rmlyonsfamily

Dr. Kanter is awesome!! Let us know how it goes! Kayleigh is actually back in the hospital at Brenners in Winston. We'll be in Concord soon and hope to meet up with you and your Mom!

She started having trouble breathing over the weekend and complained of extreme fatigue. I told her it was probably her Dysautonomia and part of life now. Boy do I feel bad now.... Took her to the doctor this morning after continued complaints. A chest xray revealed a good portion of her right lung was COLLAPSED!!! She was rushed to the hospital where they put a chest tube in the in the ED and we are now awaiting surgery in the morning for a permanent fix. Cardiology will be in to clear her before they will take her down to surgery. Any other POTs/PAFs have this happen for no apparent reason???

I'll call them Monday. Thanks!

So, will they more than likely redo her labs? He was concerned about her potassium levels because of the dose her Florinef is (she takes 0.3mg daily). I haven't talked to Dr. Kanter's office yet - just went online and saw her labs were posted today.

Kayleigh's labwork looks good. Her sodium is back down to 138, which is good (it was high). Her potassium says 4.0 "hemolyzed result". What does that mean?

Today went great! He said her EKG was still "tippy" - whatever that means! I did see it and it was still a strange rhythm, but he was ok with it. She had a 45 point spike in HR/BP from laying to standing when they did orthostatics. Again, expected. And her heartrate is still hanging in the 45-50 range. But... Overall he was VERY pleased with her progress! He was extremely excited that she is on the elliptical 4 miles 3-4 times a week without difficulty. He didn't change any medications because he said she looked so good he didn't want to mess it all up. Drew some labs and said if her potassium or sodium was off he "may" change them a bit, but didn't want to. I asked about when to call him for problems.... he was pretty clear. 1) Headaches that won't go away with a tylenol or go on for more than a few days 2) If the dizziness returns 3) If the sluggishness returns Otherwise - we don't go back until June 1st!!!! Oh - the best news of all..... The college she wants to go to is in Denver, CO. There is a pediatric cardiologist there that came here to Duke for a year JUST to train under Dr. Kanter! He JUST returned back to Denver in July. So - when we get there (if she goes) he is going to get her set up with that cardiologist for continued care. :0) When we left he looked at Kayleigh, smiled, and said "YOU are the happy in my day! YOU are my success story!". Makes a Momma happy!

We go back to Duke tomorrow for the first time since Kayleigh was discharged from the hospital July 25th. She looks fantastic, feels great, and endurance is improving every day. Sure, we still have some struggles, but she does well and pushes through them. I'm so afraid that I have a false sense of security and we're overlooking something! So afraid Dr. Kanter is going to hear that crazy heart rhythm that started all this, or her numbers will be low, or whatever.... I know it's crazy, but it's the nervous nilly Mom in me! LOL! Anyhow - send up some prayers for us tomorrow! Thanks!

Kayleigh says the GI stuff!

And Kayleigh is doing GREAT! She does come home a little tired, but overall she is still miles ahead of where she was 6 months ago when we pulled her out of school and put her on homebound! A few weeks ago she started using the recumbent bike a little while each night and built up to the treadmill. Now she's able to do 10 on the bike, 10 on the treadmill and 10 on the elliptical and is really building up some good endurance. Last week she sang a song by Laura Story at church entitled "Blessings" and one of her youth leaders told her story before hand. Lots of tears from her Daddy and I! We are just so grateful that she is still with us and so very grateful to the people on this forum that helped us through our most difficult days! - here's a video of her singing. :0)(it's hard to hear Doug introducing her, but once she starts singing it's good) How is everyone else's school year going?

They have her Periactin on a schedule where she takes a half dose in the mornings, and a full dose in the evenings. This way, she doesn't feel the drowsy effects as much. The first few days she did, but after that she's been fine. And - the way they explained it to us is the Periactin will do multiple things for her. 1) It actually works kind of like Zofran and can settle an upset/nauseated stomach, allowing her to eat past it. 2) It is an appetite stimulant so she will eat more and gain weight 3) She does sleep better at night 4) Kayleigh has trouble with bradycardia b/c of her low weight and she wasn't able to eat as much. Periactin has allowed her to eat more, upping her nutrition, and in turn has kept her heartrate stable. It has worked well for her.

Hi - Our daughter, Kayleigh, was recently in the hospital. While there, they addressed her not eating - like you - she complained that she gets hungry, but as soon as she starts eating she gets nauseous. Sometimes smells would even bring it on before she would eat. She'd try to push through it, but that would only make it worse and then she'd complain of stomach pain. They started her on Periactin and within 2 days most of those symptoms started to improve and she was able to eat. Now that she's home, she remains on Periactin, but on a lower dose and she is eating well and gaining weight for the first time in a long time! As far as a beta blocker goes - her EP cardiologist wants her on one but isn't ready to do it yet. Her heartrate has been very low for the last several months and is just now in the 50's. A beta blocker would drop it even more and that's not good for her. So... for now.... we are holding off.

She actually would be flying on a different flight/layover than them - so she'd be alone. She had a f/u with the doctor today. We talked about it with him and he said he is not comfortable with her going just yet. She has only been out of the hospital 3 weeks after a complicated 18 day stay that included her coding on more than one occasion. She does still have PVCs going on - he heard them today. Stress and anxiety (layovers, missed flights, delayed flights, etc) can all cause the PVCs to get worse and in her case that is what triggers the multifocal PVCs, bigeminy, dangerous heart rhythms, etc. The more we talked - the more we realized that he is right. She is disappointed, but she also understands.

Kayleigh's boyfriend is in the Air Force Academy in Colorado... we are in North Carolina. She has an opportunity to fly there with his parents over Labor Day weekend. The nervous nilly Mom in me doesn't want to let her go, but I know she would LOVE to see him before he comes home in November. It would be a complete surprise to him that she'll be with his parents, and to her because we wouldn't tell her until the day before she left. The flight itself is 7 hours of travel. She'd fly from NC to Houston, layover in Houston, then Houston to Colorado Springs. I'm worried about her POTS, fatigue, the air pressure difference causing headaches and dizzy spells, etc. Thoughts? Experiences? Tips? Would you let her go?

So - Doc told us he has another patient on Florinef that he did a procedure on earlier this week and she bled and bled! He said Kayleigh and this other girl are the only 2 of his patients on this med and he suspects the Florinef has something to do with it, but it's not really listed as a side effect. He is having us use nasal saline for now and if she has another one before Wednesday he plans to use silver nitrate Wednesday while we are there to put an end to it. He also heard several PVCs in her while we were there today... the good news is she isn't feeling them. But he did say they were pretty prominent. He'll recheck when we are there Wednesday.

More bloody noses... seeing the doctor tomorrow to see what's causing them! Ughh!

So they didn't find anything abnormal with her actual heart? Nope... echo looks good, EKGs and holter monitors were bad in the hospital, but have improved. She passed the stress test? Sort of... Her heartrate went up as they expected, but her BP didn't change at all. Stayed low. Did they check her supine and standing catechcolamines? Yep... Didn't do what they expected! Prior to test: Norepinephrine was 99 - Epinephrine was 45 - Dopamine was <10 At the time of asystole: Norepinephrine was 337 - Epinephrine was 83 - Dopamine was <10 She has been primarily hypotensive on standing right? She is hypotensive sitting and then even more so standing You said she was really sick from the flu, do you know if they checked her "quantitative immunoglobulins" Yep - they are all within range Has she mostly been healthy with few viral or bacterial infections? Until she had that flu, yes. Since the flu it's been one weird thing after another. She even had to have tubes in her ears at 15 years old after several ear infections that eventually caused labrynthitis! Who gets labrynthitis!?! Also what tests did the neurologist do? Neurologist really didn't do much of anything other than an EEG. They kind of wrote her off... Did they test her large fiber nerves (emg) and her small fiber nerves? Nope

Wow! Thank you, Arizona Girl. Here's a few answers to your questions: What type of doctor is she seeing right now (duke)? At Duke she sees a Pediatric EP Cardiologist who specializes in autonomic disorders. He is FANTASTIC! He did the CPX, all the labs, and her TTT where she went asystolic. He is the one who diagnosed her with POTS/NCS/PAF. I was also wondering if you all had done any testing looking for cause of these symptoms? She has been through Endocrinology, Rheumatology, and Neurology... none of which have found anything other than a slightly elevated ANA from Rheumatology that is listed as "not clinically significant". We suspect this all started about 3 years ago when she had a true influenza virus for about 4 weeks with very high fevers. Since then things have progressively gotten worse.

The follow up labs drew on Kayleigh last week came back today... we've gone from very low sodium of 120 to very high sodium of 154! I plan to ask if it's the increase in Florinef causing it - they bumped her back to 0.3 when they dropped the Midodrine to 7.5. Her potassium looks good at 3.9 though. Guess this is always gonna be a balancing act!

Now that Kayleigh is "stable" and doing well on her meds and nutrition schedule, it leaves me wondering who to call when. Her POTS/NCS/PAF doctor is 2 hours away at Duke Medical Center. For little things that come up (i.e. this weekend she had a funny spell) when I feel like she needs just a check, do I take her to the family doctor or do I call her doctor at Duke? Her doctor at Duke is almost impossible to get in if it's an immediate thing - they typically don't have an opening for at least a week or two. If you're Dysautonomia doc is a few hours away, who do you go to for the little things?

We called the after hours nurse. Believe it or not - she said to use Afrin! Said to use 1 spray of Afrin and pinch for 10 minutes. If it is still bleeding after that to do it again. If it is still bleeding after the 2nd try then head to the ER. So far it has stopped... we shall see! My kitchen sink looked like a murder scene!

Yikes! Kayleigh is on her 2nd bloody nose in an hour and it's a bad one!! When she pulls her hand away it's like a faucet running! She has NEVER had bloody noses before, EVER. Is this from meds? Any other POTS/Dysautonomia peeps deal with it? Tips? Her blood pressure is fine, her heartrate is good. She isn't feeling woozy or anything - says she feels fine and is even kind of laughing a bit out of frustration saying "what ELSE is gonna happen to me!?"!

We were just told the same thing about water when K was discharged. Only 20 ounces of what she drinks per day should be water. Otherwise it's to be milk, gatorade, natural juice, etc; but they preferred Gatorade.

There is another post that was made when she came home. She is doing well and we hope she can start school in a few weeks.

Honestly, I'm not sure how they handle it after 8 weeks... can't say that I thought about it until now. But... I think I'll call and ask them Monday!

Her school starts at 8:30am. So she can eat, then take her meds, then head out the door. That does make mornings a bit easier. And her high school is huge as well with no part time homebound. (+400 per grade level). We're going to give it a try and see how it goes. If it doesn't, it doesn't. We have a huge church family with a large homeschool support system there. We may just switch to that if need be. The homebound program in our district is for a max of 8 weeks... so we don't have much of an option other than TO give it a good try. I hope it goes well for you guys!!