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Families and PI Q&A
Dayna Fladhammer is a former junior high school teacher, the mom of three children with Primary Immune Deficiency, author of My IgG Book Kit with her son, Charlie.Ask Dayna a question
The PI Panel cannot respond to questions about individual medical cases, provide second opinions or make specific recommendations regarding therapy. The information our experts provide is from their own experiences. Always seek the advice of your own physician or other qualified healthcare professional regarding any medical condition. We will do our best to address as many questions as possible. We will not publish the names of any patients, physicians, or therapies.
I know many families who have a pet – including mine! We have a cat. But there may be precautions you have to take. I would encourage you to discuss this with your immunologist. Pets can bring calm and peace to a family. But the type of pet that’s appropriate for you, if any, really depends on the type and severity of PI.
It’s better to have the discussion before you bring a pet into the home to avoid any problems. And it’s important to manage your kids’ expectations. If there is any possibility that this is a trial, it should be presented that way. Borrow a neighbor’s dog or housesit for awhile if you have to, so you’ll have a better idea of how things are going to work out.
We are constantly vigilant about things like hand washing. We don’t drink out of water fountains. We’re also cautious about what foods we eat, avoiding places where food might be left out for a long time. You can find more tips like these in our section on avoiding infections.
However, with the blessing of our immunologist, our kids lead nearly normal lives. We try as much as possible to help them understand the risks, but not live in fear. And we don’t isolate our children from family, friends, and peers. We’re honest with our family and friends about their condition and we’ve learned to trust our core circle of friends to give us the information we need to make a good decision about our health needs.
We know our children will still occasionally get sick. We are constantly in communication with our physicians regarding any signs, symptoms, or changes we may see. We really want our kids to live as full a life as they can.
Let me start by saying congratulations for being an advocate on your son’s behalf. Missing school can be very difficult for a child of any age, including your son. Our oldest missed 40 days of kindergarten, and while that number has steadily decreased, I can remember the frustration of wondering if he would be missing something critical.
I can recommend a number of different resources for you. The first is the newly updated Guide for School Personnel, published by the Immune Deficiency Foundation. It will help you understand your son’s legal rights related to education. I suggest ordering 2 copies: one to keep and one to give to your school as a resource.
Second, I’d suggest reading about the differences between a 504 and an IEP. My favorite website for this type of research is Wrights Law.
The third resource I’d recommend is Ig Living, the magazine devoted to Immune Globulin Therapy. They devoted a section of a past issue to children and school. Check out their website, www.igliving.com, or write to the editor for this back issue.
Finally, there are emotional issues to consider. As a parent and former teacher, I know how hard school absences can be on a child. I would recommend checking out nurse educator Joan Fleitas’ website, Band-Aides and Blackboards, which offers great ideas and resources.
If you have not already plugged into the Immune Deficiency Foundation, I’d suggest doing so. They have conferences every other year, and often this issue is the subject of at least one session.
You can also find information about working with your schools in our parenting section.
Best of luck to you and your son.
It’s been my experience that people with PI do sometimes have to limit activities. But as a very wise man who worked with PI patients for many years is fond of telling me, "If you know one PI patient…you know ONE PI patient." We’re all different! I’ve heard stories of successful Pre-Olympic level gymnasts on IgG treatment for CVID, and I know patients for whom it takes everything they have to get out of bed day after day.
Some patients have restrictions on what they can do – for example, no drinking out of water fountains, no swimming in still water and no gardening – and others have no restrictions at all. These are all things that should be discussed with the patient’s immunologist.
In our family, we travel, explore, go to school, and just generally live the life IgG treatment has allowed us to have. We are also careful about taking time to rest, to have days where we stay in our pajamas and relax, and limit activities when the kids are "on the verge" of getting sick, or getting over being sick. In addition, we try to plan big activities right after infusion time, and fewer activities when they are needing treatment. Finally, our kids do stick to some restrictions while out and about, and have been heavily trained on hygiene, hand washing, and being cautious about what goes in their mouths and who they are around.
Trust me, you are not alone in feeling overwhelmed; in fact, I think that’s a perfect description for what I once felt. I’ve learned over time a few things that I’ve found to be helpful in reducing my stress level.
Know Your Limits! The truth of the matter is, I’d be thrilled if my house was always immaculate, if my kids each played an instrument and a sport, had play dates every day, and if we could visit some place educational every weekend. In actuality, that’s not realistic for us.
I’m okay with not being perfect, as long as my children know their health is our priority. Oftentimes, we are our own worst enemies, so I’ve learned to cut myself some slack.
Cultivate A Support System and Use It. There was once a time when I needed a lot of help, but wasn’t so good at asking for it. I had a lot of people who wanted to help, but didn’t know what I needed. Over time, I’ve realized that the best thing I can do is be honest with my needs, and to know who I can rely on and what they are capable of.
Accept Your Feelings and Talk About Them. I used to feel guilty for my feelings. I felt that I wasn’t a good caregiver if I resented having to do something, and if I had a fleeting thought of resentment or helplessness, I felt so awful. What kind of mother resented that her kids need extra attention because they are chronically ill? I’ve learned that it’s the honest kind of mother who feels that way.
Everyone has moments of weakness, moments where we are overwhelmed, and nothing is worse than spending months dealing with feeling bad for feelings we can’t help. By far, the most empowering thing I’ve done is connecting with other people who share the struggles our family does. Nothing, and I mean, nothing makes me feel better then bouncing ideas off my friends who also have children with PI.
Care For Yourself. Caregiver burnout is very real, especially when you are caring for multiple people with needs. Don’t forget to take time to refresh and renew your own soul. It can be hard sometimes to remember that your health, both physical and emotional is as important as those you are caring for. As one of our pediatricians is so fond of saying, “If you go down, the whole ship goes down with you.”
I try to think of caring for myself this way: it’s a message I send to my kids. Taking care of oneself is as important as caring for others. In the end, I think the most important thing I can say to you, is YOU ARE NOT ALONE. Feeling overwhelmed is not at all unusual given this disease, and you CAN do this!
We like to travel in our family. Our children have traveled to 10 states and love to get out and do the things that wouldn't be possible without IVIG. However, there are some precautions we take that I think have made our travel experiences, including a 7-week stay out of state, much easier
Planning a trip
We always involve our physicians while we are planning and run new ideas past them to get their thoughts based on our current health. They often have ideas or recommendations we have not thought of.
Here are the 5 things we do for every trip:
- Schedule infusions for just before we leave if at all possible.
- Carry a letter from the doctor with the kids’ diagnosis and common concerns. This is helpful as we go through security at airports or in case of an emergency.
- Bring along a list of all information we might need: doctors names, pharmacy name and phone number, list of current medications, and extra copies of our insurance card.
- For longer trips, we arrange for any necessary infusions done away from home with our current immunologist and with an immunologist willing to treat us when we travel. In addition, we verify that our IgG therapy will be available wherever we infuse.
- Finally, we bring all of our necessary medical items with us, and have them readily available. That means if traveling by plane, they are always in our carry-on bags, and when driving, they’re the last items to be packed so they’re easy to find.
While we know some families rely heavily on masks when they travel, we have only used masks for travel once or twice, both times were when we were flying during particularly bad flu seasons. Whether to use masks is a discussion every family should have with their own doctor to see what they recommend. Frequent hand washing is always a good idea, traveling or not!
Great question! I’d like to answer the question about smoking and its effects on your nephew, and also address the issue of talking with your sister-in-law.
Certainly, it is well known that second-hand smoke is dangerous to any person, regardless of immune system status. According to the American Academy of Otolaryngology - Head and Neck Surgery (AAOHNS), second-hand smoke (commonly called ETS – Environmental Tobacco Smoke)“decreases lung efficiency and impairs lung function”in children who are exposed to it. ETS can also increase the frequency and severity of asthma, sinus infections, chronic respiratory problems, colds, sore throats, and ear infections, according to AAOHNS.
I would suggest discussing this with your sister-in-law in the least confrontational way possible. You might consider involving another family member she trusts and have them discuss the situation with her, if your relationship with her is at all strained. If you share a pediatrician, they are often willing to step in and help with such situations.
Very often, as parents of Immune Deficient Children, we are subjected to other people’s judgments of how we handle our children’s illness. Frequently parents of PI kids are made to feel as if they are either overreacting, or somehow causing their children’s illness, especially in the early stages of the diagnosis process. That can leave a parent defensive and guarded as you deal with the emotional impact a life-changing disease has on your family. I would strongly suggest that the best way to approach this is in the least confrontational manner. It might even help to offer assistance, including resources or tools to help stop smoking.
If your sister-in-law is unable to cease smoking, perhaps you can work with her to limit the amount of second-hand smoke your nephew is exposed to. A plan to limit his exposure might include only smoking outside, and never in the car with the children present. Good luck!
Thank you so much for another wonderful question! Let me start by answering the first part of your question.
"Is it possible for him to have this at 7 years old?”
Yes! PI does not discriminate; it affects both children and adults of both sexes! It is possible for this to have begun being a problem at 7, and it is also possible that he could have been living with this for years without being diagnosed.
According to an Immune Deficiency Foundation Survey of Patients, the average time from the onset of symptoms to diagnosis in the United States is 9.2 years. So, on average, it takes 9.2 years for the doctors to put all the signs, symptoms, and concerns together and find the root cause for many patients. Of course, an average is just that – an average. Some patients, like my own children, are diagnosed much more quickly, but some wait 10 - 20 years to get a clear answer on what is causing their frequent severe infections. It is entirely possible that your son could be 7, and not yet diagnosed!
As for your son, my first piece of advice to any parent is always“Trust your instincts!”If you feel like something more is at play, listen to that feeling and advocate for him!
If you decide you want to have your son tested, I would recommend you find your state on the expert locator portion of the Jeffrey Modell Foundation website and make an appointment to see a clinical immunologist who takes your insurance. Unfortunately, not every state has clinical immunologists, and in some cases it may require lengthy travel.
If you are located in a state without an immunologist, and you cannot travel, and your pediatrician does not have access to an immunologist to consult with, there is a program available through the Immune Deficiency Foundation. It’s called the Consulting Immunologist Program. It is available for physician-to-physician conversations regarding proper testing for patients in those states where there are little or no immunological resources.
As in the previous question, I want to reiterate, many parents of immune deficient children were once told they were overreacting or that there was some other cause of their children’s frequent infections. You are your son’s best advocate! Please follow up with us here at the PI Panel, and let us know how it goes. If your son is diagnosed, I would love to point you in the direction of some of the amazing resources available! Best of luck to your family!
Support and education for Primary Immunodeficiency Diseases is growing by leaps and bounds! There are a number of different places to turn, including:
- The Jeffrey Modell Foundation (JMF)
- The Immune Deficiency Foundation (IDF)
- Michigan Immune Deficiency Foundation
- International Patient Organization for Primary Immunodeficiency (IPOPI)
- SCIDS Foundation
There are also internet support groups, web chat groups and internet chat boards. IDF, the Modell Foundation, and IPOPI all have their own web boards. However, the most active ones I’ve found are not associated with any organization. They are founded by patients themselves. Look on Yahoo! groups under Primary Immunodeficiency and Primary Immune Deficiency Disease.
Finally, on the education front, welcome to the information age! There is more information out there then any one person could possibly digest. On this website, you can order:
- A Look Inside the Immune System – A great portable way to learn about the immune system, or teach others about it.
- My IgG Book Kit – A book that lets kids see another child getting an infusion, and a kit to help them make their own books.
The Immune Deficiency Foundation has come out with some great publications in the past few years. Some to consider ordering are:
- The Patient and Family Handbook – Considered the“Bible”of the immune community, this publication has simple explanations for very complex issues such as explaining the major immune disorders and treatment options.
- A Guide For School Personnel – Written in response to the numerous issues parents have encountered within the school system, this book provides an overview of immune diseases, and explains possible complications in the school setting. Further, it explains for parents the basic legal rights concerning education including 504’s and IEP’s.
- Clinical Care Guidelines – This publication is especially helpful if you’re one of the many patients seeing a physician who has treated very few PI patients.
- How To Keep An Infusion Log – One of the most important things we as consumers of IVIG can do is maintain an infusion log. It’s important to know the brand name, dose and lot number of every infusion your child gets. This publication can help you understand how to do this, and why it’s important.
The Modell Foundation offers a few publications, including a poster and some information for the school nurse as well. Consider downloading, or ordering the three posters offered by JMF on their resource site www.info4pi.org:
- 10 Warning Signs of a Primary Immune Deficiency Disease
- The Steps to Immune System Testing
- The Immune System Overview
A suggestion – when you order publications free of charge, order an extra copy in case you run across someone else who might need the information, such as a teacher or an extended family member.
I think the two main things we’re cautious about are food and activity level.
Like many families, we’re invited to do more things and go more places during the holidays. As tempting as it is to accept every offer and do so many fun things, we are very mindful of the kids’ activity levels. For us, too much activity leads to exhaustion which can lead to illness. We’ve made it a point to do things, to get out and live and enjoy the benefits IgG infusions afforded us. At the same time, there is a balance that we try to keep, especially during the holidays. Overdoing it will lead us back to the place we started. So we pick and choose carefully what we allow the kids to do, and we do not hesitate to back out, or change plans, if someone is sick.
In addition, we’re fairly cautious about the food the kids eat during the holiday season. It’s not so much how many sweets or the amount of foods, but rather using caution with potlucks and food served at parties. Often meals are served buffet style at holiday parties. It worries me that food has been sitting out for long periods of time collecting bacteria. So sometimes we’ll eat before we attend, or we’ll bring our own food for the kids. Just about everyone knows about the kids’ illness, so this has never been a problem.
A great question. Getting in touch with other families can be beneficial for both parents and children. First, register with the Immune Deficiency Foundation (IDF). They have a volunteer peer support network. Ask to be connected to a volunteer in your area. Registering with the IDF will also help you get on the mailing list for events in your area and large national events. Then the big step is – attend the events and no matter how overwhelming it is, TALK! Connect yourself to others!
Secondly, don’t rule out your child (or children’s) medical team. Let it be known to your immunologist, pediatrician or infusion nurse that you would like to be connected with others and that you’re willing to have your name and number be given out to other families. Be friendly with the staff and other patients. We’ve met four families at our infusion clinic who live in our city.
Third, consider joining an internet support group. There is an active parenting forum on YAHOO! Many families end up being closer than you think. Sometimes even sharing your doctor.
Finally, be open with others about your child’s condition. You never know where you might find other patients – we’ve met them at parks and in our schools.