What if No Medications Work for Your Child?
This is the difficult predicament that a lot of us are in. It is like our kids’ bodies are stuck in this pain cycle and progress seems impossible. In my experience with Greta and with all the clients I have supported, this is what can help to get you unstuck…
1) Find a pain specialist
2) Go to an inpatient pediatric pain program (some outpatient programs are helpful too)
3) Support your child to slowly increase their function Let me elaborate on each of these... If no medication or treatment seems to work for your child, then it is likely that their baseline pain level is too high to be brought down by regular pain medications. Our pain specialist told us, "It could be that Greta has migraines throughout life but we need to try to bring down this baseline pain that she has all day every day.” I myself have migraines 3-4x/week but I can usually catch them within a couple hours by taking a triptan and ibuprofen. That is because my baseline pain level is 0. I have some days with no pain. So when my pain starts increasing to 3-4-5, it can be brought back down to a 0. (I know these numbers are all very arbitrary but they help when trying to explain an invisible illness). In Greta’s case, if she has a baseline pain level of 6 and then she gets a migraine that brings her up to a 9, triptans can’t do much. Even Propranolol, Botox and Aimovig sometimes can’t do much because her pain already started too high. If you find that your child is in a similar predicament then the following suggestions can be life changing: 1) Find a pain specialist ~ Often when our kids have all day every day pain, it is not just a headache or migraine problem. It is a pain problem. This is why it is worth keeping your neurologist but also working with a doctor who is a pain specialist and has a good reputation. If you feel like you have already done this and aren’t getting very good support, you might need to try a few pain specialists to find the right one. I’ll write a post soon on how to find a good pain specialist. 2) Go to a pediatric pain rehabilitation program ~ I will talk about inpatient programs because that is what I am most familiar with. Many of us in this group consider it a “turning point” when we were able to get our kids to a reputable pediatric pain inpatient rehabilitation program. This is where our kids started to understand how increasing function can turn the volume down on their pain. It is where they gained skills and strategies to effectively manage their pain independently, and where they learned how to stay out of bed all day every day. I highly recommend the Cleveland Clinic program. A lot of families in our group have gone through that program with great results. I have also heard many good things about The Boston Children’s Program, The Mayo Clinic program and others. It is important to find a program that focuses on increasing your child’s function. It is also important to do your research and find a program that is known to have good results. Ask around in FB groups to see what places people recommend. 3) Start working on increasing your child’s function from home ~ This is what we did for 8 months before going to the Cleveland Clinic. Greta went from being in bed 24/7 to participating in some graduation events, going hiking with friends, participating in a Philosophy Club and hosting an Open Mic Night at our house. For years we were waiting to find a medication that decreased her pain so that she could start to do things again but when we finally realized that might not happen, we shifted focus to doing things again in order to bring her pain levels down and that made all the difference. This is what I help other families to do in The Greta Method program. When our children’s migraines become one constant fluctuating headache that never goes away then we need to start to treat it as a pain condition and help our kids to find strategies to manage their pain effectively. Contact me to talk about finding a pain specialist, going to an inpatient pain clinic, or doing The Greta Method. My goal is to help your child get their life back and help you get yours back too.
Licensed Psychotherapist, Pain Coach
p.s. photo creds to Greta ~ she took this photo in Grade 12 depicting her life turned upside down through meds
The general contents of this website are provided solely for educational and informational purposes and are not meant to provide professional medical or psychiatric advice, counselling or therapeutic services.
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