharged home with a NG tube to await the final results of the muscle and nerve biopsies. We came home on a Saturday, by Monday he started having problems breathing, so we took him to our pediatrician, who freaked out, and called for the ambulance and back to the ER then back to UVA. At KCRC they put him on oxygen which seemed to help his breathing. They finally got the results from the biopsies and said that he didn't have Charcot Marie Tooth but that he had Spinal Muscular Atrophy and that he still did not have long to live. All of these diagnoses were always told to us with the addition of we are not sure.

About a week later he really started having difficulty breathing, they checked his CO2 level and it was 150 (normal should be 30-40.) The doctor said that I had a choice, leave him at KCRC to die, or transfer him to the PICU and he would be intubated. There was no doubt for us: They were not sure of the diagnosis, take him and keep him alive. In the PICU where he was now 6 1/2 months old they had him intubated and heavily sedated. At this point even without the sedation he had little strength in his arms or legs, his breathing problems were due to his right diaphragm becoming paralyzed. In order to finalize their diagnosis of SMA they did a test on his DNA.

While waiting for that test, a neurologist came in to see us, and said that there was a long shot, but he thought that he might have something called Guillian Barre Syndrome. He said that he had some of the symptoms of GBS but it was a long shot because he was so young. It was usually seen in adults, and usually caused by the body attacking itself instead of the invading bacteria. This strips the myelin sheath of the nerve which causes messages not to reach the muscle correctly. While waiting for the DNA test he suggested trying him on treatment for GBS which was some stuff called IVIG.

All the other doctors that were treating Jimmy Logan held no faith whatsoever in what the neurologist was saying. Their main focus was trying to prepare us for his death, which they felt was imminent. Towards the end of that month after receiving some of the IVIG, the neurologist was finally able to get his reflexes that had been absent for sometime. Still the other doctors were convinced that he still had SMA.

We had a meeting with all the doctors who thought it would be best if they would give him a trach and a g-tube, in order to get everything off his face and get him off the sedation so we could spend to quality time with him before he died. After that meeting the DNA tests finally came in and it 100% ruled out SMA. That was the best possible day of my life. YEAH!!!!!!

That following week he received his trach and g-tube and then was sent back to KCRC. At KCRC they finally weaned him off all the sedation and it was so nice to have our Jimmy Logan back. While at KCRC he started receiving OT, PT, Speech and school. They made him a chair so we could put him in an upright position. We spent 3 months at the rehab center with daily therapy sessions and another round of IVIG.

During our whole stay there and even till the present the only doctor that is sure this is GBS is the neurologist the other doctors respect his diagnosis but don't buy into it a whole lot, and not just the doctors and therapist were like this as well. This really made it difficult on us as we were so relieved that it was something he would recover from. We finally secured nursing and went home on the 25th of July, four months to the day when he was admitted. We came home with nursing 5x days a week for eight hours. One thing the 3 months in rehab had done for us, is by the time he was discharged my husband and I were providing all his care and feeling very comfortable with it.

At present Jimmy is still on the ventilator. He is on a rate of 20 when he is sleeping and on pressure support when awake. He came home on pressure support of 18 we are now currently down to 12. He has returned to KCRC every six weeks for two bottles of IVIG.

In April of 2001 his neurologist changed his diagnosis to CIDP because he wasn't recovering as quickly as he hoped. He also wanted us to get a second opinion. He gave us four doctors from around the world to choose from. Two were in the US, one in Turkey, and one in England. We decided to go to the Dr. in St. Louis. We live in VA so still this would be quite a trip. It was too far away to drive so we flew him by air ambulance out. It was a small plane, my father went with my husband and I. My husband didn't care for the turbulance but Jimmy loved it. The whole trip was quite an experience, but nothing new was learned. The doctor there had only seen four other kids like Jimmy, but the one major difference was when the other kids went on the ventilator they immediatley went down hill, where Jimmy started to get better. Back in VA our neurologist decided to stick with his diagnosis but switched his treatment to Prednisone.

So in July 2001 Jimmy started receiving Prednisone once a month. The best thing about this treatment was that we could administer it at home. We were really hoping that this would start to turn things around but that didn't happen. He has continued to make small improvements and we aren't sure if its the medicine or just that he's getting bigger. He celebrated his 2nd birthday on September 30th.

Now in March of 2002, he is currently not taking any medication, the neurologist wants to see what he will do without anything. He does have delays in his motor development but as far as his cognitive development he's a smart little boy. We have been working with him a lot on sign language, this has helped everybody out a lot. He can also make some noise around his trach now. Unfortunately he's not saying da da, but can say "ma ma" and "pup" (we have two indoor dogs that he just adores). He still cannot sit up independently but loves to sit in your lap or in his stroller. His grip is getting better, we can best judge this by how hard he can pull hair. Daily we offer him baby food. His oral aversion is lessening somewhat but he still isn't thrilled about anything in his mouth. So if we could just get nerves working for his right diaphragm, his trunk muscles and the muscles below his knee we would be doing great, until then we continue to plug along. In the meantime Jimmy is getting ready to start pre-school in September and looking forward to warmer weather.

I've run into a couple families with kids that have similar problems as Jimmy. It has really helped having support from other people who can understand what you are going through.

Anne Barnes, mom to Jimmy Logan, (2 yrs old),
CIDP, trach, vent dependent, g-tube.

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