Wednesday, December 17, 2008

Good doctors for special-needs kids vs. bad ones

You know those Wordless Wednesday posts other blogs do? Well, here at To The Max it's Word-Filled Wednesday, cause I've got a lot to say. Thanks again to everyone for the reassuring messages about Tuesday's seizure scare. I was sorry to hear that some of your kids have been having them.

On the train to work, I called the nurse at Max's school and asked her to describe what she was seeing that had concerned her. Turns out it was this weird movement Max occasionally does in which he grimaces, stiffens and raises his arms, all at once. The whole thing happens in maybe two seconds, then he relaxes and he's back to usual Max.

I told the nurse that he has been doing this for years, and that I had pointed it out to the neurologist when I first saw it. And then I explained why sending home forms titled "ASSESSMENT OF SEIZURE ACTIVITY" can be very unnerving to a parent and that going forward, I would like a call. Later on, I spoke with our neuro, whom I absolutely adore. Dr. C is smart, nice, sane, funny, down-to-earth. Every mom of a child with challenges needs a Dr. C in her life. I told him what had happened and he basically said that at worst, what I was seeing is a tic but because Max is wired differently than other kids, what might just be a shoulder shrug for a typical child would involve Max's shoulders along with his arms and mouth. (Interestingly, studies show that one out of every six boys in elementary school has tics.) There is no kind of seizure that fits the description of what Max has been doing.

Dr. C is amazing. In contrast, I think back to this one doctor I visited when Max was three months old. He was a neonatologist, someone who specializes in the care of newborns. In the course of examining Max, this doctor told me that the only other moms he'd seen whose babies had suffered strokes were crack moms (yes, he said that). And then, when he finished looking Max over, he told me that Max's limbs were very stiff. He told me that a bilateral stroke was a serious thing (no shit, Sherlock). And then he said "His future looks ominous." That's when I started crying. He said, "Hasn't anyone told you that yet?" I couldn't even respond, I was so despondent.

I ended up seeing the social worker in his office afterward. And as I sat there blubbering my heart out, I got good and mad. I told her that he had no right to use a word like "ominous," that no doctor should ever use that word, that babies' brains are plastic, that Max had potential. And if I didn't have HOPE, what did I have? I walked out of there and never came back.

I do have fantasies about marching back into his office with my walking, communicative, bright, personable Max and saying "SEE?!" But a doctor like that, well, he'd just look at Max and say: "He's not talking, and his limbs are still tight." Who needs that?

I'm curious, tell me about a doctor you've taken your child to who you adore—and a doctor who you wish you'd never met.


  1. First, I'm glad that it's a "tic" rather than a seizure.

    A bad doc. When Alex was on the fence for a diagnosis, or that there was even a concern when he was just 4 months old to 9 months old, we saw a PA. When it came time to be worried "for sure" and get an CTScan, the PA said he thought it might be CP.

    "You know", he said. "He'll hold his arm like this (arm bent to his ribs) and walk like this (well you can imagine), and he might even scissor his movements like this". Yea. We were horrified that he would actually do this. What was next?!?!?

    Needless to say, we love the practice and now always see one of the partners. We have NEVER seen him again.

    A good doc. Our neurologist. He's saved us. That's all I can say about that.

  2. We have a few doctors that we love. I love our neurologist because she always talks about stuff and then will say(if we dont ask questions)... I would ask...and try to really talk over things.

    Both my children have seen a certain GI dr that was just uninterested pretty much with anything. My son(whos autistic) was constantly throwing up. We see him and he says "kids throw up" and that was it...sent us on our way. Then last year when my duaghter was going through so much he sent her home because they wouldnt put a gj tube in over a weekend. I swear it was the week she was home that things took a turn for the worse and whenever I see him around the hospital I get so pissed!

    I also dont care for her epileptologists PA...we have fortunatly only seen her once...but she would start asking questions and then wouldnt let me answer anything and would say stuff about just the last EEG was totally ticking me off.

  3. I have yet to find a doctor I respect, or even "like".
    Thankfully Noah is pretty much done with ever specialist follow up but my whole perspective of the medical profession will never be the same.

    When Noah was about 20 hours old, the NICU nurse practitioner came into my room to tell me his EEG was abnormal. Mind you it was 2am, I had not slept in about 2 days, had just had a baby, and now my baby was in the NICU. As she is going on and on about Noah's brain she stops mid sentence and asks me " why are you so calm?"...seriously, WTF?? I am in shock lady, and I am about ready to snap...calm??
    I then proceeded to tell her that this was my worst nightmare, she again stops me and says " No it's not"...ummm, YES it IS!
    All the doctors in the NICU were horribly pessimistic. Noah is 100% normal, that was never discussed. All that was discussed it what "could" happen. The same with our neuro, he never recognizes us when we go, he gives conflicting info, and during Noah's follow up at 1 week old ( like 2 days after we had talked with him in the NICU) he asked me where Noah's twin was!!!!
    Soooo....needless to say I was not impressed!

  4. Oh goodness. We had a a pedi-neurologist who was just awful. Told me to stop breastfeeding. Wasn't happy that our son was eating crackers in her office. Wanted him to see a million different specialist. Really disliked her. Now we have a wonderful neurologist who our son loves and has given us the best advice. It happens but I think too often we trust the white coat they are suppose to be smarter than us right? But we have to go with our guts and really fight to find the right fit for us and our children.

  5. Hi, this is Suzanne over at So glad to find your blog too. I am going to have lots of reading to do....seems like you are wordy like me LOL!!!

  6. Hmmmm. . doctors I like? I guess I could say that i like my son's nuerologist because she's the one who calls me--not the nurse, and because she values my opinion. Like most of the people here, though, I feel like doctors these days are over-worked and rarely have the opportunity to get to know their patients in the way we'd probably like them to.

  7. Hi there,
    I've been following your blog for a few weeks now. My 4 - year - old son, D, also had a stroke in utero. As a result, he has left - sided hemi. The doctor who diagnosed D gave us more hope than that awful doctor gave you. Still, he looked right at my husband and me and said, "You know, you can always have more children." Um, what are we supposed to do - throw him out and try again? NO! He is our son, and we love him just the way he is. We wouldn't love him any more than we do now if he hadn't had a stroke. We also had an OT from EI who told us to give up on D's hand, as he would NEVER use it. Four years later, he's working on catching a baseball with his left hand so he can play Little League in a couple of years. He's not 100% there yet, but he has SO much more use of his hand than I ever thought he would. The part about wanting to march into the doctor's office to show off Max really hit home. I too have fantasized about going back to the negative "specialists" to rub my son's progress in their faces. But you're right - you just can't get through to negative people like them. We know that only our kids have the right to determine what they're capable of, though, and I guess that's good enough for me.
    On a more positive note, D does have some great doctors. His pediatrician is the most amazing doctor I've ever met. He takes plenty of time during exams, never shrugs off my concerns, and even calls several times a year in between checkups to ask about D's progress and if we need anything.
    D also have a wonderful neurologist who is very thorough and has great bedside manner.

  8. Over here in autism land, it's the developmental pediatricians who are our heroes and, sadly, the neurologists who often fail us. (I'm ignoring regular peds. I regard them as a necessary evil, to get forms signed and prescribe antibiotics and whatnot, but totally useless when it comes to anything developmental.)

    I cannot count the number of parents I know of, including myself, who were given poor guidance, to say the least, by neurologists who just don't understand neurodevelopmental issues, look only at "hard" signs, and say things like "So far as I am concerned, sensory issues don't exist."

    In the good column: the kind and very wise developmental ped Dr. Agin, champion and friend to many families in NYC and the surrounding area. Boy, does she get it.

  9. Wow, these comments are fascinating. Clearly, a lot of doctors lack bedside manners. We have been lucky that, after those brushes with the pessimistic docs at the hospital where Max was born and the terrible neonatologist, we have met many wonderful doctors, including a great physiatrist, a sweet developmental pediatrician, a really caring regular pediatrician and a kind-hearted child opthamologist. Today, not related to Max, I met the most wonderful ob/gyn, I could have talked with her all day. She even went to my college. This is at the practice where I had Sabrina. I actually love most of the doctors in this practice. I've never had a problem with doctors till I had Max, even when I met one who was abrupt, I could handle it. It's so different when you are dealing with your child. I am very, very sensitive to how doctors talk about Max and his potential. Even when they are amazingly knowledgeable, if they are pessimistic, I get all riled up and have a hard time seeing past it. Group hug!

  10. Hi,

    I'm new to your blog, but have been enjoying reading it. Max is adorable!

    My son, ELijah, has CP due to a difficult labor and delivery.

    To answer the question...
    I like to nickname our doctors for Elijah's blog. We have Dr. Positive, Dr. Nice Guy, Dr. Optimist, and Dr. Gloom. I think it's pretty apparent who I like and who I don't! :)

    Dr. Gloom is our neurologist - he's been Elijah's neurologist since he was in the NICU. In some ways, it's a hate the messenger sort of thing. But, he has always been gloomy and despite all the progress Elijah has made all he can say is, "He's made some improvements." So why don't we see someone else? Well, I suppose it is that innate desire to prove him wrong and show him how well Elijah is doing (and we don't have to see him often, which helps).

    And as you can tell from the other nicknames, I love those other doctors. I appreciate being given facts, but I love a positive attitude. We just got a report from Dr. Nice Guy this week and he described Elijah as delightful about four times. Sure, he mentioned his challenges, but Dr. Nice Guy also took note of the positive as well. Why can't they all do that?!

  11. I am SO glad to hear he's not having seizures. Phew! An early xmas present.

    As for doctors...

    About 90% of the doctors we've been to are terrible terrible. One of them referred to Nathan as "kids like that". The perinatologist that diagnosed Nathan in utero gave us NO hope. Most doctors only see the limitations and don't see hope or possibilities.

    His pediatrician is okay but she doesn't beleive in any alternative therapies.

    So we constantly struggle to find doctors worthy of caring for Nathan.

    You are lucky that you have a neurologist you love!

  12. The first pediatrician who diagnosed Bennett was awful. We were referred to her because Bennett wasn't crawling or talking yet. The 1/2 hour appt. started with her telling us to take his socks off in the house and to get rid of his soother. In the last 10 minutes she told us he has cerebral palsy and would probably walk and talk but it wouldn't be until he was at least 2 or 3 and that she would schedule an MRI. As we were putting our shoes on to leave she came out laughing and asked us if there were feeding problems. What a nightmare.

    We were so lucky to be able to change doctors. Our new ped. is very nice and actually seems to like kids. She takes time to explain things to us and answer questions.

  13. We have been trough our share of crap Dr's and are slowly weaning them down to a selection we can trust.
    I have actually been fired from one of her early pediatritions because of my endless questioning Elizabeth's of Elizabeth's gross motor delay's (I was a bit concerned with not walking by 2 1/2 I think anyone would be). The shmuck didn't even have the decency to tell me he was kicking us out, when Elizabeth got sick and I tried to make an appointment they told me she was no longer a patient.
    I find the medical professionals who are quick to label you are the ones who can never see or hear beyond their labels. It is their blindness that obscures them to see the potential and acheivements our children have.
    Glad to hear it is just a tic.

  14. Crap doctors? Had a few.

    BUT have also had great ones.

    The doctors in the NICU were amazing. I swear I couldn't fault them. They were caring, considerate, optimistic and above all honest. I couldn't have hoped for anything better.

    On the downside, further down the track, we changed Paeds because I hated the way the first Paed seemed to enjoy being what I call a 'Gate keeper' - meaning he felt that he had all the information and he wasn't going to let me in. He scoffed at my questions as though they were stupid (and yes, often made me feel stupid for asking them) and gave me no guidance whatsoever.

    The final straw came when BC was about 6 months old and I'd decided to see a paediatric chiropractor. The doctor scoffed again and told me (like I was a 3 year old) that the brain and the spine were two separate parts of the body and that I was desparately clutching at straws.

    I went anyway. And discovered that because of his difficult birth BC had a sublaxed shoulder. The chiro told me he would roll within a week. I was sceptical, but lo and behold, he did! I never went back to the Paed. I knew he'd just pooh-pooh the milestone as a coincidence. We still see (and love) the chiropractor.

    We love our "new" Paed too. She's caring and kind and gives us her complete attention - even going as far to give me her email address and answering any messages I send promptly. There ARE good ones out there!

  15. That sounds a lot like my son's repetitive movement. I had no idea how common they were. We actually loved our neurologist and behavioral ped but I did not like that their diagnoses contradicted each other.

    "Definitely not a tic." and "Its a chronic motor tic."

  16. Hey Ellen! I'm really behind on my blogs but was just catching up and this post hit home.
    We visited our first neurologist (of course he had one in the NICU I think but they never saw us personally) back in August... at 14 MONTHS. It took THAT long to get in and he had seizures when he was born too with massive brain damage. No one ever went over the what, when, where, and possible whys of the ordeal so we were hoping to get a lot of answers, many we knew would be heart-wrenching.
    The doctor who saw us was impersonable. It didn't really bug me at first, because if you can do your job and do it well, you don't have to be my best friend. But after spending several minutes in the room with us, looking at his history (not getting it from us, just the computer) he said, "I can't tell you if he'll ever walk, sit, or crawl, but what I can tell you is he'll never be in a regular classroom."
    it gets worse from there.

    I'm not unrealistic but my son is not a chart. the next doctor we saw praised LilB and said that he would never have put his MRI to him because his function level is very impressive. He also decided not to prescribe medication because he wanted LilB to excel as much as possible in the first couple years and he thought the medication would delay him further. He did prescribe a med for if he did have a sezirure (Diastat) and said we will deal with it should that day come.

    That doctor did teach me one thing, though. When I know something is wrong, I will fight for it, especially when it comes to my kids.

  17. A doctor that I went to (which I won't name) who was terrible. He won't tell me what he was doing and I am an adult. I didn't really know the details of what he was keeping from me. He constantly told me I needed all of these unnecessary surgery and never tried to reduce the pain of any shots he gave me. He was always very pessimistic. I haven't had a surgery since I was 5 and I'm a lot older than that now. After I got a really good Doctor that told me what she was doing and made sure the shots didn't hurt so much, I thought they had to hurt but she said, no. She doesn't think I need surgery, she actually thinks my muscles are getting better! She even said that.

  18. When i was little my favorite person to go see wha the guy who made my AFOS he was so much fun and after every appointment he would let me play in the PT room at his office.
    A bad doctor I can not chose just one lol I say any one who refuses to treat em as an equal due to my cerebral palsy there have been a few

  19. I'm not a parent of a child with special needs, but I am disabled and have my own doctor story. I suffer from Epilepsy, and was put on Neurontin when I was in my late teens. A few years later I experienced a severe emotional break down during which I became suicidal for the first time in my life. I also noticed that I had developed a physical addiction to Neurontin, becoming tense when it was time for my next dose. Then one night when I was up late with the TV on, I saw an add that said, "If you or a loved one have either thought of suicide or attempted suicide while on the drug Neurontin, call this number." Being blind, I was unable to see the number on the screen. Since our family had recently moved, I made an appointment with a new Neurologist, and during this appointment, I explained my situation. He looked in his little book of drug side effects, and depression was not listed as one of the side effects for Neurontin. When I told the Neurologist that I thought I was addicted to Neurontin, he said, "You're not addicted; you're just adjusted." He told me that I just needed to take more, and since he was the doctor, I believed him. Taking more, however, didn't help, and that was when I decided to do my own online research about Neurontin. I came across a manuscript of a Dateline show about the company that created Neurontin and the whistle blower who accused the company of using kick backs and deceptive practices to promote the drug. The FDA only aproved Neurontin as a treatment for seizures in conjunction with another seizure med, not as monotherapy. I was not given Neurontin in conjunction with another drug. During the dateline show, a woman with Bipolar was interviewed who had been given Neurontin. She got worse rather than better and ended up attempting suicide. I realized that her story could be mine if I didn't get off of this drug, so I went to see the same Neurologist. I noticed a marked difference in his manner toward me during my second appointment. He was very warm, sensitive, and kind during the first appointment, but during the second appointment, he was reserved and formal. He showed know interest in acknowledging the emotional pain I was in, except to ask me if I needed to go into the hospital. I told him during that appointment that I wanted off of Neurontin. He obliged and decreased me back to the dose I had been on before he had told me to increase my intake. He did this with the plan of getting me off of the drug. that was when I had a Grand Mal seizure, and I hadn't had one in 9 years. When I told someone in the ER about increasing and then decreasing my seizure med, he told me that doing this was bad medicine. Of course it was my Neurologist who directed my medication dosage, obviously not considering the fact that increasing and decreasing the dosage of the only seizure med I was on could cause seizures. I was totally ignorant of this fact. When my mom and I had a consultation with my Neurologist after the seizure, he refused to acknowledge that Neurontin could've been the cause of it. All he said was, "I guess we'll never know." That was when I decided it was time to get a new Neurologist. The new Neurologist I got was great, but the process of getting off of Neurontin was a nightmare! I went through withdrawal symptoms, and I can now understand on a small level what drug addics go through when they don't get a fix. I did successfully get off of Neurontin, but several years later, I read that the company that manufactured Neurontin had to pay a massive fine because of their marketing practices. In summation, if you know that something is wrong, be persistent! Do what you know you have to do for yourself. Doctors have a lot of knowledge, but they don't know everything!


Thanks for sharing!

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