Growing Frustrated

[rmlyonsfamily]

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!

[sue1234]

It also might be a perfect time to do the stimulation test for her adrenals. Everytime I read about her nausea, weakness and thinness, I keep thinking of Addison's. The only thing is their potassium is usually high, with low sodium, and you said her electrolytes were normal. I don't know, but might be worth an in depth look.

[rmlyonsfamily]

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

[Libby]

It didn't sound like you were fighting them, just that you were - like you said - understandably frustrated. Your daughter being accused of having a mental disease (and you being accused of being in denial) isn't fun on its own, but you're dealing with scary physical issues that aren't being resolved...I can't imagine the strain you're under.

From replies on the thread, it seemed like there were questions as to why the doctors were pursuing an eating disorder diagnosis when Kay is not very underweight and you've told them that you've never seen signs of an eating disorder. I just meant to say that the symptoms of POTS and anorexia overlap almost totally, eating disorders are insidious - and weight doesn't have as much to do with eating disorders as you'd think, so it makes a lot of medical sense that they'd investigate anorexia first. They need to rule out the horse before they go searching for the zebra. But I can't imagine how horrible it must be for you, knowing the doctors are barking up the wrong tree and not being able to do anything.

My thoughts are with you guys. I hope they figure it out soon.

[RockiesGirl]

I can feel your pain/frustration reverberating through your typed words. It always seems like hurry up and wait with the doctors... I'm sure that they have been present in the room when these cardiac episodes have been happening?? Last time I was in the Hospital that was the only way they figured everything out. I sat up and my HR went way up... Just a thought.

Also, every time they do any kind of testing or I have an emergency/hospital stay I lose A LOT of hair too. After they get her stabilized, PM me if you want, & will share a vitamin product that is all natural and has started to help with re-growth.

There are a lot of people pulling for you and Kayleigh (I might be spelling her name wrong, if so sorry), me included ;o) AND it sounds like you are ALL doing as the Doctors prescribe....I know it's an excruciatingly slow process but hang in there. Someday you will look back on all of this and hopefully the docs will have it all figured out by then ;o) Also, maybe this is a learning process for you, Kayleigh and the Docs...

Bless you all and try to hang in there!!

[lieze]

Praying for you today : ).

Hang in there Kayleigh.

[autumn]

I have no advice to add, but I just wanted to say that I've been thinking of you and K often the last few days. I hope they have some answers for you soon.

[rmlyonsfamily]

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...

[enko]

Good luck, I hope that things will start moving

[sue1234]

I'm glad they are still thinking things through. With her heart rate able to get up into the 80s and 90s, now I'm curious why the decline throughout the day. I know there are things that follow a diurnal pattern(such as cortisol, but other things too), but I certainly don't know what all does that. Maybe that can give a clue as to what is going on with her.

Anyway, I'm glad she's still there while they work through this.

[Birdlady]

I'm sorry to hear what your daughter is going through. This sounds so scary! I guess wanted to throw in my own experience with anorexia... I had POTS before I became anorexic, but my doctors kept at me to get my weight up too. To be fair to these doctors, having a low weight really aggravates POTS and your body has such a tremendous strain placed on it. That is a fact. If your body is not getting enough nutrition, then normal people have POTS-like symptoms as it burns fats and eventually muscle for energy. Does your daughter frequently have ketones in her urine? I think getting her weight up is a good thing. I'm not sure why everyone is so against this idea on here. I think a lot of us are too thin with POTS and we tend to get used to this small frame and get scared when the scale starts to climb. I think at her height getting into the 110's is a good goal. You said she is 102 right now? That is definitely in the underweight side with a BMI of 18.1. Anything under 18.5 is considered underweight according to this website. http://www.nhlbisupport.com/bmi/

If the issue is the nausea, then they need to figure out why she is nauseous all the time which is keeping her from eating enough. If she takes Zofran (as someone else suggested) and she still does not gain weight even though she has increased her eating, then GI issues like Celiac and other food allergies need ruled out. How is her thyroid function? Blood sugar levels? You said Addison's has been ruled out... Have you seen the results and done your own research on the numbers? Often times if patients aren't completely flatlined doctors miss borderline cases.

I have no other suggestions, but I really hope the doctors can figure this out. Keep an open mind about everything because if we knew everything, we wouldn't all be sick here...

[lieze]

I think when they can get things stabilized for K's heart she will feel a lot more like eating....and that while I have been underweight myself most of my life when all the POTS symptoms started for me it just made that element of my life more difficult so those are my thoughts.

This just all started for K and she is in good hands at Duke I feel. I trust the doc's to figure this one out. : )

Praying for K that things calm down for her and that answers can be found and she feels better soon.

[corina]

kaybers mom, i'm sending all my best wishes to kayleigh, you and your family. i'd like to let you know what a great job you are doing, taking so very good care of your daughter. i'm very sure you must feel worn out as there's so much to take in, follow up and investigate while in the meantime you need to keep kayleigh kalm and steady. i admire your strength VERY much and like that you are open to try everything doctors advice. do tell kayleigh so many people here are thinking of her and hoping she (and you) will get some answers soon.

take care,

corina

[Dizzysillyak]

sorry to hear you're going through all of this. FWIW .. I was 105 lbs and 5'5" until my mid 20s and I ate anything and everything in site ...

It's really sad that when doctors are confused they want to blame the patient ... Sadly, this is what they were taught. It really makes me wonder what sort of psych problems are common in this group of people.

FWIW, I went through a rough patch when I was in my 20's ( a combo of being a teenage mom, seeing a really ignorant and arrogant psychologist and all those psych drugs they tested on me). After I stopped seeing him, a VERY intelligent therapist told me that I needed to get my act together. I never understood what he meant when he said this but he told me that I "couldn't afford to have psych problems." that I'd "end up in a state mental ward. " SOOO, what kind of psych problems can the rich afford ? It could explain why they think so many people have these ..

I was finally diagnosed as a celiac at 50 years of age but there's no telling how long this had been going on. If you look at my signature, you'll get an idea of what I've had and recovered from and what I'm still working on.

For the most part, food intolerances, candida and nutritional deficiencies were causing most of my symptoms.

This is the best website I know of for information about gluten intolerance and celiac disease. Note because of inadequecies (sp? it's late here ... lol) in testing for celiac disease, eliminating gluten is the best way to determine an intolerance. Although testing is still recommended to determine is someone has celiac versus gluten intolerance.

http://www.glutenfreeandbeyond.org/forum/viewtopic.php?t=2129

If you look at other journeys on that site, or check the web, you'll find many stories like mine. Most, all, of us were misdiagnosed and had to figure this out ourselves. Feel free to start a thread. You'll find a VERY knowledgable group there ... much like here.

FWIW ... I'm very sensitive to gluten and several other foods. In fact the last time I had gluten free Rice Chex, my heart was pounding so bad I thought I was having a heart attack. I couldn't stand up for more than a few seconds ... I have a left bundle branch block and have been told if it gets worse, I'll need a pacemaker. so far so good though ... kow ...

hth ... Marcia

[Dizzysillyak]

Hi again,

I forgot to ask what they were basing her diagnoses of "malnourished" on ? Which nutrients is she missing ? And can they provide them to her via IV ? Obviously, if it's based on her weight, it's a false assumption.

Ensure, like most artificial food, has garbage in it that some people can't handle. But I used to drink it and noticed that I got a real boost from it.

IMHO, She needs to be evaluated for multiple food intolerances (gluten, casein, soy, corn and all those chemicals are common) either via testing or the elimination diet or both. A holistic, functional or integrative doctor can guide you through this. This kind of medical professional will look for nutritional deficiencies via testing too. I prefer seeing an integrative doc because of my long list of medical problems.

Chances are she's getting ALL sorts of garbage, hormones, antibiotics, dyes, etc etc .. in that Hospital food. The objective of a hospital's dietary division is to keep it as cheap as possible. For some reason the medical community isn't grasping the concept of how important diet is ... They'd rather drug us than remove the SOURCE of yhe problem.

Also, is she ingesting ANY source of caffeine ? That can be a direct source of heart irregularities ..

hth ... marcia

PS. FWIW If I were treated like that in a hospital they'd regret it. I can be very direct about this kind of bs. They're being obnoxious (controlling) by telling her she has to eat all that food in 30 mins or else. They know it's too much food and mostly tastes like crap. Now offering a kid her favorite food is totally different.

[sue1234]

Marcia, I see in your signature that you were recently diagnosed with hyperinsulinemia. Can you tell me how you were diagnosed, what led you to testing, etc.? I have it too.

[Dizzysillyak]

Marcia, I see in your signature that you were recently diagnosed with hyperinsulinemia. Can you tell me how you were diagnosed, what led you to testing, etc.? I have it too.

Hi Sue,

I know we had a low blood glucose thread here but I've forgotten what was discussed. DO you know where it went ?

My hyperinsulemia was diagnosed via a GTT + insulin. I was thinking tho, how is this different from reactive hypoglycemia ? ? ? Maybe I was just reacting to whatever they gave me to drink. It sure made me nauseas for at least 45 minutes.

btw. getting off caffeine seems to have helped with this. I've increased my fruit intake so that I'd have more energy and seem to be ok with it .. I still eat a few nuts with my fruit but I'm not feeling the ups and downs like I was. Caffeine is poison ... ... d

[sue1234]

Yea, most days I can't find what I'm searching for on this thread--it is kind of hit or miss!

I can't give up caffeine! If that's what is causing my hypoglycemia, I'm up a creek. I gave it up for 3-4 days back in December, and it is like my vessels did not constrict. I was in what seemed like a no-blood-to-the-head "coma" for those days. I couldn't think, I had zero energy, and just zoned out. For some odd reason, I did not get a caffeine headache, like I have had all my life when I would get off of caffeine.

So, what's a person to do....

[Dizzysillyak]

Yea, most days I can't find what I'm searching for on this thread--it is kind of hit or miss!

I can't give up caffeine! If that's what is causing my hypoglycemia, I'm up a creek. I gave it up for 3-4 days back in December, and it is like my vessels did not constrict. I was in what seemed like a no-blood-to-the-head "coma" for those days. I couldn't think, I had zero energy, and just zoned out. For some odd reason, I did not get a caffeine headache, like I have had all my life when I would get off of caffeine.

So, what's a person to do....

um, give it up slower ? .. I felt like crap for the first 10 days but then things just got better. I gave it up too quickly though. I'd go much slower if I had to do this again ... I got the headache on days 4 and 5 from what I remember. It has to be all caffeine too. No chocolate, tea, guarana, etc ...

IMHO, anyone with dysautonomia or heart problems, without a clear physical reason, needs to stop using it. It's a drug and it alters our blood vessels, causes our cells to drop calcium, blocks our calming neurotransmitters ... here's that link again ...

http://science.howstuffworks.com/caffeine.htm

I promise you won't miss the feeling of your adrenals working overtime once you're gotten used to feeling calm ... tc ... d

PS. I'm still getting used to the idea that so many of the foods we've been eating or drinking all these years are causing so many problems. How did things this screwed up ?