MicroBlog Monday: Pointless

Today was Wallace’s follow up with the physiatrist we saw back in September. Absolutely nothing was done during this appointment. He refuses to look into causes of the low muscle tone and lack of reflexes. He refuses to refer us to someone who will. (He was totally affable so don’t get a horrible image in your mind.) I fear being too adamant with doctors due to the history I have with them reporting me to CPS when I come for help. I left feeling like it was the equivalent of beating my head against a brick wall.

I’m not done. I don’t give up. I will go back to the family doctor we saw once and get her to help us come up with answers. We didn’t get to go to the neurologist we waited so long to see because it was the same day I was supposed to be in Chicago for court that got canceled. Maybe I should get us back on the wait list for that.

For reference, here is a link about hypotonia. Note that it is a symptom and NOT a diagnosis. There has to be a cause and this list would be a good place to start ruling thing out (some I know aren’t it). The trace minerals helped but it seems clear to me that it isn’t the only piece of this puzzle. I will be doing a trace mineral update soon since we are on a break at the moment.

About JennP

Single mom by choice, lesbian, natural living, parenting, car free, Chicago.Thank you for reading and feel free to leave a comment!
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7 Responses to MicroBlog Monday: Pointless

  1. How frustrating that you’re unable to get answers as to the cause of the hypotonia. It is hard trying to deal with symptoms without being able to get to the root of the problem, but it sounds like you’re doing your best on both fronts.

  2. I had to fight so hard to get anyone to acknowledge his delays and get him services. I love seeing updates on everyone’s babies but sometimes it still hurts. He couldn’t sit on his own for even a minute until he was 10 months!

  3. Traci York says:

    Ugh, that’s so disheartening. I’m glad you have another doctor you can approach, to help you find answers. Sending lots of positive energy your way.

  4. I don’t know how much good it will do though.

  5. Mel says:

    It’s hard when you’re looking for answers and you meet brick walls. Here is hoping someone hears you and helps — maybe the family doctor.

  6. Thank you. I got to talk it out with my friend a little this evening and that helped. If it’s genetic, i need to know what and how it is passed on. It could impact my decision for donors for future children, or having more children at all (say Wallace has it mild but severe is really bad?). So much to think about and no one here with me as invested as I am.

  7. Sarah says:

    Idk if anything is as frustrating as medical personnel who won’t hear what you’re saying and help you find the right next step if they can’t help directly. (Or as wonderful as those who can and do!) Keep fighting, and I hope things fall into place sooner rather than later!

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