Thread by @purplemamabear

Thread 🧵: Reflections of a Parent/Caregiver After Six Years Implementation of CDC Guidelines (warning long but I am very interested in feedback)

Since babies, my kids, have intimately known #pain. At one time their #pain was intermittent & #acute. Sadly, they now struggle 1/

#chronicpain & are young adults. Our kids 1st 13/16 years of life, our family had a #safetynet, their #pediatrician. He was highly intelligent, compassionate, he challenged the system & in the most authentic sense #partnered with families. #Pain was not a major concern when 2/

the kids were under his care. The nature of their disease often brought us to the ER & hospitalizations. The hospitalizations resulted due to inability to manage #pain, dehydration, & other issues caused by a flare in their #disease. My husband & I attempted to minimize the 3/

interruptions of their disease in their life. We developed a plan in partnership w #pediatrician in addressing this. When the kids had flares we had various #medications on hand (inclusive of pain). Goal was keeping kids out of hospital & based on how they felt in school & 4/

activities during flare. There were a number of steps we took prior to meds. Also the plan was brought into ER. If as parents we felt unable to address our kids would be admitted. As parents there was nothing we could not ask their #pediatrician. That relationship was not only 5

invaluable BUT necessary. It was critical w the complexity of illness our kids had to have opened communication. Then, he left, our safety net pulled away & I felt as though we were in a life boat & when reaching out for help, instead of a life preserver 🛟 harpoons instead 6/

were thrown. There are many things that played into what we experienced the next 6 years. Even though I felt skilled in areas of navigation & advocacy the next several years were a nightmare. Besides our trusted #physician leaving, the kids had undergone a rare procedure & 7/

unfortunately both had complications. My daughter was the 8th child to have the procedure at the particular hospital. Recently in discussions with GI he indicated based on our daughters outcome they modified the survey, which I actually knew. Care, when you have a #raredisease 8

is an uphill battle. Care when you have a #raredisease, a rare (often unheard of transplant) with complications is a nightmare. A few other factors, when their #pediatrician left our daughter was 16 & son 13. Teenagers. Not little kids. Also, it was 2016….. the #CDC had just 9/

released their #OpioidGuidelines. Both our kids experienced multiple complications after transplant, one being #chronicpain. The last years have been truly a nightmare. What my daughter has gone through is indescribable. Learning from her journey I altered a number of things 10/

I did w my son. My husband by this time had passed from his disease. Thus, I was trying to navigate on my own & even w my background I fell numerous times. The #CDC #Opioid Guidelines were not supposed to applicable to the #pediatric population. The #Guidelines were not 11/

suppose to apply to those under care of #pain doctor. They have been. They’ve also been applied to #acute pain. THE #Guidelines I believe were a major factor in the horrific care my kids received. They were teens, the outcomes of their transplant poor, they were left w 12/

#chronicpain as well as other symptoms that did not make sense (but they did). By this time my daughter was not the sweet care compliant child she use to be. She had attitude. She was tired of being told her symptoms couldn’t possibly be occurring. As much as I love my 13/

she was a terror. The type of patient that doctors 🥼 hate. I understood her behaviors (did not condone, but absolutely understood, if any physician truly listened to her journey they too would understand). We were thrown into a cycle that, as a parent, I desperately 14/

attempted to find our way out of. Because of her behavior, because of her #trauma (a lot of it from her #medical journey) her #pain & other health issues were dismissed; she was a drug seeker, an addict. It was her MH that was the cause of all her issues. On the other 15/

you had my son. He had given up on doctors. Fortunately (& due to luck) I changed some things in way of being a #caregiver. I was more adamant that their #voice was heard as well as mine. I pushed for partnership. My son ended up w an amazing pediatrician. Not only did she 16/

care about him/but my daughter as well even though she was in the adult system. The back story about how we came to have her a ped I think illustrates how critical it is that pediatricians truly listen. Even though my son trusted her, I literally had to pull him to appt. 17/

She did an amazing ‘soft hand off’ to an adult physician & while at 1st my son pretty much stopped going to her unless an emergency she & her team (thank God) worked on the the relationship, hoping to gain trust. That has paid off as finally seeing some steps to regain his 18/

health. While both my kids were #pediatric when #Guidelines dropped they drastically impacted my kids. First, sadly if you have symptoms that are unusual you often find yourself defending your story. If those symptoms are unusual AND you have #pain, the biases are 19/

devastating. IF you have unusual symptoms, #pain AND you are not a compliant, sweet patient & posses good knowledge about your disease you are definitely faking, an addict (not my words, physicians words) or it is all psychological 20/

My son experienced a different trajectory. He was under care of an amazing #pain physician. He was wonderful & my son, who is hesitant to trust anyone trusted him. A few years after the implementation of the #CDC guidelines the clinic my son went to removed all #patients 21/

from #opioids. I am NOT a fan of #opioids. I never have been for years I looked for other options to address their pain. I do believe that they carry some risk. However, I also believe many other medications carry risks as well and that it’s critical for pros/cons to be 22/

discussed. After years of looking & trying other options (a few to the detriment of my kids) it was very clear that they benefitted the most from #opioids. Two weeks earlier we had seen his doctor & reviewed his care plan. I was still always looking at other options 23/

by this time I had started trying to figure out why care so poor, why the issues and came upon 2016 Guidelines. I was cognizant of them & how impacting state. I feared for my kids well being. My sons physician was singled out as when the state #Medicaid office did a study 24/

which all states were mandated to do by @CMSGov they found him to be the highest prescribed of #opioid #pain medications. Now, there is a back story here. A year prior the clinic made a policy change directing every primary physician to stop prescribing pain medications & 25/

that inds needed to be referred to a #pain doc. Well, this increased his numbers. The plan that we had discussed two weeks ago - that my son remain on dosage as well as other steps, was dismissed. Interestingly enough, as mom worried about what I was seeing I was always 26/

looking for other options. At that time I had brought up two - his physician - politely told me that my son was stable and that moving forward on other two options after the #trauma he had experienced would not be good & to continue w plan in place. As I said my son trusted 27/

Two weeks later every #patient on #opioids were informed they would be removed from them. My son was scared & devastated. He was scared about not having access to #pain meds but he was also confused. He trusted his pain doctor. When following up w clinic admin, they cited 28/

these actions, the unilateral removal of all patients from @opioids due to the #CDC guidelines. Based on my knowledge I brought up numerous points of concern & also how their actions seemed to contradict what was actually laid out in guidelines. She hung up on me saying I was 29

angry. I most certainly was angry, however, I was not in anyway abusive at all. I did want answers to my questions. During this call before she hung up on me, she informed me that the clinic was going to more comprehensively address peoples pain. I absolutely applaud that 30/

Later I found out that the ‘comprehensive care’ hiring a psychologist. I for one have never ever been opposed to involving a pain psychologist. In fact, I did research until I found the only psychologist in my state w background in area of pain and health and enlisted 31/

her on the kids team. Yet, in this scenario the only treatment offered to patients removed from #opioids & removed fast was the hired psychologist who after digging into her background I found she had no exp w #pain. I was fortunate. Because of my background, advocacy BUT 32/

more impactful my connections made through twitter I was provided advice which I followed. My son was the only one that received a referral. BUT there was damage done. My son, who struggles to trust doctors was devastated that a doctor he had come to trust ‘abandoned’ him 33/

My words not his. My son spent many hours crying, he would ask me repeatedly why his doctor didn’t believe him. Back to my daughter, what she has gone through has honestly been horrific. Things are better now but bc of biases her mental health and health was greatly 34/

compromised. I finally sought the intervention of the experts on their disease and complications. A letter has been placed in chart as well as provided to their doctors and hospitalists. While there were other factors that made their health journey a nightmare, truly at times 35

abusive, the CDC guidelines, the misinterpretation, the messaging from #CMS, the pressure doctors are feeling the #biases & #stigma originating from guidelines definitely harmed them. For my kids, I want compassionate, competent, comprehensive & Ind care. I do believe that 36/

ACT and or CBT could have truly benefited my kids. I know many that were impacted by #CDC guidelines see no benefit in this - again, I am speaking about my kids. I am angered by those on LTOT that have been stable & due to guidelines been removed from LTOT and referred to 37

psychologists. Harm has been done, great harm.

I wonder 💭 where my kids would be if they could have accessed care that was compassionate, comprehensive & Ind. Where there was a relationship of trust & where they (and me as mom) were part of the plan vs biases, stigma, and 38/

manipulation. I honestly believe their #pain would be better, their health would be better. My kids emerged from the healthcare system traumatized, not trusting, and depressed. Their #pain is real, yet it is also influenced by the #trauma at the hands of medical care & their 39/

their depression. I know this is a long thread and I am seeking feedback from those I follow, those who have been advocates. I became involved not just for my kids but to make sure other kids did not go through what they did (as well as adults). This week I’ve gotten a few 40/

calls from parents where there child is in pain but they have not been able to access treatment. I am not saying it has to be #opioids, there are other options. Yet, often what I hear is that a few options tried & then pain often ignored or referred to psych. Tonight’s 41/

call was hard. Mom called, trying to be calm, in background her child was wailing in pain. The daughter has a painful med condition- they tried a few things but her daughter didn’t respond. The doctor today did not have any more options. Mom in desperation asked about 42/

#opioids. Doctor said that she will never prescribe due to fear for her license (yep that was said). They left with the option that was not working. The wails of that child cut through my heart and I fear the harm that continues to be done. My question, after 6 years, after 43/

all the amazing advocacy by people are things better? Hearing that child wail tonight, listening to the mom trying to be calm & figure out how to assist her child I worry that things have not. Pediatrics were not supposed to be included in #CDC guidelines but they have. So 44/

many people still struggling. Have things gotten better? @LelenaPeacock @aander1987 @ChadDKollas @speakingabtpain @BethDarnall @tal7291 @DrJuanHC @GhanaboyPharmd @fightpaindaily sorry if I tagged you, I know long but I truly want your feedback - great respect for all 45/