1. How does it feel to be the parent of your child?
As a parent, I feel horrible for Keeley. She has been diagnosed with Tuberculosis, and I wish she did not have to go through this. We have been told that Tuberculosis is passes from person to person via droplets from coughing, sneezing, or talking, which makes this harder on us. We feel like we have not provided Keeley with the best situations or even the most sanitary environments. We do not fit the normal risk factors (being homeless, living in crowded situations, or having a low socioeconomic status), but we do spend time feeding the homeless as a family. It is hard to be a parent who has to make choices about the environments introduced to their family. We are also so fortunate to have caught the disease so early. From what we know, it has not spread to her lymph nodes, genitourinary tract, bones, or any other part of her body. Even though the testing and treatment has taken a toll on our family, we are still a unit, working together to help Keeley get better.
2. How is your child developmentally the same or different from other children at the various ages?
We are so thankful that Keeley is living a normal life. She will develop at the same rate as children her age. Tuberculosis is now treatable by medication, which normally lasts for 9 to 12 months. After the first 2 weeks she was not contagious, and life went back to normal for her. We do have to keep a close eye on her for new symptoms that may come about due to the medication, but she is able to do everything her friends and do. We have been recording any nausea, vomiting, loss of appetite, fevers, and dark urine, as these are common side effects of the medicine she is taking. Those side effects are common and not a concern; however, blurred vision, colorblindness, tingling toes or fingers, bleeding, dizziness, and rashes have been our main concern. These are side effects that can affect Keeley developmentally, but we have not come across them.
3. What professionals/agencies do you deal with? What services are available to you and your child?
Keeley’s old pediatrician recommended that we have her tested using the Mantoux skin test, which was done at the local health clinic. After tests came back positive for TB, we were referred to Dr. John William, who is a doctor in Fullerton who specializes in Tuberculosis, Internal Medicine, and Cardiovascular disease. We are lucky to have such a great doctor in town because otherwise, we would have been recommended to the Tuberculosis Treatment Clinic in Santa Rosa! Dr. John William is a fabulous doctor that is affiliated with Placentia Linda Hospital and St. Jude Medical Center. Keeley has gone into St. Jude for chest x-rays, QuantiFERON-TB Gold tests (blood tests), as well as Sputum testing (bacteria culture).
I currently attend a support group at the Child’s Hospital of Orange County (CHOC), which is great for me to share my feelings, meet other families in similar situations, as well as attend presentations about important topics (www.choc.org). We have also been able to be an active part in the community with Keeley through CHOC. They have great days planned for children, as well as wonderful fundraising events.
4. How did you find out about the above services?
We were able to receive a referral from Keeley’s old pediatrician, which lead us down many roads. I stumbled across CHOC on the internet, which has been such a blessing! I could not ask for such great support, and I feel like Keeley has learned a lot about her disease through them. We have done a lot of research online in order to make sure Keeley is getting what she deserves. We have also talked with the Mayo Health Clinic (located in Arizona, and have a wonderful website) and they were able to help us with the services, as well as answer a lot of our questions.
5. What financial burden, if any, are you experiencing?
We were very worried when we first found out about Keeley. Between my husband and I, we do not have very much extra money and we knew this would be a hardship. Luckily, with help from Dr. John William, we do not have to travel very far for testing or for medication. This has been very helpful because the treatment is challenging enough. When it comes to the medication Keeley has to take and the normal patient charges received from testing and doctor visits, our insurance covers a lot of the charges. I would estimate that we are personally in charge of $900 to $1,500 total. We are also very fortunate to have such a great community to support us. We are blessed to have friends, family, and church members over all the time to help with encouragement, treatments, and financial support.
6. What other information do you want to share?
I would like to share that Tuberculosis is not what is used to be. We have such an amazing diagnosis and treatment team in the United States, that death is not normally the outcome. Many people are afraid when they find out that Keeley has Tuberculosis, and I want them to know that once treated, it is not a contagious disease. Some advice to other families dealing with Tuberculosis: maintain your normal activities and hobbies, stay connected with friends and family, have the adults testing in your family every four years- they are the likely ones to spread the disease to the children, and continue the prescriptions given until told to stop, even if symptoms get better. A final note, if you have Tuberculosis, stay home for the first two weeks of treatment, open windows to let fresh air in, and cover your mouth when coughing.
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