I’ve started several posts and left them as drafts. Things are very difficult right now.

My son’s health problems have continued. I took him in for followup with his pediatrician the other day. She walked into the room, did not greet us, sat down and said, “What can I do for you guys today?” with the enthusiasm one might reserve for an unexpected tax audit. I was both irritated and confused. She is the one who told us to make this followup appointment to check on my son’s ongoing weight loss (about 30 pounds over the last 7 months). He has had ongoing nausea and lack of appetite. When he was down about 20 pounds, she told him if he didn’t put on weight she would consider hospitalizing him.

I was pretty surprised when she said that. It seemed like she was treating my son as if he had an eating disorder, telling him he needed to consume X amount of calories to avoid hospitalization. He shows no signs of an eating disorder but has a myriad of physical and emotional symptoms that are as of yet unexplained. As I’ve mentioned before my son is not an easy patient, and at times is aggressively rude.

I have been feeling frustrated lately with my lack of assertiveness. It seems like when I am in the medical environment (which happens frequently due to ongoing illness) I do not speak my mind. I’ve had some recent insight that when people offer to help me (doctors or others), I decide that I don’t get to have any boundaries. In other words, I don’t get to have opinions, voice my concerns, or say no. So when the doctor was giving my son and I attitude, I decided to do things differently and call her out on it.

“Are you upset with us for something?” I asked. “It feels like you are mad at us for something.” My son chimed in. “Yeah, it feels like you are mad at us”.

“I’m not mad.” she replied. “I don’t like it when I come into the room and you have your headphones on. So I’m sorry if I came across as brash. I feel like I have to brace myself before I come into the room with you…”

I thanked her for her apology and I apologized for not having my son remove his headphones before she came in the room. I would have but I was busy making a list of what my son’s current symptoms were. I think the headphones were a cover story for what she is really miffed about. The last time I spoke with her nurse the nurse told me that the doc had said she didn’t think she could help my son because he is non-compliant. She was referring to the number of times she had prescribed my son medications and he had to stop them due to severe side effects. We had already had a bad experience with another doctor at the clinic who admonished us for not vaccinating (save your hate). She accused me of using a “pick and choose” approach when it comes to the medical system. For instance, I don’t vaccinate but I was willing to try medications to treat my son’s ADHD.

All of that aside, the appointment continued. I reminded her of the purpose of the visit, to recheck my son’s weight. He was down another four pounds. His pulse and blood pressure were low, about the same as mine, which are always consistently low. I have Ehlers Danlos and Sjogren’s. She had the nurse check his vitals lying and standing. I wasn’t able to catch the numbers. She came back into the room.

She told us that she wanted to hospitalize my son due to the changes in his vital signs when he is lying to when he is standing. She explained that the local hospital doesn’t take patients who need to have their food monitored and therefore we would have to take him to a hospital ninety minutes away that had an eating disorders unit. She explained that she thought it was a good idea also because he could also be evaluated by a psychiatrist. She has been pushing this for a while now. Nightmare scenarios were flashing before my eyes. I’ve worked on eating disorder units and I know what goes on there. I knew my son would not respond well. I asked her if I could do what the hospital would do by giving him lots of food at home. She agreed to that option, telling us he needed to consume 4,000 calories a day, and to come back in two days to recheck his vitals.

I really feel like she is missing the mark here. But I agreed to follow her recommendations because I didn’t think it could hurt. We went and got a bunch of groceries and came home and made a food log. My son, being 14, decided to pursue it with gusto. He ate a full breakfast, a snack, and continued to try to eat some more items to the point where he threw up, involuntarily. I recommended we go slower, and realized that consuming 4,000 calories per day is no small feat. We made it to about 2500.

In the meantime I did some more research on what could actually be causing my son’s health problems. I thought before that he had PANDAS (an autoimmune reaction to strep or other infection). I think that could still be a possibility. But he has all the symptoms of POTS syndrome, which has a hallmark symptom of change in vitals from lying to standing. POTS can be secondary to both Sjogren’s (which I have) and Ehler’s Danlos (which I also have)  and my son has all the signs of Ehlers Danlos. She told me there is no other diagnosis to consider other than not eating enough. I disagree and I have the evidence to prove it.

I’m not an armchair doctor or psychiatrist looking up things on the internet and diagnosing my son. I used to be a nurse. I’ve worked in hospitals for most of my adult life. I’ve completed all of the necessary educational prerequisites to be a Physician’s Assistant including A&P with cadavers, Biology, Chemistry, advanced algebra and physics. I decided to become a clinical social worker instead of a PA.

This doctor is young and has only been practicing for a short time. She is a DO which I have found sometimes comes with a more holistic approach and sometimes means the person didn’t qualify for medical school. I know that sounds harsh, but really the way she has treated us makes it somewhat deserved.

The area I live in has very few doctors. I attempted to get my son into a psychiatrist and was told that the wait would be 8 months to one year. In the meantime I will not allow her to admit my son to the hospital and I will be seeking a second opinion.

 

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12 thoughts on “POTS and PANDAS

  1. I have been making the same mistake of not protecting my boundaries or being assertive when in the presence of the medical professionals. I am working on changing that because it is dangerous. I know you said there are few doctors in your area but is there any chance of finding a pediatrician who is more compassionate and open minded? I had suffered with an eating disorder for many years and there was no way I would ever put a morsel in my mouth let alone 2500 calories. Your son does not sound as if he has an eating disorder and I think this doctor is not focused enough on the possibility that this is a physical problem. Prayers for both of you!

    Liked by 1 person

    1. Thank you. I agree, the doctor seems blind to his other physical symptoms. My son’s presentation can be very abrasive sometimes and I think it makes the doctors dismissive of his physical symptoms. I haven’t been able to find any doctors in our area that are taking new patients. So for now, I will try to work with this one as I am able. We go see her again today. Thank you for your prayers!

      Liked by 1 person

    1. Thanks! Yes I have seen that blog, it’s the only one out there that I’ve found regarding PANDAS and it is very helpful. Thanks for reading and for commenting!

      Liked by 1 person

  2. I feel horrible that you and your son are being subject to this. As healthcare workers, we both know how frustrating it can be when we want to help our patients but can’t seem to do so. I just wish her approach to the challenge was different. I dont see the harm in pursuing any diagnostics based on your hunches. I wish your DO saw it this way also.

    This is a good reminder for me as I head into clinicals this summer as an NP student that I want my approach to patients to be more team oriented. I want to be on their team, to help them reach their health related goals.

    As always, I wish you good luck to you and your son. ❤

    Liked by 1 person

  3. She has to brace herself? And why can he not have headphones in. Is he supposed to be psychic in knowing when this doctor will come in so he can make sure he is astutely postured and poised for her presence? I mean who does this person think she is?
    How can she help you? Ummm read the chart and remember why she asked you to come back.
    We should not have to advocate so intensely for our children to be tended to by the person we are trusting and paying to do their job.
    I spent yesterday looking over my list as well as we waited an hour and a half for the doctor to come in at which point I was so tired due to my own muscle disease it was very hard to come across as the educated and proper patient who will cheerily kiss ass to make sure my child is heard.
    I’m sorry if this is coming across harsh but it really struck a nerve to hear that you were treated this way. I find it completely unacceptable that a doctor would speak to you in this manner.
    She also seems to be putting him in a box and overlooking other key signs.
    I have Lyme my daughter has POTS and I have tourette syndrome. If there is any insight or help I can give I am more than happy to listen or give suggestions or just listen! Bethanykays@hotmail.com
    We’ve been down this road now for 4 years this go around and before that years too.

    Liked by 1 person

    1. Thank you Bethany! It does not come across as harsh at all. The path we are on is a very frustrating one and as you know, we are often mistreated by doctors. I thought similar things yesterday as I was preparing for our return visit. I read a blog site by some parents whose kid had POTS and they talked about how we must play the game with the docs in order to get what we need. It sucks. And there is nothing harder than being sick yourself and having to advocate for your child who also has what the docs see as an invisible illness. On the bright side, the doc did agree to refer us for a POTS eval. It was kind of funny because she told me that the only symptom kids with POTS have is a raise in pulse rate from lying to sitting. And she said the only treatment is eating salt. Thinking of that now makes me want to LOL. Thanks for your support!

      Liked by 1 person

      1. I’m so glad you are getting a POTS eval. Where are they doing it. Does it include the tilt table and the sweat test? Yeah…high heart rate only pft. It involves the autonomic nervous system which is in charge of SO many more things than just heart rate. Thinking of you and hoping you get answers!

        Liked by 1 person

  4. I have struggled with doctors my whole life. I avoid them as much as possible! So sorry you are going through this. Hopefully you may find one who is better. I finally found a good pediatrician for my kids–one who didn’t condemn me when I told him I wanted to wait until my kids were a bit older to get immunized. He respected my decision and never said another word about it, but he was the only one. Prayers coming your way!

    Liked by 1 person

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