I am a mother of two children, Timothy, 17 years old, and our precious Darla, who will be 12 on July 22, 1999. I gave up my career in purchasing as Senior Buyer for a Silicon Valley computer company when Darla was born to become a full time mom. I have since pursued a Holistic Health approach to life after Darla's diagnosis in 1992 and have become certified in Reflexology, Reiki, Swedish Massage, and Polarity which has been helpful in dealing with Darla's physical complaints. I also, when my daughter's health permits, work two hours a day for a local school district.
My Daughter, Darla
8 June 1999
My daughter Darla is 11 years old and was diagnosed with an inoperable AVM (large) at the age of six. She was going to her pediatrician for flu-like symptoms when her legs suddenly refused to stand as we were getting out of the car. I carried her into the office and she began screaming of head pain. Her pediatrician was baffled and gave her Tylenol for fever (103) and sent us to the county hospital. She was presenting with total right sided weakness by this time.
By the time we got in to see the neurologist her symptoms were gone. They sent us home without even doing a CT scan and told me it would be 2 months before an MRI could be scheduled for her. By the grace of God and my family members we were accepted at Lucille Salter Packard Children's Hospital at Stanford and Darla was finally diagnosed with a double whammy, an inoperable, large AVM and 5 aneurysms, 3 of which were removed shortly thereafter by our own special angel Doctor Gary Stienberg, the head of Neurosurgery at Stanford. What has followed is a long and arduous journey to live with this disabling condition.
Darla suffers constant migraines, tremors that are treated with Tegretol and persistent bouts of hospitalizations too numerous to count. When she was 8 years old she was flown to Loma Linda Children's Hospital in San Bernadino for proton beam radiation treatments, in an attempt to shrink the AVM and create scar tissue that would divert blood flow and lessen the severity of what they term "episodes of right side paralysis" During one of these episodes she suffered a bleed and has residual weakness in her limbs. Her hair fell out in clumps from the radiation. When Darla was 10 she developed hydrocephalus and had a 2nd brain surgery to implant a shunt.
Most recently (1-27-99) Darla WALKED into Stanford for an angiogram (I have lost count on how many of these she has endured) had a reaction to the dye and presented with right sided paralysis in the recovery room. She spiked a fever of 103 (fever can be fatal, bringing on a stroke or bleed) for 4 days while the doctor's grew a culture and determined she had a urinary tract infection from the catheter they used on her during the angiogram procedure. During this hospitalization (6 weeks) she suffered her first seizures ( 1 lasted 40 minutes another 20 minutes ) and she now takes antiseizure medication called Valproic Acid.
We are constantly in physical therapy to try and recoup from these debilitating "episodes" Our last visit to Doctor Stienberg was May of this year and he recommended more radiation. I have declined this treatment because now it becomes a quality of life issue for my daughter, who through it all remains a loving, caring child who just wants to run and play with the other kids, something she physically cannot do. I have put it in God's loving hands now.
Update 29 Jul 2001
Darla has just turned 14 and we have had over 2 years without a hospitalization. Unfortunately,these 2 years have not been without problems. Most recently Darla has been experiencing numbness in her "good" arm (her left side) which seems to coincide with her menstrual cycles. This symptom is new and frightening for both of us.
In June we had an MRI at Stanford and again discussed proton beam radiation with her Doctors. I don't know where my mind has been during our numerous doctor's appointments over the years but I never knew that this AVM involved both sides of her brain. Because she has right sided weakness from previous bleeds I thought her AVM only involved her left side of the brain. Apparently this is not the case and the AVM involves both sides and the ganglia. To quote Doctor Stienberg, "the last thing we want is for her to wind up with two weak sides".
The first proton treatment when she was 8 did stop her episodes of blood robbing and right sided paralysis for the most part. However, at exactly the 3 year mark after treatment her movements and thinking slowed down tremendously. She was not the same child. She has a lot of trouble with memory and is now a full special Ed student. I need to hear from anyone who has had more then 1 proton beam treatment and any significant side effects as a result.
The other problem I am wrestling with is that she will have to have another angiogram before the proton treatment and the last one nearly killed her. We are still dealing with the deficits today. If Darla had her way we would not pursue any more treatment but I do not feel she is mentally capable of making this decision on her own. I have this on prayer and I ask each of you to hold us in prayer also.
We are keeping a log of all the times that this numbness occurs and will return to Stanford in 2 1/2 months to discuss how to proceed.
This site has been a source of comfort and compassion for us and I thank you all for being here for us to lean on. God bless you!
Update 25 Aug 2001
We have recently had an unexpected turn of events, Darla has now been diagnosed with panic attacks and has been taking a tranquilizer called Xanex 3 times a day. Apparently being 14 and starting High School in a matter of days, combined with her existing health issues has been a source of major anxiety to Darla. Another curious fact I found out was that she has been hyperventilating, which causes "numbness in the extremities". In our previous update I mentioned that she was experiencing numbness in her good arm and that we immediately went for testing at Stanford. Breathing into a brown paper bag makes the numbness go away (a common treatmet for someone who is hyperventilating). We are in the process of a psychiatric evaluation and placement with a counselor.
In Darla's mind the numbness meant her AVM was getting worse and she "thought she was dying". She has kept this to herself for God knows how long, because if she told Mom, "she would have to go back to the hospital." What a horrible burden to carry and keep to yourself when you are only 14.
We still need to be seen at Stanford next month and the only way to really rule out the activity being caused by her AVM is to have the dreaded angiogram. Is there anyone out there who suffers from these panic attacks in relation to chronic illness that can help shed some light for me? Your help is,as always,a great source of comfort and knowledge for us. God Bless you all!
Update: 12 Apr 2004
I haven't updated in such a long time! First let me say that we haven't had a hospitalization in 4 years now. It seems as long as Darla doesn't run a fever there are no episodes of right sided paralysis, however she is very affected by warm weather which we have known for some time. Her deficits and general health problems (headache,fatique) are made much worse by heat.
We had a Neuro-psyche evaluation done over the summer and were given the news that Darla is mildly retarded. We had no idea of the extent of her deficits until then. One of her problem areas is that "she looks more competant then she is" which was a real eye opener for me. I know she will always need someone to care for her.
The day I got that news, July 11th, 2003 was the day I quit smoking after 32 years. I have come to terms with a lot of reality, I have learned to advocate for my daughter in a world that says there are rights for the disabled, and then routinely deny those rights to you. Specifically I am speaking of the School District (Campbell) Darla has a 1 to 1 aide at school with her at all times who I had to fight tooth and nail for. I have submitted doctor notes until I am blue in the face, endured endless IEP meetings where I have sat across the table from pure evil in the form of "control". They have no conscience and are only concerned with saving the District money.
I have requested 2 window air conditioners for 2 years now for my daughter's special education class. The District is air conditioned, what would make these people think that a classroom full of disabled kids don't deserve the same comfortable enviornment to work to their potential in is beyond me! ( I have learned soo much about advocacy, state law, how to file complaints and I would be more then happy to help another Parent deal with these issues. )
Darla sees a psychiatrist to help her understand and deal with her panic attacks and PTSD as well as taking medication. I am now in the middle of filing for a due process hearing with the state because this district has basically told me to go fly a kite and denied my child her "free and appropriate education". I will keep her home on days the weather goes above 85 degrees and they will provide 1 hour a day of a teacher as opposed to 5-1/2 hours a day of a 1 to 1 aide if she were in class. There is a God, and this will all be sorted out in the end.
I have also emailed several editors with our story, so once again, after doing all the legwork, I end with leaving this in God's loving hands.
Update: 23 June 2005
For once, this is a happy update! I am proud to announce that Darla has recieved her cerificate of completion from High School, a major feat of achievement for her. Also for parents dealing with school districts who refuse to accomodate your child's needs, we are a success story (albeit the air conditioning didn't get put in the classroom until March of this year, making it a grand total of fighting for 3 years and getting an attorney to enforce the "free and appropriate education" promised in the law to every child in special education).
Because Darla cannot tolerate the hot weather she was not able to participate in commencement with the class of 2005. We have a large restaurant party planned this weekend to celebrate and her teacher will present her "diploma" at that time, in front of family and friends.
Darla is scheduled to attend a post secondary school (with central air conditioning) in the fall for 4 more years, focusing on life skills and workabilities programs. We are very excited for her and just wanted the family to know, there is life that happens, even living with an AVM! God blessed us with special challenges and it is up to each person to rise to that challenge,dont give up and dont lose hope or faith!
Discussion, comments, or questions: Cindy Long
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