Is it REALLY Okay to Seek Medical Advice from Other Parents?

Lucy teh doc is inThere was a d-mom who was unable to be with her child who has diabetes.  The child was staying with her grandparents and her meter read ‘high’.  A second reading was taken, and ‘high’ came across again.  She, unable to get to where her child was, asked what should she do, or have the grandparents do?

As I read the responses, one thing jumped out at me and I wanted to open a dialogue to get your input, your feedback, and your advice.  I read 36 comments and in those 36 comments, only 12 stated for the grandparents to call the physician.  And in some cases they stated to try something first and if that did not work, to call the physician.

That was troublesome to me and I wanted to know how you felt?  For someone to come on-line and give about a four sentence synopsis of what her child was going through, it left me to wonder if it is right for the online community to think, without knowing anything about the details of this family, that it is okay to give medical advice?  Is it “universal’ to just start giving the patient water, adjusting an insulin dose, or to have them exercise, or to give advice because it works most of the time?

Is it okay to jump in and give advice based upon the fact that the mom was asking for it?

Is most of the time, every time?  I ask you; is that good enough?

But my day of calling the Doc is ‘yester-year thoughts’ and I wanted to know if it has become where the advice of ‘most of the time’ is a good start to be given by people who do not know your child at all, before the physician is called?  Has ‘my day’ opened to a different thought process because of all of the online communities?

This was not what do you think of a certain meter, or have you encountered ‘such-and-such’ in school and want to know advice; this was a child presently in a medical situation of a meter saying ‘high’ and asking for advice. Would you ask for advice?  Would you give advice other than call someone on the medical team?

It very well may be that it is an accepted practice with the speed of internet connections today but I was just curious if you, as parents, feel that this is okay?  Would/do you take advice from people you do not know, or know peripherally, when it comes to your child?  And I understand that in some cases, the medical team contacted, does not know the child all that well either.  But what is the right call, and that is why I am asking you?

It may be that the overwhelming answer is yes; but I ask the questions so all can learn and all of us can understand.   Your thoughts please?  Thanks.

I am a diabetes dad.

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19 replies on “Is it REALLY Okay to Seek Medical Advice from Other Parents?”

I feel like most of the time it’s okay to ask and answer, as I have been one who has asked and who has answered. Not this particular question, all though I did read it. However, I feel like I’m intelligent enough to know that these are just opinions and they are only what the other people would do. I think sometimes we just ask even if we already know what to do or have already phoned the physician and are just waiting to hear back. Maybe we do it out of fear or perhaps we’re seeking the “I understand what you’re going through” portion. Perhaps it helps with that helpless feeling you get when you’re in that situation. I think for me, it makes me feel like I’m trying to gather some ammunition in this fight and not just sitting here being helpless? Waiting for the doctor to call back when your kid is sick seems like foooorrrreeevvveeerrr and reading comments helps pass the time. Then again I’m assuming that everyone has the knowledge to not listen to everyone and to know that “I read it on the internet so it must be true” isn’t always true. I can only speak for myself when I say that I think it’s ok because I’m confident in the knowledge that I have and the smarts to say Ok, this is a good idea and this isn’t going to work for us.

I am not one to call an MD at the drop of a hat. PLUS the practice we were with at diagnosis was NOT responsive. It took weeks to get a call back. And they pretty much didn’t answer the emergency line at all. This sort of situation doesn’t strike me as probably immediately life threatening. If it were my kid I definitely wouldn’t call anyone, I would know what to do. I think as a society we have become TOO dependent on calling a professional for simple stuff that we can take care of on our own.

Yes, I do feel it’s okay.
In the early days after dx, I received more accurate and quicker advice from other parents who had BTDT, than I did from my son’s doctor. We didn’t at that time even have an endo to call. And I have since learned, the hard way, that our local hospital is not the best place to treat type 1 in juveniles. Our endo, and the hospital she practices out of, are an hour and a half away, and medical/supply bills are already huge. I also think everyone should take advice with a grain of salt and a huge dose of common sense.

As someone with T1, I often seek advice from other T1’s. In fact, I would say I do so 99% of the time. While I would seek emergency help should the situation arise, I have had terrible service and experiences at hospitals from ER docs to Endos. I have a few Go To people in my D community and trust them explicitly. I have learned over the years to sort through the online advice and like others have said, take everything with a grain of salt. It’s important to realize where that line is between helpful advice and needing to seek medical attention. It takes time and a really good understanding of this disease. I would encourage ALL parents to educate themselves with the physiology of diabetes and and really how each insulin works. This will give you better perspective and allow more educated decisions. In the end, we are our own best advocate and sometimes even doctors get things wrong.

In a situation like was described, I personally would have told the gparents what I’ve been trained to do (water,insulin, check keytones) and if nothing was helping or keytones were large (“high” for us ‘cuz we have a blood keytone meter) I would call our Endo for advice before I’d ever ask the DOC. I may subsequently ask the DOC how they handle this type of situation out of curiosity but I don’t normally seek the opinion of someone other than our team on how to handle a situation. Now, that being said, we are approaching our 4 year diaversary. I can see how someone more newly diagnosed would be hesitant to call the D team & wonder if this was just one of those things they were supposed to “know” and so asking the DOC for direction. I which case, the answer would be “You should call your D Team.” But if you are wanting to know what I do (not what I would do in your situation and so you should do this too but what I personally do when my ds meter reads “high”), I…”. Does that make sense?

My answer is yes to opinions & advice from parents who understand. I think it’s the responsibity of the person asking to use good judgment and understand that opinions are not medical advice. They should ask their doctor to confirm and with good judgement should know that 1. What may work for one person may not for another and 2. That they are responsible for their decisions so although they can consider others opinions that they better make sure they either double check with a doctor or consider opinions as a tool not the rule.

Many times parents learn more from other parents than doctors sometimes, it just depends on the situation on the level we can use another’s opinions. Many times it’s safe and others it’s risky. Asking others for medical opinions makes a lot of sense to me in the diabetes community but it doesn’t equal medical advice. Listening to another’s opinion can be helpful but my whole point is it’s the person who is asking who is ultimately responsible for treatment based on more than just opinions.

It depends what the question is. I think often D-parents are bombarded with medical information by the doctors at the beginning and can’t take it all in. Very often the questions I see on diabetes pages are people basically asking to be reminded what they were told by the doctors, such as “I can’t remember the sick day rules and my child is vomiting. What do I do?”

Personally I would never rely 100% on the answers I receive on Facebook pages or forums, but use them more as memory joggers, or pointers to help me know what questions I want to ask my children’s diabetes team.

I say yes… it absolutely makes sense currently to reach out to the DOC in some situations. There are plenty of families who have been living with this diseases ins and outs for many more years (3 for us) than us, and to a certain extent can help frame what may necessitate emergency vs ‘use caution’ for the newer families.

I wouldn’t consider two HIGH readings a “call the endo immediately” emergency – I’d suggest checking keytones, and basing that call on the reading. Ultimately, I’m sure many of us have experienced this, specific to this kind of situation as presented here, we’ve been at the HIGH. We’ve called the doctors, and we’ve been told to – water, exercise, increased insuline dose due to resistance from the high, and check keytones. Wait 2.5 hours. That’s always the advice I’ve been given when calling in… even when keytones are moderate!

Now.. if she’d been posting about her child having a seizure, or high keytones for hours, I think you’d have likely seen a much higher response that tuned into “CALL YOUR ENDO team!!” 🙂 Right?

Common sense is and should always be a given (I mean if someone is saying treat it with cinnamon.. well, you know 😉 ), but there is a lot of ‘gold’ to be found in the wisdom of others who live this life day in and day out actively. At least in my opinion. It’s not a bad question to pose… but in this case I think it was a perfectly good situation to present to the community.

Gold indeed. Thank you for commenting. We also do not know whether they tested for keytones and I think we would all also agree that when one does not know how high, “high’ is; actions taken need to be monitored closely. Thanks again.

When we were in the early years of D, Nathan was dealing with other problems that complicated D, and we had scary situations with low BG’s (60’s) accompanied by large ketones and vomiting. Calling the endo on call would result in the advice to “give 5 units of insulin by injection” to clear the ketones. Hello, his BG is in the 60’s. LIke others responding here, the hospital ended up being a frightening place where I had to fight like a tomcat to get them to help us without just about killing my kid. And I’m in a nice suburb of Chicago. Know who I trusted and felt most comfortable going to for advice, ideas, input, commiseration, hand-holding and e-hugs? Yep…the CWD parents. 3:00 am, there was ALWAYS someone awake (love our west-coast parents, where it was just midnight, LOL!) who was willing, at the very least, to say, “Lori, you can do this…here’s what I would do…” After I’d received input from 4 or 5 people, my confidence was restored, and I could “work the problem” instead of just panicking and crying.

That said, I would also call my endo when things got scary, but most of the time, because of the weird numbers and stuff that I mentioned, I would not completely follow his/her advice, because there was no way I could shoot my 8 year old with a low BG with that much insulin. They can just follow their algorithms and say that for this age, with this body weight, and these ketones, you give this much insulin. Our kids with D are more complex than their algorithms. Any parent with a child on a pump knows that the pump doesn’t always make the best decisions, and we override the pump’s program. Endo’s and CDE’s without D can’t, imho, make the kind of judgement calls that parents with experience can. Most of the CWD parents have a siggy line that shows how long they’ve been at this gig, and I got to know who my “go to” advisors were. Is it okay for us to go to other parents of D kids for medical decision-making advice? Not 100% of the time. But I gotta say…I would NEVER have made it through those early years without the parents’ board at CWD. NEVER. They helped me a thousand-times more than my MD ever did.

Me also and I thank you for letting us know the extreme value of both. In 1992, when we started, is surely a different world than we are today and when my son was dx in 2009……much at our fingertips and so many willing to help. Thanks for writing.

If I could choose between (A) the advice of 24 others who’ve dealt with the exact same situation I’m in, or (B) the advice of one doctor who has 24 credit-hours of coursework that tangentially relates to my specific situation, I’d choose (A).

Every time.

I am the parent of a t1d who was diagnosed almost 2 years ago at age 3. Our “diabetes team” (peds endo, nurse educators, dietician & social workers) was amazing. I don’t know how we would have managed without the training & support. I was “that” parent who emailed food logs for 6 months & checked my email religiously for their feed back & in-put. But then I got the hang of it. I met other parents of children with t1d and found a different kind of support.
The information I received initially from the doctors was, without question, invaluable. They taught me how to keep my daughter safe & alive. They educated me about a chronic disease that I was completely ignorant to & they did it in phases that were digestible.
BUT, for the most part, they don’t go home to a child that needs monitored 24-7.
I have learned so much from other parents. And I have learned to trust their advice, as if it came from our original diabetes team. There is no way to truly understand the demands of this disease without living it. And there is no one more willing to help than those understanding and living your plight (for lack of a better term).
I wouldn’t trust anyone blindly about this disease, but I trust those I have gotten to know & seen care for their own children and extend kindness & understanding to mine.
I have also met people in the medical field who know very little about caring for a child with diabetes. I understand this is an area of speciality, but when I encounter trained physicians without comprehensive knowledge it is no wonder there are so many misconceptions.

The amount of reading so many ‘both sides of the coin’ is surely eye-opening. I thank you for the comments of someone who ‘has been there’ and back and still working at it. Your words are much appreciated.

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