Parents of children having medical difficulties often ask themselves, “What can I do so my child gets the help that he or she needs?”
Oftentimes we will look to health care providers, doctors or therapists to advocate for our children but no one feels the pain of their children like mom and dad. No one else can advocate for your child the way that you can.
I know how discouraging it can be to know that something is going amiss with your child’s health but no one seems to have the answers. Your child begins to fall through the cracks in the healthcare system and as a parent, you feel utterly hopeless.
I’ve been there myself and it isn’t a particularly pleasant state to be in. I know all too well the feelings that a mom has to swallow down when a specialist either completely blows you off or they admit that there appears to be a problem but they have no idea what the problem is.
This is where I strongly urge you to start being your child’s advocate. Don’t know where to start? That’s okay! I didn’t know where to start either and I honestly am still learning but I can share the things I have learned and hopefully it will be of some help to you!
1. Start a Medical Journal
Buy a thick notebook or a journal to use as a medical journal. When you are ready to start your journal, take the time to label it. You’re going to spend a lot of time in this journal, it’ll be your life line so you may even want to decorate it or purchase something that fits your personal style. I personally feel like doctors took me more seriously when I ditched the pink notebook and bought a nice journal. I looked put together and was able to provide medical history and symptoms quickly and without forgetting anything.
Start your journal with your name and your own medical history. List childhood illnesses, surgeries you’ve had and if you have any health problems. Write down everything you can think of, including current and past health concerns. If you suspect a genetic condition, make sure to list your family history as best you can.
Ideally, after you’ve filled out your information it would be useful to start a new page with as much information as you can about your child’s father as well. Write down as much information about existing medical conditions or medical mysteries in the family.
For parents of adopted children, this may be especially difficult. If you adopted from foster care, be sure to obtain all records that you can from the Department of Social Services. These are things that I’m not very familiar with and would advise you to talk to your lawyer or agency on how best to obtain information that you need.
Moving along, start your child’s section of your medical journal. Start with information about your pregnancy, noting any complications during the pregnancy and the delivery.
Pull out the baby book if you have one and jot down when your child hit their developmental milestones and anything you may think pertains to your child’s current condition.
Note any surgeries and diagnosis you may have already received. Note all medication that your child is taking and any medication that your child is allergic to.
Lastly, follow-up with symptoms that your child currently has. For example, on my list I may have jotted down something like this
Muscle spasms, migraine, bruising, frequent dislocations (and so on)
2. Obtain Medical Records
Gather as many medical records as you can. Talk to your pediatrician and request records. If your child is in therapy, request that your therapist write down pertinent information.
If your child has had any kind of diagnostics and blood tests, be sure to contact the hospital or doctor to obtain a copy. I was able to go to the hospital’s radiology department and request a disc with my daughter’s x-rays on them, all you have to do is show a picture i.d. to pick them up.
Additionally, many hospitals and doctor’s offices now have a patient portal from which you can log in and print off a summary of appointments that you’ve already had. I keep the children’s records in a binder and I carry it with me to appointments.
3. Document everything
Your child has some symptom but it doesn’t happen all the time? Your doctor doesn’t believe you? Take a video of it. Make sure to take a lot of pictures. With my child’s gait, I would take videos and save them in a folder on my phone so I could show her physical therapists.
If you’re a techie, download pain journal apps that track symptoms, pain levels and weather/life changes. This might provide professionals a comprehensive look at what is triggering your child’s symptoms. If you choose to go the techie route, make sure that you still print out some hard copies to give to your medical team. If you have a wireless printer, you can download an app that allows you to print files and pictures from your cellphone. Some of the pain journal apps such as My Pain Journal can also be emailed in pdf format so that you can easily print off your data. In addition, it would be prudent to back up your data to an online storage system or to an SD card so that you do not lose important information.
An ongoing journey
Being your child’s voice and his or her advocate is a lifelong journey. The tips that I’ve shared are beneficial for your own medical healthcare. It need not apply only to your children. This is an ongoing journey and there’s no one way to approach how you choose to document your data, the important thing is that you do.
Once you have a diagnosis, make sure to study as much as you can about what your child has. Especially if your child has a rare condition as you may find yourself educating caregivers and medical professionals that have no experience with the condition that your child has. Present fact based information and resources to your caregivers or medical professionals so that they can better care for your child.
Never stop learning, never stop fighting and never let someone make you feel like you can’t do this. You CAN. This is your child and no one knows him or her better than you.
If you are a mom that is looking for love and support and you have a child with any physical, mental, health-related difficulties feel free to connect with me in my facebook group, Anchored Moms.