How involved are your children in their own health issues?

[ScootchsMom]

Basically the title says it all. Do you explain to your children why they are going to the doctor, what they are being tested for, etc.?

DD is having serious issues right now, and we are going back to the ped again this week. I'm planning on demanding blood work, especially to test for celiac disease. A close friend (I'll call her L) thinks that I should go in to talk to the doctor alone so that DD doesn't know what I am asking him. I think its a terrible idea and that DD should see that we can ask the doctor questions and are trying to find out what is wrong. L is older (60s), and seems to be of more the "children should obey" mindset, while I think, when age appropriate, they should be active participants in their own health and well being.

What are your thoughts?

[Sierra]

I'm a believer in involving kids in their health care, in situations similar to what you describe at least. These are *their* bodies. It is never too early to begin to learn to care for our bodies, to make decisions and advocate for our health, and so forth. Having grown up with serious health issues including a chronic disease, I can only imagine how much more scary, infuriating, and confusing my health issues would have been had people not been open with me about them.

I wonder if your friend is worried about a potential conflict with the doctor. Sometimes advocating does require agitating. Hopefully in that case it will be a positive experience of conflict resolution, but I suppose there is always the chance that resolution can't be reached and that unfortunate things are said. In the end, I still think it is important for kids to be part of conversations involving their own bodies, and if there is conflict, as long as you are in control of *your* response, your dd will learn important things in the process.

[JessicaS]

With dd I tell her exactly what is going on and why.

Once she cut her hand and she said "will I need stitches and I said "yes" she said, "Is it going to hurt?" and I said "yes"

It gave her time to prepare. I held her hand and spoke to her the entire time and she was ok.

I also discussed allergy testing with her beforehand the fact.

If you are considering having some blood tests for your ds I would talk to him about it.

[sbgrace]

I think it depends on age. But I tell my kids what they can handle or what they need to know at whatever particular age. Example: My son doesn't need to know what his mitochondrial disease might mean for him in terms of life expectancy right now. But he does know his body can't use fat and that's why he eats differently and takes medicine to replace what his body doesn't make. My son with anaphylaxis knows nuts can kill him because he needs to know that. I tell my kids what to expect in terms of testing honestly and I tell them why in age appropriate content of course.

[neetling]

My daughter has been in the hospital several times for a vomiting/dehydration problem she has. Her pediatrician thinks it's cyclic vomiting syndrome. We're seeing a pediatric GI specialist this coming week for it. I tell the truth. If I know there will be a blood draw I will answer yes if I am asked, but I won't volunteer the info if I know needles are involved. It causes her too much anxiety (which can worsen her issues) She knows what will happen when we end up in the ER when she gets dehydrated.

I let her make some decisions after giving her the options. (like the hospital needs urine, I tell her she needs to give them a sample or they will insert a catheter and described what that was) She's started fighting recently when a blood draw or IV or other invasive test is done. That sucks, because I feel like she should have some say in her care, but the fact is she needs the IVs for fluids and medications. It feels so awful to have to help hold her still while she fights them.

I always ask that any care giver tell her what things are and what they are doing. I think knowing is better than the fear of what is going to happen.

[SunshineJ]

Absolutely I tell them as much as is appropriate. I'm not out to scare my kids or anything, but if I feel it's something they can handle then I tell them. If nothing else, it's teaching them about medical issues, what to worry about, what's no big deal, etc. DD has a milk allergy, and while thankfully it's nothing fatal, if she has something made with cow's milk she does react. She's fully aware of this and I've seen her self monitor by asking if something has cow's milk in it and actually politely refusing to eat something that does. I've also seen her weigh the effect vs. what she's being offered (ice cream is her downfall) and if it's on a Friday where she'll have the weekend to recover, I've seen her make the call on if she can have something or not. DS has ragweed allergies and we've taught him what he's allergic to. My in-laws thought that was just horrible - "he'll have an excuse now to not do things". I don't get it, if your kid's allergic to poison ivy, wouldn't you want them to know what that looks like?

[ann_of_loxley]

Pretty darn invovled. If something is up - I tell him (you know, this hurts because of this). I give him the options of how to 'fix' it as well (if you take this, it could really help make it not hurt). At the end of the day, I leave the choice with him. We use a lot a homeopathic remedies because of this - and that is why we started using them as well. I didn't fancy holding a screaming child down to force medicine into them that they clearly did not like or want. As of 'need'...well in all honesty, you know how that can vary from person to person - we all do our research (well I hope we do!) and come to our own conclusions about what works best (for example, we don't use antibiotics - my son would not take these anyhow! - now that dosn't mean that someone somewhere - like the doctor or dentist - has never felt that he didn't 'need' them - we just choose not to use them and have found suitable alternatives that we are all happy with). We have had great success with homeopathic remedies (my son will happily take these most of the time - I trust him though. If he doesn't want to take them, then chances are, he really doesn't need them) and the whole family uses them now - we havn't turned back!

Now I don't have any experience with a child who has a cronic illness or condition - but this is what works great for our family!

How old is your DD? I also think that she should be invovled in this decision. Getting blood work done - espeically on small children - is no small matter! I know my son (4 and a half) would certainly not be happy with that - so chances are, we just would not do it. If I suspected he has something like celiac disease...then I would just start giving my child a diet to suit that and see how we go from there. That would be enough confirmation for me without the need of putting my child through that drama (that imo - I know would scar my son for life). I mean - unless you are talking about a 10 year old here?

[Alyantavid]

I absolutely explain everything to my kids. We don't see the doc except for illnesses. My oldest is prone to strep throat so when he needs to go in, I explain exactly what the doctor will do.

We also talk alot about food and how it keeps us healthy (or unhealthy).

I can't imagine how traumatized my kids would be should they show up needing to have blood drawn and have no warning beforehand.

[Jessy1019]

Absolutely I'd talk about it with my kids. I would have been terrified if my parents were talking to doctors about me, behind my back . . . I would have assumed the worst, probably by the time I was 4 years old but definitely within a few years of that.

[Peony]

To some extent. DD1 gets very anxious if she knows she is going in, hiding under tables, refusing to speak, etc... If she knows in advance then she won't sleep at all leading up to it, she has nightmares or just flat out refuses to sleep. She starts getting self-destructive, picking at her face until it is bleeding and raw, she is 7 so we are not talking about a toddler here. There have been times where I have booked her an appointment with DD2 and then if she doesn't know ahead of time, she will cooperate. For her, the waiting is the worst. I use that trick for a regular doc appointment, and when it is one of her different therapies, it just depends. She regularly does 5 days a week of therapy, that she is fine with, it is when we are doing something new that throws her off. Because she does have other issues, along with a anxiety disorder, I usually don't say anything until we are almost to our appointment. I traveled last winter across the state about 6 times for different evals and therapies, I didn't tell her the first trip what it was for, but then after that she was ok with going so she did know in advance.


DD2 is 3 and gets no say. It is just the way is has to be. She is not willingly going to consent to one of her numerous chest x-rays, she has been on inhalers for so long now that she is ok with doing them but if given the choice she will refuse of course. When she gets sick and has to do nebs, she hates them. She has chronic lung problems so we have been dealing with this her entire life and because she is in and out of doc offices so much, going in is not high on her list of things to do.


I have made appointments for my children, especially DD1, and not taken her along. In some cases, it was a requirement, when you are dealing with mental health issues and some things like OT, it is standard to do at least one intake appointment without the child there. We had one therapist once who would only speak to me in front of DD1, it was part of the therapy, it was horrid. She hated him and hating hearing us talk about her. I switched therapists and it was much better, after that we could talk quickly, a couple sentences about what happened that day was fine in front of her but a in-depth conversion is always done without her present.So after all that, it just varies from child to child for me and what it is for.

[boysmom2]

I think it depends. I generally share as much as is age appropriate. Recently I asked the ped to do some blood work on my 5yo b/c I was concerned that he seemed really run down for several months. I told him exactly what would happen and why, but I left out the worse-case-senario diagnoses running through my panicked mom brain. Turns out his iron was a little low, so we talked about what you need iron for and why you'd feel tired without enough of it, etc. Luckily everything else came back fine and he seems more energetic again. Now he asks me how much iron is in each of the foods he eats and gets excited about it.

I have a friend who was concerned that her 8yo ds was too short. She had that conversation with the ped without him there since she was worried about making him self-concious about something that may or may not have been an actual problem. In that case I can totally understand leaving your dc out of it. If he needed meds or something, she definitely would have explained it to him, she just didn't think he needed to worry for no reason.

I have never had a child with any serious or chronic health issues, but this is how we've handled what we've had.

[ScootchsMom]

Thanks for all the replies. DD will be 5 in June. She has been having some pretty sever stomach aches, itching, behavioral problems and now last week her hands and feet keep going numb and her hands are ice cold all of the time. She's also lost weight recently, has extreme exhaustion despite 12 hours a night of sleep and sometimes a nap and just looks pale all the time. I'm at my wits end.

She needs a full workup basically to find out what is going on and its going to require blood draws. We are specifically requesting the celiac test since it seems all of her "unconnected" symptoms actually fit celiac.

[MJB]

I explain everything to my children. Luckily they haven't had any serious health issues but I believe I'd still want them to know what was going on. Also, when they are in a lot of pain (like when my 7yo had an ear infection a couple weeks ago) I give them the option of taking ibuprofen. They usually choose not to take it out of some innate distrust of medicine.
Also, my kids are unvaxed and I've discussed the pros and cons of vaccination with them.

[moonlitemama]

I explain everything to my kids. We went through the whole process of celiac testing, gluten & casein intolerance testing a couple of years ago. I think it was much easier for them to be involved in the process, so that when we found out their diets did have to change drastically, they had some preparation for it.

It definitely does sound like your dd's issues could be celiac or gluten intolerance. Please realize that even if she doesn't test positive for celiac, she could still have a gluten intolerance. All three of my boys and myself have gluten intolerance (the youngest and myself tested negative when we tested for celiac; the other two were not tested specifically for celiac). For our gluten and casein intolerances, we tested through Enterolab. https://www.enterolab.com/Home.htm They test from a stool sample. You can contact them directly rather than going through a doctor. Also a bonus if you run into a doctor who dismisses the idea that it may be celiac (I ran into a few, myself, when I was trying to find a diagnosis.)

Good luck finding your answer! I had most of the symptoms your daughter is dealing with before I changed my diet. I have my energy and health back.

[ScootchsMom]

We're back from the doctors. I managed to get the head ped who was highly recommended and he took my concerns very seriously. DD has lost over a lb since 5 days ago and its was 2 lbs in the 3 weeks before that that, so the continued weight loss got his attention.

We got the blood work done and I explained to DD on the way to the lab what they were going to do and why. No freak outs, and the staff was amazed that she didn't let a single peep out when they stuck her. I can't imagine not explaining to her why she was having blood taken.

We got the celiac test, CBC panel, H. Pylori and a few other things he requested. He also ordered an abdominal x-ray.

[JL83]

We share things to do with physical health.

But, when we had concerns about DD1's mental health, we made an appointment for DH and I to talk to our GP and then brought her in the next time. Since anxiety was one of our concerns, we wanted to be able to talk freely with the doctor without giving DD more to worry about. I will probably choose to talk to the doctor without DD about mental health things until she's at least school aged and maybe older. It will depend on how she does.

[One_Girl]

My dd hasn't had serious health issues, but she has had shots and we always play games about it and talk about what the shots are for before she goes. She also had to have surgery and we read books and talked about the surgery process. I think that kids need to know what is going to happen, why, and whether it will hurt or not. They also need a chance to work through their worry or fear. Playing games with stuffed animals and pretending to do the same thing to them can ease a child's fear depending on the child.

[Sierra]

Did they do a finger stick on the spot as well, for blood glucose? Especially with that degree of exhaustion and weight loss, I'd expect they'd see some urgency in getting a quick glucose value before everything.

[ScootchsMom]

Originally Posted by Sierra

Did they do a finger stick on the spot as well, for blood glucose? Especially with that degree of exhaustion and weight loss, I'd expect they'd see some urgency in getting a quick glucose value before everything.

No they didn't. I didn't even think to ask for one, diabetes didn't cross my mind for some reason.

The nurse called earlier and said that her regualr blood work all came back fine and that the x-ray shows she is a bit constipated. So now they want us to give her miralax, but I'm trying natural remedies first - apple juice and magnesium supplements. I don't need to compound her problems by giving her a laxative right now

The celiac test takes 2 weeks to come back, so until than we're in no man's land.