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15 Yo Dd Have Dysautonomia?


Michelle F.
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My 15 yo dd has had osteomyelitis (bone infection) on both lower mandibles since she had her wisdom teeth removed in December, 2007. She had just had her braces taken off and it was recommended that she go ahead and have them removed, before their roots started to really develop. There would have been absolutely no where for them to go, except maybe up near her sinuses. When she came home after her first surgery, she fainted, without warning, while standing waiting to get in the house. This was about 2 hours after the surgery. We do not know why she has had infection, nor what kind of bacteria we are fighting. She has just now in the past six weeks, had success with one of the antibiotics they have had her on. She has an oral surgeon and a admittedly, clue-less, infections disease doctor.

Since she has been down-and-out with this infection, she has started telling me about her eyes "going black" when she stands up. She said this has been happening since before her December surgery. She said this happens about 75% of the time, when she has been sitting relaxed and then gets up and begins walking. I don't "think" she's describing presyncope, but visual disturbances. Oh, btw, she does have vasomotor rhinitis, since birth or at least early infancy.

I was thinking I would let her get relaxed and then take her BP & HR when she stands, to see if it is related to that. What do you all think? I know this may be "normal", but I really don't know what that is anymore.

While she was telling me this, my 13 yo dd told me that she does this too, but she sees spots more often, than blackness. She's been doing this for a while, too.

I realize I am talking about teenagers, so maybe hormones play a part, too. Any thoughts.

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I've blacked out for years. Never passed out - just lost my vision. I always thought this was a normal phenomenon - not being able to see after I stood up. I finally told a neurologist at age 20 about this, and it was one of the factors that lead me to be diagnosed with POTS. The blackouts had been happening since I was 8 - maybe earlier.

Good luck to her.

Sara

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I can black out or see spots when I stand. It doesn't happen that often, but it always happens when my POTS is really bad. That would make me think that it is related to POTS. Testing her hr and bp when she stands up shouldn't do any harm, so I would try it.

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I agree, I think taking her heart rate and BP standing is a good idea--- :)

When I had a tooth extraction in Dec. 2000 I crashed with my POTS. I had mild symptoms for years that were not disabling, but after the extraction I was. This is why I as so afraid of th extaction I had last week.

I get a lot of visual disturbances, but my sight doesn't go completely black. I get black floaters, blurry vision, and double vision when looking to the side.

It wouldn't hurt to get some blood work done. Vison problems when staning could be the beginnings of OI/POTS symptoms. When they are younger, symptoms can present differently.

They need to find out what's causing the infection also, and hopefully running some blood work will be helpful with this.

I'm sorry your daughter is experiencing these dsturbing symptoms-----this has to be pretty scary or her.

HUGS,

Maxine :0)

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Since it is happening to both of them, it makes me think that either they could have genetically transfered POTS, or they just both have low BP. It is relatively normal for people to see spots or black out when standing up too fast if they aren't getting enough salt and have low BP.

I would recommend to do the BP and HR check on both when lying down and standing to see what happens, to see if there are other things that would make you think POTS.

Best of luck,

Mary

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Thanks for your comments. I will take both dd's BP's & HR's lying and standing. Regarding the bone infection, I've really had to be on top of that, in addition to the NCS stuff I have. I was well on the way to getting her set up with a new infectious diseases doctor who really knows his stuff. However, it was not that easy. Over one weekend, she worsened and I felt I HAD to take her to the clueless one. He put her on another med, which was what I thought he should do. She is getting better, after a long road. There are not a lot of I/D doctors around here. I do have a back-up plan of getting her referred to another, if it comes down to it. So far, so good, though....finally.

Thanks all!

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