Just a quick note to say that cardiology cleared her of having any heart related reason for her symptoms. We did get an echocardiogram, so they feel pretty definitive that she is no more likely to drop dead than any other 6 year old. So that is GOOD NEWS. She does have a slight defect, but not one that would effect her health and it is not necessarily more or less than anyone else might have. She does still have her double heart murmurs which they are confident are both innocent and said that her very thin chest can amplify (to us and residents at ER and such who are often alarmed) her heart beat and draw attention to her murmurs when they might otherwise go unnoticed. So when her heart feels like it is beating out of her chest it is mostly because it is just so close to the surface.
They are also mystified and concerned about her weird exhaustion. They suggest we get a Peak Flow monitor and see what is going on with her breathing... some kids have asthma without prominent wheezing. They also suggest we get her tested for mono.
So, still some stuff to go before we have an answer, but right now we have ruled out the deadly possibilities so I'm good with that.
9 comments:
Oh I am so thankful to hear this - thank you for posting! I hope you get an answer soon but at least you've ruled this out.
I am so happy to hear the echo was clear. Did you say she had a full blood count? I may have read that on FB. I didn't realize how unwell Baby has been lately, but come to think of it now, she has been to the ER a lot. Good news it's not the heart, but how frustrating to not have an answer. She is such a little firecracker, it must be SO alarming to see her so exhausted all the time.
Hives?! Is she on any new medication? Murphy has broken out in huge hives due to an unknown virus two times. It is so alarming looking.
Other things to look into--fifth disease & Lyme. People don't always get a rash with the fifth disease or at least not one you remember. The general 'unwell' feeling & fatigue are common for those.
Thinking of you all & hoping you guys get to the bottom of this mystery. The world is not right if Baby isn't making a ruckus.
Wootini,
I am so relieved... I can pretty much handle whatever else it could be.
Julie,
Yeah, she had a full blood panel, a metabolic panel, c reactive protein and one other thing I can't remember.
She has also gotten hives from a virus a couple of times and I am assuming that is what it is because she had a stomach virus all last week. I'm thinking that whatever is going on is knocking her immune system down because she's getting whatever is going around to the 10th degree every single time. She has to have missed almost 3 weeks of school this semester.
I am thinking it could be Lyme because she was exposed to deer ticks in PA a couple of years ago and I know that it can be dormant for a bit then get triggered by a virus.... which she's had plenty of.
I was also going to say Lyme disease. Was that part of the blood work? Sounds like the same symptoms. Hugs and prayers for all of you. So glad it is not what you feared.
Brenda,
I don't know what is covered in the blood panel... we haven't gone back in since they got the results because the cardiologist was the next step. I assume not on Lyme's.
Lyme Can cause a rash and/or flu-like symptoms, and obviously chronic fatigue. I know you know all this... Maybe it is worth mentioning to your doctor? Hope you get some helpful answers soon.
Emily does not have prominent wheezing. We went to the dr she sees for asthma for a check up and they said she was good togo, but wanted to do one test and we could go. They did that test and then told me to go back to the room. They said she was using about half of her lung capacity which explained the very uncharacteristic napping. I was shocked because there were no other signs! Hope you get it figured out.
Kellie,
Oh, thanks for that comment! That's been in my top two likely conditions especially because she had that case of crazy croup in the winter and they specifically asked about history of asthma and wheezing because it was usually related at this age. Then it would also explain her chest pain with running and her exhaustion and avoidance of active play. For some reason our pediatrician still hasn't called us back after the cardio to schedule a follow up! I kind of thought they'd have a plan for what to do next...
Glad to hear baby is clear on that front, hoprfully ya'll can get some answers as to what could be going on soon.
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