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    #1

    So frustrating...

    Kathleen saw the neurosurgeon on Wednesday. It was a pretty useless appointment. We were switched from the pediatric Dr. that we were set up with to another one (not pediatric). He didn't even know why we were there and had no background on what has been going on. He left me to believe that this could be "natural degeneration as she's growing and demands get greater" Are you kidding me??? she's 17 not 70! I left in tears.... Sooooo frustrated!!!
    So I went home and emailed Angela Lombardo at the Boston children's Hospital DS program. She set us up with the Director Dr. Emily Davidson on December 3rd. I'm hopeful that she and any other specialists we need to see there will help us get to the bottom of all Kathleen's health issues. She came home at 11:30 yesterday. She was tired even using the wheelchair for longer distances. It didn't help that the nurse wouldn't catheterize her without another Dr.'s note and she couldn't pee. She went over 4 hours trying and finally had to come home.
    I'm trying to catch up on all the new posts and respond.... It's been a very busy week with school starting and all my little ones back for another year. It's also been extremely hot and humid. I guess summer finally decided to make an appearance.
    Mary Grace
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    #2
    (((Mary Grace)))

    Sorry to hear her appointment didn't go well...that is a bummer to have to wait until December to get more answers. Hope she can rest over the weekend and have a better week next week....

    Lisa O.
    sigpicLisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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      #3
      ((((((Mary Grace)))))) ~

      I'm so sorry!! Aaacckkk! You should have slapped that neuro into next year. What a terrible, insensitive, disconnected thing to say to you and Kathleen. Grrrr... that really annoys me, when doctors or medical professionals just stereotype and write off our children, because of their disabling conditions.

      I wish that you didn't have to wait another 2 months to go to Boston, but at least you know that they will show compassion and a willingness to help Kathleen.

      What's with the school nurse not cathing Kathleen without a doctor's note? Is she busier dotting i's and crossing t's than providing medical care to Kathleen? Was there some possibility that a doctor's note would tell here to NOT cath Kathleen? I'm shaking my head here.

      I hope you're on the cancellation list with Boston Childrens, so that if an appointment becomes available sooner, you will be able to take it.

      As always ~ healing prayers are on their way ~

      Love & Light,

      Rose
      Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

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        #4
        Rose you hit it exactly right. It felt like another dr. just writing her off. Like she doesn't care about or need to be independent. It's not the first time I've felt that from a Dr. It's hard to believe in 2014 a Dr. can write anyone off especially a 17 year old young lady.I tried to say that "well it's not his fault he doesn't know her" but isn't it a dr's job to read some background on a patient especially a new one?? To know exactly why they are there? She deserves the best quality of life we can offer her and until I get a clear answer I will never accept a "guess". She has some great dr.'s who have never given up and who know her so well. I'm thankful for those. I've been emailing the coordinator at Boston Children's Hospital and she assured me she will make this appointment as productive as she can. Thank you for the reminder to put her on a cancellation list. I will make sure I do that.
        Mary Grace

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          #5
          Ugh. That's terrible, Mary Grace! You are so right to be angry and upset - that doctor should have done his homework and been prepared for the appointment and of course gone to work immediately to vigorously look for ways to find the root of Kathleen's complex issues, but also to preserve her function - as you say, she's only 17!!!! I have to tell you that advocating for Nicholas at that age was similar to what you experienced. Some doctors began 'giving up' on Nick - they told me that he would be bed ridden for the rest of his life and that I should accept reality and just get used to it. It was a terrible shock to realize that all the energy put into the potential of children suddenly was grinding to a halt and that people in the medical profession felt that my child was not a good investment for their time or the money of the healthcare system. So, I began to advocated differently. Nick and I discussed the situation too. (he has mild DD but there sure is lots he understands!) We started saying things more like "Nick would like to go to a movie but right now his pain and seizures get in the way of that. We need you to get him to be able to go to a movie." (Before I was saying 'Fix his pain and seizures!'). It was a subtle shift in the way we expected help and how we got that help. Also, of course, we ditched the jerks as much as possible and sought out the nice docs who didn't abandon us. I sure hope you get some really helpful help at Boson Children's!!!!
          xoxo
          Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
          Check out my blog: http://www.donnathomson.com

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            #6
            ((((((Mary Grace)))))) ~

            When Jon was 13, he had a 4 hour tonic clonic, followed by pneumonia. A doctor from Jon's HMO was making rounds, stopped by Jon's hospital bed, and said to me, "Why don't you just put him in an institution and get on with your life?"

            It wasn't the first or the last time I heard such a horrid suggestion. Of course my reply was always irate. "How dare you? He IS my Life! Get out of his room! And never come near him again!"

            And, as you said, it is 2014, and physicians should be more enlightened now about persons with developmental disabilities or any kind of disabling condition. In my experience, I would say that more are than are not. But just a few years ago, several urologists wrote off Jon. Our neurologists aren't especially keen on treating Jon, because he's on the same medication as he has always been, and I refuse to change him to something newer.

            To me, these doctors' attitudes are "I can't fix it, so I'm not interested." Or, "what's the point? S/he isn't going to be able to do anything 'meaningful'?"

            Or they are too busy to be bothered with complicated, mysterious cases, and they don't want to invest time in investigating and researching. Detective work isn't their strong suit.

            It doesn't matter that the doctor doesn't know Kathleen. She's a new patient, with complex issues, and he agreed to see her. He should be willing to review any materials he has about her before her appointment, and at least have some ideas as to what could be causing Kathleen's symptoms. Simply put ~ that is his JOB!!

            You have every reason to be frustrated and furious with this doctor. But, that's energy-draining, and you need all of the energy you can muster. Thankfully, Kathleen will be seen by physicians, who do want to help her, who do want her life to be fulfilling and painless, and who are willing to go the extra mile for her. I will pray for a cancellation, so that you can get in sooner.

            In case I haven't told you lately ~ you're a fantastic Mom!



            Love & Light,

            Rose
            Mom to Jon, 49, & Michael, 32, born with an undiagnosed progressive neuromuscular disease. Angel Michael received his wings in 2003. Angel Jon received his wings in 2019. In 2020, Jim, their Dad, joined them.

            Comment

              #7
              Donna, What a fantastic idea in the way you changed the approach to advocacy! It makes so much sense. I will keep that in my back pocket. Like you we have some fantastic Dr.s and a few who give up before they even get a full history. The Dr. in Boston apparently works with children with complicated health issues. Hope is all I need right now.
              Rose, My jaw literally dropped when I read what that Dr. said to you. We do have many dr.s I'm thankful for and who really go the extra mile to help with her health issues. We've unraveled several over the last few years. We will NO see this dr. again that is for sure. I will make it known to her orthopedic Dr. that I left very frustrated. This isn't the one HE wanted us to see.Thank you Rose for your kind words. We all strive to be the best mom we can be and I wouldn't have it any other way. She has made me a better person and I'll always be grateful. If more individuals realized that they or their child could be in the same shoes as our child at any given moment. No one wants to think about this but it could happen... an illness, accident, stroke etc. They need to think about how they would want their child or themselves to be treated.
              Mary Grace

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