Home If you child''s doctor thought your child had a chronic condition...

[LtlFirecracker]

But was not completely sure, would you rather them tell you even it if means you might worry about nothing? Or would you rather the doctor wait until all the information had been gathered?

 

[TravelingGal]

Date: 2/6/2010 3:52:39 PM
Author:LtlFirecracker
But was not completely sure, would you rather them tell you even it if means you might worry about nothing? Or would you rather the doctor wait until all the information had been gathered?

What wait time are we talking about? A few days, weeks or months?

 

[LtlFirecracker]

Date: 2/6/2010 3:58:18 PM
Author: TravelingGal

Date: 2/6/2010 3:52:39 PM

Author:LtlFirecracker

But was not completely sure, would you rather them tell you even it if means you might worry about nothing? Or would you rather the doctor wait until all the information had been gathered?

What wait time are we talking about? A few days, weeks or months?

Oh, 1-2 weeks at the most

Of course if the diagnosis is so time sensitive that I have to transport them to the city, I tell them why right away.

The case that made me ask this question was "abdominal pain" that ended up being IBD.

 

[mayachel]

Depends on the condition and the course of expected care and life quality. The more involved, the more sure I''d want my provider to be before mentioning it.

Not peds related but, I had a doctor once postulate that she thought I might have ovarian cancer but would need to do some other tests to rule it out. It was not stated as "among other things we are ruling X out" but "You might have ovarian cancer, though it might be something else". Via voice mail.

Oh, and of course that I couldn''t come in for a follow up for about 4 weeks

Long story short, I didn''t have anything nearly so severe as or life altering as ovarian cancer (at 22yrs old!). She put me through a few YEARS of fear and doubt about what was wrong with me till I finally switched providers.

 

[TravelingGal]

If it''s 1-2 weeks and critical, I might want to wait. Hard to say. If I was told in advance of a final diagnosis, it might give me time to prepare, but boy, it would sure be a lot of worry in the meantime.

 

[Bella_mezzo]

Would them knowing change the treatment in anyway? I would only want to know if it would change the course of treatment in anyway (including me remaining with my child 24/7 if it was a critical life-ending kind of thing). other than that, I wouldn't want to know unless it was for sure.

I had severe migraines in HS/college and after an MRI when I was 17 or 18 my parents and I were told I might have an aneurysm...I didn't quite realize what a big deal that could be...my parents were a mess for the 4-5 days until it was confirmed that I in fact had nothing of the sort...

 

[Kaleigh]

I''d want to know. That happened to us with DD. They thought it was bone cancer. Took her to CHOP in Philadelphia, where we found out it wasn''t bone cancer but was juvenile Rheumatoid Arthritis.. Early detection of the JRA enabled her live a normal life. If it had gone undetected, sooooo many things could have gone wrong with her. Including her vision.

 

[mayachel]

Another story- a midwife I read recently talked about how she attended a homebirth with a mom who had refused an amnio during prenatal care. The baby was born healthy and well but the midwife noticed some minor features of Down Syndrome. They were so slight, and obviously a visual is not all inclusive of a Dx so she chose to make note of it in her charts knowing the mother would be seeing a pediatrician in two days. The pediatrician and the midwife collaborated with each other in terms of how the pregnancy and birth unfolded and then were off and running with testing. A short time later, the baby was officially diagnosed with down syndrome. The mother asked the midwife if she had known at the birth, the midwife replied she suspected it but couldn''t be sure. The mother thanked her for not saying anything then because it allowed her the opportunity to bond with her child, as simply her child instead of through the eyes of knowing how his life would be forever different than most children.

 

[elrohwen]

Date: 2/6/2010 4:12:48 PM
Author: Bella_mezzo
Would them knowing change the treatment in anyway? I would only want to know if it would change the course of treatment in anyway (including me remaining with my child 24/7 if it was a critical life-ending kind of thing). other than that, I wouldn't want to know unless it was for sure.

I had severe migraines in HS/college and after an MRI when I was 17 or 18 my parents and I were told I might have an aneurysm...I didn't quite realize what a big deal that could be...my parents were a mess for the 4-5 days until it was confirmed that I in fact had nothing of the sort...

I agree completely. If the 1-2 period wouldn't matter as far as treatment or care of the child, I would rather not know until things were sure. I wouldn't like to go through the "Oh, your child may have X serious disease. We'll let you know in 2 weeks." Of course, if telling me changes the testing that is done or how quickly things are done, then yes, I'd want to know.

Ironically, I had the same thing with headaches and getting an MRI. The doctor told me I might have brain cancer! Then after over a month I finally had the after-MRI appointment where he said I just had migraines

Luckily my mom was smart enough to realize there were no other signs of brain cancer, but I was fairly worried. He should've just said that the MRI was to rule out any possible issues and make sure my migraines were just bad headaches, *not* that I might have brain cancer.

 

[Mrs Mitchell]

This is a timely thread for me.

My daughter has been a little unwell recently, just not quite right. Bluish palor, some odd bruising, constant tiredness and repeated infections. Her Dr sent her for some tests, which were done on Thursday. It was when we got to the hospital with her we found out he suspected leukemia. I'm still waiting for all the test results, but from what we have so far, it looks as though she does not have it.

I would have gone out of my mind with worry between the referral (just over a week ago) and the tests being done if I'd known what the Dr suspected (although I also suspected it, because there is a family history of this disease in my family as well as DH's). She's ok - there's nothing to suggest the suspicions were correct, but we're still waiting to find out if there is something else going on.

I think on balance, I would want to know asap what the suspicions were, so that I could gather information about treatment, prognisis etc and have some mental preparation for the worst case scenario.

 

[LtlFirecracker]

Thanks for your insight. I see a lot of abdominal pain, and most of it ends up being nothing. This was a case where the child and parent gave me different histories and I had to figure out who was right, of course the child was. The child''s history actually had the "red flag" signs for abdominal pain, and the parent''s history didn''t.

To the question about treatment altering outcome, in this case waiting 2 weeks didn''t. If time to diagnosis does alter outcome, I move much faster, and am very upfront.

I told them a week into the workup because at that point I knew the patient would need an endoscopy and colonoscopy since my work up was pointing in the IBD direction. Most parents needs a good reason to put their child through that. What I didn''t do was take the time to explain there were two types of IBD to them. So Mom went online, read about Crohn''s disease and assumed I had totally missed that. But the nice thing was, I presented the history and my workup to the GI doctors and they were so convinced, they moved her ahead of the 6 week wait list, and scoped her three days later. So the parents didn''t have to wait very long for a confirmation.

I guess from reading your responses, I will tell the parents I need to do some tests to rule some stuff out. If they pin me down, I will give them my list but tell them at this point it is too early to say. Once I have a concern that the child has a chronic condition, I will tell the parents my concerns and have a plan for a definitive diagnosis when I tell them. I think what I will do differently next time is block some extra time to really discuss the disease I am concerned about so that they don''t feel like they didn''t get enough information, and than go online, and maybe see some stuff that freaks them out.

 

[jewelz617]

I''d want to know every last detail. I''ve been through this when they thought my daughter had a heart condition. I wanted to know everything about it, I was online 18 hours a day researching... ugh. Everyone told me I was just driving myself crazy but I couldn''t stop.

 

[lovinsparkles]

I think it''s great that you''re spending time thinking about how to best present difficult information in the least alarming way possible.

As for me, I would want to know the full story. I look at my medical providers as my partners -- that we''re figuring things out together. I would not want to a medical provider to hold information back from me because they decided I didn''t need to know it yet. I would appreciate a provider who was upfront with me (that here are the possibilities, that none of them are certain, and that additional tests are needed to confirm).

 

[purrfectpear]

Date: 2/6/2010 7:07:40 PM
Author: lovinsparkles
I think it''s great that you''re spending time thinking about how to best present difficult information in the least alarming way possible.

As for me, I would want to know the full story. I look at my medical providers as my partners -- that we''re figuring things out together. I would not want to a medical provider to hold information back from me because they decided I didn''t need to know it yet. I would appreciate a provider who was upfront with me (that here are the possibilities, that none of them are certain, and that additional tests are needed to confirm).

This.

I expect absolute transparency from all my medical providers.

 

[soocool]

To tell you the truth I wish we had never gone to the doctor about DD''s problem. It started in 2008 when she was having some anxiety issues. The doctor noticed that her chest was slightly sunken (pectus excavatum) and because of the anxiety issues (which btw are completely gone now) thougt an echocardiogram was in order. DD at that time was 15 so she had to see a pediatirc cardiologist at CHOP (echocardiograms are read differently for kids than they are for adults) for the echo. During the exam, the cardiologist comes out and asks if anyone in the family was ever diagnosed with Marfan''s. DH and I know of no one who has this genetic disorder. He goes on and says that I should consider getting her tested (by a variety of doctors ) for the possibility of a disorder related to Marfans called MASS Phenotype.

After he had given me this news I don''t know how I kept it together in front of DD. We talked to her gp about what the cariologist said and he really did not think she fit the bill. We met with an eye doctor who performed an eye test and her retinas were fine. We consulted a specialist about DD''s scoliosis (very slight about 13 degrees) and asked him about the possibility of MASS Phenotype. He did not seem to feel that she has this as well. The geneticist also could not find anything in our backgrounds or tests to indicate she would have this disorder.

Back we go to the cardiologist for another echo a few months ago a few weeks before DD''s 17th birthday. I tell him what the other doctors have told me. He doesn''t say anything, but wants to see her again next year for another echocardiogram and this time suggests we do a Haller MRI to see how much room there is in DD''s chest for her heart. Since we cannot get a definitive answer, does DD get an echo the rest of her life to make sure she does not get an aortic dissection or mitral valve prolapse?

I don''t really don''t know how seriously DD takes this and I still don''t know if I should. When DD is 18 she will then be monitored by a regular cardiologist and maybe we will get some better answers then.

 

[Dreamer_D]

I would want the doctor to tell me what tests they were running and why and to mention all the possibilities so that I knew it was still uncertain and that they were looking for a number of possibilities. I think telling them is only bad if you only mention one of the diseases or the worst one and don''t mention other possibilities, including the liklihood it is nothing. I also like transparency with my care providers. But perhaps we on PS are not the run of the mill patients, since we like to research ourselves. Many people have blind faith is docs and would not like to know. This coule be part of your intake interview, asking them about their preferred model of care and how involved they want to be. But maybe that is too much work

 

[Maisie]

Date: 2/6/2010 4:47:34 PM
Author: Mrs Mitchell
This is a timely thread for me.

My daughter has been a little unwell recently, just not quite right. Bluish palor, some odd bruising, constant tiredness and repeated infections. Her Dr sent her for some tests, which were done on Thursday. It was when we got to the hospital with her we found out he suspected leukemia. I''m still waiting for all the test results, but from what we have so far, it looks as though she does not have it.

I would have gone out of my mind with worry between the referral (just over a week ago) and the tests being done if I''d known what the Dr suspected (although I also suspected it, because there is a family history of this disease in my family as well as DH''s). She''s ok - there''s nothing to suggest the suspicions were correct, but we''re still waiting to find out if there is something else going on.

I think on balance, I would want to know asap what the suspicions were, so that I could gather information about treatment, prognisis etc and have some mental preparation for the worst case scenario.

I hope your daughter gets well soon. What a worrying time it must be for you. Prayers outgoing.

 

[icekid]

Ltl- I think there is a lot to what dreamer is saying. If her (adorable) little Hunter my patient, I would explain my thought process and how we were going to work up potential diagnoses. With less educated parents, perhaps less is more. It is important to assess the audience, I would say.

 

[LadyBlue]

Date: 2/7/2010 11:54:49 AM
Author: purrfectpear

Date: 2/6/2010 7:07:40 PM
Author: lovinsparkles
I think it''s great that you''re spending time thinking about how to best present difficult information in the least alarming way possible.

As for me, I would want to know the full story. I look at my medical providers as my partners -- that we''re figuring things out together. I would not want to a medical provider to hold information back from me because they decided I didn''t need to know it yet. I would appreciate a provider who was upfront with me (that here are the possibilities, that none of them are certain, and that additional tests are needed to confirm).

This.

I expect absolute transparency from all my medical providers.

+1

 

[Mrs Mitchell]

Date: 2/7/2010 5:31:25 PM
Author: Maisie

Date: 2/6/2010 4:47:34 PM
Author: Mrs Mitchell
This is a timely thread for me.

My daughter has been a little unwell recently, just not quite right. Bluish palor, some odd bruising, constant tiredness and repeated infections. Her Dr sent her for some tests, which were done on Thursday. It was when we got to the hospital with her we found out he suspected leukemia. I''m still waiting for all the test results, but from what we have so far, it looks as though she does not have it.

I would have gone out of my mind with worry between the referral (just over a week ago) and the tests being done if I''d known what the Dr suspected (although I also suspected it, because there is a family history of this disease in my family as well as DH''s). She''s ok - there''s nothing to suggest the suspicions were correct, but we''re still waiting to find out if there is something else going on.

I think on balance, I would want to know asap what the suspicions were, so that I could gather information about treatment, prognisis etc and have some mental preparation for the worst case scenario.

I hope your daughter gets well soon. What a worrying time it must be for you. Prayers outgoing.

Thank you, Maisie.