rmlyonsfamily

Kayleigh finished last year on homebound and is planning on returning to school as well. She goes back August 25th. What concerns me more is that she goes to 2 schools during the day - she is at the career center the 1st half of the day, the high school the 2nd. We have an appt with her doctor Aug 17th to be sure she is ok to go. I have met with the principal already and they are aware of her very strict medication, nutrition, and hydration schedule. They said they'd need a letter from our doctor outlining it and they will comply - so that makes me happy. I think her day will look something like this: 8am - Meds and breakfast at home 10am - Snack and 20 ounces of fluid/gatorade at career center - no biggie because they allow food/drink 12pm - Noon meds during travel period and lunch 2pm - Snack and 20 ounces of fluid - she'll have to be excused from a class at the high school 4pm - 4pm meds to be given in the high school office as she leaves school Honestly - I'm more nervous about her endurance, not necessarily the nutrition/meds. But I know it all has to work together.

Kayleigh is doing really well! She looks great and has only 2 spells of less than 30 minutes each since we left the hospital July 25th. Talked with her doctors today and they are hopeful that she will continue to improve. Today, Kayleigh posted a note on her Facebook wall that broke me down! Just truly showed her inner beauty and pure faith! With her permission I posted it to our family blog at www.rmlyonsfamily.blogspot.com last night. I thought some of you who prayed for her and gave me encouragement while she was in the hospital may enjoy reading it. Warning though... get your Kleenex ready!

Be careful! This is the part that really made K spiral out of control fast! She was really struggling with eating and nausea and had gotten to a point of eating almost nothing, which affects your heart in bad ways on it's own. Add POTS and PAF to that and we had a few close calls where it was life/death in the hospital and a code was pulled. The round the clock Zofran has helped her tremendously and we also added Periactin - that helps with nausea and increases appetite. Ask about it when you go to the doctor. Good luck!

It was a total of 4 hours. They gave her the yummy radioactive flourescent yellow eggs at 7:45am and scanned her at 8am, 9am, 10am, and 12 noon.

How often do you take it, Sue?

I know a lot of you have loose stool issues with your POTS and Dysautonomia. K has the opposite - she struggles with constipation and it's only gotten worse since her hospitalization. Currently she is taking Miralax 3x a day as well as Senekot... you'd think she'd be all cleared out, but NOPE! Poor kid! Her Gastric Emptying study was normal and they really didn't look any further into it. Even sent her home knowing it had been 4 days since her last BM. Anyone else have this? What helps you?

K is home SURGERY FREE! The last tweek of medication on Saturday has done the trick and we are so very grateful!!! Her daily meds now consist of: 7.5mg Midodrine at 8am, 12pm, and 4pm 0.3mg of Florinef at 8am 1mg of Periactin at 8am and 2mg of Periactin at 8pm 4mg of Zofran at 8am and 4pm and a Multivitamin at 8am She is allowed to start exercising using the recumbant bike to start slowly and build herself up to her tolerance. We also have her on a very specific nutrition plan that has helped with her energy level. The nutrition plan includes a schedule for fluids of 8ounces with each meal, and 20 ounces between breakfast/lunch, lunch/dinner, and dinner/bed for a total of 84 ounces per day. We have to follow up with our family doctor tomorrow, and Dr. Kanter in a month.

Sue - they've made a few med changes. The first hospital we were at had her meds a bit jacked up and added one that my husband and I questioned to begin with. When we got here - that's the first one they d/c'd! The Midodrine is the last med that I've been questioning the dosage on.

It took a full blown psych eval yesterday, but we have finally proved to them that she does not have a true psychological anorexia! Hate that it took that much... but at least K has "cleared her name" so to speak! We have made progress... 1) They now have the nausea 100% under control AND we have even switched from IV zofran to oral zofran. So - she has been able to eat more and more and more and is gaining weight AND her baseline heartrate has improved tremendously! 2) We have FINALLY gotten them to decrease her Midodrine back down to 7.5mg and it seems to be helping! We've been doing our own little study with it... in the morning, after she's had no midodrine for at least 12 hours, her heartrate is in the 90's. After her first dose it starts to drop a bit down towards the 70's, after the 2nd dose we'd be in the 50's, and by the 4pm dose she was in the low 40's and fatigued. As her heartrate decreases during the day her BP goes way up from 80's/50's to 120s/80s. Now that she's on the 7.5 her heartrate hasn't been much below 50 (maybe an occasional 49) in the evenings and her BP seems to be stabilizing at 110/75ish and she is feeling better. 3) Her multifocal and left ventricular PVCs SEEM to be improving. She still feels her spells of 30 minutes to an hour once or twice a day, but they are nowhere close to as intense as they were and they don't set off the monitor near as frequently as they were. They will repeat a 24 hour holter monitor tomorrow tomorrow, it will come off Tuesday and be read. If there is improvement and they don't deem them dangerous anymore - WE GET TO BRING HER HOME TUESDAY OR WEDNESDAY SURGERY FREE!!! 4) They are looking more into her GI issues to see where this plays a role, but it won't hold her back from going home. They did draw labs today to check for Celiac. So glad that we have this forum to come to for resources!!! Thank you all!!

Is no periods part of POTS/Dysautonomia as well?

Just a quick update... My husband and I went home early yesterday and let a close family friend stay here. Early in the day she has heartrates in the 80's and 90's. But as the day progresses her heartrate drops and by late afternoon/evening it's in the low 40's and that's when the symptomatic PVCs start and she starts to get miserable. Her EP doc was in today and said that the eating is not making cardiac improvements. He's ordered another halter monitor for Monday and said that he's just waiting on the go ahead from the pediatric team to move forward... but he didn't say what he was moving forward with. Honestly, I didn't ask because we're going into a weekend and I didn't want K worried all weekend. That's about it...

Sue - she's had all the Addison's tests done by the Endocrinologist less than a month ago. All came back ok.

Libby... we aren't fighting what they are doing, just frustrated. We are following their protocol. The doctor said last night that if eating/nutrition is the issue they should see improvement in her overall heart function within 2 days. She started the protocol last night, but had already gained 2 pounds on her own BEFORE they put this in place and we haven't seen change. Honestly, we've started praying each night a little different than before. May sound crazy, but we've been praying that if there is a heart problem that needs addressed, that the Lord let the symptoms and struggles remain so that the doctors can see through His eyes to figure it out and help her get better. Last night, after we prayed that, around midnight she started throwing PVCs again that alarmed the nurse enough to call the doctor. K never woke up during them, but tossed and turned the entire 30 minutes they were going on which indicates she was feeling them even in her sleep. Overall she had a rough night. After that spell she woke up nauseous around 2am and was up until about 5am. Fell back asleep only to be woke up by nursing at 6 and the doctors start coming around 7:30. So... right now she is out like a light! Looks pretty peaceful!

No one has mentioned Celiac, but I will ask her doctor in the morning. Is that a blood test? Just hate to put her through many more invasive things.

kcmom - To answer your questions: Do they not have records of her growth patterns over time from her family Dr. - they do because I called and got them. But in getting them they say she's been underweight for a long period of time and it was never addressed. Can they give you specific numbers that point to their diagnosis? - the only specific number they gave was the albumin is on the lowest of the normal range - 18. Has she always been on the very slim curve? - yes - and so was I! When I got married at 20 I only weighed 98 pounds. But they say the difference is that her body is showing signs of malnutrition... Could the hair loss be from the stress of the situation? - That's exactly what I think is happening! Did the Dr. from Baptist plant this seed? What does Dr. Kantner say about this? - He said that anorexia has never crossed his mind, but because they've made it such a big deal he feels like we at least need to address the nutrition piece of it. He said that in a few days it will be obvious - if her heartrate and issues still stay the same then no - that's not the issue. If they improve then maybe nutrition is the issue... but he wasn't convinced that would happen.

Trudy - that's my thought. Her labs aren't near critical enough to be causing cardiac involvement - in my non MD opinion anyhow. I did find out just recently the results of her halter monitor that they had on her the first 24 hours we were here. She threw over 900 symptomatic multifocal PVCs with various arrythmias in the 75 minute spell that she had the first night we were here. Her EP cardiologist said he isn't ready to do a pacemaker because he isn't sure what to make of the spell and he is not comfortable discharging her... doesn't feel she's safe. She's had these spells every night since last Tuesday and they last anywhere from an hour to 90 minutes. Anxious to hear the results of today's echo (they were looking at left ventricle thickness) and the signal averaged EKG they did.

I just had another conversation with the eating disorder doctor and am even a bit more frustrated. She claims that K has symptoms that say she is malnourished, despite what her prealbumin and electrolyte panels say. She hasn't had a period since May 27th - they attribute that to malnourishment. But honestly, her body has been through a LOT the last few weeks her boyfriend left for Colorado. That's a lot of stress and she's only not even 2 weeks late! She's also losing some hair when she brushes it and they also attribute that to malnourishment. Again... I attribute that to stress. Again... I told her to do what they ask and we'll go with the flow...

Naomi - Kayleigh is 5 feet 3 inches tall. Christy - Thank you for telling me about your daughter! Drives me crazy that she just keeps getting labeled over and over again! She has put on about a pound since we've been here and that's BEFORE this doctor decided to come say she has a problem eating! And even gaining that pound she is still having the same trouble.

We are still at Duke with K and it doesn't look like she will be out of here anytime soon. First - her heart. Her halter monitor she wore the first 24 hours we were here picked up a fun 75 minute arrythmia with multifocal PVCs among other things. The cardiologists have said they aren't sure what to make of it and really aren't sure what it is/means. So today she had a signal averaged EKG as well as an echo to measure left ventricle thickness. But - her heartrate seems to be improving and is now in the mid 50's most of the time. Much better than the 30 it was a week ago! Second - this is where we get really frustrated. They are telling us that she is underweight and that it's affecting her heart as well as other things - although her electrolytes are all fine and her prealbumin is at 18 (yes it's on the low end of normal, but so is everything else on her labs)! She is at 102.5# right now and is a 16 year old girl. She has never been more than 108 and the last time she was 108 was in March, so she has lost 5.5 pounds since March 8th. Because of her ongoing c/o of nausea over the last 6 weeks and since we've been here she is eating about 50% of her meals, they had her seen by an eating disorders doctor. Now... let me tell you that prior to all this, she could eat you out of house and home! Eating is NOT an issue and never has been. So - she is now on a diet for patients with eating disorders and they want her to be 120 pounds!!! Basically - she HAS to eat 100% of what's on her tray in 30 minutes, if ANYTHING is left on her tray she has to drink 16 ounces of Ensure. She doesn't get to eat 50% of her tray and drink 50% of the ensure - it's an all or nothing! Seriously!?!? I was 98 pounds the day I got married!! She gets hungry.... we have said that all along! She gets hungry, starts to eat, and once she starts eating she gets very nauseous very quickly. She tries to push through it until she just can't take it anymore! They sat here this morning and told us that 75% of anorexia patients don't believe they have it and of those 75% of the parents don't believe it either... as if to say we are in denial.... which is not the case. We acknowledge she hasn't been eating well and so does she! Third - the dysautonomia. He has left her on the Midodrine and Florinef for now and has decided no on the pacemaker until she hits a goal weight at the recommendation of the eating disorder doctor, but he is continuing to check on her daily. Bottom line is they aren't discharging her anytime soon until they feel like she is eating well and gaining weight. She is upset and frustrated, as are we. We've told her to try to get through it, eat what they want, and prove to them that eating is not her issue.

K had a stress test today.... her starting BP was 110/74, heartrate mid 40's. About 11 minutes in her BP dropped to 83/40.. What does it mean though that her BP dropped? Tomorrow she's having an echo done as well as a gastric emptying test. Sounds like we won't be out of here for a few days...

Dr. K was just in to see her and he said regardless of the norepinephrine level, he has diagnosed her officially with POTS and NCS.

Uhhhhh... there are laws against things like that and I'm shocked that someone in her position would tell even say that.

That is interesting!

Thanks. I will watch for it, lieze.

Stacey - noone has ever mentioned PAF, but I will ask her Peds EP doc when he gets here today. Thank you!