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delvalle6

VR.org Supporter
Supporting Member
Joined
Aug 1, 2006
Messages
122
Location
vancouver, wa
**sigh** I can't tell anymore if I am taking note of symptoms or if I'm seeing symptoms I know to take note of.
Sometimes I look at my son and he seems normal, just hangin out playing video games--happy. Other times I realize he hasn't really played in hours, and when I ask him to he tells me how tired he is, curls up in my arms and tells me he loves me.
He seems tired all the time- but am I just focusing on it? Or is it really a problem... his doctors don't seem like they are in a rush to do anything.
Is it normal that he has become clingy these last few months? Is it a phase? or does he just sense there is something wrong with him and needs extra attention...
He's been asking (just the last week or so) to sleep in my room... and when he comes to my room, of course his twin does too (makes a real tight space to sleep in btw)

So, am I crazy? Should I try not to see the signs? Am I seeing signs because I fear them? Am I ignoring signs because I think I'm imagining them?
 
I found with my husband, who had heart problems since he was a teenager, that he really could not tell when he was feeling poorly. He had so many medical problems, that he developed a very high threshold for pain and discomfort. He was also an athlete and learned to "play through the pain". So he rarely complained about anything, even when others would have been going to the ER days prior. When I asked him or his doctors asked him how he was feeling, he would say, "Compared to what?" I used to think it was his little joke flip answer, but what he really meant was that he didn't know what it felt like to be normal. And he really did not know how he was feeling.

So I had to learn to evaluate him by how he looked, how he acted and it wasn't easy.

I think your son may fall into this category. He doesn't know what normal is, and he might not be feeling well, but expresses it by staying close to you, because he's really not sure about how he is feeling. I think your observations are much more important than you think.

I hope this makes sense, it's hard to express clearly.
 
Thanks. I guess I am afraid of over reacting. He's such a calm, sweet boy- but he used to be so much more active. Out of my four boys Sammy and his twin Giovanni have really slowed down. Giovanni sticks to Sammy like glue. Sammy has just become so affectionate recently that I don't know what to think of it. If I sit down for even a second he is either next to me or on my lap. It's the only time Giovanni will leave his side. I love the attention- don't get me wrong- but I feel deep down it isn't just because he wants to give it to me but that he needs something.
I am paying attention- but don't want to make something out of nothing. It's kind of frustrating because I just want everthing to be ok- but I also don't want to miss any important signs. It's like an internal conflict that I can't seem to resolve.
 
My (totally NON-Professional, NON-Qualified) GUESS is that something is bothering him and he is seeking security / reassurance that he will be OK.

I'm wondering, when was his last EchoCardiogram?

I see from your profile that you work in a Cardiovascular ICU unit. Are you a Nurse? or do you have any sort of medical training? (just curious).

I'm inclined to believe your MOM instincts.

'AL Capshaw'
 
He seems tired all the time- but am I just focusing on it? Or is it really a problem... his doctors don't seem like they are in a rush to do anything.

Please don't wait too long for surgery. I also was fatigued and and had severe leakage in my aortic valve. My cardiologist at first didn't emphasize my condition and when I was finally able to have surgery my heart was weak enough that it turned a routine surgery into something that my survival was touch and go.

Whatever you decide, my thoughts are with you and Sammy.
 
Al- I'm a unit specialist--albeit a well educated one. I used to work in the ER, but I moved to this unit in March. I am not a nurse or physician, but I have been studying Congenital heart defects for seven years. Funny, but I now understand why doctors don't usually treat their own family members. Because if you are too close to it- you don't see it clearly.
I have always been one of those people that puts medical things off---not for my kids mind you, but for me. So when I get these feelings like something is really wrong and needs attention, but don't have any concrete evidence, I get confused.
I can never tell if I am being the over-excited mother or the observant medical personnel. It's driving me a little crazy.
 
I know being the Mom of a "heart kid" can be somewhat of a balancing act in many ways, what you let them do, or push them to either be more active or take a rest, how much attention to pay and look for symptons so you don't miss something but where to draw the line and not be hoverring and annoying ect. When they really ARE tired or maybe they just don't want to do something ect. and on and on it goes.
I know every kid is different and even ever kid with the same CHDs history is different, which is why the good doctors listen to what the parents are saying since they are with their kids most of the time and know what is their "normal baseline for them and what is different and could be a problem.
Justin is 21 now,(and alot like Nancy described Joe) but i still notice when he seems more tired, gets paler and circles under his eyes, but the changes can be subtle, so I have trouble, figuring out if he is paler because it is winter or more tired because he just did alot. OR if he is just bored so laying around playing video games, napping more.
Is Sammy in an activities? Just played sports thru school and was in Scouts ect, and it was pretty normal for him to sleep one whole day a month even when his heart was as good as it could be (after surgery or intervention cath) but when he would be needing surgery soon, he pretty much slept alot , almost crash and as soon as he sits down he falls asleep anywhere. (he works as a stage hand and his friends laugh that he can fall aseep back stage with a huge concert going one around him)or if he turned down something that I knew he loved to do because he just wanted to lay around that was a red flag to me. and Justin never realized just how tired he was, but I could tell if he was acting moody or cranky, he was over tired, so would ask him to watch a movie with me and 5 min into it he woud be sound asleep. and a couple hours later when he woke up he'd be a new kid. On the other hand IF he didn't have anything to do or was bored, which honestly when he was younger happened more in the winter, when he wasn't outside all day playing like in the summer, he sleeps more often or lays around playing video games, so it is harder deciding, if it is just normal kid thing, or his heart.
I know Sammy had that stress type test the other day how did that go? Altho even IF he had great results, it might not mean all is great, Justin did great on stress tests, when his pulmonary stenosis was very bad, sometimes since they deal with their heart issues their whole life, they get very good at compesating. So the stress test is just 1 piece of the puzzle, usually Justin needed surgery or intervention, based on his echo, but sometimes when I think he doesn't seem "right" I have moved up his appts and he has always needed either surgery or a cath to balloon his conduit ect.
As for the clinging, I don't know if he is just going thru a loving mom phase, or doesn't feel good, or maybe even he can tell you are worried, so he thinks something must be wrong with him. I wrote alot, but probably haven't been much help. I'm sorry but there just aren't any clear cut answers and really you can drive yourself nuts trying to make sre you aren't missing anything but also want to make sure your child can live a happy and as normal childhood as possible.
 
Lyn, I read your post. I know.. there is not a concrete answer. I guess I just hope I'm not crazier than the next heart mom. I don't know. Sammy used to be very active. Just not this year.. well, actually, just since summer. He rests most of the day all day. He watches a lot of TV and plays video games, but getting him to excercise is impossible. My boys do an hour of excercise daily (in the winter) because it gets to nasty outside-- and I made sure to get a bigger home so they could run inside.. and I encourage them to run and play hard. Sammy just hasn't wanted to since the summer. To be honest, I don't think he can anymore.
Yes, he just had the test- I haven't seen the results from the MRI study yet. He has a stress test scheduled in January, but the last time he jumped off the treadmill. Later he admitted to me that he just didn't want to feel bad.
There is a part of me that wants to push the issue- and there is a part of me that wants to deny that he needs surgery. honestly, I go back and forth. I know he needs it, but it is easy to slip into denial. I don't believe the doctors are paying enough attention to his symptoms, but it is easy to accept that they are not moving quickly. It makes it feel less dire.
I read your signature and can't imagine what you must have been through. How do we keep our sanity? I'm starting to think I am losing mine.
The people around me are pretty clueless about how I feel. If it weren't for this forum, I would just be crazy by myself and no one would ever know.
 
I noticed that your son takes digoxin. Has his doctor checked out his dig levels? Joe had problems several times with inappropriate dig levels and it can make you feel just terrible. Might be worth a blood test.
 
I can relate, Justin has another surgery coming up Jan 19, and I think If I am so tired of it(surgeries or caths every other year) I can't imagine how Justin handles everything so well. Is there any team sports or activity Sammy and his twin would be interested in? It doesn't have to be stenuous, even something like bowling or scouts where he is getting excersie but having fun, if you are talking about actual excercising, and not playing, I know I would have had trouble getting Justin to do that, but I always had him doing active things.
BUt I was thinking since he likes to play videos all day, have you considerred getting a WII? and see if he could do that it could probably give you a good idea of what he can do, especially if it is talked about as having fun, not excercise.
As for the stress test..thats tough if he just jumps off. Maybe you could explain to him that he has try his best because the doctors need the results to see if there is something they can do to make him feel better and not always tired, not even menitoning surgery, but maybe a med he could take. and explain if he won't at least try, the doctors won't know what is going on so won't be able to suggest things to make him be able to play more, have more enrgy ect.
I know you've mentioned not having fatih in the docs before have you gotten any second opinions, If I'm remeberring it right you might have been talking about contacting some other doctors last summer.
 
Lyn
I had a second opinion about 18 mos ago.--but then my husband was laid off and so we had to revert back to my insurance. What I am working on now is a second opinion from a surgeon. It just takes forever though.
I thought about a wii. I actually worked on the 25th in hopes that my check would be big enough to get one- we are ok financially, but since my husband has been laid off for so long the extras haven't really been an option.
Sammy used to play soccer and basketball with his brothers. He also used to ride his bike a lot. This summer he didn't do any of that. I've been thinking about enrolling them in martial arts, but that darn money obstacle pops up again. We don't owe anybody anything- no credit cards or car payment, but my income pretty much covers the monthly bills and food, clothing (which boys grow out of shoes like crazy) and a few small extras here and there- plus copays for medical and dental.
As far as the stress test goes- I already spoke to him. I told him that we would just keep trying until he did it. He said he will try- I'm not sure I believe him though. We'll see.

I am sorry to hear that Justin has another surgery coming up. You must be a very strong woman to go through all that with him. As a mother, I worry about what my son is going through-- as a medical professional I see how much harder it is on the family than the patient. Just imagine if you were the patient and he was the family member. You would be strong for him, reassuring... and probably still more worried about him than you. So as a mother- you just can't win ;)
Thanks. your responses really help.
 
Nancy,
Sammy is on the lowest dose of digoxin possible because of his size. He is also on the lisinopril. I don't think that is the issue since his dosage has never changed. Just the same, I did have his kidney functions tested in October. Everything was normal- blood count, kidney, liver functions, and glucose. I asked and they said that on such a low dose they don't actually do a dig level. Great suggestion though!
 
IMO, this response is negligence on their part 'on such a low dose they don't actually do a dig level' and is doubly important in a child. My late Mother had many health problems including CHF, and COPD with continuous oxygen administration, and she was on lanoxin ('dig'). She was a very tiny lady, and despite best of medical intentions, she would sometimes become overdosed, presumably related to the less than optimal body processes of extreme age. Do not let them blow you off on this, insist on checking that 'dig' level!!!!!!! Her final decline resulting in a hospitalization from which she never bounced back, in which I returned home from work to find her gray, hypoxic, hypothermic and needing a 911 call, IMO was related to one of those inadvertent overdoses, as her 'dig' level was way higher than it should have been per the various blood chem panels run on her at admittance.

I would recommend very strongly reading the precautions section of this site:
http://www.druginfonet.com/lanoxin.htm
Jeanie
 
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I was just going to say what Jeanie said. In a child, it is even more important to check the level. Even though he is on a tiny dose, it could cause problems for him if it was more than his system could handle. The doctor's response does not seem realistic. It couldn't hurt to have the level checked out, to see if it is appropriate for his size and age.

Here is a good article.

http://health.nytimes.com/health/guides/disease/digitalis-toxicity/overview.html

Please note what is said under causes, "Digitalis toxicity can be caused by high levels of digitalis in the body, or a decreased tolerance to the drug. Patients with decreased tolerance may have "normal" digitalis levels in their blood."

and this under Prevention "Digitalis blood levels should be monitored regularly if you are taking digitalis medications. Blood chemistries should also be monitored to detect conditions that make digitalis toxicity more common."
 
I am glad Nancy chimed in too. I just remembered something from the website I quoted, and something that my Mom's Doctor also had mentioned, that fluctuations in potassium and calcium levels can interplay with 'dig' levels. Because the drug takes more than a day to be cleared from the body, assuming normal renal function, that is why it sometimes also is given on an every other day schedule. I recall that my Mom had such a differing schedule, different dosages on different days. She remained mentally sharp right up until the end of her life, (except for the rare hypoxic event) and even kept a daily journal of what meds she took, at what time, etc. Is that something you are doing to keep track of your Son's med schedule too?

Jeanie
 
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So, am I crazy? Should I try not to see the signs? Am I seeing signs because I fear them? Am I ignoring signs because I think I'm imagining them?

It seems to me that it is very hard to figure all of this out. At least I haven't been able to. Almost three years ago (right after surgery in Feb 2007) it seemed pretty simple, but my numbers are getting worse - and because of the interaction between what I feel, what I fear, and what others expectations of me are -- it seems like I can't find a place to evaluate what's really happening. All of these things are interrelated and feed on each other.

Am I more tired than I was in the past? When I am out of breath at the top of a flight of stairs - is it normal? Will it limit what I can do? Do I tell my wife? When I do, does she change what are plans are? and so are limits implicitly set and implicitly accepted? And then when I'm not as active as before is it because of the implicit limits or real limits? And does it set a series of other expectations and limits.

It's more than enough to drive me to distraction -- and I'm sure you feel the same way. I'll include you in my prayers, because that's all I have to offer. I'm not sure that there are any other answers.

I think that maybe the best we can do is to just live our lives as we wish, until we can't.

Traveler
 
I do keep a log. And as a matter of fact I am starting a "medical journal" for him to carry with him throughout his life. I am getting all of his records, CD's of echos and his MRI and putting them together in a binder. I track his labs, meds, and symptoms. I have a weekly journal (because I would be even more obsessive if I did it daily) with notes on how he did throughout the week, was he tired or active... his overall mood, the weather (just in case there is a correlation) etc.
I'll ask again about the dig level. The last time I requested on they just did a basic chem a complete blood count and a thyroid stimulating hormone test.

Traveler-- than you for your thoughts!
 
Blood chems can tell a lot. So it's always good to have one done when there is any doubt at all. I hope everything turns out just fine for your little guy.
 
Did the 2nd opinion say anything different than Sammys regular ped card, or did they suggest the same plan? I 'm pretty sure we've mentioned many of the larger CHD centers willgive 2nd opinions from the childs records, disks of tests ect for free, is that how you got Sammy's 2nd opinion I can't go back and look, but did you say you got one from the same group of doctors? if so I would definately contact a different center. I know many centers have a round table where all the heart docs discuss a patient and come up with a plan, if it was a case like that, I only count that as 1 opinion for Justin

I'm a little confused on the dig too. When you said he is on the lowest dose possible because of his size, how long was he on that dose? Is there a chance he isn't toxic, but since he is 7 he might have outgrown the dose and it isn't doing any good, if that is the case, why is he even on it? Justin was on a very small dose for the fitrst 2 years of life, starting when he was 4 1/2 pounds, he always had to have levels done because he was growing and kept needing his dose upp'd, the plan was all along after his 2nd surgery at 18 months when he had his TGA repair, to see if he even needed it any more, so they kept the dose the same as long as he was doing well and kept testing and gradualy he had outgrown the dose so they stopped it. So I'm not sure why Sammy's was prescribed, but IF nothing has changed and he still needs it, I'm not sure how they know he is getting enough to help him, without testing

last thought, Justin played all kinds of sports, teams ect and yes martial arts is one of the ones that is more expensive, unless you live close to a YMCA, sometimes you can find classes there that are less expensive than private groups, altho even there you have to buy the uniform ect, ontop of the fee.
Does your school or town have any teams Sammy or your other kids would like to play? usually they are more reasonable/free. Also Justin used to love Scouts because they were always doing different things all the time, one thing that worked out well for Justin with his heart and Scouts is, he had a couple surgeries, caths, BE while in Scouts so during the time he couldn't be more active, he could work on the other badges and at least wasn't sitting around being bored, and when he was feeling great after surgeries, stents ect he did alot of the more active type badges, and Scouts didn't cost alot, but if you couldn't afford it, their where programs so everyone who wanted to could join. The only reason I mention all these activities, is it was easy to see IF Justin was really tired or just bored so laying around, I noticed since he is out of school and not on teams ect, it's harder for me to judge how he really is doing, unless he is working alot of hours, sometimes, he is just commy playing video games and kind of gets in that habbit, butt it has nothing to do with his heart many of the times.
 
ps lol. Have you joined any of the groups for parents of kids with CHD? Sometimes it is easy to forget that alot of the criteria for surgery is different for kids than adults
they may be putting surgery off a little longer to give the kids as much time to grow and get bigger valves and other parts and to cut down on as many surgeries thru out their lives. and there aren't as many trigger numbers like with adults with full grown hearts, for exqpmly a 5 aorta, since the hearts are much smaller and still growing they have to take alot of different things into consideration including how the kid is doing.
and sometimes it helps to find out what other parents notice or have been told to watch for which is a little different than adults who for the most part are better at describing how they feel or notice when things seem different, unlike kids who often don't know what it feels like to feel "normal". Justin was already pretty old, when they started having online (or in person)CHD groups and there weren't many older parents, but I know alot of the parents of younger kids who are members these day when there are so many other parents that are going thru the same thing or have gone thru it, seem to really feel better when they talk to them.
 

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