Growing Frustrated

[rmlyonsfamily]

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.

[lieze]

How tall is Kaleigh?

[Christy_D]

That is so frustrating! I feel for you. My 19 year old daughter cannot put on weight to save her life, and she eats! At 14 she weighed 109, now she weighs 95. She eats a lot, but apparently burns more than she eats. They tried to also tell me she had an eating disorder, without any evidence. She eats more than some boys her own age. Doctors are so quick to label and try to squeeze a square peg into a cirlce hole. It is merely tunnel vision. It is amazing how they don't want to take the rest of her condition into account. You just want to shake them, it is basic common sense.

My son has always been able to eat through his nausea amazingly. But now he is sick after eating, so he has really reduced how much he eats.

Good luck and we will keep you in our prayers!

Christy

[HopeSprings]

Yes, I was going to ask what her height is too. 102 is fine if your 5 foot, not so good if you're 6 foot. Is 120 lbs reasonable or ridiculous in this case?

[rmlyonsfamily]

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.

[potsyturvy]

That is ridiculous that they are labeling her as having an eating disorder! 102 lbs is not too small since she is only 5'3 and especially if you were small when you were her age too. I have had some similar problems with doctors trying to label me as having an eating disorder, although nothing that was as serious as the situation your daughter is in. I am 22 and weigh 98 lbs (which is only because I have been drinking tons of Ensure lately! I had been 93 lbs for a long time before now). However, I am 5'2, eat a healthy diet, and my parents are both small. I finally went to a nutritionist who said I shouldn't weigh more than 105 lbs because I have small bones. It sounds like your daughter probably has a fast metabolism or is small boned also. I am sorry you all are having such a difficult time with the doctors! I hope they can quit focusing on Kayleigh's weight and start focusing on her heart! Sending out prayers for Kayleigh and your family!!

[rmlyonsfamily]

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...

[Olive]

I don't think that is to small either, not enough to think she has a eating disorder. I totally see your frustration. She ate fine before she was sick and she is trying to eat now. Obviously she is getting enough in that her labs are not critical. Yes they are low, but if they were critical the arrythmias could be a result of that. I had issues with malnutrition the past 3 years and I was underweight, everyone assumed that I wasn't eating. But I ate tons, I also went to the bathroom tons. Turns out I had gastric fistulas and everything went straight through me. Thank goodness I had doctors the understood and treated me accordingly.

I wish you the best of luck. Tell her to be strong and prove them wrong. That is all she can do.

Trudy

[Yolaclover]

Maybe she is malnourished but it has nothing to do with the amount she eats or her weight. Maybe it something else. What else, I do not know. I do know that at 5'3"- (my height!) 108 would be very thin, however, it doesn't seem anorexia thin for a teenager! So strange that the doctors have fixated on that.

How is she holding up? What is her mood like? How are you getting through this?

xoxox hugs, you are a strong mom and you are doing great!

[rmlyonsfamily]

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.

[Olive]

I am cardiac RN and that's a lot. I know that my k got so low that I was having PVC's, but it was easily fixed. Sounds like they don't have a clue yet and it's good that they want to keep her to watch her and monitor things. I would be interested to see what the echo shows. Also have they considered temporary pacing wires til they make a decision on the pacer? They just but a line in her internal jugular vein and float the wires into her heart. It's not too bad and easily removed when they decide. If I can help you with anything, maybe answer questions, please ask. I can imagine how scared you are.

Trudy

[rapid_reader]

Alright I suppose from a GI standpoint she's on the fence when it comes to weight, I can't stress enough that this is based solely from a GI standpoint. The problem is other things need to be factored in and once you do her current weight is actually holding pretty well considering. I just don't understand the thought process behind choosing ensure, if eating has been making her feel bad, well more so than she already does ensure isn't the best one to go with...Not to mention they are insane if they think any patient would eat a whole tray of hospital food. If possible try and get her something that's appetizing.

I don't want to alarm you but in this situation if things don't progress as they like and she doesn't drink the ensure or eat the food they may start considering tube feedings. Don't bring this part up because god knows what they would do if this was mentioned right now. Now don't be alarmed most likely it won't come to a tube I just thought it worth mentioning so that you won't be caught off guard if they do in the future.

Here's what I think...If it's just nausea I'd say find someone to prescribe anti nausea medicine and have her take it 20 minutes before she plans to eat (I recommend zofran) Now I can't promise this will work but considering there are more important things than her eating habits that need to be checked out. If it does work and it enables her to eat get her something other than hospital food. Oh and really go nuts on the salt a few pounds of water weight still counts even if it's just fluid. If it doesn't work well I don't know because this always does work for me.

Tell her to keep hanging in there. If it makes you feel any better if respectable GI doctor got wind of this an eating disorder wouldn't even register on their radar, in fact they would scoff at the current attack plan and come up with a new one.

[Yolaclover]

Is there any special food that she likes that you could bring for her? Are you allowed? I have a 3year old girl and a five year old boy, I am really, really praying for K and your whole family. I feel your pain and frustration in your posts and please know we are here! xoxoxox

[HopeSprings]

Well according to the CDC BMI calculator her weight (given her height and age) is considered healthy. She's in the 16th percentile - so on the light end, but still healthy. Expecting her to gain 18? lbs seems unreasonable. I hope they'll get off this soon and start focusing on the real problem.

[lieze]

The only thing Cleveland Clinic found wrong with me was that I was malnourished interesting huh?

That was based on labwork which they did tons of.

I was getting scared because I had at least 15 lab draws while there.

The only thing abnormal was my amino acid gap and it was 1/2 what it was supposed to be.

I don't understand why? Or how?

I think I weighed 100 pounds at the time.

I am 5'4" and I noticed weight dropping at that time although I didn't notice I wasn't eating enough.

My orders after my ablation were go home put on some weight and exercise. They told me the P90X workout was good. I got home and I couldn't walk across a room.

Not their fault they took very good care of me. : )

My big question is what is going on that we are malnourished?

It's taken me a month to get up to 90 pounds and I don't know how I'm going to make it to my goal of 100.

I eat all day long until I feel stuffed.

I literally feel that I should not sleep at night that I should stay up and eat.

I often stay up until 1 am eating.

[kclynn]

Do they not have records of her growth patterns over time from her family Dr. Can they give you specific numbers that point to their diagnosis? Has she always been on the very slim curve? Could the hair loss be from the stress of the situation? Did the Dr. from Baptist plant this seed? What does Dr. Kantner say about this?

I looked back at your first post. What was her weight at that time and had she been losing any weight prior to that?

The only other thing I can think is that is could help her to gain a little, so that in itself is not a bad thing. If you can get her a little stronger then other options will be open to you. She is in a good place and she should be getting great care from the nursing staff as well as dealing with any potential crises. Take a deep breath. A lot of people are rooting for you.

My son started at Mayo which is supposed to be such a great place - not for us. After two visits we changed and have had much better success upon doing so, though we have to travel halfway across the country to do so.

[hholmes13]

I'm so sorry they are putting you guys through this! I agree with others here that it sounds like an awful lot of weight for her to try to make her gain. I hope they start focusing more on the other issues soon. Good luck with everything, your family is in my thoughts and prayers.

[Christy_D]

My daughter is 5'4", 95 pounds, 19 years old. Some people are also naturally skinny. Her doctor said she is only having periods because of birth control pills, otherwise my daughter wouldn't be having them. The doctor said she doesn't have enough body fat to have periods. She was able to put on weight over Christmas, she was 92 pounds, because she loves egg nog and she was downing it to try to put on weight(very high calorie). She was able to put on 3 pounds and maintain it.

We have also told my daughter to try to drink milk shakes, a Steak n Shake milk shake is 800 calories. That is a big jump on her daily caloric intake, her pediatrician said she should eat 4000 calories since she has a busy schedule(college/job/teenager).

See if there is anything higher in calories that she can stomach, ie- milk shakes, if you add powdered whey(protein) she won't even be able to taste it and get more protein into her.

Christy

[sugartwin]

Now if she refuses to eat, even for reasons of valid discomfort, she only plays into it. Is there a family doctor who can refute this ridiculousness? When I was in the hospital for constant nausea and vomiting and subsequent low potassium, they told me I was anorexic as well, even at 5'3 and 140 lbs.

Twenty pounds is a lot of weight to gain, especially for someone who is sick. If she is unable to gain 20 lbs, what do they intend to do about that? If force-feeding her like a goose doesn't work, what then? If she does gain this magic 20 lbs, will they suddenly have a breakthrough about her condition?

K. is lucky to have you as her advocate. Keep giving them a hard time.

[rmlyonsfamily]

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.

[sue1234]

Has she been tested for celiac? It could cause a person to have the gi symptoms, be malnourished, and thus a continually low body weight because they are not absorbing any nutrition even though they eat like a horse. It wouldn't hurt to be tested. We've had a number of people on this forum either diagnosed as celiac OR possible issues with gluten intolerance.

[kclynn]

I know how difficult this is, my son has had acute phases of nausea where he ate almost nothing for days and yelled at me if I tried to get him to eat. As Christy said, milkshakes or something. Can she choose and they have calorie guides? If so as others have said, maybe outside food could be brought in as long as they can note it.

Yes, the celiac testing might be a good idea, also.

[Yolaclover]

Has she been tested for celiac? It could cause a person to have the gi symptoms, be malnourished, and thus a continually low body weight because they are not absorbing any nutrition even though they eat like a horse. It wouldn't hurt to be tested. We've had a number of people on this forum either diagnosed as celiac OR possible issues with gluten intolerance.

I wanted to ask the same thing! It could be a celiac crisis!!!!

[rmlyonsfamily]

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.

[Libby]

I really hate to have to say this, but the doctors are addressing things that need to be addressed. I'm not saying that Kay has an eating disorder! Just that many symptoms of POTS overlap. That, combined with the lengths the patient will go to to protect it and how many parents just can't see it, makes anorexia or EDNOS a very viable diagnosis from a clinical standpoint. It's more common than dysautonomia in teenage girls and as much as I hate that Kay has to go through all this, the doctors are doing the medically responsible thing investigating it.

It actually gives me more faith in them, that they'll figure out what's actually wrong. If you take a look around an eating disorder recovery forum, you'll find a lot of hospital horror stories where the doctors just don't give a sh*t, especially if the patient is not massively underweight (which is awful because you can be anorexic at at any weight). These docs seem to care.

Has she had a psych consult? That might go a long way in helping them rule OUT anorexia.