Curran Bailey

I apologize for the discontinous nature of this narrative.  I add things as they come up. At some point in time they will be organized.  Like when the last child leaves home! Dr. Mom
 

 Curran is the fourth son.   On February 4th, 1990, Curran woke up to eat at 4:00 AM.   He was not yet four days old.   I had taken ibuprofen for a fever from an unknown infection.   ( I always got infections as a result of the immunosuppressant Rhogam, which I always had to take.)   He cried for a few minutes after eating and then I didn't hear anything else.   At 8:30 AM his father went to check on him and found him limp, pale and hardly breathing.  I gave him 4 quick breaths and then found that he still had a pulse.   I tried to wake him up and he couldn't rouse himself. He made sounds as if his lungs were full of fluid.   When he got to the hospital, his blood pH was 6.22.   Normal is 7.1.  It turned out Curran was allergic to aspirin and cross-reacted to the ibuprofen. The allergic reaction caused the acidosis which caused his brain damage.  Besides the PVL (shrinking around the ventricles), he has a dead spot in the left side, associative area. His short term memory for numbers and letters is bad. Curran didn't do anything until he was three and a half. He is closing the gap.Of course, Geisinger (where he was Life-flighted to) doesn't really believe in allergies.  They kept him there for a week, torturing him.  He was tested for every known metabolic disorder.  His heels showed scars from all the blood tests for three years afterwards.

     When Curran was stricken with this acidotic reaction that caused his brain damage, I was still sick from the infection.  Perhaps it was illness or fatigue, but there were some days when I could not bear the 45 min. trip each way to Geisinger to watch him be tortured. Kevin blames me for not going. But other than providing him with breast milk, I felt helpless to do anything for Curran. I would lie awake at night and fantasize about kidnapping him out of there so I could care for him properly. When Meryl Streep tried to get her son out of the hospital in the 1997 movie, First Do No Harm, I cheered her on.  My heart's fantasies pounded with her rhythm of her feet.  Running away is a good explanation for the way I felt. For the first six years, I would get depressed and have nightmares that he stopped breathing around the anniversary of his birth and near death.) I can't help but think about what our lives would have been like if Curran had just died.

     Curran came home on Valentine's  Day 1990.  Other than our familial amblopia, we didn't notice any problems until he was 4 months old. His head circumference dropped with relation to the rest of his body size.   He didn't sit up by six months.  We went to Geisinger's pediatric neurology unit.  By now, he was 11 months.  Curran laid on his belly and made his kicking with both legs airplane movements.  The neurologist did not believe me that all my other boys went through this stage.  Bluntly and quickly the doctor told me that Curran had spastic quadriplegic cerebral palsy.  I took it well but had a million questions.  He told us that Curran would likely be mentally retarded and not develop past the age of 5, mentally.  He then told me to call the local Early Intervention (EI) provider who specialized in retarded children.  That's all.  Out the door.   I was to fight with them many times over the years over the issue of seizures.

Actually it was an argument in the emergency room over whether Curran was coming out of a seizure and needed to be intubated which led me to leave my ex. I felt alone, trapped, and unsupported. There were also times in IEP meetings about my gifted ADD sons where he contradicted me in front of the Enemies. It is supposed to be the two of you against the world. And when he was not the expert, I expected him to trust my decision.

Excerpts from mail: 12-Jan-97 sibling support by Larry A. Fiebert the coordinator of our
The level of "burden" felt by mom (isn't ALWAYS the mother) was a key variable as to the adverse impact on siblings.Thus, the more support parents (especially mom) receives, the less her stress, the less of a sense of "burden"-- the less negative impact on siblings.

     I could not explain to my friends who have no children, this was the main reason I left Kevin. I was severely overburdened and unsupported as well as being sick myself. He frequently ignored me and was never home.  The marriage was in trouble from the time I had to go fight the school district about Bryn's giftedness and learning disability.  The stresses of more special needs kids after that, just drove us farther apart.  I realized that this was not the life I wanted for myself.  If I somehow expected my children to make it up to me (that I had sacrificed my life for them,)  I was placing an unhealthy and impossible burden on them! I am supported and healthy now. I am amazed at the strides the kids have made in these three years since I left. Ultimately, you are responsible for how your own life turns out. Growing up means accepting that.

How siblings handle a disabled child in the family:
     One time, one of Bryn's classmates said Curran was retarded. Bryn reported it to me, but I felt no emotional connection to the accusation. Bryn just told the kid that Curran suffered brain damage, and that could happen to anyone.

Left-Right Laterality-  Aubrey is mixed dominant. At least he was three years ago when we had him tested. But his ADD is better than all the others and he is the most verbal. He is, however the most likely to get lost. And Devin and Bryn have good RH dominance, but can't tell their LH from their RH. Curran can not only tell you his L and R, but also someone those of someone facing him with her arms crossed! The differences are incredible!

Nutritional Intervention

I nursed him until he was 19 months, like my others. I gave him B vitamins, choline, wheat-germ oil (source of octocosanol and E),GABA, taurine, threonine and liquid aminos for his first two years. Of course, I can't tell how bad he would have been without this stuff, but doctors and therapists say that he has amazing skills for his degree of involvement. He used to have 4 hour long (partial complex) seizures where he was still conscious, but could only move in slow motion. Since I started the Vit E again, they are down to 2 mins.. Usually when tired and exposed to gas fumes. No meds. I don't believe in treating a symptom until I know what caused it, and it is unavoidable.

I am considering Baclofen. His last skill he needs to acquire at home will be dressing himself. (It is just too much trouble to ask him to set the table.  He sets the flatware on the floor while pulling himself up the table.)  He was potty-trained at age 7 by a professional who did it in one day. Sometimes he leaks when his allergies are acting up. Ditto for drooling.

Treating Curran like any other child:
I rocked, ran, tossed, rolled, tickled and spun around in circles with him. I held him up so he could play with the toilet when he was 2. All the normal movements he would make on his own. The books say not to tickle because it makes a spastic kid tighter. But all the other boys begged to be tickled after two years, so Curran got it too. (I think he may not have liked it until he was 3. You can tell if they like it. There is a developmental age where it doesn't feel good. )The first thing he did when he got to move on his own (power chair driving lessons at 3, ) was running around in circles. Other mother said that spinning helps organize the brain. (Well, one time, a 6 y/o boy with severe CP threw up the night after too much spinning, but that could have been coincidence.)
 

Tricks we use to get Curran to use his right hand. His right side is much worse than his left.  He never used his right hand until he was 4.  From the time he entered early intervention, everyone has been working on getting that hand open and then used. Now, when he is lying over the ball at the therapist, I put his letter cards in front of him on his right side and then when she rolls him foward, I ask him to point to the card which sounds like _____. His brothers let him push them down if he uses his right hand across midline. (We got him to talk by saying "Fall down please." And then they would and he would laugh.) Curran will always prefer to use his L hand to do everything. Every morning, Curran opens the garage door with his control; he drives his chair out. Aubrey then lies on the garage floor under the door. If Curran closes the door with his R hand, Aubrey will lie there until it almost squishes him and then roll out quickly. This tickles Curran. If Curran tries to use the R hand, Aubrey won't stay under the closing door.
Left-Right Laterality-  This is always an issue when there is more brain damage on one side than the other.  Aubrey is mixed dominant. At least he was three years ago when we had him tested. But his ADD is better than all the others and he is the most verbal. He is, however the most likely to get lost. And Devin and Bryn have good RH dominance, but can't tell their LH from their RH. Curran is left-handed by necessity.  Curran can not only tell you his L and R, but also someone those of someone facing him with her arms crossed! Kids are so much fun!
 

Botox:    Twice a year, Paul and I take Curran (and the whole gang, sometimes.) to a wonderful doctor I found by searching the net for Botox. The doctor is a specialist called a "physiatrist". He is like a physical therapist who is an MD. Dr. Cava is a pioneer in the use of botox for the pediatric population. (Botox is the brand name for the highly purified toxin that causes botulism poisoning.) The toxin works (both good and ill) by binding irreversibly to the acetylcholine receptors in the muscles. Since Curran's muscles are too tight, the toxin releases some of the tension in them, allowing his more freedom from his spasticity. We have had two botox treatments with good results. (Last time we went, he held out his "bad" arm to the doctor and said, "Fix my arm.") The crime is that we even have to drive 5 hours to NJ to get Curran done by Dr. Cava because nobody in PA is doing it. The one hospital (Geisinger again,) told me they would do it for us, and we got there, it was the same pediatric neurology dept. that I am always fighting with! They were just trying to recruit more people for their new CP clinic. The neurogist told me, "You know that botox is just a temp. effect." I said, "Yes! That's the point! I want to give his muscles a chance to balance themselves." He refused and said Curran has too many muscle groups involved;  he needs surgery. I told him that I didn't need to drive an hour to hear that again. And left. I would like to have his adductors done but Dr. Cava won't give more than 50 units and we use that much on his arms and gastrox. Maybe next time. And we have also observed a 9+ month long effect.

Have I considered SDR?:  SDR is selective dorsal rhizotomy. A rhizome is a nerve root. Dorsal are the nerve bunches that run away from the brain. They carry too much excitatory signal to the muscles, so the child is stiff or spastic. The selective part is because the surgeons stimulate the nerve before the cut to see if it is one that is causing stiffness. Tomy means cut. It is still brain surgery. People who have done it praise the miracle. Some say it works best on the lower body.
        Dr. Segal "evaluated"  and thoroughly pissed off Curran and then said, "He is
not a candidate for rhizotomy because of his behavioral issues."  (The OT
and I warned him not to grab Curran without warning.)  They were the
ones who said SIX weeks in a body cast.  That would just drive Curran crazy.
The patients also receive therapy 3 times a day for that time. They are currently
doing studies to determine if that same therapy without the cutting,
is responsible for the improvements seen.

How disability affects the child's psychology:
     Since CP is a birth time accident, most people just accept this as the way they have always been. I had a friend in Texas. Her name was Deborah Beam and she had CP.   Back then there was no name for it.  At least if there was, her mom never told us. She was teased about the way she walked. ( If anybody knows Deborah, please tell her to get in touch with me.) Nowdays, there are all kinds of awareness training sessions in the schools. I have been told that when you have a handicap for as long as you can remember, it becomes no big deal. This is just the way you have always been. People who become handicapped later in life, don't handle it as well.

I am curious as to how growing up handicapped affects self-esteem. Curran is just 7. He has spastic quad. cerebral palsy.  (CP is brain damage that occurs perinatally.)  About two years ago, he stopped looking at himself in the mirror and having his picture taken. Things he previously enjoyed.  It is almost as if he has noticed that he is different and it has affected his self-esteem.
Curran uses a walker most of the time. He has no friends in walkers. He has a friend who is 29 and drives a power chair. (Hi Cindy!)  He is recently potty-trained and seems very proud of that (as am I!) Other children like him. He is invited to parties and given presents for no reason. Yesterday a girl from his class called him. I was so excited. When he won the Derby race at Boy Scouts everyone cheered loudly for him. He wasn't startled, but he hung his head and cried pitifully.

When it was time, weeks later, to go up to get his award, Curran stood up proudly, smiling. Perhaps being tired has something to do with it. Now he seems to be more confident. I think first grade had a lot to do with it.

How siblings handle a disabled child in the family:
     One time, one of Bryn's classmates said Curran was retarded. Bryn reported it to me, but I felt no emotional connection to the accusation. Bryn just told the kid that Curran suffered brain damage, and that could happen to anyone. Using the "r" word, gets the child's tongue cayenne pepper in this house.

How Curran is doing. Curran is a big user of assistive technology. He walks with a walker for short distance and powerchair for long. He rides horses, swims, and talks on the telephone whenever he gets a chance. He must have been the most popular kid in the school. Everywhere we go, people stop and talk to him. Girls call him and he gets invited to parties. Curran plays with educational games on his touch-screen lap-top which he takes to school too.

Update and help needed.  The screen on his laptop is broken.  There are no longer pen-platform (touch screens) available for his NEC Versa M75.  We cannot even find a regular screen.  By disabling the touch screen drivers, we are able to use it as a regular computer.  But Curran cannot use that little ball on the front to access his programs.

The Future?
      I was obsessed with trying to find out what the future would hold for Curran. The neurologist had dire predictions. The most reassurance I ever got was from a parent whose son was a lot like Curran. She told me he would walk. Another one whose son has CP and autism told me not to worry because Curran was a lot more focused. She could even tell that when he was 15 months old. I once met a 25 y/o with CP at Knoebels Amusement park. He had a wife, a good job and a new baby. He answered my questions about what he could do at different ages. He told us how Elizabethtown (Hershey's old CP clinic) had hacked him up with the surgeries that must have been pretty experimental then. But talking to him was a wonderful experience. I met a 19 Millersville student with CP at the Rennaissance Faire a couple of years ago. Talking to these experienced people is my greatest source of reassurance about Curran's future.

The CP listserve (one of many for special kids, hosted by St. Johns)
have been great sources of information for me.

FAQs done by the CP_parents.
I urge you to check out these support sites for parents.

Special Child online magazine. Curran was child of the week  Dec. 19-26 1997.

Exceptional Parent (Print magazine) the grandaddy and role model.

Ask Dr. Mom questions about all kinds of parenting issues.
Ask your own questions or read what Dr. Mom has told others.

Health Tips  that have been on past emails from me.

HOME To Dr. Mom
Mail to Dr. Mom
 

Disclaimer: This is not medical advice. I am just repeating what Dr. / authors have said. Think of me as a living book report.

 Updated March 3, 1999