Can you say no to follow-ups?

[TransDad27]

Please don't judge us. We are highly opposed to medical intervention that is not necessary and our baby has a chromosome abnormality. She was in the hospital 2 weeks at birth and has been home ever since. She sees her pediatrician regularly and isn't having any problems (no heart conditions, no serious medical problems that are lifethreatening...just a rare chromosome abnormality).

Anyway, the geneticist wanted to see her for a follow up when she was 3 months but we canceled the appt. for fear that they would just be poking and prodding our little one or trying to take pictures/have the condition named after the geneticist etc.

We are natural people and avoid situations like this, especially with what she went through in those first few weeks in the NICU.

Now they mailed us a letter that we're to go there when she's 6 months for another appt.

I desperately want to keep her away from the bad energy of the hospital (not to mention the germs) but I don't want to look like neglectful parents or risk having her removed from our care. Any ideas here? I don't really understand why her pediatrician can't send them her records so they know she's been perfectly healthy. I've heard of other geneticists admitting there's not much they can do for unknown conditions and telling parents there's not real point in being seen until their child is older and more problems become apparent...but this isn't apparently the way our geneticist thinks.

[askew]

I think you can say no, but in some cases it is better not to. FWIW, we are in the same boat. Baby born into NICU with chromosome disorder. Only our DD also had a prenatal stroke. DH and I both work in the natural health industry. My DS was never vaxed, never on any medication, drinks green smoothies and takes herbal tinctures etc. We felt really uncomfortable in main stream medicine. That said, our experience with DD's specialists has been surprisingly positive. Genetics was so mild. They just looked her over and sent us on our way, asking us to check back in once a year. They do that more to follow her so they can tell other parents in the same boat what to expect, as the literature is so often skewed to the negative. They were incredible positive to us, not doom and gloom, leaving a wide berth of hope for us as to DD's future. Making sure to point out that the literature was skewed negatively etc. They did take her picture, but asked us first if it was okay, and we were free to say no without them caring.

One doctor you may want on your team is neurology. We have had such a great experience with them as well. When my DD started having seizures at 6 months they were right there for us, calling to check on us every few days, really rooting for the meds to work, even saying really genuinely how glad she was that DD was doing so much better. They never batted an eye when I came in knowing all about something, and having researched the subject to high heaven, they said they appreciated a well informed parent as an advocate for the baby etc. Even when I brought up alternative treatments or supplemental medicines.

I guess what I am trying to illustrate is that even though I was really wary, it ended up really nice to have these doctors following DD, and rooting for her, and keeping me informed as to the latest things to look for or consider. While you may not be able to put off all mainstream doctors for long, you absolutely have the right to leave one doctor if they don't feel right to you, or listen to you, or you don't like the way they are with your DD. We got lucky with our team, but heard some horror stories about the genetics department at the other big Childrens hospital in our area. So keep looking if you don't like who you see.

[KatWrangler]

I guess I would ask you, why would you not do follow ups? How can you be so sure they would not be beneficial to your child? Being kept in the loop so to speak.

Yes I know blood work and testing is uncomfortable for you. I would have to say more for you than your child (I know this all too well). But you have to weigh the benefits with the not benefits.

[2boyzmama]

Regular appts with specialists can be beneficial, especially if she's doing well. First of all, if your dd's chromosome arrangement is unique/rare, the information gathered about her (development, health, etc) will be helping the medical community as a whole understand more that might benefit another child. Many assessments are perfectly benign, not painful, and can be done in a caring manner.

Also, the geneticist might be more able to pick up on the subtle/early signs of an issue that you or her ped might miss. For example, a geneticist noted my son's tapered fingers, something a ped would not take note of. Turns out tapered fingers are very common in my son's syndrome. Tapered fingers can be a sign of a cardiovascular issue, so we knew to look more closely for one.

Also, the geneticist will likely be the one with the most up to date information/research/studies that you won't be able to find through just a google search.

You should certainly feel free to express to the dr that your dd is your treasured child, not some medical curiousity, and you want her treated appropriately. At our geneticist's office the nurse always asks if there are any cultural considerations, that would be your opportunity to open a dialogue about you fears. Maybe even schedule a separate appt where you don't take her and you can talk to the geneticist alone.

[APToddlerMama]

I would go to the appointment, but ask lots of questions before determining what if any additional testing you would like to have done. Make sure you're comfortable with it before allowing them to do it and if you're not, explain that and see what they say. It can't hurt to just go and see what they have to say, keep open lines of communication with them, let them see that you want what is best for her and you're not just blowing them off.

From my perspective as a former child welfare social worker, as well as a parent of a kiddo with special needs (who has said no to some testing and vaccinations), I would not want to mess around with the possibility of being reported for medical neglect. If you at least go to the appointment and keep an open mind, you are showing you are willing to consider options and are addressing her medical needs. I don't know how serious her condition is, but it is possible that testing is the lesser of two evils. Only you know that, but at least go to the appointment... Good luck!

[HarperRose]

My parents didn't go to my follow up. I do not know what my neurological condition is called. I've googled myself silly over it (based on symptoms only, because that's all I have) and can come up with only a very vague picture.

I wish my parents had taken me to the follow ups so I had an answer, a name, a prognosis.

My experience is why I DO take my kids to their follow ups. They deserve answers.

I'm also very uncomfortable in mainstream medicine! Don't get me wrong! Homebirth, extended breastfeeding, homeopathy, you name it. But I have a very strong opinion on follow ups because of my experience.

[Lilypie32]

First of all, I have worked for several clinics and the cards we would sent out were just reminders. The cards were not meant to coerce or force patients to come in for a follow-up. If a patient did not come in that was fine. We did not do any reporting, harassing, etc.

Second of all, even if you do go in for the appointment it does not mean you must do anything the doctor wants. But, like others have said, it might be a more positive experience than you might think and could help others as well.

[KCMichigan]

Yes, you can say no.

Yet, I would hesitate not to go. Knowledge is powerful--the more you know the more you can be your child's advocate. You could also agree to a more spread out follow-up (yearly vs every 6 months).

You DO NOT have to do any testing or procedures you are not comfortable with, but a physical exam and/or follow-up may be helpful in seeing things your Pedi may miss (two sets of professional eyes are better than one) and also may know more on what to 'look' for concerning problems with that particular situation and/or on how to approach certain situations (Just an example: I have a bleeding disorder and a few natural remedies could be dangerous for my particular situation. I would not know this if I had not followed up and discussed natural supplements with my hemotologist)

They may also be able to provide you with support and/or in contact with other families facing the same things. Sharing information with other people is invaluable- even if it is just for moral support.

[anj_rn]

We see a ton of specialists, but I have asked each of them to try to group testing. So if pulmonary wants a lab drawn, she writes a note for it, but we will wait until we have seen all our specialists, so she can be poked just once. We also ask to space out our appointments. If the particular specialist is not actively treating something, we go once a year or every 6 months. It has been very beneficial for us. I would suggest going to at least one follow up, and then asking for rationale for additional follow ups. For every test they want to run, I ask how the results will affect her care.

Our specialists have been very understanding. Even when I refuse pictures (which I always do).

[betsyj]

We have seen pretty much every pediatric specialist known to man. And almost to a fault they have been kind, compassionate, and caring.

As a PP noted as well, pediatricians are generalists and may not know certain symptoms or quirks to look for in a child with special needs. I really like our ped, but when our son first presented with right side weakness she immediately said she was out of her depth and we needed to see a specialist.

I don't like hospitals either (in fact I can't think of a single person who does!!) but I can't let my worries and dislikes get in the way of ensuring my son gets the best care he can.

[Monkeypants]

I agree with all the other people who have replied to this post, especially the first commenter. We go to a children's hospital (Boston) and I just want you to know that all the doctors and nurses and staff there seem to really believe in the least intervention. They really take into account whether a procedure is worth the trauma it causes and they seem genuinely concerned for my DD. Especially now that I have established that we are natural-living, non-interventionist people- they are hugely respectful. My neurologist even took my DD off her precautionary seizure med a year early at my request, and they tolerate my stance on vaccines, even though they don't agree. FWIW our geneticist is super nice and DD has really good, happy appointments. The only thing they ever order is bloodwork and we wait until there are several orders (she is seen by 7 different departments) and get them all done at once, or when she is sedated for something else like a routine MRI or EKG. Going to the geneticist might also help other children with the same diagnosis and your child. I know it's really hard- my other children have never even been to a medical doctor!!

[savithny]

Also, think of what you might be able to contribute to future parents?

I'm not saying you have to put your child through *painful* procedures for the
"greater good," here. But if your child has a rare genetic anomaly, you may not have gotten as much information as *you* would have liked when she was first diagnosed, right? All the geneticists might have been able to say was "Well, people with deletions on this chromosome sometimes have this issue, or this other issue...."

The more that they can report to the genetic database regarding the effects of different deletions, the more they'll be able to tell parents the next time. Wouldn't it be great if, because you took your baby back to the geneticist, some parent next year, or two years from now, or five years from now, will get chromosomal results and *their* doctor will be able to say "We know kids with this deletion don't develop heart conditions as they grow," or "Kids with this deletion tend to speak later but can use sign language on time, so you should look into that."

I know a couple whose baby was diagnosed with a rare deletion when she was 8 months old. It was one that has major, major consequences for her growth and development. But because there was a community of people with that issue or similar deletions, they were able to get in touch with other parents of children like theirs. They are currently active in an organization for parents of children with that deletion. They have conferences where people from all over the country get together. They are able to hear stories of children older than their daughter, and they are able to reach out to new parents coping with the news for the first time. Ten years ago, this wouldn't have been possible -- and it has been very, very important to them.

[SiobhanAoife]

My daughter has a rare genetic mutation; only one instance was findable in the records. That person was much sicker than my daughter has been so far (thank you, God!). We had her information put into a relevant registry so that the next parents who get the same results from their kid's gene sequencing can hear that my daughter is, so far at least, developing wonderfully without any health symptoms and without any medications. It would be easy for us to not go through the paperwork and the weirdness of having her documented in this way for the rest of the medical community, since she's doing so well -- but I want the next mom to hear that it isn't necessarily as awful and scary as it seemed to me when I got the terrible phone call.

[AndVeeGeeMakes3]

Originally Posted by SiobhanAoife

My daughter has a rare genetic mutation; only one instance was findable in the records. That person was much sicker than my daughter has been so far (thank you, God!). We had her information put into a relevant registry so that the next parents who get the same results from their kid's gene sequencing can hear that my daughter is, so far at least, developing wonderfully without any health symptoms and without any medications. It would be easy for us to not go through the paperwork and the weirdness of having her documented in this way for the rest of the medical community, since she's doing so well -- but I want the next mom to hear that it isn't necessarily as awful and scary as it seemed to me when I got the terrible phone call.

:

My daughter's "stuff" also is so varied from the others with her condition. It's been really helpful to be able to reach out, find more information from, and provide it to, others dealing with similar situations. Knowledge is power. And a community of knowledgeable parents is REALLY powerful. Join that community!

[Sweetiemommy]

If you feel strongly about not going, I think you should just give the office a call and tell them that you are switching to another doctor who is "closer to you" or whatever excuse is easiest. The receptionist will probably just note that in your file, if that. They are not going to come chasing after you (I would imagine) they just want to follow up with you as it is their standard of care. I doubt that this is cause for child neglect, especially if you are seeing your pediatrician regularly.

[blessedwithboys]

WRT being reported...going in and saying you arent "comfortable" with x,y, and z will send up a red flag. simply not making an appt when you get a reminder card or call will not put you on the neglect radar so to speak.

[bri276]

The fact that rare chromosome disorders are rare is exactly why they don't usually get "named". There often aren't enough children with the disorder and similar constellations of symptoms to have it be recognized as a syndrome.

However, there are plenty of organizations of parents and other individuals affected by rare chromosome disorders who come together to share information and support each other. My daughter has a deletion of 18 and a duplication of 3. I've never found anyone with her exact translocation, but it's been great to know about similar cases and just have others to talk to. You can learn a lot from parents who have gone before you.

Our geneticist just does a very harmless physical examination that DD usually laughs through, tests typical reflexes, looks in the eyes and ears, asks about how she's doing, and then writes a nice follow up letter to the pediatrician that we're copied on that describes her features and what's known about the chromosome abnormality. There's nothing anxiety inducing about it. And we go to one of the top Children's hospitals in the country, so if anyone was going to be super invasive, it would be them She asked permission to take a picture and we granted. Personally, we don't mind at all, I wouldn't even mind an entire case study written on my daughter if it meant another child born like her would have more information about what to expect. But that's all totally optional, they can't do anything without consent.

Here's a link that might be helpful in finding out if there are some similar kids out there, and joining the group will allow you access to an email group for the other parents.

http://www.chromodisorder.org/CDO/Ge...Disorders.aspx

[bri276]

Monkeypants- do you see Dr. Stoler?

[AndVeeGeeMakes3]

Originally Posted by blessedwithboys

WRT being reported...going in and saying you arent "comfortable" with x,y, and z will send up a red flag. simply not making an appt when you get a reminder card or call will not put you on the neglect radar so to speak.

I disagree.

[2boyzmama]

Originally Posted by AndVeeGeeMakes3

I disagree.

Yeah...I think I disagree also.

Going to follow-ups shows that you are taking an interest in your child's health care. Declining tests/procedures that are not emergent *shouldn't* send up any red flags. You can certainly choose NOT to do genetic testing, for example. You can certainly choose NOT to do an MRI if there is no immediate medical indication that shows your child being in danger.

But if you just...don't go...

It's unlikely to cause a problem, especially since she is being seen by a pediatrician, but I am firmly in the camp of "it can't hurt, you can decide what you are and aren't comfortable with, and it might help. If not you, then someone else."