heredity factor

[ariella]

Hi

I suspect that two of my children have symptoms that may be related to dysautonomia. Just consulted with pediatrician, as one child complains often of headaches, acts spacey, and fainted recently. She also has a heart murmur, echocardiogram normal. Suffers from anxiety. He did say that he may order a holter monitor, but felt that even if she does have it, he doesn't want to put a label on a ten year old who is otherwise functional, it will just be more disabling for her. He felt that since it is unlikely to need treatment now anyway and there isn't much to do..."have her drink a lot just in case, can't hurt"..., why bother diagnosing..

He also made a comment which I hope I misunderstood, something about "just because some professor wants to fill in his reasearch", and didn't end off the sentence. Maybe I misunderstood his comment, maybe I didn't hear right, but it made me feel like he just totally negated my condition. He was not speaking in my first language, so trying to give the benefit of the doubt that I misunderstood what he was getting at, although I am 99% fluent in the language he was speaking. This is a pediatrician I highly trust, he is a very good doctor, and it hurt.

Comments?

Ariella

[corina]

Hi Ariella,

I'sorry that you feel bad about what the doctor said. I can really understand. What I think is that it wasn't meant for you! He talked from his specialism: the children.

From this point of view, I think he's right. I have two children my own as you might know, and I see symptoms in both of them. I don't tell them, I talk about it with my husband. I once called my familydoc to check on my youngest because he was too dizzy to walk. He checked his iron which was okay. I gave him lots of (sports)drinks and in the end he felt better.

I agree with your doctor. If treatment isn't necessary, I don't want them to be labeled with dysautonomia. They experience my daily struggle, I don't want them to have that. It's not to ignore it, I would want them to LIVE with it.

There's also the thing of copying. I know this might hurt (I felt that too when my doctor mentioned this), but it is true. Children copy their parents. In shouting, smoking and . . . (luckily they also copy the nice things ).

Children don't want the doctor to be their best friend, they want to go out and play!

I can imagine you have to think about this. And I hope you don't feel hurt. It's just that I think it's important to look at this from the children's point of view. Without ignoring your own feelings about it!

Hope this helped a bit Ariella! Warm wishes for you and your children!

Corina

[Ernie]

Hi,

Six children in my family have been tested and 3 of them have POTS. We prefer to know what we are dealing with so as to protect them in the long from being misdiagnosed and mistreated by doctors like I was and still is sometimes.

Ernie

[Poohbear]

Corina,

I'm sorry you felt hurt by this Dr. From what you write, I do think I understand where the Dr. is coming from. You know you have Dysautonomia, you know your children may also have it (although it's also true that many people have dysautonomia that has no genetic link and thus, their children would not have it) but unless the kids start having symptoms that interfere with their daily lives I agree it's unwise to "put a label on a child".

Especially in our world today, sometimes, putting a "label" on a child can actually do more harm than good...it can make it impossible for them to get good health insurance as they get older, they can't get life insurance when they need it (or will have to pay excessive rates for it) etc.

It is also true that because you do have dysautonomia you know the signs & symptoms and you can advocate for your children much better when you need to. Also keep in mind though that the symptoms you describe in her, are symptoms of many things and may or may not be related to each other. I think most Dr's are more open to keeping in mind the medical history of a childs parents and considering they may have the same condition than if you didn't have the condition and your child did (then they might not ever consider dysautonomia at all or shrug it off a lot easier). I hope I'm making sense here. I know what I mean....just having trouble putting it into words.

I have dysautonomia that has disabled me. I have a sister who fainted frequently as a child; she is 9 years younger than me and when I got the diagnosis of Dysautonomia I told her about it. It appears she does have some autonomic dysfunction however she is rarely symptomatic at all anymore. So, even if there is a genetic tendancy it doesn't mean your child will be as limited by it as you are...they may, but they may not be.

Having said all of that, I am sorry you had this experience with the Dr. Maybe you could try to give him the benefit of the doubt since you seem to like him otherwise and just see what happens in the future.

[MomtoGiuliana]

Ariella

I have a daughter and have the same concerns, since both a sister and I have been diagnosed. However, I do have to say that I would feel comfortable with your doctor's response. Autonomic dysfunction does not necessarily need treatment by a doctor or with drugs. I also agree that a label can be scary to a child and probably not necessary if symptoms are mild. I think it IS good that you consulted with the doctor about your concerns and of course, if symptoms change, you can pursue it again. The positive thing is that you know enough about the condition to get appropriate treatment for your children if it is needed.

I know we have discussed this in the past as a group, but I'll just add that, for myself, looking back to young adulthood (as a teen) I had mild symptoms. They probably would have been managed better with extra fluids, but they definitely did not need other treatment and my life then was like any other teen's.

Katherine

[DawnA]

Hi I have two daughters and the oldest is diagnosed with POTS. The youngest has the symptoms, but I have not had her go through testing. I agree about the waiting for a label until necessary. You have to think about what is in the best interest of your children. Will a diagnosis help them in there life at this point?It depends on the situation.

I had my eldest tested when things got disabling. She improved on her own and does not need meds at this moment. I often have to encourage her to drink fluids and pace herself. The diagnosis has been helpful for her because my husband is not a very patient man. He does not understand forgetfulness and has often accuses her of being lazy. Now I just remind him that she has POTS, which he does not totally understand, but is getting better. Also when she had surgury they gave her extra fluids. School issues may be another benifit.

My otehr daughter, I am reluctant to put her through the testing. She has had enough tests due to other illness' Since I have an undiagnosed metabolic disease. they treat both of my children using precautions. It looks like we probably have a mitochondrial disease and the only way to know for sure is to go to Atlanta for a fresh muscle biopsy. I have decided to put this off since my children and I are both beig treated like that is a possibility. My diagnosis would not change our treatment at this point. I will persue this in the future, but it is not a good time right now. I just want my children to feel as normal as possible and not be afraid of the future. Medical testing was very difficult emotionally for my oldest who is 14.

I hope this information is helpful to you.

Do not let that Dr tell you what to do. It is your decision. Only you knows what it best for you and your children. What ever you decide you have my support>

DawnA

[Sunfish]

hi ariella -

sorry you had a rough doctor's visit. whether it was a misunderstanding or otherwise, it's never fun to come away not feeling good about an appointment. i agree with what a lot of others have written....it seems that there's a balance of some sort between

1: not needing to make a bigger deal of something than necessary until it becomes necessary, whether that is sooner or later or never and

2: being aware & advocating for good diagnosis & care if/when it does become necessary.

the fact that you have the knowledge basis already is a huge step in the right direction if/when its needed. trust your feelings & instincts in terms of how far to pursue things with your daughter right now.

good luck & let us know how things go...

:-)melissa

[sally]

Hi Ariella,

Sorry to hear that your children may be affected by this problem as well. Placing a diagnosis can be a pro & con decision. It's difficult I know, watching your children deal with a health problem such as this, especially when you know first hand what they might have to overcome. Both our girls have this problem and ehlers danlos among other disorders as well, so I understand the need to have answers and not wanting to see them endure something and trying to fix what you can as soon as possible.

I think you'll know best when the time is right to proceed with a diagnosis and treatment. Only time will tell though just how soon and depending how difficult a time the child is having to function throughout the day. If your children start experiencing more difficulties, it might not hurt to get a diagnosis and treatment plan started because you may need to make accommodations for him or her at school to make things easier. I know we did, as they couldn't have gotten through a school day without making accommodations. It was a requirement in order for them to function and finish the day.

In our case.....I didn't worry too much about placing a label on my children. I was more focused on fixing the problem than what a physician or insurance company might think down the road. I also at the time was informed about possible labeling by only one certain physician to whom I simply stated "why not put a diagnosis on the problem if it's warranted, it could only be beneficial to direct things towards the correct treatment needed". Plus I've found that more concern and respect was shown when there was a diagnosis given for what we were experiencing.

But we didn't get any answers until we sought out help from the docs at Johns Hopkins and in our case; it made all the difference in the world. It didn't however; give us any real fixes to the problems other than symptomatic results for some of the things that were going on but it did give us the reason why, which for us was very important. Plus it helped for accommodations needed at the time and in the future. It did however effect insurance purchase for the oldest but it would have anyway in her case as she has Ulcerative colitis as well and that is also considered a pre-existing condition. Unfortunately that the price of things I guess when dealing with these type disorders. I wish you the best and hope things improve with the health of your little ones.

Best wishes

[ariella]

Hi everyone

thank you all for your responses

Dawn mentioned that it may be beneficial in terms of school etc., it touched a sore point here. My daughter's school was very unsympathetic when I got sick and it took "too much time" to get a diagnosis. It didn't help matters that sometimes my speech would be slurred or not focused when they would call. The guidance counselor called and interrogated me "oh, you had a doctor's appointment, what is the doctor's name? where is his office? what time was the appointment?"--you get the picture. I have since tried to smooth things over and explain to them going on, but in the principal's mind, everything has a neat easy fix. yeah, probably not the kind of person I want educating my child, we were advised to take our girls out, but don't have a better option for now. Every time I have to speak with them I'm spoken to as if I'm a social case. They even contacted the municipality at the time to report "something is going on" . Thank God I didn't hear from them. At least her homeroom teacher this year was supportive. The administration is the problem.

I don't totally disagree with my pediatrician about putting a label, I took his comment to be referring to my condition, that it's not a real illness, just theoretical because someone wanted to create a new specialty. Hoping I misunderstood.

As far as insurance goes, it's irrelevant, we have socialized medicine. But there is the issue of creating a balance between making sure they get appropriate treatment and not freaking her out.

Ariella

[DawnA]

Emotionally having a diagnosis could be better for your daughter/daughters. She will have a little more understanding about what is going on with her body. It can be so frustrating when your mind does not focus well. She has you who understands and can relate My daughter was evaluated for depression/ attention deficit. She had neither. She starts high school this year. If she is not able to keep up or has problems with organization...the POTS may have to be brought up. However my daughter is proud and wants to be normal.

I understand how difficult it is to remember things and not function. I am always loosing permission slips, forgeting lunch money, etc. Fortunately both of my daughters are pretty good at getting off to school on there own. If it was my responsibility they would be late all the time.

I am sorry that you have to deal with social medicine ...I suppose you do not have much choice in Drs. Do have rights in your country for children with disabilities? Hang in there DawnA