Zelophehad’s Daughters

Venting (about medical issues)

Posted by Vada

This blog isn’t usually about kids or medical issues, but sometimes we all need a chance to vent. And since I know the posters/readers here deal with a whole slew of medical issues, I figure someone besides me probably needs a place to vent about them.

I’ll start.

Last Thursday was not a good day. In the afternoon I had an appointment for my second son with a pediatric GI doctor. I was really excited about this, because I’d just finally gotten the referral through on Tuesday, so I hadn’t expected an actual appointment for a couple of months. But he’d had a cancellation, so we were able to get in right away. Now, my son has always had digestive issues. (Warning, the rest of this paragraph might be TMI, so feel free to skip ahead.) If he eats soy in any form he breaks out in blisters all over his butt and legs. He’s had diarrhea pretty much his whole life. When we took milk and wheat out of his diet (about 6 months ago) he went from having 5-6 messy diapers a day to 1-2. They still aren’t well formed, and they still have undigested food in them, so we haven’t fixed everything, but things are much better. After staying around 17 pounds from 9mo to 19mo, he’s gained 5.5 pounds in the last 5 months. Obviously, there are foods he can’t tolerate. Unfortunately, all of his allergy tests (IgE blood and skin, IgG blood, and patch, for those who know something about allergies) come back negative, so I have no guidance as to what else may still be contributing to his digestive issues.

I told all of this to the GI doctor, in long and excruciating detail (more detail than I’ve gone into here). A lot of it was also on the paper with his history, which the GI had on top of his clipboard in his hand. When I was finished, the GI looked at me and said, “So what makes you think he can’t tolerate these foods? Just the history you’ve given me?” Well, yes. I just said that, didn’t I? My response was, “When he eats something with soy in it, he breaks out in blisters; when he doesn’t eat soy, he doesn’t get blisters.” His response: “Well, yes, that is pretty much the definition of an allergy.” Yes, I know. It got better from there. He kept telling me that obviously his poop (can I say poop on this blog? well, i did) is different from normal poop because he’s on a weird diet. Did he not just hear that his poop was worse before we went on the weird diet? Then he suggested that he just needed more fat in his diet. Forget the fact that he eats hamburger, eggs and peanut butter pretty much every day. He kept suggesting dairy foods to get more fat in his diet, and I kept having to remind him that we don’t do dairy.

His position summed up: My sons bowels are completely normal, his poop is completely normal, and he really could tolerate the food that I’ve removed from his diet. But he’ll run a few tests just to indulge the crazy mom.

My position summed up: AAAAARRRRRRRRRRRGGGGGGGGGGHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!

And that was only the beginning of the bad day.

My oldest son, who I’ve blogged about before, has autism. He’s getting to an age (3.5) where we feel like he’d really benefit from being involved in more activities, but finding activities he can and will do is a struggle. We thought we’d try some gymnastics at The Little Gym near us. Spencer loves to run, jump and climb, and we thought he’d really enjoy gymnastics.

My husband went to the gym earlier in the day to ask about their classes and talk to them about Spencer. He got a brochure that talked about the different classes and gave a schedule. He explained that Spencer has autism. They said this was no problem, that they had a lot of special needs kids in their classes, and they were experienced in dealing with it. My husband asked about possibly needing to do a parent/child class rather than the regular 3yo class, but they said he really should do the 3yo class, and be with his age group, and everything would be fine. So we decided to take him to the 3yo class that night to try it. We were really excited.

It did not go well. The class is held in a gym with a mat area and a bunch of gymnastics equipment. We were excited for him to do gymnastics partly because he loves to climb, but in the 35 minutes we were there, the class never once left the mat area. Spencer did. At first the gym manager told us not to worry about it, it was normal for kids to explore the gym the first time they were there. I thought to myself, “This is not something that’s only going to last 5 minutes. He’s going to keep wanting to play on that equipment, and he’s going to do this every week, for a large part of the class.” I said something to that effect to the manager, too. About 10 minutes into the class the instructors (there were 2 for about 10 kids) called the manager into the gym to help, because one of them couldn’t keep getting my son off the equipment while they were trying to get the other kids involved in things on the mat. I wasn’t particularly concerned that my son was climbing on things, as he has the best balance of anyone I know, but I understood their concern with him climbing when the class was supposed to be doing other things. Of course, I also understood his desire to climb on the fascinating equipment.

So things weren’t going as well as we hoped to begin with. Then my son started pushing. I saw him push one of the other children, and I cringed. (Note: he did not hurt the other child. It was a fairly gentle shove, one that said “Hey, pay attention to me” in Spencer-talk.) I should have gone in there right then. Pushing is not allowed at our house, and Spencer gets a time out if he pushes. He continues to push sometimes anyway, but it’s not tolerated. I didn’t go in, because the gym specifically asks parents not to go in unless the instructor asks you to. The instructor didn’t ask, so I didn’t go. If I had, maybe the pushing would have stopped there (then again, possibly not — some days are better than others for not pushing, hitting, etc). When he pushed the second time my husband went into the gym. He tried to get Spencer to pay attention and participate in the activity, and it worked somewhat. But then he pushed again, and we left. I’m not sure that the manager asked us to leave, but I suspect she did. I didn’t ask my husband — I was upset enough as it was. I could tell she was glad we were leaving (though not in a mean way). She suggested that we try a parent/child class (yes, the one she’d said earlier in the day that he was too old for and we shouldn’t do).

We took all three kids out to the car, and I sat and cried. I don’t want my son to push other kids, but I’m sometimes powerless to stop it. I want him to be able to participate in activities with his peers that will enrich his life, but sometimes I wonder if that’s ever going to be possible. That day I was especially frustrated because the gym manager had told us that he would be able to participate, and that it wouldn’t be a problem. She sounded so sure, she said they had lots of experience, and I trusted her. My mistake. If she’d just said, “Well, we’d like him to be able to participate, but we don’t have a lot of experience with this and I’m not sure how to make it happen,” I would have been all right with that. It’s okay to be overwhelmed by people with special needs, it’s okay to not know quite how to deal with them. I understand and respect that. I’ll be really happy if you show an interest in wanting to make things work in spite of your uncertainty. I’ll be happy to talk about what we might need to do so my son can participate, and I’ll be happy to help in any way I can. Just tell me the truth. I was so much more upset because I really thought that they had experience with this and that it wouldn’t be a problem.

So there you have it — screaming and crying (all by the mom, rather than the toddlers) all in one fun-filled day.

How about you? What medical issues (your own, your childrens’, you parents’, etc) have you frustrated? Feel free to vent all you want.

28 Responses to “Venting (about medical issues)”

  1. 1.

    Yeah, it seems like every doctor says something else, so you just have to go to different doctors until you find the answer/treatment you like and find effective. I know it’s ridiculous. My toenail has been giving me troubles for the last year now, and the first doctor kept saying it would be fine, completely ignoring the fact that it HURT. He said he could operate on it since I wondered if it was ingrown, but I declined because he said I wouldn’t be able to walk for six weeks and i was about to go on vacation. Finally, I went to my parents’ foot doctor, who snipped some nail, filed it down, and told me all about what the real problem was. It was not ingrown. Can you imagine if I had let the first doctor operate right then?!? He was also very honest about how I could have problems for a long time to come, which I have, but which I appreciated hearing.

  2. 2.

    My story of medical aggro:

    When I went in for my physical, I had to fill out about 10 pages of medical history, sign a bunch of forms and waivers, and give the woman at the desk my insurance card so she could make a copy of it. When I came back the very next day to the same building, same doctor, same receptionist for an EKG, I had to do the same drill with the paperwork all over again, including the copy of the insurance card. One week later, I came back yet again to see the specialist to whom the doctor had referred me. They share office space, and wouldn’t you know it, I was required by the same receptionist to wade through their nightmare of paperwork a third time within seven days.

    I realize this is nothing compared to your story (maybe I really am just a whiner), but I felt like reminding the doctors that there is this thing called a computer which was invented in the last century and which can help reduce the burden of work they require of their receptionist. Also, if they really need three identical copies of paperwork, there is this thing called a copier which really can be used to make copies of all kinds of paper, not just my insurance card. When I saw that their office procedures werre stuck in the 1950s, it did nothing to inspire my confidence in their care.

    Vada, I am so grateful that there are good parents like you and your husband. My guess is that this is more than you bargained for when you got married, and I admire you and all the other parents who make adjustments and do their best. It is wonderful to see this kind of love in action.

  3. 3.

    May I defend the gymnastics manager? Perhaps her wording was at fault, but I don’t think she did a bad thing by suggesting that your son try the group class. That is, after all, your ultimate goal, is it not? I am sure you and she both know that it is extremely difficult to predict how any 3 year old, let alone an autistic (such a diverse group) one would react to such a situation. I think you give her too much authority in feeling that she assured you it would be OK–a mom couldn’t have, a doctor couldn’t have, and certainly a gymnastics manager could not have. Just imagine that she had said something more like: “let’s try him in the group class and see how it goes.”

    It wasn’t perfect. FWIW, I can easily imagine ANY 3 year old I know (and I know quite a few) acting exactly as your son did.

    I think the child/parent class is a great idea and maybe once he feels more comfortable in the environment (and less curious :) ) and understands the expectations, try a group class once more.

    Your GI doctor sounds so unfortunate. Sorry.

  4. 4.

    Mark, the NY Times recently ran an article explaining that doctors don’t use electronic medical records because the technology is still too expensive. When I worked to draft legislation to allow for electronic prescribing in my state, I was able to peer into the systems for medical record keeping, and it’s not pretty (particularly when you factor in HIPAA). As the article says, however, electronic medical records reduce medical errors and save lives. Encouraging doctors and hospitals to adopt and use electronic records should be a cornerstone of the next piece of health care reform.

    Vada – your story about your doctor is far too common – particularly when it involves male doctors counseling mothers. The son of one of my good friends sustained serious damage to his ear after doctors kept dismissing her concerns about infection. Because the doctors dismissed her as another “crazy mother”, the infection spread to his bone and he had to spend a week in the hospital and undergo multiple corrective surgeries years later.

    It seems that unless your child is bleeding out of his eyes, you’re being hysterical and should go home.

    I hope things get better for your son. Don’t give up! :)

  5. 5.

    Vada,

    Oh, gosh, that sounds like a truly awful day.

    Okay, so when I was in the hospital after giving birth this Spring (an extended stay – I had a c-section), a nurse was in the room when my husband reminded me to take away my antidepressant. She tried to confiscate them. I explained that my OB and the hospital were aware of my medication schedule and the fact that I had the pills with me, and anyway, one can’t just go cold turkey on psychiatric medication. The nurse responded that since I’m trying to breastfeed, I really shouldn’t be on that sort of medication. Que lengthy story about my doctors and I carefully planning and executing a medication switch before I even got pregnant, just so I’d be on a pregnancy- and breastfeeding-safe med. The nurse still wanted to take my meds away, and initially refused to talk to any doctors about the issue, so my husband had to pretend to take the pills home.

    The nurse finally agreed to talk to a doctor, and she had him approve one dose, which she brought to me with much ceremony and disapproval. Then, she tried to cut it in half on her own initiative. The next day, when I asked another nurse about it – my dose was overdue – she was confused; there was no note on my chart about antidepressants. The resident came in and told me that after the prior day’s fiasco he’d deleted the references, as my meds wouldn’t interact with anything else I was likely to receive. He told me to take my medication as I would have at home, but to hide it from the nurses!

    On the lighter side, someone in the nutrition department marked my food allergies down as allergies to all food, as a category. When it came time for me to eat solids, I got some very worried inquiries from the kitchen staff – “You’re allergic to food? ALL food? What do you eat? What can we possibly feed you?”

  6. 6.

    Vada, that sounds so frustrating. I’m sorry that all happened on the same day.

    ECS’s friend’s story is the kind of thing that really scares me. For me what’s so hard with doctors (any professionals, really, I suppose) is to know when to accept their professional judgment and when something just isn’t right.

    Taryn, whoa! I don’t know much about the medical world, but how can a nurse just arbitrarily decide you shouldn’t have a particular medication without even consulting the doctor? That strikes me as unbelievably presumptuous. I’m even more amazed that the resident told you to sneak your own meds behind the nurses’ backs? Wow. I don’t entirely what to make of that.

  7. 7.

    Vada,
    Let me say that I am so sorry about your day. I would have been terribly disappointed and upset as well.
    My two oldest sons have severe hemophilia, so we see our fair share of doctors. We’ve been lucky, though, in having excellent treatment and 24/7 access to a friend/nurse who also has a son with hemophilia. Finding a healthcare provider who cares about my child has been a lifesaver.
    EmilyCC’s son has allergies to soy and dairy. I wouldn’t be surprised if she pops up with her own stories or suggestions.
    Have you found a support group for people who have children with severe allergies? Perhaps they could refer you to a physician.
    My oldest son (nearly 6) has behavioral problems that are somewhere in the autism spectrum, ADHD arena. He really struggles during structured events, and has no regard for authority. When I started him in K last year, I knew it would be horrible, but I listened to everyone else who said, “Oh, once he starts school, he’ll figure it out.” or some other soothing nonsense. It’s been hard, and he’s doing K again, but this year I’m hoping to have him evaluated and see if he can get some help for his attention/impulsivity/aggression problems.
    Oh, we found a woman in our neighborhood who has a little tumbling class in her garage. She has 5 or 6 students (and my son’s the only boy) and they love it.
    Perhaps there’s another kind of group setting that your son would thrive in, especially with you by his side.
    In the meantime, my heart goes out to you. Please keep us updated as your situation changes and improves.

  8. 8.

    Eve,

    Yeah, I didn’t know what to make of it, either. I was at one of the best hospitals in the country, and most of the staff were caring, respectful, and medically educated, but still…

    During my labor – which started without intervention, and which progressed normally – another resident tried to sneak in and put pitocin in my drip. Without my consent. He just walked in while I was busy talking to a nurse and started to put the stuff in my IV bag, and he seemed offended when I asked what it was. When I refused consent, he argued – and then he came back three times to try and coerce me, saying it was standard care. (My OB didn’t seem to think so, and it’s most emphatically not the hospital’s policy; I checked before I decided to deliver there.)

  9. 9.

    Since you asked, and I have not complained about this anywhere but to my husband. I am tired of having to go to so many different doctors to deal with all the different problems I have. I wish I could have one doctor that looks at me as a complete person and works to help that whole person feel better.

    I have a reumatologist, endocronologist, urologist and because I am a woman, I should have a gynecologist. We also have a family doctor that sees everyone in the family. I put my foot down and refused to see a pediatrician because I wanted at least one doctor that knew my entire family and treated us all.

    I’m just tired of feeling like I am seperate diseases. I often wonder how my various issues interact with one another.

  10. 10.

    Vada,
    You must, must, must have your second son (the first one in this post) tested for celiac disease, which is NOT an allergy, but an autoimmune disorder in which the body does not process certain proteins found in some grains (mainly wheat, rye, barley, some oats, spelt).
    It’s possible that in all the allergy testing that they did the basic blood test for celiac, but that test has a high rate of false negatives. There are a series of blood tests, and sometimes they do a small intestine biopsy (which is hardly ever really necessary, but some doctors will push you to do it).
    I’m not a doctor, so I obviously can’t diagnose your son. However, I had a lot of his same symptoms and went from doctor to doctor for 28 years (yes, really) undiagnosed. I wouldn’t wish that on anyone.
    Unfortunately, may GI doctors are not tuned into celiac. There has been so much new research, just in the past ten years. I had to go outside my health insurance providers to find someone who finally helped me. (A good resourse for information is the Gluten Intolerance Group of America in Seattle–they have a great website.)
    By the way, the treatment for celiac disease is just elimination of the problem foods–not as difficult as it sounds and not expensive.
    You know your child a lot better than that doctor does. His response was the same response I got from multiple doctors.
    On another note, my children are all adults now, but I had the best pediatrition when they were young. He was a little Korean man who thought that mothers knew what was best for their children. He alway listened, never intimidated and always took the simplest approach.
    One thing to remember with doctors/nurses/etc.: they work for YOU. You pay the bill, so you make the decisions.

    Good Luck!!

  11. 11.

    I’m sorry, Vada. The first line of my previous reply sounds like I’m ordering you to do something. Quite the opposite. You are very capable of making decisions for yourself and for your children. My three-year-old grandson has had some of the same problems, but he is not celiac. He does have some definite food sensitivities that don’t show up in any allergy testing. His mom has had to come up with the answers on her own.
    Your son’s symptoms do fit the classic profile for celiac, though, which is why I said what a did. Unfortunately, the same symptoms can indicate other problems too, so it’s hard to tell. You are the best judge.

  12. 12.

    http://discovermagazine.com/2007/apr/autism-it2019s-not-just-in-the-head

    Vada, here’s a good article about autism’s associated immune and digetsive disorders.

    anyway, get a new gastro doc. Ours took the chronic diahrea seriously. she ran stool tests for enzymes and sugars. she did new blood panels for the allergies, she did an endoscopy for to take tiny samples of the walls for testing, including celiac and have a look for inflamation.
    There might be certain docs at your nearest children’s hospital with more experience with spectrum kids- you can try calling and asking about that, and asking the local autism community who they like so you don’t waste more time with doctors who don’t have any answers for your specialized situation.

    Taryn, that nurse/medication story is horrible!

  13. 13.

    Vada! I left out what worked! My post was answering what a responsible gastro doc would do, but not what fixed his digestive issues!

    so, he did a severe elimination deit. i’m sure you know GFCF, but this was more, becuase tests showed him slightly allergic to every food there is. He had like, 5 foods he could eat. we did the DAN! dr thing and lots of supplements. For many months, and that didn’t help. well it didn’t give him hives, so that was good but it didn’t change the liquid poop, didn’t help behavior, etc.

    what worked was a 2nd-opinion allergist who prescribed him Singulair just to see what it woudl do- and miraculously, he now tolerates ALL food without diahrea or rash! (exceptions- soy and fruit juices)

    I think you have my contact info, I could chat forever if you want…

  14. 14.

    I am currently pregnant and am having a hard time keeping my thyroid hormone levels stable. I just got back from a disastrous visit with my endocrinologist where he basically accused me of not taking my thyroid medication to hurt my baby. When I protested he told me he could get me a referral to a psychiatrist if I needed help with my “personal issues.” At this point my husband stepped in and told the doctor that what he was saying was ridiculous and that the accusations he was throwing at me were inappropriate. My doctor then backed down and apologized.

  15. 15.

    Poor girl. I’m just sending some cyber-sympathy; what a sucky day. You don’t need my advice, so I’ll sqash my annoying tendency to give it!

  16. 16.

    I don’t think I want to even get started right now. The past few months have been such a medical headache for me and I’m so so so tired of having teams of doctors who don’t communicate well with me or with each other. Fortunately I have a sane and dogged PCP who is fighting some of my battles for me.

    My nightmare was on Monday afternoon when an attending doc who has NEVER SEEN ME BEFORE and gave only the most cursory glance at my chart said that all of the drugs and treatments that I’ve been through over the past few months have been pointless because my body’s own immune system could’ve handled it all if I had just let my infection run its course.

    Egads–what a load of rot from a man who has NO CLUE about the pain and trauma of this whole ailment. If I had been a little old lady I would have slapped him across his cheek for his impertinence. Honestly. What a jerk.

    I think most doctors are good people, but they see far too many patients everyday and they often form opinions without enough factgathering or listening to their patients.

  17. 17.

    I work at a pediatric clinic and we have therapists who work with special needs children and who hold special gym classes that are small and have one instructor per two children. I don’t think it’s more expensive than a gym class at a regular gym. You could search for some pediatric occupational or physical therapists in your area to try to find a gym program or something like that for your son!

  18. 18.

    You’ve got my sympathy. Tourette’s Syndrome is my youngest child’s problem and her mother feels so cheated some times.

  19. 19.

    Thanks for all the great comments so far. I’m going to try to respond in order.

    Michelle,
    I’m so glad you found someone who could actually tell you what was wrong. It’s nice to figure out what’s going on, even if there’s no easy answer. Do you mind sharing what was wrong? In the list of myriads of medical problems my kiddos have is some very weird big toenails on the first and third (they take a 90 degree turn and start growing straight up). The 3.5yo seems to be bothered by them sometimes, and I’ve wondered if they’re ingrown. They don’t really seem to be, but I’m just not sure….

    Mark IV,
    Thanks. And I also get annoyed filling out all the stupid paperwork at doctors offices, too. Luckily I’ve never had to fill out the same paperwork for the same office… that would probably have put me over the edge, especially since I’m usually trying to wrangle my little boys while I fill out the paperwork.

    ESO,
    I don’t think the gymnastics manager was wrong to suggest trying the 3yo class — if that’s what she’d done I wouldn’t have been bothered at all. What bothered me was her assurance that they were equipped to deal with my son in that class and that they had a lot of experience with special needs children, when it quickly became clear that they had no clue whatsoever.

    ECS,
    Thanks for reminding me it could be worse :) Luckily most of the doctors I’ve had have at least listened to me and believed me — usually the only problem is that they have no suggestions to offer because I already know more than they do about the possible problems :(

  20. 20.

    Taryn,

    Wow. I can’t believe he was trying to put drugs in your IV and was mad that you were asking about it! I did get pitosin with the last baby, but if anything, the doctors seemed reluctant to suggest it, not wanting to push me if I wanted to let things progress naturally. (I didn’t want things to progress naturally — for me natural labor can take weeks to dilate, and my water had been broken for a number of hours already. With the lowest dose of pitosin the baby was there an hour later.)

    On a somewhat similar note, after the birth of my first son a nurse tried to give me a rubella vaccine. I refused and told her that whatever her notes said, I was in fact up to date on my vaccinations, and had no intention of letting her give me one. It turns out another mother on the floor needed one… And then, even though they didn’t give me one, they tried to charge me for it, and I had to dispute it.

    I’m actually not too surprised that the doctor told you to just take your meds and not tell the nurses. They aren’t supposed to let you take anything that’s not prescribed by the hospital, but then they have to keep checking that you can continue to receive prescriptions, etc. As long as you’ve spoken to your doctor about possible drug interactions it’s much easier to just not bring it up with anyone else. I can’t believe that the nurse was lecturing you about not taking anti-depressants, though, especially at what is often an emotionally fragile time!

    I’m highly amused that they had down that you were allergic to all food :) For future reference, those who are allergic to all food (yes, they do exist) are usually on an elemental diet of either Neocate or Elecare. But if there are real foods you can eat, those are infinitely preferable :)

  21. 21.

    Sexism in medicine has been a huge problem. For years, the medical establishment thought that colic in babies was an artifact of hysterical mothers. It was only when men tried taking care of such babies that it was taken more seriously.

    Nausea in pregnancy was largely thought to be psychosomatic, a sign of immaturity and rejection of the fetus. When I was pregnant the second time in the 1970s, my husband asked how sick I might get, and the doctor said, “As sick as she wants to be.” Actually, I have read medical journal articles from the very early 1900s which talk about the tragedy of death from morning sickness and encourage an abortion before it is too late. Because in an era before IV hydration, pregnant women did die from vomiting.

    What changed thought on that issue was 1980s research from Scandanavia showing a >90% correlation between intolerance of birth control pills and nausea during pregnancy, suggesting a hormonal basis, as well as studies from Japan that also discussed hormones from a different angle. American and British physicians had so accepted the psychogenic theory that they never considered such explanations. It’s interesting to note that when the cause shifted from being psychological to physical that the terminology also changed, from the folksy “morning sickness” to the more medical-sounding NVP (nausea and vomiting of pregnancy).

    Then there is the issue of heart attacks and women. For decades, men were more likely to have a heart attack, but women were more likely to die from them. Why? Because men’s symptoms, which were considered the “typical” symptoms because men had them, are different from the way women present, and women would be sent home because it was “all in their head.” Now that women’s symptoms have been studied in more detail, things are better.

    But nowadays, I think the prejudice has shifted from gender per se to prejudice against women who “don’t work,” who are full-time parents. When my last baby was about a year old, I went to the Mayo Clinic for help with sleep problems. They patted me on the head and told me it would magically disappear when I returned to the workplace (the idea being that I worried too much about the family because I didn’t have anything “better” to do with my time).

    Actually, it took surgery some years later to correct the problem, and I resent the years I had to suffer unnecessarily because they didn’t do tests.

    So yes, it is challenging for women, and especially mothers, to be taken seriously.

  22. 22.

    The stories of incompetent medical care are sad and frustrating, but at the same time it’s comforting to me because it’s not just me that happens to! I know that sounds a bit odd, but there’s comfort in not being alone.

    I actually had a good doctor experience last year, and it totally shocked me. I fully expected to basically have my concerns blown off (based on past experience), so when the doctor was actually willing to do testing and then keep trying different things, I was so incredibly relieved.

    I started having really bad allergic reactions last year (hives, face swelling up, throat swelling up so I couldn’t breathe). My PCP wasn’t particularly helpful, so I went to an allergist. He did a lot of testing (which came up without answers) and then he kept trying different drugs to get the reactions to stop (nothing seemed to work except prednisone, and he was trying to find something with fewer side effects; never did find anything else that would help, but I appreciated that he was trying to find something with as few side effects as possible). I had regular appointments with him to discuss the frustrating failure of eliminating almost everything from my diet (I got down to nothing but rice and chicken, having eliminated them earlier to no effect, and the reactions continued to rage). It took a few months, but he kept working with me until we finally figured out it was the freakin’ birth control pills I was allergic too. So I’m no longer taking them. Unfortunately, my immune system has since clearly generalized to my own hormones (stupid immune system), but at least I have an allergist who actually listens and continues to try things to help.

  23. 23.

    A good pedi GI is hard to find (my son sees my old pedi GI–what will we do when he retires?!). I HATE the crazy mom look; I guess since allergies are so mysterious, it’s easier to think the mom’s crazy than that the kid is sick.

    The gym story breaks my heart. I hope you find a class for Spencer that works.

  24. 24.

    Jessawhy,
    I am in a couple of groups for moms of kids with food allergies and on special diets. They’re really the best resource I’ve found anywhere. The biggest problem with the GI is that he’s the only ped GI in the area, so it’s pretty hard to go anywhere else. I think my son’s problems are a little beyond him, and I’ll probably try to go to a more specialized clinic, but they usually won’t accept you unless you’ve already been evaluated by a GI. Oh, and you should definitely get your son evaluated, and hopefully he can qualify for some help. It makes a huge difference even to just have teachers who are aware of any special needs and how to best work with them. I don’t experience where you are or with kids as old as yours, but if you want any suggestions or to talk about evaluations, etc, I’d be happy to.

    Tiffany,
    I totally understand about wanting one doctor who can look at you as a whole person. We have a ped, an allergist, a GI, a developmental ped, and I have an OB/GYN. There actually more doctors who are starting to treatyou as a whole person these days — the hard part is that most of them don’t take insurance. But one way to find one if you’re interested is to search for a DAN! doctor (it stands for defeat autism now, but I know people with ADHD, OCD, chronic fatigue and fibromyalgia who have seen them). They try to look at how your brain, gut, etc, all interact to cause problems and how fixing one can fix other things, too.

    CatherineWO,
    Thanks for the suggestion (and it didn’t sound like an order). He actually has had a celiac screen — the one by prometheus labs, which from what I can tell is the definitive genetic screening for celiac. He doesn’t have celiac — that doesn’t mean he can necessarily tolerate gluten, but he doesn’t have the genetic markers for celiac, at least. He is on a gluten free diet currently.

  25. 25.

    Wow, Vada, your day sounds incredibly frustrating.

    Several other people have already made points along this line, but you might enjoy a book I read recently, Jerome Groopman’s How Doctors Think. It’s a quick little read in which Groopman dissects how doctors are prone to make all of the same types of mistakes that all of us are prone to. For example, they’ll get an idea in their heads about what’s causing a particular group of symptoms, and then they’ll focus only on information that confirms that diagnosis while ignoring anything that suggests the cause might be something else. This is commonly called the confirmation bias; Groopman uses another phrase I like to describe it for doctors in particular: “diagnosis momentum.” Groopman also talks about how doctors are influenced by the availability heuristic–if they see lots of people suffering from a particular malady, they can get to overdiagnosing it just because they see it so often. It sounds like you’re already plenty familiar with these kinds of doctor errors. I thought reading about other people running into them might be validating.

    One more really interesting point that Groopman makes several times is that doctors are frequently not very good at communicating their level of uncertainty about a diagnosis or the value of a treatment, often because they’re not aware of it themselves. So they might present all kinds of diagnoses with the same level of certainty, but in reality there are some they’re 99% sure of and others they may only be 50% sure of. I guess that’s of too much value unless you can somehow get them to say which things they’re more or less sure of, but maybe it would help to know up front that they’re probably not truly equally confident about everything so you know where they’re more likely wrong.

  26. 26.

    Gonna add my stories too. With my first son, the doctors were so patronizing to me. In stead of going into labor, I go into hypertension, so I have to be induced. However, the doctors told me it was preeclampsia and that they had to start my labor ASAP. I didn’t find out until my second son was born that you can try things like lying on your side and drinking lots of water to alleviate the symptoms (not make them go away, but alleviate them). With number one they had me on pitocin and magnesium sulfate. I was so loopy during labor that I hardly remember anything.

    When my second son was born, I had a fantastic midwife, but a crappy attending nurse. It turns out she sneaked our baby some formula against our permission. We didn’t find out until the pediatrician came in the next day and said she saw a dose of formula on the chart. I was incensed. Some babies have a hard time learning to nurse (both of mine did), and their blood sugar might not be perfect, but they get the hang of it and are fine. She didn’t give us any more than two tries before she whisked him off to the nursery (again without any real consent, just nodding and smiling as she backed him out of the room) and gave him some formula.

    My second son also has two conditions. One that affects his optic nerves (he’s severely visually impaired) and one that affects his endocrine system. Our ophthalmologist is a moron and we’re working to find another one before his next appointment. He’s always talking down to us, or muttering things to his tape recorder without explaining them to us. Our endocrinologist is a doomsday preacher. She had me convinced that my son would have to be on growth hormone at a little over a year–turns out most kids don’t have to be on it until they’re three or four (and hopefully he won’t end up on it at all). And sure enough, he’s still growing. He’s small, but he’s progressing.

    Lastly, my mom has been battling breast cancer for the last two years. Her oncologist kept getting her mixed up with other patients and telling her the cancer had spread to places it hadn’t. Needless to say, she’s seeking a second opinion.

    Anyway, thanks for this post. It felt good to get some of that out. I’ve been disillusioned with the medical establishment lately.

  27. 27.

    (can I say poop on this blog? well, i did)

    I say, if fMhLisa can do it, we at ZD should only strive to emulate her shining example. ;)

  28. 28.

    I have a friend with an autistic child. He has lots of problems with his gut too and he’s only 4. My friend is trying to heal his tummy. She took him off all dairy. Then she took him off all sugar and processed foods. He now only eats fruit and veggies and protein, all in organic, and healthy ways like steaming and not adding any butter or oils. This has helped him tremendously. My friend still has stuff she and her husband like to eat in the house, but they only get that stuff out after the kids go to bed. I hope that helps. As far as the gym group, I felt bad for you that you went and cried. Let me give you a cyber hug and tell you it’ll get better. I wouldn’t give up on a class for your son though, you just haven’t found the right one yet…

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