When my youngest son, Andrew, was in kindergarten, he was diagnosed with pneumonia. The strand of pneumonia was resistant to most antibiotics and we consequently fought it both in and out of the hospital for seven weeks.
After finally getting it under control, the long term effects of this illness still linger on.
Because of the severity of Andrew’s illness, he has scar tissue in his lungs and he also suffers from asthma. For the most part, we have been able to keep the asthma controlled, but in the past several weeks he has suffered multiple attacks and we are not sure what’s triggering them.
He is also incredibly prone to both bronchitis and pneumonia which has left him missing many weeks of school, ever since kindergarten. To date, Andrew has already missed (6) days of school since the beginning of this school year due to a lung infection and fever.
Of course we count our blessings that we are not dealing with a more severe condition but no mother wants to see their child chronically ill and unable to participate in the things they love.
And while all the doctors keep telling me they can’t diagnose a specific condition with my son, the constant pain in his chest, high fevers, bronchial cough, asthma attacks, constant nausea and general achiness is telling me otherwise – this has been going on for almost five years.
We have received some great news over the past few days; he tested negative for Cystic Fibrosis – his liver, kidneys, gallbladder and spleen are in the clear – his allergy testing came back negative – and we are still waiting for the results from the blood workup on his immune system.
The bronchoscope did show scar tissue and mucus build up, but not to the degree initially anticipated.
So now what?
I’m finding the positive through all these negative results – but I still have no answers.
We all wear our many hats of motherhood but my primary hat today is patient advocate – working diligently with my son’s doctors to find the best possible solution to this problem.
Many times as parents we leave it to the experts – Certainly they have all the answers – Clearly they know what’s best…right?
The primary responsibility of my child’s healthcare is mine and in the end I will have to stay diligent in finding the solution to his healthcare needs.
So in an effort to step up in a big way as patient advocate, I take this opportunity to share a few tips I consistently implement while dealing with the health and wellness of my children:
Talk to your doctor – ask questions – challenge her. Your doctor is there to work for you and you have every right to make sure you are getting the information you need to make an informed decision on the healthcare of your child. There is never an excuse to be rushed out of a room and to be left uninformed. Ask questions; why – when – how – what else? Know there is never a time for your questions to be dismissed! When your doctor is with you, your child should be their only priority. If you are not getting the attention and answers you are looking for, I encourage you to find a new doctor.
Let your doctor talk to your child – When your child is old enough to communicate their feelings and symptoms, it is extremely important to allow them to communicate with their doctor. If a doctor asks me how my child is feeling I immediately turn the question over to my child – he is old enough and capable of speaking for himself and will be able to describe what he is feeling in a way that is authentic and real. It is also a great way for your child to begin to establish his own relationship with his caregiver – an important life skill they can utilize forever.
Trust your instinct – You know your child better than anyone else, and it doesn’t take a medical degree to tap into your own maternal instinct. You know when your child is not acting like himself and when things seem off. Don’t disregard this knowledge – it is a knowledge you can’t find in a book. No matter what a doctor or a diagnosis can tell you, no one will ever know your child better than you do.
Look for a second opinion – A second opinion is not only to solidify an answer, but it is also great for a fresh perspective and a new outlook on a condition. Sometimes you can look at something too closely and you can miss the obvious. Don’t feel bad about asking for a second opinion, my doctor actually recommends it and welcomes other ideas and support from his colleagues.
Educate yourself – Educate yourself on the symptoms, diagnosis, treatments, medications, etc. And although I don’t recommend signing up for a subscription to Web MD or self diagnosing (we’ve all been there), it is really important to fully understand the condition of your child and to do supportive research. Know what a test entails, possible side effects of a medication, alternative treatment options. The more informed you are, the better prepared you will be to make an educated decision for your child.
Find a doctor that’s right for you – I have fired doctors. I have written online reviews. I interviewed (8) pediatricians prior to choosing the practice I am with today. Not every doctor is a right fit for you and your child. Take the time to find someone you are comfortable with. The partnership between a doctor and a patient is far too important to compromise.
Don’t rule out alternative methods – I am certified in Reiki II and practice many non-traditional healing modalities with my children. Although I use Western medicine in many circumstances, I have also found great success in alternative methods (cranial sacral, acupuncture, energy work, herbal medicine, essential oils, EFT), as well. If you can’t find the answers you are looking for, don’t be afraid to look at a completely different approach to your healthcare – it may not be as crazy or “out there” as you think.
Take ownership – The bottom line is that the primary responsibility for your child’s health comes down to you. Step up and do what you need to do to advocate for your child’s health – at the end of the day, you are the only advocate he has.
As I sit here waiting to hear back from our pulmonologist, I have a list of questions to ask and a plan in mind. It is now my responsibility to work with my doctors to develop the best health care plan possible for my son.
It is a team effort without a doubt – but let us all be clear – there is only one manager on this team.
Many Continued Blessings,
PS. What am I missing here? Do you have any other strategies for managing your child’s health care?