Mothering Forum banner
1 - 8 of 8 Posts

· Registered
Joined
·
1,527 Posts
Discussion Starter · #1 ·
My 2.5 year old son was born with congenital CMV, was diagnosed at birth with unilateral hearing loss and it just kind of spiraled from there. We saw a neurologist, an infectious disease doctor, an ENT, an Au D., an audiologist, an ophthalmologist. All telling us the same thing, don't hold out a lot of hope for our little boy. He won't walk, talk, relate, etc. He will be wheelchair bound, he will need constant care.
The thing is I *knew* he was going to be fine. I would tell the doctors that "I think he is okay" or "I am pretty sure that he will walk or talk." I'd get that patronizing smile and sometimes a talk on denial and a referral to the social worker.
But pretty quickly the doctors started to agree with my assessment of my son. (Imagine that, a mother right about her own child!) Then they started to release us from care, one by one. They all said to come right back if I noticed any issues.
But last week the last doctor we had been seeing released us and I kind of feel rudderless right now. The last doctor was the ENT, he said that ds was surpassing expectations and that we should just continue to have his hearing checked until he is 5 and that we should come back if we notice any changes or problems.
I know it is ridiculous to complain about this, what mother wouldn't be thrilled to not have to take her child to the doctor? But this doctor was the one who introduced the term CMV to me, we've saw him every 3 months for 18 months then every 6 months for the past year. He's the one who walked me through the maze of providers, who explained things to me, who spelled words out so I could look them up later, he is the one who coordinated everything for the past 2.5 years for us. Our family doctor is wonderful but he hasn't been the mentor to me that the ENT has been.
I also feel like by going to this doctor that I was managing my ds's care well. That was I was doing everything possible to make sure nothing slipped by us. DS is in EI but honestly they only do *so much* for him, I feel like they aren't as sharp-eyed as I would like. I also know that this ENT was kind of taking the place of our family doctor in coordinating care and I got a bit attached.
 

· Registered
Joined
·
5,916 Posts
I get it. In a way, this is sort of how things like Munchausen's and hypochondriacs begin, the feeling of being "rudderless" (I like that description!) after you've been through so much is an odd feeling.

Of course you should be thrilled that he's doing so well and that he doesn't need all these drs anymore. But at the same time it's anticlimactic in a way. Now what?

If you like this ENT, and if your son still has hearing loss, then I say stay with him. How often does he want audiology appts? Is your son wearing an aid? Maybe just a once-a-year check-in with this dr will help you feel like someone is still stable in your son's care. And of course make sure to forward all hearing tests to the ENT.

Otherwise...enjoy your son!!! And just ride out these emotions. They're new, they're raw, and the transition to a more "normal" life might be as hard as the transition to a medically managed life was! That's okay, there's nothing wrong with that. It's still a transition and will still take time.
 

· Registered
Joined
·
1,400 Posts

Can you talk to the dr and possibly get him to agree to still see your DS once a year or so just to keep an eye on him and his treatments? Most good dr's will keep seeing you if you aren't entirely comfortable giving up their care and watchful eyes. Do you have an email addy for the dr? I think spelling out where you are calmly and clearly in writing would be the way to go. Good luck.
 

· Registered
Joined
·
1,527 Posts
Discussion Starter · #4 ·
Thanks. I think you guys are right about continuing to see him, even if it is just for my peace of mind. I'll put it on my calendar to make an appointment with him in a year, whether we need it or not and if by then I feel like I can get by without an appointment I won't make one.

I just kind of feel like after all of those doctors...am I qualified to make sure he is on track? (Of course I am but...but...)

Thanks for the understanding.
 

· Registered
Joined
·
1,527 Posts
Discussion Starter · #6 ·
Quote:

Originally Posted by hollytheteacher View Post
It sounds like he was a really great doctor and person. Perhaps you could send him a card and thank him for how much he touched you and your family.
I just did that today.
Great minds.
 

· Registered
Joined
·
752 Posts
When I read your message I thought of the way I felt after I had each baby. In the last weeks/months you're going to the OB or midwife weekly and it seems they really care for you. Then the baby is born and after that they drop you like a hot potato! I remember having a irrational feeling of let-down after each birth....like the dr. should care more about me than to just ditch me.
So, I know how you feel! The good thing is, you can always call him if you have any questions/issues. Just pretend that everythign is normal and maybe in 6 months (when you'd have the next appt) you will feel differently!

But I'm so happy your son has exceeded everyone's expectations!! Way to go mom for standing up for him!
 

· Registered
Joined
·
1,215 Posts
I completely understand how you feel and I think you are incredibly lucky to have found someone like that at all. My kids audi was like that. She set up the first EI visit, gave me all the contact numbers, told me when she though there must be something else wrong with him because there was no reason why he should be as far behind as he was with his level hearing loss, etc. We see her less often now but I made a point to follow her when she left the original practice she was with.

I would suggest trying to find some type of support. You'll learn very quickly that very few of us are 100% confident in everything that we do in regards to our SN children.
 
1 - 8 of 8 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top