Two weeks ago I took Nick and Nora to a pediatric specialist. I had a morning full of meetings then dashed home to get them from nursery early, so that we could go straight to the hospital. Naturally that was the day that nursery opted to have a mud pie party in the garden so Nick and Nora were looking like something that would crawl out of the underside of a train – in brilliant moods, but absolutely filthy. We didn’t have time to dash home and I had my work bag with me, so we had to go as was.
The doctor was late and entertaining two little people in a very serious hospital waiting room was getting pretty difficult. Finally the doctor breezed in, muttering under her breath something along the lines of “Well I suppose it’s that time to get back to work” as she waltzed into the office nearby. She called our name, and we went in.
The room was hot and full of things that their tiny eyes focussed on. The doctor seemed to take us in – me, flushed and agitated, the twins looking as though their Halloween costume is to be Pig Pen and this is a little earnest practice going on – and I think made some internal decisions about What Kind Of People We Were.
I briefed her on our background while undergoing rapid fire questioning –
Me: “I was diagnosed with EDS a few years ago – “
Her: “Who diagnosed it? Who?”
Me: “Um…I don’t recall his name. He was Irish, if that helps?”
******
Me: “The twins were born 4 weeks early.”
Her: “How much did they weigh?”
Me: “Almost 6 pounds each.”
Her: “That can’t be right, that doesn’t compute. If they were born 4 months early – “
Me: “Weeks. 4 weeks, not 4 months.”
Her: “You said months”.
Me: “No, weeks. I was there. I had them 4 weeks early, I don’t think they’d be here if I had them 4 months early.”
******
Me: “Nora complains of leg aches and pains.”
Her: “What do you do for them?”
Me: “We distract her.”
Her: “I mean, what do you do for it?”
Me: “What do you mean? We don’t medicate her or anything, she’s only 4!”
******
It was exhausting. I gave a complete medical account of Nora’s past and my own experience with EDS. She looked at me, assessing. Finally she spoke. “You know that we can’t operate on Nora until she’s at least 11, right?”
I brushed hair out of my face while quietly taking away a bottle of lancets from Nick. “Sorry?”
“We can’t operate on her until she’s at least 11, if that’s what you’re seeking. No one will operate on her so young.”
I stare at her, not comprehending. Then it hits me. She thinks I want to have my daughter operated on. She thinks that’s what I’m here for.
For.
Fuck’s.
Sake.
Who the hell wants their kids to have multiple surgeries?
I have never in my life wanted to go across a table at a medical professional so badly in my life. I’m one of those that treats doctors with something like reverence, seeing as how reliant on them I am, but I swear I wanted to rush the bitch.
“I don’t want Nora operated on at all!” I nearly shout. “That’s why we’re here, I don’t want her operated on! Operations don’t work for people like us, not in the long term. I want physio or you to tell us how to behave so that she doesn’t have problems. I don’t want the same life for her that I have!” I finish off, beyond livid that someone thinks I am one of those Munchausen’s-by-Proxy kind of people. For Christ’s sake, does she think I am so hot on surgery that I would push Nora towards that path? I’ve got that propafol stash for nothing? My Operation My First Barbie practice has been for naught?
She nods then, apparently finally convinced that my life’s dream is not to see my daughter get multiple surgeries. that I’m not some kind of FrankenMummyDearest. She then puts Nora through her paces and tests her.
Sure enough, Nora has EDS. Hers is already active and present in her ankles, knees, hips, elbows and wrists. That flap of skin under her tongue – another marker – has appeared. She is now to be signed up for developmental physiotherapy to help her joints and we have some instructions, like certain sports to avoid and that she needs to use big chunky crayons and pencils for some years.
The specialist then drops a few more issues on us – Nora is to be tested for Celiac Disease, for she either has that or IBS. And then as I’m wrangling both weary children she drops one more – Nora is to be referred to Great Ormand Street in London, the leading children’s hospital. Nora has a heart murmur which has thus far been unidentified. She needs to have it checked out. The pediatric consultant then discharged us, and I genuinely hope we never have to see her again, ever.
I feel a grip of panic every time I think of that, but then I tell myself that it’s absolutely nothing. She’s going to be fine, it’s going to be nothing. I have decreed it thus.
-S
PS – also, a lovely musical picnic basket turned up for the twins, but there were no sender details. I tried to find out who sent it with no success, so to the sender huge thanks, it’s very popular!
O.M.G. I hate it when doctors make assumptions on the fly like that. I’m sorry to hear that Nora is facing issues. (I don’t mean to sound flippant). Heart murmurs are usually nothing, I had one turn up and disappear just as fast, at least they’ve found it and can check it out properly – also – at least you got a referral to a great hospital, so at least you can be assured of getting the best advice possible. Also – it won’t hurt to get a second opinion!
What an awful doctor – I hope you will be making a complaint about her unhelpful manner
And good luck in getting the physio and help for Nora – sounds like you are heading in the right direction
I hate that sort of doctor. I agree about making a complaint.
I think GOSH will likely be the best place for getting the physio recommendations anyway so I hope it helps. Heart murmurs (especially mild ones, which I’m assuming Nora’s is if it was only just IDed) can be common in people with EDS and usually are just a “watch it” thing rather than being very serious. I’ve known a couple EDSers who were diagnosed with heart murmurs as kids and grew out of them, too. So I hope that side of things goes well!
Sending good thoughts your way!
Also, if you’d like any suggestions for usable EDS support websites (both for people with EDS and parents of kids with EDS) feel free to send me an e-mail and I’ll give you a rundown of the ones I know and their benefits/drawbacks.
Great Ormond St is indeed, great – very good news that she’s been referred there.
Didn’t you once write something about a psychic who predicted you would have a child with a heart problem? And all her other predictions have turned out to be correct. If I recall she also predicted the problem would resolve itself.
OH. My. Word. What is wrong with doctors. I am so sorry you had to deal with this dolt and I hope you never have to see her again. I don’t know anything about EDS except what I’ve learned from you, but all I can say is I know that nobody will be as diligent about Nora’s care as you will be. You are a great mom.
Heart murmurs are common in children. Most grow out of them. I did. Depending on the doctor, they hear a murmur sometimes with my daughter, but her chief of pediatrics primary care doctor isn’t concerned as of yet so we aren’t either.
Much love from this side of the ocean, and I decree it thus that Nora will continue to be the perfect girl she already is :)
Oh GOD, you got one of THOSE. I haven’t worked out how to deal with those tpye of Dr yet. Can’t help but think that big stick might be handy, though. I tend not to disguise my shirtiness if the questioning is going poorly, these days, and bark back a bit. I’m not there to make friends. What a cow!
I’m sorry to hear that Nora has to face this particular challenge in life. I hope that you can find the right doctors and therapists to help guide her through.
That doctor sounds like an ass. I doubt it will make you feel any better, but any time I go to see my family doctor, it’s because I have some sort of weird pain and he then implies that if I’m there for drugs, I’m out of luck. Maybe I made a joking comment about missing the days where they’d prescribe valium for everything once, or something, but the only painkillers I’ve ever gotten were after my c-section. And I’m usually looking for an explanation of why I have the pain and when will it stop. You know what? That guy’s an asshole. I’m never going back.
RE: Kids with celiac disease. It’s daunting at first, but there are a ton of support groups and great, gluten-free alternatives out there. There are many e-groups for long-distance support too. RE: Asshole doctors. I live in the land of Johns Hopkins gods, so it’s impossible to be taken seriously enough to get adequately treated for anything. They’re always convinced they’re right; They rarely are. RE: EDS. Praying for you & children, and donating to EDS National Foundation.
@Kiki Amusingly (and I don’t know if you know this), the land of Johns Hopkins gods is actually also close to pretty much the best area in the country to live if you have EDS. Except I wouldn’t see the EDS specialist at Hopkins as I’ve been told he’s a jerk (but at least used to adequately treat until this year when he’s done a 180 about pain medication). Apologies if you knew this, but I thought I’d mention it because I actually know people who’ve moved to the area specifically because it’s where they can get the best care for their EDS. (My EDS specialist is at GBMC and I travel from CT to see her. I’ve also seen a neurosurgeon in Bethesda and a friend of mine who also has EDS swears by her rheumatologist, who is also in Bethesda)
It seems like the Docs are always on the extreme – do NOTHING or do EVERYTHING. Probably can’t imagine a parent who wants to do something REASONABLE and THOUGHT-OUT. Good for you for sticking to your guns on what is best for Nora.
I hope the visits to the Children’s Hospital turn up nothing to worry about on both the heart murmur and the IBS/celiac? and that the physiotherapy helps her to deal with the EDS.
That’s a lot to swallow, all at once, and with a person who has probably the worst bedside manner of anyone I have heard of. Glad you are sober and the doctor is still alive. ;-)
Fuck the specialists! They often consider themselves as scientists, not as caring, sensible physicians. It’s too much when you are so emotionally involved and at the same time have to keep an eye on the twins. Don’t go to the next hospital appointment alone, take your husband with you. Just in case there are some more asshole specialists ready to scare you.
You are better off out of that hospital. I’ve had good experiences with GOSH although one of the consultants we saw clearly thought he was higher up the food chain than God. Others though were lovely.
God, I got enraged just reading that. I’m with Ann-I’m not there to make friends.
Veronica and Scott had heart murmurs that went undetected (Veronica was 6, Scott was 3). They had heart echos, and both had tiny holes. Since then, both of the holes have closed and the murmur is gone. It doesn’t make you worry any less, I know, but I just wanted to throw that out there.
Its scary going to a children’s hospital, but they really are the best. Trust me.
If you DO (God forbid) have to go back to THAT doctor, take me. I will shake her until her teeth rattle for you.
Not that doctors who make assumptions and don’t bloody listen ANNOY me or anything.
Great Ormond Street is the business. All will be well and all will be well and all manner of things will be well.
*Wishes to give both Nora and her mother a hug*
Kids play in the dirt. It is part of being a kid. Good drs know that. They should only judge if your kids are so clean because they live in a bubble and have never gotten to play in the dirt. Sending happy thoughts for you and yours. I have made lots of GF foods and they aren’t bad. I know there is more to it, but just changing her diet may help resolve some issues.
Yes, she is going to be fine! But that is hard to remember when in a Children’s hospital. I had a big scare with my one week old son and menengitis last month. Just stay strong and remember how happy and beautiful she is, despite all these “issues”. Thinking of you.
One of my best friends is a cardiac consultant at GOSH. I don’t think she’d be on the list for evaluating a standard heart murmur, but if you tell me when you are going in I will ask her to check in on you.
I bloody hate that you had that experience with the doctor. They are supposed to be helping, I cannot understand why she would respond to your concerns in that way. Bitch.
I also hate that Nora has EDS. I do hope that with the support you will hopefully get from GOSH that you will find good ways to help minimise the challenges she will face.
That whole situation sucks in a variety of ways. Collective reader hugs for you, Nora, and the family.
That doctor is in fact an ass. I would normally Pollyanna and say well, maybe she has dealt with too many bad patients / parents or whatever, but no. That was straight up jerk behavior. Hopefully the Great Ormond specialists will be much better. Here’s hoping that early diagnosis and careful monitoring will keep darling Nora from having the kind of issues you are experiencing.
Hang in there. xxx
Needed to come back and comment on this as I have been thinking about it all ever since you posted.
This sucks. That’s it. It sucks you have EDS. It sucks Nora has it too. It sucks that in trying to limit Nora’s future suffering you got broadsided by this professional (and I use the term ironically). It sucks that on top of that they have identified new specific issues for Nora. Most of all it sucks to feel like you are trying to row the boat single handedly when (given the number of EDS sufferers in the world) you would imagine by now there would be a clear treatment path / professional referral after diagnosis.
The upsides are YOU are Nora’s Mum and you are fierce. You will continue to push until you do get help and you ARE going to protect her from many many of the issues you will face. On that front she is already ahead of the game. The final updaide is you are in a country with good medical services and in a financial position to provide the extra things the government won’t fund. Hold the upsides close to your heart – you’re going to need them for the fight ahead. xx
The doctor heard a heart murmur in Zack at his three year old appointment and I stressed about it for some time. (He told me it was probably nothing… didn’t refer me to anyone) When I finally decided I couldn’t stress about it any more I took him back in a few months later. The second doctor told me she could just barely hear it and if I hadn’t told her about it so she was listening for it she wouldn’t have even written it in his chart. Hopefully Nora’s turns out to be much of the same….