Who is ultimately in charge of my son's overall health care treatment?
April 7, 2010 6:07 PM   Subscribe

Multiple doctors and specialists for a toddler--but no one seems to be overseeing his treatment as a whole. Who is supposed to be my main source of information when he's having immediate, severe health issues?

My toddler has a primary care physician, and that is who we see for regular illnesses, concerns, etc. The usual. Because of my son's severe GERD, the pediatrician referred us to a gastroenterologist.

Through the GI doc we discovered (via an upper endoscopy) that my son has EE. Well, that sucks, but at least we know WHY he's in so much pain when he eats. Great.

Meds are dispersed while we visit an allergist. Allergist says no apparent allergies show with the prick testing, so we need to stick with the GI doc.

We've been treating his GI issues for about 18 months now, knowing he must have SOME allergy, but not knowing what it is.

This weekend, his face blew up, eyes swelled shut, welts all over his body. Go to the ER, get a shot of Epi and some benedryl, it's an allergy, but we don't know why. Next day, I forced the pediatrician to do CAP-RAST testing and CBC. They said that it was unnecessary, but I insisted that we find out his IgE levels. Tests came back today and he's got a severe reaction to something (IgE through the roof) but again he tested negative to all the allergens.

So I know I have to take this further, because I can't have my toddlers throat closing up and just assuming there's nothing I can do. But who is the person to make the goal/treatment plan? Do I make a list of what I want and take it to the pedi? After all, that's not the doc treating the chronic issues. Do I talk to the GI doc? The allergist said he was fine. Who, in this mess of doctors, is supposed to take the reigns and decide the course of treatment? I feel like I'm really going to just explode on one of these doctors because I'm pushed off to another doc every time I ask a question.

For the record, I really do like these doctors and think they've treated us very well. I don't always trust or use western medicine, and the fact that I'm spending so much time with doctors is a sign that something is *really* wrong with my son.

So how do I handle this so the treatment is coordinated on all levels? Who oversees everything and decides the next step? How do I communicate to the doctors that one person needs to be my son's "go to" doc and care for the whole person?
posted by Lullen to Health & Fitness (12 answers total)
It's supposed to be the primary care doctor. Primary care doctors are your 'medical home' and they are the ones who coordinate care when you've got several specialists on board. After all, each specialist only knows part of what's going on.

IANYD, but I see you've already gotten a lot done. Why do you need to 'make a list of what you want'? Are you planning to request a bunch of additional tests? Just remember, the internet is a wonderful thing, but it doesn't replace medical training, and your doctors should help you decide what testing is necessary and what is just a waste of your money. If a test is not going to change anything about treatment, then there is probably no point in doing it. Not sure what you're planning, but that just goes for general medical issues.

Sometimes people do have allergies and it takes time to figure out what the allergy is to. If there is further allergy testing to be done (I'm not sure on this because I'm not an allergy/immunologist) then you could get that, otherwise, I'd just avoid everything he ate that day and try each thing back one by one with your Epi Pen at your side until you figure it out. Or whatever your allergy doc advises.

At least allergic reactions are treatable and can be preventable.
posted by treehorn+bunny at 6:22 PM on April 7, 2010

Your kiddo's primary care physician is the person who should be helping you coordinate who you talk to, when it's not clear which specialist makes sense.

That said, since your son's face swelled up and he had welts all over, I think the allergist might be more willing to reconsider the case at this point. Unfortunately for some people it is difficult or impossible to determine what is causing an allergy, but that doesn't mean the allergist can just ignore that there clearly is a dangerous allergy present. He or she should be able to help you deal with it, whether or not they pursue finding out the exact cause. Maybe that means getting you a prescription for an Epi-pen, working out a strategy to eliminate potential allergens in your home, or referring you to a group for parents whose kids have scary allergies.

That said, the responsibility for coordinating treatment and overseeing everything often falls to the patient (or the patient's parent, in this case). No matter how dedicated your PCP, they will never have the details of your son's history and condition at the forefront of their mind the way you will, because they just can't. So take notes when you go for visits. Bring written questions. Ask what your next step should be, what you should be doing at home, and who you should talk to next. Use reputable websites to learn as much as you can about your son's condition. Be an advocate for him.

Sorry you have to deal with this, it sounds really frustrating. Hang in there.
posted by vytae at 6:30 PM on April 7, 2010

Nthing the PCP - they should ultimately help coordinate the care and have enough details from the specialists to track your son's progress, even if the PCP isn't specifically treating each problem. And if the allergist doesn't keep looking for the cause of your son's allergic reaction, the PCP can refer you elsewhere - sometimes it's necessary. The PCP probably isn't the best person to diagnose the allergy, but they should be supporting the process by making sure your son gets to the right person.

(IANYD, nor am I an expert in physician referrals or care coordination)
posted by Tehhund at 6:47 PM on April 7, 2010

It should be the PCP, but vytae is right - it will be you. There is a tremendous lack of coordination in patient care, and the PCP won't have the time or all of the information to make sure your son is receiving optimal care. Our PCP is generally a nice and caring person, but in a dire medical crisis, she was useless. If you have no medical training, you can't possibly know whether you are managing your son's care adequately.

You might want to consider a Patient Advocate, if there is one in your area who specializes in allergies or non-specific medical diagnoses. This is someone whose job it is to coordinate care, help you make sense of the information you receive and help you deal with insurance issues (this could be vital). Some are volunteers. Some are paid professionals.
posted by clarkstonian at 6:56 PM on April 7, 2010 [1 favorite]

As someone who also experiences EE, the only contribution I have to make is that there isn't necessarily an allergen your kid is being exposed to. EE can be caused by a variety of things, and the "allergen" (I don't think that's scientifically proven yet) isn't necessarily something you'll ever be able to detect or avoid. It's pretty rare for kids that young to have EE; though. You may want to consider an immunologist or related doc, to check for autoimmune disorders.

The PCP is normally supposed to take charge of this as other commenters have mentioned. However, in the difficult healthcare environment seen today in Western medicine, it's rare to find a doctor who can really follow these kinds of issues up and insure a high standard of care. I think you have a couple of choices; one as already mentioned is to put this on your own shoulders: You'd be doing that anyway even if you had someone to manage the "medical" side of it for you. Another is to consider a concierge doctor, which i'll leave it to you to do some research on.
posted by arimathea at 7:07 PM on April 7, 2010 [1 favorite]

I had a child with very severe health issues - a brain tumor. She was not diagnosed by her Pediatrician, but it was her Pediatrician who noticed a very, very subtle problem that lead to the diagnosis of the brain tumor. Her Pediatrician was from a very very good practice, and stayed in tune with the oncologists, the ER docs, the palliative care, docs and the hospice docs from not just one but TWO hospitals (here in Philadelphia and in Memphis), as needed. That is to say, we requested our specialists to send reports to the Pediatrician, we separately worked to keep her up to date, and we involved her in the care plan for what to do in case my daughter needed to be seen by a local, outpatient, non-oncology doctor. The Pediatrician was not always the one directing this care, but she was an important and valued part of the team who took the time, courtesy and professionalism to fill a very important role.

You need to stay on top of a lot of things - you know your child better than docs will. My husband could 'smell' a neutropenic fever an hour before it started, after a couple of months of chemo. We kept a notebook of every medicine (OTC and Rx) we gave our daughter, and when. Every time she ate, what and how much. Every time she wet or soiled her diaper (when you live inpatient in the hospital with a baby, you get used to weighing diapers, and recording timing becomes second nature). Every time she threw up, or if anything out of normal happened. I cannot emphasize enough how often how many different practitioners told us this was helpful, appropriate and important toward maximizing their ability to properly care for my daughter, and minimize her discomfort. Some tips: get a binder with dividers and ask the docs what kinds of items you need to monitor. In that binder, keep a record of exactly what prescriptions are being used, and what dosages. Having the discharge statement from any hospitalizations is helpful. Ask docs to prepare detailed instructions, and bring those with you when you see other specialists. It really, really, really, really cuts down on the downtime, waiting time, double-checking and doubt that you and your child will have to undergo. Get care plans for "if X happens then do Y" and so forth. Docs won't always volunteer them, but we asked for them and usually received them. I know this sounds time consuming, but the organization saves effort, frustration and stress (for you and the child) in the long run. And one of the nice things about it is that docs sometimes doubt parents reports of problems, but if you've got 3 months of consistent note taking to prove it, then...THEN they listen.

In my experience, medical practitioners are happy to have a parent who is kind and understanding of their limitations, but also ALL OVER their child's care. Know stuff. Ask questions. Courteously double check/doubt things when appropriate. Listen, ask questions, listen to the answers. If your Pediatrician can't be a valuable, cohesive, central part of this team, get recommendations from the specialists for one more equipped to respond to and monitor your child's health problems. Also, try to get involved with other parents in your area, or nationwide, to determine what steps they've used to best monitor and guide care.

Being the parent of a chronically ill child requires active leading. The pediatrician is central, but you've got to manage all systems. You've got to tell them to talk to one another. You've got to be courteously aggressive at every moment you interact with a medical provider. "Allright Allergy Doc, before we are discharged I want to confirm the following: Have you/will you send a report to the GI doc and the Pediatrician? What are the discharge instructions? Does anything change from an Rx standpoint? What side effects do I expect? (Most important) What kinds of things should I look out for that signal an urgent or emergent situation might be happening, and what steps do I take? Are there any limits to activity levels? Etc. Etc." I am telling you, respectfully and kindly refuse to sign discharge papers until you get every question answered. And then once you are home and settled in, get everything in your binder.
posted by bunnycup at 7:14 PM on April 7, 2010 [7 favorites]

I happen to have two close friends with separate, odd, and complex allergies, and since they both had a hard time getting diagnosed as adults, I mention these things in case you haven't run across them or in case they pique something in your mind.

One of them has multiple, actual FOOD allergies. She was only able to get properly diagnosed with a blood test AND a poo test. She's allergic to soy, casein, and gluten to start.

My OTHER friend has Oral Allergy Syndrome, which is basically that her pollen allergies are so incredibly bad that she has reactions to foods that "impersonate" certain kinds of tree and grass pollens. I know you said he was tested for allergies, but I mention this because she has pretty severe GI issues related to never-ending post nasal drip. Not up to EE, but with certain foods (melon, avocado) she experiences closing of the throat and tingling.

I hope you can get his allergens diagnosed soon. Good luck.
posted by Medieval Maven at 7:16 PM on April 7, 2010

Also: Sometime, at some point, you may have a meltdown at a doctor or nurse. They may be telling you something, and you are just terrified. Or you don't beleive them. Or your child is sick and hurting and not feeling good and they can't make that stop soon enough. It will be okay, you will get through that. You'll have a meltdown, and then wish you hadn't, and then apologize. I am telling you right now, that you are ALLOWED. You don't have to be able to handle it every moment of every day. People will understand, and if you ask people to, sometimes they will pick up the slack. But when I say "courteously aggressive" above, and "respectfully" and stuff, that is important. Get a good group of docs on your team, and then get a good relationship with them. That is how sometimes, if you are lucky, as I was, they give you their personal cell phone numbers and tell you it's okay to call at 2am on a Sunday - or any other time - if you really need to.
posted by bunnycup at 7:28 PM on April 7, 2010

I think Medieval Maven may really be onto something with her suggestion of Oral Allergy syndrome.

It's initiated by pollen, which is hitting peaks right now in many places in the northern hemisphere, and it can give rise to the symptoms and signs you've mentioned in your son:

Swelling of the lips, tongue, and uvula and a sensation of tightness in the throat may be observed. Seldom it can result in anaphylaxis.[5] If a sufferer swallows the food, and the allergen is not destroyed by the stomach acids there is a good chance that there will be a reaction from histamine release later in the gastrointestinal tract. Vomiting, diarrhea, severe indigestion, or cramps may occur.[6] Rarely, OAS may be severe and present as wheezing, vomiting, hives and low blood pressure.[7]

Apparently it's often not found with the usual extract-based prick testing:

Prick to prick testing with fresh foods is more reliable for some extremely labile allergens such as those found in apple than testing with commercial extracts which will commonly give a false negative. If the history is suggestive and the skin prick test negative, fresh foods should be used....

To confirm OAS, the suspected food is consumed in a normal way. The period of observation after ingestion and symptoms are recorded. If other co factors like combined foods are required, this is also replicated in the test. For example, if the individual always develops symptoms after eating followed by exercise, then this is replicated in the laboratory.

It sounds to me as if your allergist is the weak link in your chain. I would want someone experienced in dealing with OAS.
posted by jamjam at 12:02 AM on April 8, 2010

Your primary care doctor is the person who is supposed to be holding all the strings, but in addition to what others have said, a thing that will help is that if you get copies of test results etc and carry them with you to appointments. When I was pregnant and dealing with a hematologist as well as my ob, it was very frustrating to have an appointment and find that a lab test result that was supposed to be sent to the specialist hadn't gotten there. I learned to make sure I had copies with me. Keeping your own notes will also help--sometimes you'll find yourself with a doctor who is saying, "well, the blah-blah-blah test was negative," and it will be really helpful if you are on top of things enough to say, "Actually, that test showed a mild positive," or, "No, we had decided not to have that test at that time."
posted by not that girl at 6:03 AM on April 8, 2010

jamjam, it doesn't sound like OAS to me.

The allergic reaction Lullen described is anaphylaxis and can occur with any allergen. She didn't describe any GI effects such as vomiting or diarrhea, just pointed out that her son also has severe reflux and EE, which often is found concurrently with other regular allergic issues like asthma, eczema, and allergic reactions. A more straightfoward explanation would be that in addition to EE, her son has a regular allergy or multiple allergies.
posted by treehorn+bunny at 6:14 AM on April 8, 2010

In large part, the person is you. Request copies of all the medical records. Get a binder and organize them. Add pages where you type out symptoms, adverse events, etc. and the date and time that they happen. Take this binder with you to every appointment. Be the annoying parent who asks a lot of questions.

Without hijacking the thread, just let me say that if my stepmom hadn't done this for my brother, I hate to think how much worse off he would have been.

I don't mean to suggest that the doctors aren't compentent, I'm sure they are. But aren't all together in the same room discussing this case. You're the common link here.
posted by Knowyournuts at 10:29 AM on April 8, 2010

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