Hi, I am a psychiatrist with 3 special needs kids. I was just wondering if there are any other MomMD's out there who play the part of patient as well as doctor (I'm sure there must be!). This is a dilemma which has made it an overwhelming sacrifice to take call, so I"m now not working on this account. Just wanting to make connections, find out how others have managed, etc,

Hi, I have two children. My daughter is almost 6, and no special needs, but my son is just 3 and has some big speech delays. His problems aren't severe, and we don't have a diagnosis yet (waiting for that blessed appointment with the specialist a million years from now). I'm in family practice, and take care of a lot of kids. I find myself so frustrated taking care of kids who are quite advanced, and having to leave my own kids in daycare so I can pay off my school bills.
I recently forced a change in my schedule with my partners because my son's one day off of school is a day that they wanted me to work. I tried to make the change nicely at first, and then gave up and became much more forceful, which fortunately they responded to.
Were you taking care of kids in your practice? What are your kids' issues? What are your plans/options for the future?

I can really relate to that frustration of taking care of other kids who seem better off than my own. For me, a big part of that was in the form of treating kids for mood disorders (so, ie, they were getting treatment) before my own got officially diagnosed but still every night I went home and dealt with the same issues that the families of my patients were dealing with, yet my own child was not receiving the meds I was helping the other kids with. Finally, that was all resolved, and mercifully my moody boy is doing much better since I got him in with my colleage. My other two are ADHD with speech problems, but now both also diagnosed and s/p speech therapy. It has been a real learning experience for me in many ways.
I think it's the hardest of all when they are three. They are just on the verge of diagnosis and treatment planning, yet it's become painfully clear to Dr.Mom that something's wrong. Day care is almost never up to the par that they need. They're still little enough to be the baby you had all these ideas and dreams about, yet the reality is disparate. Hang in there. It does get better. In some ways, just because with time, you readjust your idea about their life and it becomes easier to see all their wonderful qualities again. Also, with dx and treatment, your son will do better, and YOU will feel better about the WHOLE situation. Just hang in..

I'm not an MD yet, just a 3rd year med student, but I have a 21-month old who was recently diagnosed on the autistic spectrum. It's been extremely frustrating dealing with all the pediatricians and others involved in his care. We've suspected something wasn't quite right with him since he was 6 months old, but were repeatedly blown off by his pediatricians. We went to SIX different pediatricians and every single one of them told me I was just being a ridiculous paranoid medical mom. Their chart notes from his well-baby visits all read "Mom (med student) with multiple questions re: development. Reassured." Finally, we had him evaluated by Early Intervention at 13 months, who documented substantial language, social, and fine motor delays. He was given a provisional diagnosis of autism a few months later, then we finally found a very good developmental ped who finalized the diagnosis last month. He started receiving speech and occupational therapy through Early Intervention and has made a lot of progress since then, though he still has a very long way to go. Now that he has a firm diagnosis, we're trying to get him enrolled in a behavioral intervention program to work on his social skills.
I've been very frustrated by the entire medical establishment so far. During one of lectures during my peds rotation, an attending claimed that there was nothing you could do for an autistic child. I was so furious I nearly walked out, but I'm sorry to say I didn't jeopardize my grade by speaking up. Now that the rotation is over, I plan to send her an article about autism to make her see that there is a LOT we can do to improve autistic kids' functioning. With intensive one-on-one therapy, a substantial minority have gone on to become indistinguishable from their neurotypical peers. It scares me to think of all the misinformation and false reassurances that she is disseminating among concerned parents of autistic spectrum kids.
During a psych lecture, I DID recently confront the attending when he incorrectly stated that the incidence of autism was 3-4/10,000 (which is what the older textbooks say). I asked him if he was aware that, in fact, the latest studies show the prevalence to be closer to 1/500, a HUGE difference! It turns out that he was aware of that, but just hadn't bothered to update his handout yet! (I still got an "A" BTW ;-)
Anyway, life is very difficult for us right now. My husband quit his job to stay home and work full-time with Christopher. He has his good days and his bad days, here lately more bad than good. We intend to do everything we can to help our son as much as possible. If I have to quit medical school to get a job to pay for behavioral therapy, I'll do it.

Hi there,

I'm going to move this to family and parenting. Thanks,
Sethina

Thanks, ses. I totally hear what you're saying. The last year has been so hard, because everyone in my family (and in-laws) thought I was overreacting. And, like everyone on this board, I am an over-acheiver, and had a few hopes for over-acheiving children of my own. I love my son so much and really am coming to appreciate him for every improvement and every special thing about the way God made him. I know all will be fine, that all IS fine.
I can love him the way he is.
And I have so much more compassion and understanding for the parents in my practice who have autistic and developmentally challenged kids, rather than being in the ivory tower, above them, over-educated and unaware of what they're dealing with.

One of the many blessings my children have brought me, especially my PDD moody boy, is the gift of pulling me out of the ivory tower and into the trenches. It has led me in different directions than I had planned professionally - working more with these children and their families - and now it is much of what is necessitating me taking time off. It is worth it, though money is tight, because I can see the improvements he's made since I've been home.
I wish there were more MDs who understood and approached autism spectrum and other pediatric neuropsych problems better. I know what it feels like to be told that I'm seeing problems that aren't there just because I've studied them. On the other hand, I've been on the other side, I regret to say, telling at least one mom I can clearly remember that she was worrying unnecessarily, when in fact her intuition had been correct. I feel like I've been taught a hard lesson in humility by going through it all as a patient-mom now... I don't think I'll ever underestimate a mom's concern again. Moms know more than most doctors appreciate!
My hope is at least to use what I"ve learned to help others and meanwhile keep trying to see my son as a great kid who is struggling mightily rather than a child with problems. Sounds good, but it isn't easy to remember sometimes... It's the curse of medical training to see problems that need fixed instead of people who need help.
Keep in touch! This forum is helpful!

I have two girls, both adopted out of third world countries. The first, now thirteen came home from El Salvador at aged almost three with frank kwashiorkor. (Sparse, coarse, orange hair, pallor, weakness, potbelly, edema, the whole nine yards.) She had a bunch of other issues, including chronic ear infections (clearly untreated prior to coming home), and issues with attention, visual processing, auditory processing, language, directionality, sleep apnea, and spacial position. In kindergarten they did their damndest to pin a MR label on her. I found it useful to assume that everybody else in the educational and medical field was an ignoramous, to take a problem list approach to the issues, and to attack everything aggressively regardless of cost. The Central Auditory Processing Disorder and the resulting inability to handle phonics - at age five she couldn't hear the difference between "the cat sat on a mat" and "the bat was in a hat" responded to grommets, Fast Forword (processing speed went from 400 ms to 10 ms; normal range), speech therapy, and quite a bit of in-clinic and at home Lindamood-Bell LiPS. The visual processing difficulty and the trouble with losing place while reading, and inability to remember simple sight words she had seen ten million times before on the same page, responded nicely to a combination of vision therapy and PACE. The trouble with speech and language responded to language therapy and Latin exercises, and the attention and directional confusion got a lot better with Interactive Metronome, allowing her to get off the Adderall. The sleep apnea responded to a T&A, coupled with aggressive orthodontics aimed at increasing her pharyngeal capacity. The incoordination responded to Interactive Metronome, gymnastics, and karate. She was in fourth grade before we pulled out of the death spiral, and in sixth grade before we quit having to do any form of therapy.

At present, however, she is a 13 year old, seventh grader, and while she is currently driving me crazy, for reasons due to puberty and her social schedule, she reads well, writes adequately, is handling a heavy schedule including Latin I, Spanish I, and Algebra I in a demanding preparatory school, and nobody is saying MR.

My second child came home at age 7 months from Guatemala with head control and a social smile, and nothing else, not even babbling. Also chronic untreated ear infections. Having been sensitized by her sister's problems, we got grommets into her ears before she was 9 months (after which she began babbling). Her language was also delayed, but we got in a lot of early speech and language therapy, and I began working on first gross, and then small motor coordination and discriminating sounds very early. She got Fast Forward to help her discriminate between sounds before she was five. She is six now, in Kindergarten, reads beautifully at the end first grade level, has no trouble with either phonics or sight words, draws very well, writes for pleasure, and loves math - okay, it is done with Cuisinaire rods in her prep school.

I echo the sentiments of needing to trust parents who have concerns. I have several patients in my practice who are moms of special needs kids. Invariably they knew but had to push and push and push to get the medical and then educational services they needed. There was an interesting article about a Kennedy Krieger autism specialist Rebecca Landa who did a study with kids at risk (mostly sibs of autistic kids) starting at 6 months, but with checks at 14 months and 24 months, and they could clearly start to see early differences by 14 months and she thinks they'll be able to get earlier as they figure out better what to look for. Then it will be a matter of educating all these doctors about what to pay attention to -- starting with the moms!!!

I just gave birth to my 4th son. The oldest is now 6.5 and the second youngest is 3.25. They both have special needs. I find it quite a challenge on a number of fronts.

My 6 year old has a host of issues, but no specific diagnosis. I had campylobacter sepsis during my 3rd trimester. Most fetuses don't survive maternal campylobacter sepsis, and those that do are often severely disabled. My son is intellectually intact, in fact far above average intelligence. He had developmental delays and got early intervention speech, OT and PT. Still gets them all, but fewer sessions/week. We didn't realize anything was wrong until about 12 months of age, and then got reassurance from our pediatrician, rather than a referral to EI for evaluation. He hit his milestones 'on time' but the quality of his motor skills was not normal and we didn't appreciate that. No one ever asked *how* he did things, only when he started to do various things. I finally insisted on evaluations because he was drooling, profusely, at 18 months. We had to change his shirt 5 times a day, and that was with waiting until he was wringing wet before we changed it. ENT sent us for a speech/swallowing eval, and the speech therapist picked up on the fact that he fell too much for a kid who'd been walking for 6 months, and he couldn't effectively break his falls with his upper extremities when he did fall. He had diffuse hypotonia, and in addition to the speech therapy for oromotor strength issues, he got started with OT and PT. Eventually got glasses with prisms and had some vision therapy to help with sensory input processing.Until about a year ago, the pediatrician continued to think I was a bit of a nut for having him get so much therapy. The school wasn't too thrilled about him being out of school for all the therapies, but I stood firm that he get it. He's made great progress, but still has a ways to go.

My 3 year old was a preemie and got RSV at 8 weeks of age, despite Synagis prophylaxis. He's got significant asthma, with multiple meds daily, and frequent courses of oral steroids when he has flare ups or URI's or other infections.

Despite both boys problems being quite different, I find several challenges common to them. The first is how the professionals (doctors, therapists, etc) deal with my concerns, questions etc about my kids health. I'm a doctor, but don't have expertise in anything pediatric (except for what I've learned 'on the job' as a mom), but I still think (and often talk) like a doc. Second is variable expectations about whether I'm 'just a mom' or also a doctor for my kids. When I call in a crisis for my asthmatic son, the pediatrician has asked me what he sounded like. I don't listen to him with a stethescope. She's asked me what I think in terms of treatment when the course wasn't clear cut. Don't know if she does that with other patient's parents or with me because I'm a doc. Suspect it is the later. Finally, the time involved with taking them to doctor's appointments is enormous. I could spend all my vacation days taking my kids to check ups and sick visits, and with the exception of the asthmatic son, they're rarely sick! It's just that there are annual check ups, semi annual trips to the dentist, and eye doctors, then my 6 year old needs his orthotics (started in AFO's now in flexible soled SMO's) checked and remade 1-2 times/year depending on how much he's grown, then there's a neurologist. My 3 year old has sick visits and also sees a pulmonologist. We've gotten behind at times or I've lost track of an occasional appointment.

Probably more of an answer than you bargained for.