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MyStory
Archive 2004 - 5
Q: How did you find out that you had a primary immune deficiency? My son, Takoda, had infection after infection since his birth
in 1996. We had a general practitioner who – although she
diagnosed his infections each time – told me that I was
acting like an over-protective first-time mother (which I am not
– Kody has three older siblings). Q: How often are you (or your child) infused? He is infused at our local children's hospital, DeVos Children's Hospital in Grand Rapids, Michigan. We usually are there from 9 am to 4 pm. Not all that time is [spent] being infused; it usually takes a while to get the IVIG up from the pharmacy. Actual infusion is usually about four hours. We normally watch videos (I don't know what I would do without Disney!). Kody plays with his gameboy or his little action figures. I usually make sure I have a good book with me or bring some crafts with me. Q: Describe your experience with your immunologist? Our first immunologist didn't have a clue what to do with Kody, and even after his osteomyelitis, [the immunologist] insisted that he did not have an immune problem, but that all of his problems were due to second-hand smoke. (Apparently, she didn't hear the part where my husband does not smoke ever in our home – only in his garage!). Then my pediatrician asked a good friend of his – an adult immunologist (the first one was a pediatric allergy/immunologist) – to see Kody. He agreed, and the rest is history! We love our immunologist; he is wonderful with Kody and clearly knows what he is doing, and I am very confident in his care of Kody. [Kody] has been a patient of our current immunologist for almost three years now. Q: Have any organizations or support groups helped you cope with this chronic disease? The Immune Deficiency Foundation (IDF) is the core of all of my information on Kody's diagnosis. They are fabulous. Other groups that give me support are a pediatric primary immune deficiency e-mail support group, through Yahoo! Then – because Kody has more than one diagnosis – I started my own e-mail support group for parents of children with multiple special needs (www.geocities.com/schmidtzoo/SNAK.html). Both groups have offered me invaluable support. I do not have anyone near me with a child with Kody's diagnosis. So e-mail is the only contact I have with parents of children like Kody. My parents are exceptionally supportive, especially in helping me with our older children when Kody is sick. My mom has never missed one IVIG treatment since they started three years ago. She is always there for me. Q: Can you suggest any Web sites where you have found helpful information about primary immune deficiencies and the therapies used to treat them? www.pedpid.com Q: What's the most difficult part about living with a primary immune deficiency (or caring for a child who does)? The most difficult is knowing your child could get very ill at any moment. You can't make plans like sign up to go on a field trip with your children's schools because at the last minute you may not be able to go. You worry when you take your child out in public that someone will be walking around with a contagious condition and your child will pay for it. You spend so much time in the hospital that you know the workers by name. But the worst part is holding your child's hand while he gets his pokes. My son can handle one poke, but with more than that he freaks out. The worst part was last Friday when the first poke didn't work and he had to have a second one; he held my hands so tight my rings made my fingers bleed and I had to listen to him cry that he wished he'd never been born. That is the worst part. Q: What advice would you give a person newly diagnosed with a primary immune deficiency (or the parent of one)? What advice would you give to that person's family? My advice to a newly diagnosed person is to gather all the information they can on their particular diagnosis, pay attention to their gut and act on it (I believe this has saved my son's life on more than one occasion), and get a second or third or fourth opinion if you are not completely satisfied with the level of your care. Ask questions, ask questions, ask questions. As for families, do not be afraid to bring new information that you may have found yourself through immune support groups or through the Immune Deficiency Foundation to your doctor. You are your child's best advocate – you must speak up and speak out! Doctors can be intimidating, but you have to get past that and make sure that you understand everything and that you feel it is best for your child. Most PIs are "hidden" diseases; your child may not look sick to others, they may not understand and try to give advice – like, my personal favorite, if I just gave my son vitamins or herbal immune stimulators he'd be fine. My advice to you is to learn to smile and walk away. My best advice: laugh. Always find the funny in things. If you don't, you'll spend your time crying too much. Q: Describe your experience with your insurance company? Our insurance company has overall been pretty good. Kody has primary insurance through my husband's work, but we also have state insurance for special needs kids through our state Medicaid office. It is not a financial need-based program, and I suggest that you look into your particular states' similar programs. We do not pay any out-of-pocket expenses for any of Kody's particular diagnosis, except for the developmental things – they don't cover that. Q: Is there any "silver lining" to having this condition? I think the silver lining is that my whole family has learned what is really important in life. Our priorities are totally different now. And I have a unique relationship with my son that is so precious to me. Q: What improvements in your IVIG would you like to see from processors of IVIG therapies? Improvements? Well, someday I would love it if my son didn't have to get poked anymore. |
Note:
This interview features a person with a primary immune deficiency.
It was not written by a healthcare professional and is not meant
to replace the expert care of a qualified physician. Please consult
your physician with any questions you might have about your health.
