Okay I have a question

[LittlebitsMommy]

Okay I have a question Update added

I have a question and I am afraid it is going to sound really stupid but here goes. Can you have a HIGH heart rate because you are not active? I have never heard that before but I am not sure. But was told that yesterday about Kota. I was told his heart rate is still high becasue he is not as active as he use to be. Can that be true.

I am so tired of having one dr say one thing and another one say something defferent

 

[imaboveitall]

Athletes typically have low resting HR.
So theoretically that would seem that an inactive person would have a rapid HR as the heart must work harder to pump effectively. This applies to RESTING HR.

But in Ko's case, from what you've posted, I feel his tachy HR is from unchecked inflammation, anemia, or something else disease related. Inactivity itself isn't enough to cause a HR to go as far above normal as you have described.
If his resting HR is high, that's significant. If it's normal at rest and elevated w/activity, that's less concerning.

 

[DustyKat]

No dumb questions here LbM!

Julie has laid it out beautifully...Your heart shouldn't be high just because you are inactive. There is a vast difference between a resting and active heart rate but that doesn't cancel out a "normal" heart rate. If your boy's heart rate is elevated at rest then it isn't because of that, it would likely be because of infection/inflammation, anaemia or pain.

Dusty. xxx

 

[LittlebitsMommy]

Okay thats exactly what I was thinking. They finally got him in to pain management yesterday and I wish we would have never went :ymad:

First off they were getting his medical history. Why when they are looking at it on the computer. I let them know of his kidney disease of Hypercalcuira. I then get told No he doesnt have a kidney disease they are looking at his records. Uh okay then why for 8+ years have we been told he has one. As soon as I got home I was on the phone with Nephrologist wanting some explainations. I was told they had no idea where PM got their info because it clearly shows on his record that he has this disease for years.No he isn't on medication for it becasue I have always been able to keep it under control with diet. But that he does have it. Nephro nurse is usually who I vent to.

They then told us he needed to be doing everything he was doing before he got sick. His Crohns must be alot better because and under complete control since he isnt on the steriods anymore. Uh yeah you are right he isnt on them anymore but no he isnt any better. GI had no idea how long he was going to be on them. I am the one that asked Gi at Sky appointment if he wanted Kota on them until his next appointment in June. Because thats what release papers from hospital said and he said no just wean down to 5mg and then off after week on 5 mg. So Gi may not even realize he is off of them.

I then let them know that cardio thought the high heart rate was from his pain being so high and they told me NO it wasnt. His heart rate was so high because he isnt active anymore. Said he needed to start doing everything on his own and not ask me for help with anything. This bothered me them saying that. My heart broke when we got home and Ko told me he was so sorry for being sick. And sorry he had to have me do things for him but I was the only one he trusted. Now we have had a couple of Dr say limit his activity as long as heart rate is so high and then we have a couple that says he should be doing everything. So I have no crap frappin idea what to do.

Then they decided that they wanted to do some physical stuff with him. Didnt want me in the room but I said I wasnt leaving because I had already promised Ko I would be there with him the whole time. Ko had already asked several times mom they wont take me from you will they. Thats the part he hates the most. They did alot of stretching, pulling, have him lift this and that. Sit ups, push ups, jumping jacks and oh so many other things. He starts telling them he is tired and hurting and cant do anymore and they tell him yeah you can do a few more. I kick myself in the ass because I didnt make them STOP when he said he was hurting so bad. He cried himself to sleep last night in my arms because he was hurting so bad from everything they had him do. They said he needs physical therpy 1-2 times a week. Because they think he has tried to protect his stomach for so long that now he hurts other places. Said he has had to deal with stomach pain as long as he remembers because they asked him and he told them that. So they said it looks like he is doing a good enough job handling his stomach pain.

So we really didnt figure anything out. Just made him feel worse and me more confused then before. Didnt know that was possible.

After leaving that appointment we had to go have labs redone. He had them done on Monday. He had them done on (4-20-12) AST 16 and ALT 33. Labs Monday (4-30) AST 35 and ALT 86. We are waiting on results from yesterday. Everything else on labs looked good Other than (4-20) his Lipase was 6 and normal is 7-60 and (4-30) RDW was 16.3 and normal is 11.0-15

 

[izzi'smom]

What an awful day for you...how terrible for them to push him so hard!
Hoping that the physical therapy helps...(((HUGS)))

 

[DustyKat]

Good lord...WTH! Poor Ko...:hug:

I would keep doing exactly what you are hun. Making him exert himself when he is in pain achieves nothing except to make things worse for him. Better they treat the root cause instead of bumbling about in the dark making his life a misery!...:yfrown:

Dusty. x:heart:x:heart:x

 

[Sascot]

That is such a shame. So sorry he is suffering - especially after going to people that are supposed to help him! I would get a second opinion about the activity, especially from the docs that told him not to do too much. Sounds like there's not alot of communication going on between the docs and PM.
Maybe it's worth getting a file with a letter from each doctor about what they recommend that you can take with you where ever you go?
As for the heart rate - I would have thought his heart rate shouldn't be high if he isn't active. It should be higher than someone who does alot of exercise but not high compared to a normal heart rate.

 

[imaboveitall]

Marcia, your posts always make me tear up a bit...you love that boy so much, it's obvious. :heart:

He sounds like he is suffering; emotionally and physically and that is painful to read about. Poor darling.
The day's events you described above are...plain wrong. Pushing a kid who is in pain...WTF. :voodoo:

And it sounds like they aren't addressing his symptoms fully. The tachy HR IS significant as it is happening at rest. A first year RN would know this, doesn't take a cardiologist to know a kid's HR isn't tachy for NO REASON.
V's was before dx, hers was from malnutrition and inflammation. It was consistently around 120-130 and all she was doing was lying in bed.
Their logic of it being due to his inactivity is flawed and I strongly urge you to investigate further. Don't let them blow him off.

Telling him he needs to do more for himself...I'm quite sure he would if he FELT BETTER again WTF :voodoo: Do they think he is faking?

It sounds to me like he has un- or underaddressed health issues they aren't taking seriously.
Thank God he has such a caring mother because it sounds like his med team is...less than stellar.

HUGS, girl...:kiss:

 

[Tesscorm]

Thank God he has you! OMG, how awful that they made him feel worse! I can imagine how that hurts you too!

Are all his doctors from the same facility (i.e. hospital)? Is there any 'patient relations' department or someone who can help coordinate the care? If not, (and others, please chime in if you think this is a bad idea!!!), I would write one letter to ALL involved doctors explaining your situation... these are Ko's symptoms, this is what I've been told (and list all the contradictory advice without any accusations), explain that you are confused and concerned that Ko's care may be suffering because of the confusion, ask how the confusion can be alleviated, express that you want to ensure that all of Ko's illnesses/treatments are coordinated and, again, ask how you can help with that... I wouldn't make it a nasty letter 'complaining', just an honest explanation of where you stand and your concerns.

Dusty, Julie - would this be a bad idea within the 'medical field', copying different doctors on the same letter??? Would this be a bad way to approach this?

Marcia - I'm just suggesting the 'letter' this because I can imagine your frustration in getting contradictory advice, one doctor not coordinating with another, etc. and the worries of that!

 

[crohnsinct]

Wow! I am new here and have been pretty self absorbed lately but just emerged to catch up on some others.

Your story is heartbreaking. I can't imagine going through what you and Ko are going through. He is so lucky to have a mom as caring and diligent as you and it is clear from his concern for you that he is an equally loving and caring person.

I have no advice as it seems the experts here have it covered. Just wanted to send some hugs and well wishes your way.

 

[DustyKat]

Dusty, Julie - would this be a bad idea within the 'medical field', copying different doctors on the same letter??? Would this be a bad way to approach this?

Food for thought Tess.

I think if it were me I would formulate one generic letter with no names mentioned within the body of it, but like you have suggested include the contradictory advice you have been given and how frustrating, confusing and difficult this is for you and then address it to each individual doctor.

Dusty. xxx