Do you hear that often? How do you respond to constant complaints or sift through the not so serious?
Many parents wonder if they are doing enough for their child with common complaints about pain or sickness. Add having a child (teen or adult) with a disability who doesn’t see, hear, or experience the world the same as us (if we do not have the same disability). Add to that, a disability that has 428 co-occurring conditions. No wonder we can be confused.
I wrote this post last month, then deleted it. And posted instead in a private group. But then thought followers of the blog may be interested. As I’ve said before, I’ve not been writing much as I’m still trying to find a balance between sharing our journey and respecting our privacy. One thing that comes with more people knowing about the blog, is more people know about us, and things are not so anonymous anymore. I wrote about this in To Share or Not to Share. However, I decided I could still share (she tells me I can share anything I think will help) without all the details.
Here is what prompted this post and our four step approach to acknowledging and recognizing pain, discomfort, sickness and physical health (from a non-medical perspective).
The maiden is a young adult now. She regularly has a complaint of some sort of sickness or pain or worry. I understand with Fetal Alcohol Spectrum Disorder there are definite physical conditions (as noted above). Research in 2017 revealed individuals with FASD had health conditions at a rate of two to 100x the general population. But how can you tell if it is major or minor? This is an area I still struggle with.
When the maiden was younger we often used a “placebo” if it didn’t appear to be serious (and by that I mean a tiny bump or cut was usually eased with a dab of Polysporin and a Band-Aid, or scrambled eggs or flat ginger ale soothed an upset tummy). Now she is older it isn’t as easy. I am not a person that goes to the doctor each time I have a slight pain. If something is continual, or unusual, obviously I go. And we go for annual check ups and bloodwork. But I don’t book an appointment for everything. However, it is important for me not to compare her pain experiences to mine. I do not have FASD. I need to acknowledge her concerns but teach her how to look after her own health.
It seems lately she has had more concerns than typical. It is a delicate balance to respect and respond with empathy and acknowledge every ailment, but I also worry could I be missing something? So I developed my own four step approach to addressing common complaints of physcial health, pains or discomfort.
Be a Detective
First I try to think of what she has been doing. Who has she been talking to? (She tends to come up with ailments when someone else is sick or has a complaint or something physical). Did she eat something? Did she fall or trip? Did she bump something? Carry something heavy? Forget her allergy pill? Sleep disturbed? Is she worried about something? If I can pinpoint it, then I ask her a couple questions to see if she can find a possible source herself and then we can come up with a remedy or solution. It might be a Tylenol. Something for indigestion. A band-aid. Ice pack. Heat wrap. Hot water bottle. Temperature check. Cup of tea. Snuggle under a blanket and watch a movie. Back rub. A cuddle. Sometimes she just needs reassurance and connection.
Track and Monitor
What about when the complaints seem daily? I started last year keeping a list to track all her ailments to monitor for patterns. It’s an exhaustive and varied list. But I find it has helped me to be aware if it is something that repeats and therefore could be a concern or warrant a medical check-up. For instance if she complains of a headache one or two days it might not be anything. But if over a month I notice a pattern of them weekly, or they occur at the same time, then there may be something more.
This last month there have been many more than usual. Not sure if it’s general anxiety, feeling disconnected, worry over COVID, pandemic fatigue or actual physical ailments … a bit of all or one for some I’m sure. The majority did not last or repeat, but a few I was not too sure about. I decided to give a list to our Health Care Practitioner so she could examine it and determine if we needed follow up.
We have had the same Nurse Practitioner since we moved to the area – so knows the maiden well. She acknowledges FASD but how informed she is I’m not sure. She is good with her though and open to listening so that helps.
Seek Medical Assistance
It’s important here to note during this time, we also had a trip to the emergency room to check for a broken toe. Xrays revealed no damage. The NP reviewed nine concerns on the list (including continued concern for the toe that was not broken) and we asked for follow-up on two referrals to a specialist we have been asking for, for over a year. Not sure why we are not getting those referrals.
This journey day to day is exhausting for everyone. There are so many things that may be a concern for our kids/teens/adults that typically may not be for us. So much of our time is spent monitoring, reassuring, following up, going to specialists etc. Most times the specialists are not FASD informed.
I am grateful that most of her complaints are not serious, as I know there are serious physical conditions with FASD. I am not downplaying anyone’s experience. I send healing thoughts and vibes to those experiencing pain or ill health. We are “lucky” ours are usually minor or easily addressed …sometimes we also use laughter (with love and respect). See Bubble Wrap Day and FASD however it was interesting to me that post concerned a sore foot as well. Pattern?
I felt good that I asked the NP, and she took the time to listen and address all of the maiden’s current worries and concerns – with either assurance, explanations, a prescription, referral or promise to monitor. The maiden seemed to be satisfied with the call. I think sometimes they need validation from others. And we need the assurance.
I suppose I worry because last year she was diagnosed with severe sleep apnea. I had no idea. She didn’t complain of waking or interrupted sleep. She was always difficult to wake in a morning. I was told that is not unusual for people with FASD. It was her dentist that noted it. And despite a request to our NP for a referral, it was the dentist in the end that made a referral. Her sleep study revealed over 74 incidents in one hour. She now has a CPAP machine. Her incidents are now less than one an hour. But even after six months she is still difficult to get up and has no more energy. Are we missing something else?
I continue to monitor her pain and worries and keep the list of concerns updated. And we await a couple important referrals to investigate areas we feel warrant further investigation or review. And that brings me to step four.
Research and Educate
We can’t possibly know everything. I think we need to strike a balance between knowing what we know, teaching our children what they can do on their own, when they may need to ask for help, and when we need help. If you wonder what might be typical, I found an article, while not specific to FASD, helps with general concerns: Is Your Child Really Sick? There is also an excellent reference site to gather additional information called Solutions for Kids in Pain.
We know individuals with Fetal Alcohol Spectrum Disorder have unique needs and experiences. Even health-wise.
The Canada FASD Research Network states:
FASD is a whole-body disorder and differences in pain sensitivity can be part of FASD. High and low sensitivity to pain is caused by how the body of people with FASD works differently and how they feel. It is important for people with FASD to self-advocate or have a caregiver advocate for them when seeking medical help.
According to research, over half of individuals with FASD report having a high pain tolerance, while approximately 30% report having a low pain tolerance. Their pain system may not be triggered or they can have less pain detection. Mood also affects pain sensitivity. Their body may also be more receptive to chronic pain.
For more information you can watch the CanFASD webinar: Pain as experienced by people with FASD.
These are some of the reasons why I am always questioning myself – am I doing enough? In the CanFASD document: Towards Healthy Outcomes, it is recommended:
To support individuals with FASD in their daily functioning, a multidisciplinary team has been recommended as the gold standard to help support patient’s needs. Team members may include a psychologist, speech, occupational and physical therapists, a family advocate, and a coordinator for case management (Chudley et al., 2005).
If you are like me, you don’t have the “gold standard” available. My go to is always, sleep, nutrition, exercise and environment first … but I wish I had a family advocate and a coordinator for case management when I’m just not sure or wanting more. Most roles I play, along with everything else, like so many of you. So we do what we can, continue to learn and build our team as best as we can.
Our experience is unique to us. Use what works for your family. As I stated at the beginning, this is simply something I’ve learned to help us navigate. I wish there was a manual. But like with everything about FASD, every person is unique. You can monitor FASD pages and groups to get ideas about current research and what others are experiencing but you know your child best. Never be afraid to keep your health care practitioner informed.
Hoping good health for you and yours. If you have any ideas or thoughts, please leave a comment!