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excuse me. i have a grievance. September 30, 2010

Posted by caizooka in autism, autism parenting.
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In the back of mind this past year, I’ve been drafting this letter. I’m sending it off today. I have removed all doctor’s information and names.

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Dear (said doctor’s clinic):

I am writing to you because I don’t want to see another family have to endure the pain, uncertainty, and unnecessary distress that my family has. I would like to take this opportunity to express my dissatisfaction with our care at Your Clinic. I would most like to see fundamental care changes made to be able to identify Autism Spectrum Disorders and other developmental delays identified in a more timely, compassionate, and diligent manner.

My oldest son who is 13, as well as my youngest son, who is 2, both are neuro-typically developing children and we encountered no problems with Your Clinic. I was satisfied with the care and numerous times came to the defense of our doctor, Dr. ABCD . In my mom group and in the community, there were several nay-sayers of whom I quickly dismissed and told them of our extreme dedication to Dr. ABCD and the other doctors at Your Clinic. Especially Dr. EFGH and Dr. IJKL.

Where I take up issue is in regards to my son, O, who is 5. He has had numerous health issues. He had respiratory issues from the time of just a few weeks old, asthma, repeated colds and ear infections, and many clear signs of developmental delays. We were constantly seeking answers for the variety of health problems that we were encountering. There was never a clear asthma plan laid out for us. We met once with a different doctor at Your Clinic who asked where his asthma plan was.  I had never heard of an asthma plan and this was months after being treated for and medicated for the condition.  After this and also after being put on a barrage of medications for asthma, we finally were able to obtain the referral to Local Asthma Clinic where our needs were better met for his asthma.

Early on in O’s care at your clinic, we expressed our concerns of his atypical behaviors. These are the ones that I think could have been better evaluated and picked up by our doctor earlier on his care:

-little or no eye contact

-extreme fear of water

-screamed in small places (claustrophobic-like)

-irrational behavior around noise
-panic in group settings

-strange speaking behaviors
-spacing out, glazed look in his eyes
-seemed not to hear sometimes

-showed little or no interest in other children

-covering his ears a lot

After a suspected bout of encephalitis at age 2, these behaviors were even more apparent, as well as these:

-loss of language

-irrational reaction to pain

-OCD (very obviously lining things up)

-a lot more spacing out

-inability to answer a direct question

-violent, intense tantrums

-pattern walking

-abnormal pickiness in eating

-complained that his ears hurt when they don’t

There are a few other times that I think that O’s health care could have been better handled.

-The entire encephalitis incident. Dr. ABCD didn’t have enough information to go from and called in Dr. EFGH to concur that it was probably not Kawasaki Disease, because of the absence of mouth lesions, but rather, it was most likely encephalitis. They sent us to Local Hospital to undergo further testing. Up until this point, I think that things were handled okay. However, never were either of these two scenarios explained to me and I left the clinic with my screaming child, and myself in tears and headed to Local Hospital’s ER where they were awaiting our arrival. I was trying to search desperately from the parking lot on my iPhone what Kawasaki Disease meant. What was encephalitis? How did he get either of those? What did that mean? Why was my son so sick? Why was he screaming non-stop and could not calm down. Was my son going to die? After enduring a battery of tests at the ER, they found nothing but ruled out several sicknesses including diabetes. O only calmed down once we found his favorite movie to put in the VCR in our room. Dr. ABCD decided that based upon the findings (nothing) that it was most likely encephalitis and we should treat him at home with acetaminophen and ibuprofen. We were given no follow up care or instructions of what to look for in terms of him becoming more ill. It is after this incident that O lost a significant amount of speech and began spacing out a lot. He went from speaking in paragraphs to screaming one word demands.

-The incident that finally caused us to leave Your Clinic occurred in 5/09. O woke up screaming and would not stop. Finally, at 9, I called Your Clinic and explained my concern that my son was screaming and was in apparent pain and that I needed advice as to what to do. At that point he had been screaming and crying for 2 hours, unable to calm down on his own or by diverting his attention to something else. I consider myself to be a very resourceful mom. I tried everything. Change of venue, distraction, ride in the stroller. The nurse said that she would consult with the doctor and call me back. She called back at 11 asking a few questions but offering no advice. By that time the behavior was escalating further and was unable to calm down; it had been 4 hours. I told her that I thought that he needed to be seen and I didn’t know what to do. She said that she would have Dr. ABCD call me right back. I was very clear in describing to her the urgency of the situation. My husband had to come home from work because I still couldn’t get O to settle down and the screaming and tantrum was spiraling. I was so worried that there was something medically wrong that was causing this behavior. Did he have a headache? There was definitely some sort of inexplicable pain. At 1:30, I decided to take him on a drive in the car. He managed to get out of his 5 point harness car seat and was trying to jump out of the car. At that point, I took him to the ER because he was then a danger to himself. They didn’t find anything medically wrong with him but we spent several hours there trying to get him calmed down enough to run tests. When we finally got home at 7pm from the ER, there was a message from Dr. ABCD’s nurse at 2:30 stating that if the behavior was bad that we should probably go to the ER. Too little, too late. No follow up calls or care was provided by Your Clinic. After this incident, I requested a neurological-psych exam referral to Local Hospital. There was something not right about O and I was determined to find out what it was. I was not going to feel bad for hurting my doctor’s feelings by requesting this. He referred us. When we met with the neurologist at Local Hospital, she told us that our doctor had specifically written, ‘parent requested referral’. That spoke volumes to the fact that our doctor didn’t hear what our concerns were and support us in finding out what was going on. Considering that he had had suspected encephalitis, which was followed by severe loss of language and constant spacing out, I would assume that a doctor looking out for the best needs of their patient would want to rule out any neurological impairments. Seizure disorder? Autism? Other Processing disorders? Brain tumors?

Reflecting upon Oliver’s care at Your Clinic, I recall vividly telling our doctors every appointment that there was something ‘different’ about O. I always remarked that he screamed when in a crowded room and wondered if perhaps he had some sort of processing disorder. We were always searching for answers for what we were dealing with and always left Your Clinic still wondering. Looking back, this is not how it should have been. I should have been more persistent but felt so lost.

It has taken me a great deal of time to think and process this situation before I could sit down and write this letter. I have thought long and hard about what I wanted as an outcome of this letter. For one, I believe that your doctors need to have more time with each patient.  5-7 minutes with each patient might be enough time to diagnose an ear infection or simple cold. It is not nearly enough time to be able to decipher if there are developmental delays. If they suspect there might be, then perhaps there could be a point doctor in your practice who might help guide the other doctors in fielding questions and furthering referrals to obtain earlier diagnoses. Your doctors need to be better informed on what to look for in order to detect developmental delays. With Autism Spectrum Disorders on the rise, you are doing a disservice to your community by not better educating your staff on what to look for, when, and how. There should be better protocols for when a parent or doctor is suspicious of a behavior or there is a sign that perhaps is not developmentally normal. I recall asking Dr. ABCD repeatedly if he thought that O might have any processing issues. He told me that he did the appropriate AAP screening and that he was fine. He never had the time to listen to our concerns about O’s development beyond his immediate physical concerns.

Feeling like your doctor or medical practice is not listening to your words is a very frustrating place to be in as a parent. When I put my children’s healthcare in your hands, I expect that I am listened to and respected. I expect that as a parent that I should give our doctor as much information as possible that might be pertinent to the situation. When a child is suffering from neuro-developmental delays and possibly autism, please understand that it is a spectrum disorder. Some children present in very different ways than others. Be observant. Be patient. Listen.

I feel strongly that O’s diagnosis probably couldn’t have been obtained much earlier than it was, but he most definitely could have benefitted from early interventions and guidance. I cringe when I think about the time we lost and will never get back when we could have been getting him help. It was a very painful time for us as a family not knowing what was going on. We really could have been helped with the guidance of a strong medical practice and empathetic leadership to guide us into this diagnosis of ASD rather than grasping at straws and begging for referrals.

It is my sincere hope that our story moves your clinic to take into consideration changing your protocols involving understanding, identifying, and diagnosing Autism Spectrum Disorders. Ultimately, it would be ideal if you could set up a protocol in which if a child’s primary doctor identified something in a better screening technique than you are currently employing, that they could refer them to a lead/point doctor within your practice to spend more time with the child to further investigate if there might be any developmental delays. Obtaining a diagnosis for any development delays is a significant wait. The doctors of your clinic should be able to at least treat the symptoms that the child is contending with. Are there sensory processing disorders that could be helped with PT/OT? Are there other issues at hand that could be better dealt with ABA/DIR therapies to help the child? What can you as a medical practice do to better accommodate this child and their family? Do not waste time. Early diagnosis is important, but early therapy, guidance, and compassion from your doctor is crucial. There is so much that you can do as a medical practice to lead families gently into this diagnosis. You have such power to make this a less difficult path than the one that we took. I hope that you take the opportunity to consider how to better accommodate your patients and their families.

I am happy to meet with you to at any time to further discuss this matter and to help to create a better understanding of Autism Spectrum Disorders.

Thank you for listening,

me

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Comments»

1. Lori Gradinger - October 1, 2010

Karen,
You have done this medical practice a great service by writing them in such a thoughtful and thorough manner. I hope they choose to pay attention to your concerns and do something different as a result. If they did nothing but triple the dose of empathy and compassion, it would go a long way. Last night I watched a TV show, “Private Practice”…..sophisticated trash to be sure…but there was a story about a single mom and her autistic son. The doctors treating him couldn’t have been less empathic or more arrogant. The mother was as distraught and at the end of her rope as a mom could be and, while one could surely argue with how she chose to ‘medicate’ her son, the solution chosen by the doctors was to have her arrested by the police and the child (15 years old) taken by CPS. It really pissed me off. There was no “what could we have done differently?” reflection by the docs. They seemed self satisfied that they got a ‘criminal’ mother off the street. It surprised me…..and now I understand perhaps it should not have. Sending you alot of love and gratitude for your strength and integrity. You are the most beautiful of souls. Lori

2. Ginger - November 8, 2010

Karen,

I know it was hard and very challenging to put all these things into words but I am grateful, as I know others will be, that you were able to articulate in detail every way in which this clinic and certain doctors failed you and your family. It was a harsh lesson for your family and I appreciate your taking the time and energy to spell out for them what they did wrong and what they should do going forward. I had very similar experiences at this place and elsewhere, and what I’ve learned is to listen to my gut and get in their face–even if they treat me like I have Munchausen Syndrome by Proxy. The mother always knows when something is not right and it’s so tragic it took so long to get the support your family needed.

Thanks for being brave.


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