MicroBlog Monday: Low Tone

It has been a constant struggle to get any doctors to acknowledge my concerns about Wallace’s low muscle tone and motor delays. They like to get you with “he will grow out of it” or “he looks fine to me.” We saw a physiatrist today and though he confirmed the low muscle tone is throughout his body and listened to all my concerns and read the list of past and present issues I brought with me, I still felt waved off.

I was told to let him know if he loses any skill or anything gets worse, make a follow up appt in 4 months, and get an OT evaluation with the hospital. He said it seemed excessive to put him through a work up of blood tests and MRIs when he was pretty much caught up. Of course I don’t want my child to go through painful and scary things, but I want to find out the cause of his low muscle tone and be able to get him any help he needs. I have this gut feeling that though he has nearly caught up now, he will plataeu and the gap between his abilities and his peers will become apparent again.

This parenting gig is exhausting.

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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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8 Responses to MicroBlog Monday: Low Tone

  1. bumbismom says:

    Our concerns were also disregarded and I had to fight to get help. My daughter now gets 6 hours of various therapies to help her catch up on areas where she is delayed and she is nearly caught up in some areas. It really is hard when your mommy intuition is contradicting the “professionals” but trust your instincts.

  2. Thank you. He benefited so much from PT and feeding therapy in Chicago. But here, when he couldn’t hold his head up, couldn’t, roll, couldn’t sit? He didn’t qualify for services.

  3. Lindsay says:

    More medical professionals really ought to listen to mothers when they’re speaking about their gut feelings and experiences with their kids. This person saw Wallace for what? 20 minutes, max? And you are with him day in, day out. It doesn’t seem right that you could be poo-pooed away.

  4. Sometimes they want to be reassuring and not scare the parent. I get that. He definitely listened much more than some doctors have and he was personable. It’s these little things that add up that I see daily. When I help him up from lying down, he still has a head lag. When he was on a swing with a friend, his head was moving and hers was stable. He trips and stumbles more than your average 2 1/2yo. These things you don’t see in a 20 minute appointment but he did seem kinda wowed by the fact he fell from sitting past 15 months old and that his low tone is everywhere in his body. We have a free preschool yoga class tomorrow before work but he didn’t participate last week and I’m just too tired and have too much to do.

  5. bumbismom says:

    That’s awful. There really should be more consistent standards from state to state. The therapies are so helpful the earlier the better. Getting help and being heard are part of the challenge to all of this.

  6. Illinois was a 30% delay and Michigan is 50%. He would pretty much have to be not walking on his own to get PT here. I tried to get insurance to cover it with a prescription from the doctor but they denied it. That was last year before we moved to Chicago. But, if he has an actual diagnosis, then he would get services!

  7. bumbismom says:

    It really should be 30% everywhere. They won’t diagnose my daughter yet because she is only 2 but they evaluate her as high risk for autism spectrum. I feel like if they are going to give those kinds of results that should be enough for Insurance to cover. I totally understand your frustration.

  8. Mel says:

    That is really frustrating not least of which that 4 months is a long time in the life of a 2 year old. This parenting thing IS exhausting.

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