Posted by Colleen on April 20, 2004, 1:58 pm April 4, 2004, was the 1 year GSH anniversary for my 11 year old daughter, Danielle. We, like many other families, have experienced the amazing transformation from sick child to healthy child whose body is now able to fight off illnesses on its own. This may all sound repetitive to those of you who have read Danielle's story on the old board but for anyone new who is considering GSH, maybe this may help convince you to give it a try. On 1/1/03 Danielle came off a 4-week IV stint and the word "port" was mentioned for the first time. The need for an IV was increasing to about every 5 - 6 months with the lines having to be put in at the hospital under ultrasound/dye guidance. She was sick again a few weeks later, treated with oral antibiotics and then sick again middle of 2/03 and more oral a/b's were given. She was hanging in there when we saw the Woman's Day article 3/03. I called and faxed the article to her center immediately and was told "do not start anything until they had more info". This was the same response every week for the next month. But over that month we had done our own research and had been in contact with Valerie and Dr. Bishop with our many questions. The clinic refused to contact either of them as per my request I will say that we did not notice any immediate improvements, but there was no worsening of her condition so we kept going keeping a careful journal. About 3 months into the GSH around 7/03 we started backing off of her CF meds. First her oral antibiotics went, then the inhaled antibiotics and then the pulmozyme. We went slowly and it took about 2 months. Still there was no worsening and no real amazing transformation. Danielle does suffer the digestive symptoms from CF with so we continued her enzymes, although we did reduce the dose slightly. Side Note: Dani did have a weight issue until she took part in a nutrition study for 2 years out of Children's Hospital Of Philadelphia. We learned how to increase her calorie intake over the course of 7 weeks from 1200 to 2300 a day. She gained almost 8 lbs both years and has continued to have a healthy weight since. (She is 53 3/4 inches tall and weighs 71 lbs). Still we continued calling the clinic checking for any update to their position on GSH and were always given the standard "no" answer. They even mailed us a copy of the CFF material the Foundation was sent to all the centers with the reasons why they were not giving the green light along with the official "answers" to questions the By 9/03, 5 1/2 months after starting, I made an appointment for a routine visit with the clinic. We went early to get her X-rays and PFTs done. The PFT technician was blown away by the results and showed us her prior test results. All of her numbers were greatly improved. As an example her FEV1 (L) went from 88% predicted to 98%. We were excited but nervous to meet with her Dr. knowing that we were still being told not to start but did without their approval. But the doctor was not happy to listen to what we were doing and I was bawled out, in front of my daughter, during the pre-exam phase of the appt when we go over how things are going and what meds shes taking, or in her case--not taking. After heated conversation, the Dr. finally looked at the PFT results, X-rays and then listened to her lungs. Then she lightened up and said that she sounded great and couldnt hear anything in her usual problem spot. She wrote clear across the picture of the lungs in her chart. (Something we had never Danielle had her second sinus surgery on 10/03 and saw her ENT 2/04 and needs another surgery which she will have 6/4/04. We are now using the mask attachment on one of the 3 neb treatments per day in hopes the Glutathione will do for her sinuses what it has done for her lungs. In the beginning of March 2004 she had another PFT (with a new pulmo office) and again all numbers have gone up. FEV1 (L) went from 98% predicted to 107 %!!!!!!!!! The new doc was flabbergasted. Danielle has not been illness free. She's had strep-throat, an ear infection, sinus infections and colds but has been able to recover with the help of some oral antibiotics prescribed by her pediatrician, who is now amazed by how well she is doing. It has been almost 16 months without an IV. It was not an easy decision to start especially without the support of some very close family members and no treating doctor willing to help. But we worked through it and have developed a good support system (which includes the best school nurse in the world). Any minor trip to the pediatrician was welcomed just to sneak in a listen to her lungs. Spider bite, flu shot, strange spot on her cheek, yearly check-up all came up with clear lungs. Danielle is a great kid with a wonderful spirit. She plays the violin, sings in the chorus, just got her purple belt in karate and has been chosen for all honors classes when she starts Junior High in September. She has a bright future and wants everyone to give Glutathione a try. Just recently a "close" family member warned me to be careful since we are withholding "proper" treatment, I could be arrested! So if you are reading this and are trying to decide whether to start using GSH, know that all of us "GSHers" have been there. If you have questions, please e-mail Valerie or Dr. Bishop. Theyll be happy to help. Or if I can help in anyway, contact me at GSH4CF@msn.com. Have a happy and healthy day!
on April 20, 2004, 5:47 pm
User logged in as: Colleen
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and Dr. Bishops. Our pediatrician refused to help and deferred to the clinic. We ordered the meds, worked out the dosage and started the protocol as set out by Dr. Bishop on 4/4/03.
families may have.
seen before). Even though the doc was extremely pleased with her condition, she would not give any credit to the GSH. She even went so far as to say that maybe Danielle was just having a good year and that maybe because Danielle wanted the GSH to work, it was. But she did sign off on the discharge instructions with "KEEP UP THE GOOD WORK".
Colleen
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