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Saturday, September 15, 2007

Should Doctor’s give Patient’s Notice?

This has been a rough week in many ways.

We are pretty sure Ellie’s identity has been stolen, which is just a huge stinking hassle to fix and one more thing we have to track closely for the rest of eternity.

Oh, yeah, did I mention she hasn’t slept through the night since mid-July?

Mid July!

Yes – up every night for 90 minutes to 2 hours. I am a little on the stressed out side by this. However, this is not yet another post about those bastards – the Goods of Sleep Through the Night – who clearly hate me.


This is about a continuity crisis I am having with Ellie’s medical team.

Ellie’s Neurologist, whom we adore, who is excellent in every way from bedside manner to expertise especially since she specializes in hypoxic-ischemic brain injury and PVL, dumped Ellie as a patient on Wednesday.

We had our usual good visit: me with my list of questions, her with her thoughtful answers. She looked Ellie over after she was weighed and had her height and head circumference measured (44.3 cm’s there – the most growth she has had in ages and not due to hydrocephalus). And then she asked me if I had any more questions. I said no, that about does it.

Then she said, I have something I want to talk to you about.

Ok, I said.

I can’t be Ellie’s doctor anymore.

Oh no! Why?

Well, my clinic specializes in newborns up to age three and they have been cracking down on me. I would have done it before but didn’t because of the seizures (they surfaced May of 2006).

So the conversation went. She gave me the name of another doctor, sort of new to the hospital. I thanked her very much for being so great and told her I would miss her. I kept getting the vision in my head of our very first visit with her when we had just moved here and Ellie was a tiny little 13 pound 11 month old. She took Ellie right out of my arms and carried and weighed her, herself.

She said to send her a Christmas card. I said I would. She gave Ellie a little velvet flower with a smiley face and attempted to get Ellie’s attention to say good-bye to her but Ellie wouldn’t look at her. I wondered if she knew or was just tired of sitting and wanted to get to school. She went to shake my hand but I gave her a hug, which she returned and thanked her again trying not to lose it.

And we left.

I was in total shock. It was just like a break up. I started wondering what I had done wrong. Was I a pain in the ass parent to deal with? Why Ellie? Was she dumping all her other aged over three-ers too? What had I done wrong? Am I am horrible person? Will anyone love me? (just kidding about those last two)

She had every right to do it. I probably knew when she first took Ellie on that she could only see her until she was three. I also forgot that completely. She’s a great doctor and I am so thankful for all she did for us. I felt really safe with her on the team. I found out later from Ellie's pediatrician that she had just received some gazillion dollar grant to do more neonatal research so she has to free up her time. That was helpful in answering the, is this personal question. Which it wasn't (and it hardly ever is - that's just where I go - luckily somewhat lightly these days - most of the time anyway - but that is fodder for another post).

The scary part is that I called the doctor she recommended to take over Ellie’s care, but he can’t see her until January 2008. So my kid, with the three shunts, seizures, PVL, and cerebral palsy doesn’t have a neurologist on board for 4 plus months?

No way.

I have been freaking out about this since Wednesday. I spent all of Thursday and Friday calling doctors offices, writing them emails and faxing them letters to ask if they could see Ellie in less than 4 months time. I got some other recommendations from Ellie’s pediatrician but they can’t see Ellie for almost a year – all three of them!

Geez! I am sorry to report that the brain injury - CP business is booming in Boston.

It did dawn on me today that Ellie’s pediatrician, who still works with Ellie’s neuro…, er, I mean former neurologist or Ex – neurologist, can hopefully follow up on the scripts I was supposed to walk out with from that last visit where it was decided to change Ellie’s seizure medication dosages, but totally forgot, being completely flabbergasted and in a daze. I did call Ex-neuro’s office about those but totally felt like a stalker even though I explained that I was just following up on what was decided in that last visit. I haven’t received a call back… So I will have to call again, feeling even more un-entitled and pesky.

Which totally sucks.

Ellie not having a neurologist on her medical team is like trying to sail a ship without a rudder: scary and unfathomable.

Maybe Doctors, if they are dumping patients with a chronic condition, should give them notice – like say until they are able to line up another doctor to cover them?

What do you think?


Danielle said...

Oh man what a nightmare! :( That neurologist sounds like a very reasonable person, and it is obvious you all have a good working relationship. Are you sure she meant she can't see Ellie any more starting TODAY? Maybe she meant it was time to start looking for someone else, but she would keep seeing you in the meantime (4 months)? Just a hopeful thought! Could you try talking to her again?

Penny L. Richards said...

Well, at least she told you, and gave you a referral to a colleague... and I hope Danielle is right about the transition. The age-cutoff thing should have been reiterated over the years, so you'd be more prepared.

On the other hand, if the doctor moved away suddenly, or got sick (or worse), she might not even have had a chance to tell you she was off the case, and to say goodbye. As it is, you can still "stalk" her with followup questions until you get settled with a new specialist.

Oh, but I'm right there with you about the sleep, sister--since Jake's surgery a month ago, he hasn't slept for more than two hours in a row. He's never a good sleeper--hardly ever sleeps through the night--but this is brutal. Two more weeks till the casts come off.

Anonymous said...

I really don't think it would be at all unreasonable to call the doctor back, explain the situation, and ask her to continue Ellie's care until January, when the new neurologist is available.

Anything less would smack of abandonment on her part. It is unethical. It would also be reasonable to ask her to talk with the new neuro and assist in smooth transition of care.

It doesn't sound like she doesn't like you! On the contrary, she tried to slip you under the radar, and got caught, from the sounds of it. If she didn't like you and Ellie, and thought you were a pain in the tush, she would have said adios on Ellie's third birthday. Still, regardless of how nice she is, she does have an ethical responsibility to give you time to find another doc.

Our docs give a month notice. My husband got a letter from his primary last year, also giving him a month or so to find a new doc (primary was leaving practice) And that's for an easy to find adult internal med or family practice, not a hard to get into specialist. This really is the way its done. The way she broached the conversation suggested you had no idea it was coming.

best, Sarah

Stacey said...

Oh, that suuuuucks. On so many levels. And of course your neuro should have given you notice - January is a long time away! Maybe she can see you a few more times - she shouldn't have just dumped this on you like this.

I should ask Ace's neuro how long he can see kids. I don't know how much I like him yet (apparently he's GREAT but I didn't really vibe with him during the first appointment and he didn't explain things to me very well - I had to rely on you for that!) but I guess I should have some idea how long he can see Ace.

Lisa said...

I'm so sorry. This has happened to us. I don't know what it is. Don't they realize the stress of people with chronic illnesses to not have a doctor/specialist? Like if there is an Emergency and you end up in the ER, you may need someone to come in that actually has a clue about your situation?

I do think that it is not unreasonable for you to ask this doctor to keep you until January. Even if it is just to be available for emergencies. Don't worry about being a stalker. You're not a stalker. You are a mom who needs to have a neurologist on board for your daughter's well being at all times.

Just a random thought. Is the not sleeping through the night drug related? You may have talked about this before and I've forgotten. If you were in the process of fiddling with seizure medication and it isn't working or causing side effects like not being able to sleep, you are in the midst of an acute care condition and I'll bet ex doc could help you get into see new doc sooner. They always have appts. available earlier. But if you call for just a basic get acquinted appointment, they are going to put you off for four months/a year. If you have a current medical need, like med adjusting, then she ex-doc, has a responsibility to see that you have some continuity of care. It is her responsibility. So call her up, get her to help you, and don't feel bad about it!!!

Dream Mom said...

I think if your Neuro was giving you notice, that she ought to give you six to eight months minimum. The reason is that it typically takes a minimum of six months or more in my area to get an appointment with a specialist at a big academic medical center or the type of facility that employs the types of specialists that deal with the issues our kids face.

Furthermore, as a member of that group, she knows how long it takes to get an appointment with that type of specialist. To dismiss a patient, without a back up plan for that length of time, is not responsible.

I hope that doesn't sound harsh, but let's face it, they know this. Also, if the facility where she works only treats children 0-3, then they should already have a policy in place for this type of situation. For example, when the child turns two, they give the patient a reminder notice that the neuro doesn't take patients beyond the age of three, unless it's a medical emergency, so they need to find another doc, and by the way, here's a referral list. That would seem both reasonable and responsible.

I would expect that she should be able to assist you with whatever medications are needed in the interim and also any medical care that is needed until you get a new neuro on board. That would be reasonable. If for any reason, they can't do that, then I would elevate the issue to find out why they didn't give you notice sooner.

That's just my opinion.

As for not sleeping through the night, I have been there more times than you can imagine. The worst for me is when I have to get up after being asleep around an hour-it's just long enough to fall into a good sleep and hard enough to get up. I had a situation earlier this year where Dear Son was up umpteen times a night; I would log 1/2 to 1 mile a night in just getting up with him alone!

It's not easy being a parent of a special needs child sometimes. I always say it's never the life that is hard, it's the lifestyle.

Here's to getting more sleep tonight and finding a new pediatric neurologist. I am sorry you have to go through this.

Rick said...

I think you are within your rights to call the doctor and explain that the doctor she recommended can't take Ellie until January and would she still consider handling any emergencies or consults until then. It is only 3 months. I know my wife (who is a surgeon) has her cut off at 25 years old and has trouble separating from her patients at that age. I will recommend to her that she notify patients a year ahead so they have time to make arrangements. It seems unconscienable that Ellie should not have a neurologist for all her special needs. It's always tough when someone who is so excellent in their specialty has to move you along to someone new as there are so feww really excellent people out there and once people know about them, it's hard to get to see them.
From the other side of the equation: it's hard for them to clear their schedule to meet their own personal needs let alone all their professional ones...... but that should go on a blog for families of doctors' Hugs to Ellie
(and her parents who are tugging on their heads...) Rick

Kathryn said...


I just spoke with Ellie's old neurologist office and they told me that her doctor will be her doctor until we have our first appointment with the new one!

Would have been REALLY good to know that upon leaving the office that day! But I am glad that is the way it works and I will add that to my list of questions if this ever happens again.

Thanks to everyone for your support and suggestions. We are going to go with Ellie's old neurologist suggestion for the new neurologist and have an appointment set up for early December. Ellie's pedi - who is very well respected and whom we trust totally made some calls to check up on the new guy and thought he would do. He said he is supposed to be very good and will be around for awhile. That last bit - around for awhile has certainly taken on new meaning!

Sheesh. Ok - I need a nap now.

Kathryn said...

Dream Mom - I love that!
"It's never the life that is hard, it's the lifestyle!" Absolutely correct! That is a GREAT way to put it. It's so true. Our life is GREAT. Dave and Ellie and I are all so happy together and we all love each other and get along great. It's the lifestyle that includes getting up every night in the middle of the night that is hard.

I am going to remember that one. It's important - I think many times people look at families who have a person with special needs and just think - glad it's not me or what a horrible life. I hate that because it's so not true. Now i have a way to differentiate for those folks that my penetrate their very thick and sticky preconceived notions - maybe.

Thanks for that!

Anonymous said...

Hi there,

I am a medical student and have spent a lot of time in a "special infant care" clinic that stops at age 3. It's pretty standard for neonatal specialists to stop seeing patients when they aren't babies anymore... which doesn't make it easier or less shocking when it happens to you! In my experience, it's also pretty common for the doctors not to warn the patients much ahead of (if at all) that it is their last visit. This is something my clinic is working to improve.

I also have had the experience of feeling blindsided by a doctor "dumping" me. I'm glad you worked out care for Ellie during the transition and that the new guy sounds good.

rbach said...

Glad to hear you are covered for the transition. Particularly with our kids medical needs being pretty complex, I think a good transition plan is a must with specialists.

WildKat said...

It's great that she will have a Dr. until the new one can see her. I have CP myself, and it seems like a lot of Dr's have "age limits". The worst part is once you turn 16 it seems like you are "too old" and you don't fit into the "system" anymore. You are just "dropped" and forgotten about. I guess you have to fight and be lucky enough to find a neurologist etc. that will work with adults with CP. It's not right.