Seizures, EEGs, Meds & Why I'm Not A Big Fan Of Neurologists…
July 8, 2012
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Now Reading: Seizures, EEGs, Meds & Why I'm Not A Big Fan Of Neurologists…
July 8, 2012
Many have asked how Kyle’s doing on his new anti-seizure med. Have we seen any more seizures.
So here’s the long story…
So, as many of you know Kyle had a bunch of seizures in mid-May. We spent a couple of days in the hospital. You can read more about that HERE.
While in the hospital they did some tests and an EEG and they saw some complex partial seizures (what I call the big seizures) and some silent / absence seizures (what I call the staring off into space / zoning out seizures).
They put us on an anti seizure medicine (Trileptal 300mg x twice a day) and sent us on our way.
We were instructed to
get blood work done in 2 weeks because the med can affect sodium levels in the blood which can lead to hyponatremia.
And we were told to make a followup appointment with the neurologist we met at the hospital after 4 weeks on the new med to see how things are going.
So after 2 weeks we got Kyle’s blood drawn and made an appointment to see the neurologist at the 4 week mark.
This neurologist seemed fine and he was affiliated with the hospital we went to and we had a GREAT experience at the hospital with the staff and with the EEG technicians.
So we get to our 4 week appointment with our neurologist, let’s call him Dr P.
He takes us in about 40 minutes late, ok no problem I’m used to that. And he starts asking us questions as if he’s never met us before “why are you here today?” we explain. “what med did I put him on?” “did you get a blood test?”
Then he stops himself and says “let me grab his chart to refresh my memory and I’ll be right back”.
GREAT IDEA! JEEZ!
10 minutes later he comes back and it finally feels like a regular appointment. “Blood looks fine.” “Have you seen any more seizures?” “What med side effects have you seen?”
After 10 minutes of chatting like this he recommends that we have another EEG in the next few days to compare this new one to the one last month to see if the med is working.
We tell him about our great experience with a certain EEG technician at the hospital. He said her name was Karen and that we should ask for her when making the appointment. He also says that this should be a sleep deprived EEG.
My wife calls to make the appointment. We make it for Tuesday June 26. Karen doesn’t get in til 10am so we get a 10:30am appointment. They explain that we should keep him up til about midnight Monday night. Let him sleep from midnight – 5am. Then wake him up at 5am. Give him his normal meds at their normal time (7am) and then give him 50mg of benadryl and 3mg melatonin just as we are entering the hospital for the appointment.
So Monday night June 25th we invite my mom & my inlaws over for dinner so they can help keep him awake. He’s having a great time, but around 9pm he’s looking sleepy and probably thinking “what the heck is going on here. Why isn’t dad taking me to bed?”
Our folks leave around 10pm and Kyle just can’t stay awake past 10:45pm. Mommy’s singing to him, blasting his fav shows on the tv, but he curled up on the couch and went to sleep.
I carried him upstairs, put him in bed and set our alarm clock for 4am.
At 4am I wake up and take the graveyards shift with Kyle. I wake him up and he’s like WTF? I drag him downstairs, make a bag of popcorn and force him to stay awake. The first 45 minutes were tough. But once Elmo’s World came on, he started jumping on his big green ball and he was up as a pup.
Me? I was tired, so at 6am I woke up the wife and she took the 6-8am shift while I went back to sleep.
At 8 I got up and we all went out to IHOP for pancakes and bacon. Kyle ate A LOT of bacon! 🙂
We made it to the hospital at 10am, gave him the benadryl and melatonin while waiting in admitting, got whisked right to the EEG place where Karen is waiting for us.
By 10:30am he’s fast asleep, but not asleep enough that he’s not going to flinch or grab when someone tries to glue and attach 20+ leads to his head.
So with Karens help we basically swaddled / pappoosed / wrapped him up like a mummy with packing tape and all!
Once wrapped she got the leads on uneventfully and started the EEG. It was basically 20 minutes of data of him sleeping, 20 minutes of data as we tried to rouse him awake, and 10 minutes of data with a strobe light flashing in his face.
During the strobe light portion he really looked like he had a seizure. He zoned out for a good 15-20 seconds.
And the technician Karen was dropping hints that she saw something on the EEG by saying things like “you better get him used to this process cuz you might be back here soon…”
Anyway, test over. We were home by about 12:30pm. I had taken the whole day off from work so me and the wife traded naps again for a few hours. Mr Kyle, all drugged up on benadryl? He was a little loopy, but no he didn’t nap.
At around 5pm I say to the wife “you should call the neurologist, Dr P, just to let him know that Kyle had the EEG today so he can know to check it out soon.
Before she can call Dr P calls the wife to say that he’s “at the hospital, looking at Kyle’s EEG. I see some spikes. We will probably need to tweak his meds, but let me get back to my office and compare it to the previous EEG and I’ll call you back.”
That was Tuesday June 26. And we didn’t hear from Dr. P again for the rest of that week. We couldn’t reach him. Couldn’t get ahold of that MFer. My wife and I left messages at all his offices, at the hospital, with his service, ask for him to be paged, etc.
We don’t know what spikes mean? We don’t know if that’s serious. Just call us back man!
Friday 7pm he calls the wife’s cell. They must have paged him again to call her He starts asking her questions to refresh his memory. “When was his EEG? What did I say? Oh yeah
I still need to compare the two. I’ll call you back…”
And of course we don’t hear from this guy again the whole weekend.
Meanwhile on Sunday we go out to dinner at an outdoor restaurant with Kyle and my mom. And I don’t know if it was the heat or he was extra tired or what but he seemed to zone out a lot at that restaraunt. Were those absence seizures?
Finally on Monday at 8:30am Dr P called my cell phone (probably returning one of the 6 msgs I left).
And he finally gives me the details. He saw some spikes on the EEG, not seizures but spikes and he wants us to go up to 450mg of Trileptal x twice a day. We should check his blood again after one week at the new dose.
That’s it. I guess it wasn’t all that scary after all but the dude left us hanging for 6 fking days! WTF? I tried to get angry and make him feel guilty but because he’s from another country and he has a thick accent I don’t think he was getting or comprehending my anger.
So that’s my story. I don’t think Kyle’s been having any seizures but who knows. But he has been in an awesome mood and has been sleeping great. I think the combo of the Klonopin and the Trileptal are working nicely for Kyle.
That’s it. That’s my long followup story about his seizures.
And one more thing about neurologists.
We really have no use for them. Unless Kyle is getting brain surgery (godforbid) a neurologist gives us nothing with regards to autism and now with regards to seizures and epilepsy.
We used a world renowned NYC neurologist years ago to get a formal autism diagnosis. We knew Kyle was autistic already but someone suggested having a neurologist officially diagnose him so we’d have it in his records in case a school district ever gave us any problems.
After filling out a huge patient history form in advance we get interviewed by this world renowned dr’s intern who asks us all the same questions that were on the patient history form. She looks at Kyle for 5 minutes and leaves the room to speak to the big guy.
The big neurologist comes in looks at Kyle for 5 minutes asks what kind of services is he getting and then pretty much says “he had a big head, he walks on his toes and he doesn’t point. He’s autistic.”
But here’s the kicker. He then says. “come back and make a followup appointment to see me in 6 months”.
For what?! We got what we need from you. Write up that report saying he’s autistic and hopefully we’ll never ever see you again cuz neurologists have nothing to do with autism. There’s nothing more we can get out of then.
Our parents always ask “what did the neurologist say?” like he’s gonna have some amazing new approach or road to send us on but no they are there to confirm that your kid is autistic and tell you that you seem like you’re getting all the right services for him so good job mom and dad.
And now with the seizures and epilepsy I thought the neurologist would play a more crucial role, but so far, nope. Just like autism, epilepsy seems to be a crapshoot. The neurologists are there to read the EEGs, confirm that yes he’s having seizures, and to recommend and tweak meds. That’s about it.
I was hoping for a thorough indoctrination into the world of epilepsy. Some talk about the things that trigger seizures. Nope. Nothing. “it’s different for each person. Just try to watch him closely.”
Needless to say we will be changing neurologists. Dr P is getting the boot. But I’m not expecting much more from whoever we replace him with. Neurologists don’t seem to have much to offer us.
I’m done. I’m rambling as usual. This is really 2 posts in one. I should probably pull out my theories on neurologists and make a separate post about it, but maybe later. I’m tired.
The main takeaways from this post are (1) that Kyle is doing great and is adjusting well to the anti seizure meds and (2) I’m not a big fan of neurologists.
The end. Over and out.
Written byFrank Campagna
I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).
30 People Replies to “Seizures, EEGs, Meds & Why I'm Not A Big Fan Of Neurologists…”
My son Michael was born with a rare type of epilepsy called Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI). This is a rare and catastrophic form of intractable epilepsy that begins in infancy. Individuals with SMEI suffer from intellectual disabilities as well as severe behavioral and development delays. All effort made to be sure he did not live his life miserably with deadly disease proof abortive. I have carried him to different Doctors, use different prescription drug all to no avail.
Dr. Lawson!!! (with tears of joy) I will forever be indebted to you. Your medicine worked perfectly well and now my son is cured of Epilepsy completely.contact him on via email email@example.com
Continue your good job……
Just want to flip the coin and hopefully shine a light on your dark day. When I was 16, I suffered a Traumatic Brain Injury that required an immediate craniotomy, and put me in a coma for 3 days. There were many other injuries, including a fractured C-2 vertebrae, but needless to say, the brain hemorrhaging was the chief immediate concern. I am not sharing this with you to detract from your frustration, but to try to support you with the experience that neuroscience is not much different than any other… just like your children may have a "bad" teacher one year, yet an awesome one the next, the same goes for neurologists. My mother begged me to "sue" my neurosurgeon because he failed to detect the fracture prior to releasing me from the hospital…but I refused to because, while delayed, he DID catch it (that was a scene from a future Stephen King book! The men in white coats with their strapping board marching in the rehab center without answering any questions, just strapping me to the board and carrying me off back to the hospital!) Bottom line, that accident with its injuries took two solid years to recover from, and many more for my brain to learn how to cope and rewire… but… here I am, with a college degree (that I refused to apply for special ed accommodations, no matter how much my family pressed me to) and I teach high school English AP. I say all this to illustrate that I was lucky. I was lucky that my neurologist was the one "on-call" that night. Sure, over the years I've had "good" and "bad" doctors of all kinds…and if you are unhappy with yours…switch! Anyway… I just wanted to share my little story. If you live in the Greater-Houston Area… I can give you the name of my neurologist/neurosurgeon…as he still practices…and I cannot testify enough how grateful I am that he was the one on call that night.
My son Dawson had his first seizure in his early teens. He had several seizures per year, even with the help of medication. Dawson passed away on Feb 2 at the age of 25. Dr Lawson supports scientists in their research to find more effective treatments and eventually a cure for epilepsy. Our family hopes that Dawson's friends and their families will donate generously in his memory to this very worthy cause, if you want to contact him on this email:firstname.lastname@example.org or website http://www.healthsolutionclinic.jimdo.com link him on Facebook http://www.facebook.com/healthsolutionclinic
in regards to his behaviour being a lot better now that he is on the siezure meds – anti convulsants also have a mood stabilising effect and are often used in the treatment of bipolar disorder. just thought you'd find that interesting!!
My sixteen year old autistic son had his first seizure. Neurologist tells us 50% chance a person will have a second seizure. "But within the autistic population what is the percentage?" Still 50-50. Well, I don't believe it. I bet within that subset the percentage is closer to 100%. I understand we don't want to give meds until the second seizure, but I think they could do a study that would give us a more realistic picture of the odds. Shouldn't someone study this?
Neurologists do not perform surgery.
A neurosurgeon does surgery on the brain and also the spine.
I totally agree with you on the neurologist part. I can't stand them. To me they are useless. I know my son more than they do and understand his needs more. To them we are just guinea pigs. I don't want to even get started on that! One of them even gave us the diagnosis of autism without even checking my child!!! It took us 2 weeks to get hold of our former neuro just to get my sons EEG results and diagnosis! I was going mad mad maf. Seething!
I'm glad Kyle isn't having seizures. I enjoy reading your posts. Please keep it up…
Our son is 11 not 111 LOL
Please don't give up. Our neurologist is wonderful and has our son on seizure meds that also help with behavior. She treats our son Chris like a whole person just not the epilepsy. She cares about his development as well as his seizures. She is actively involved monitoring what happens at school and helps make a plan/decisions with us when things are bumpy. I have been to many other neuros who are kinda useless for lack of a better term and then we found her team. We got to the NYU comprehensive Epilepsy clinic. Our son is 111 and has partial complex too.
I'm sorry you had a bad experience with your neurologist. We have a wonderful neurology clinic with a nurse practitioner who previously worked with a behavioral pediatrician (coincidentally the same one who gave my DD her ASD diagnosis). She is fabulous with spectrum kids. We haven't had a need to see the M.D. neurologist (thank goodness!) but we love the NP.
our experience totally with the big "neuro", like just give us the dx and we'll move on, and she has an autistic child! i have yet found a "doctor" that has really been on the "train" about autism. that's the worse part of this, the medical community doesn't know what to do with us or for us autistic families. i feel like we are all stuck out on some other planet like colonials, waiting for the mother ship and no one comes! damn it's loney out here in space! "rocket man"
They all have potential for stupidity and lack of bed side manner. That's why finding a good Dr. is like finding a rare gem in the middle of a huge crap! I once had an endo dr tell me to eat more potatoes and breathe thru my nose ~ nothing was wrong with me but some "female anxiety". My "gem" of a family Dr. stood dumb struck as I told him…while writing orders for me to go straight to ER, I was in full thyroid storm and spent a week in the hospital getting it under control!
My apologies, it occurred to me after lending my doctor suggestions that you more than likely do not live in the same state as I do. I apologize, rough night. Loooonng rough night. Our one yr old is teething and our Autistic son has one of his "i'm going to wake up at 3am and play for a few hrs then go back to sleep" nights. I do wish you the best wherever you live a ever love and whatever you choose to do.
Having had my own personal experience for myself and one of my children, and having worked for one until I was laid off last yr, I can tell you, when it comes to neurologist, ESPECIALLY pediatric neurologists, they are either great or awful, there is no in between. I don't know who your insurance provider is but, I would personally recommend Dr. Gerardo Rodriguez. I know he has an office at Renown, but I'm not sure what insurance he accepts. He's very compassionate and personable. Very nice man but also very good at his job. If he's unavailable Mindy Schwartz would be my 2nd recommendation. She's not quite as social with parents, but a very good doctor and very sweet with children.
When my 3 yr old was 7 months he had an esophageal spasm (diagnosed with reflux)that mached a seizure. We went to doctor Schwartz, she got us in next morning to read the results. No waiting a week or more.
Because Autism and Epilepsy aren't enough to handle, you had to get strapped with an incompetent doctor. I hope the docs I suggested are of some help. Dr. Rodriguez is such a nice man.
Best of luck to you,
My son is non-verbal, severely autistic and also epileptic. He is 4 years old. He was diagnosed with epilepsy at age 2, when I insisted to his primary pediatrician that he was having seizures and they referred me to pediatric neurologist, Dr. C.
You see, AD, my mother's 47 year old brother is autistic, intellectually challenged, and epileptic. I absolutely know what I am talking about, and knew immediately that my son was having seizure activity.
To make a long story short, after a one hour sleep deprived EEG that showed no seizure activity, I insisted they do more tests. He was waking up at night with seizures, and staring off during the day, plus having 20 second "shiver" seizures. Sure enough, after an MRI, and a 24 hour EEG, among others – my son was diagnosed with epilepsy.
He started out on a low dose of Keppra combined with a high dose of vitamin B6. Over the last 2 1/2 years, we have increased both at regular intervals depending on his growth and other factors. B6 is a natural anti-convulsant and used in conjunction with Rx medication, it can really make the difference. It is always an ongoing struggle to maintain correct levels of medication to keep the seizures under control.
Having said all of that, let me say that Dr. C, our pediatric neurologist, is a God-send. Not only do I respect, admire, and yes love him… Hayden (my son) does too! Dr. C is involved in everything, from his autism to his epilepsy to his Pica and beyond. We see him often and he works with all of Hayden's other doctors to coordinate all his treatments.
Please don't let a negative experience put you off of neurologists in general. Keep looking until you find the right fit for your family. It's that important.
Good luck with everything, and I sincerely hope that the King sees improvement soon! I love your blog and look forward to more!
I say keep going to the neurologist for check ups. Every seizure fries the brain. The neurologist has to see that his brain hasn't changed.
I have had similar experiences with neurologists as you. We saw a neurologist to get an initial diagnosis at the age of 2. We were instructed to follow up in 6 months, but got bumped from his schedule because my son only had autism. I decided that I had no need to see a neurologist. We have a world renowned neurologist (Dr. M) who deals with autism and is on television talking about autism all the time. I thought he would be different, so I booked an appointment. We didn't hit it off. We were already running a home based ABA program, had already gotten attorneys involved to get appropriate services for my son, and I had a good handle on his care. He argued with me when discussing history and said that my son at the age of 3 1/2 was so severe that there was no way he played peek a boo when he was little or met my husband at the door when he came home – two things that I actually have video tape showing he did before. I left the appointment upset and confirmed my idea that I never would need a neurologist. I was so upset that when insurance denied the entire bill because of the autism, I never paid it.
Fast forward 2 years . . . my son has 3 tonic clonic seizures, stops breathing, needs resuscitation from the paramedics. The ambulance takes him to a local hospital and then a world renowned children's hospital sends an ambulance to pick him up. We get to the second hospital and the nurse tells me that according to my son's chart, Dr. M is our neurologist. I tried to explain nicely that Dr. M and I don't really get along and that I would like any other neurologist. We never saw him in the hospital because we weren't there during his day to do rounds. There was one neurologist that I really liked, she was clearly on the spectrum. I told her that Dr. M and I didn't get along and that I would love for her to manage my son's care. She said that wouldn't be possible since Dr. M is the best neurologist for autism in their office.
Its been 5 years since that first seizure and we continued to see Dr. M every six months to manage our seizures and meds. I had asked for EEGs, sleep deprived EEGs, causes of seizures, etc and was always just brushed away saying that it doesn't make sense to put my child thru those. (In other words, if he was typical and didn't have autism, maybe that would be our standard of care.) In his defense, we never saw anything on any of the EEGs that he had before he had his first seizure or at the hospital after the seizure.
My son was on trileptal and periodically we would have to increase the dose because his sleep pattern would change and I would stay up and see that he was having seizure activity. We went 2 years without any tonic clonic seizures. A neuor-psychologist recommended that we talk to the neurologist about taking my son off of the medication. I had thought that it may be contributing to his short term memory issues. Dr. M said that he didn't care either way and that it was entirely my call. My son would need an EEG before I would get the go ahead. In January, we went for the EEG and it showed no activity. It wasn't sleep deprived and my son only ever had seizure activity when falling asleep or waking up. Luckily, I have a developmental pediatrician that I LOVE, who manages my son's other medications – always a bone of contention between Dr. M and me since they used to work together and there is no love lost between them. We discussed the pros and cons to weaning off trileptal (honestly, one pro was that I didn't have to see Dr. M 2x a year) and set up a schedule. My son has been off meds since May 22 and we have seen no seizure activity.
Hang in there. Find docs that you like and use the specialists just when you need meds, EEG order, etc.
the first visit we had with my daughter's neuro was a very strange experience indeed…picture a really tall man, wearing a sweater vest, suspenders, and a bow tie. he doesn't look you in the eye, he almost has a slight stutter, and his nurse fills in his sentences. we almost didn't go back! i gave him another chance…and i'm so glad i did! he now coordinates all of my daughter's care. he is concerned with every aspect of her health. we went for a visit the other day and my daughter was doing her usual "yelling" to announce her presence. he started searching the treatment rooms looking for her and then realized we were in the waiting room. he was concerned because he noticed a change in the tone of her voice. i was shocked. we have had some horrible experiences with the bunches of specialists we have to deal with, and here's a guy that notices a change in my daughter's vocal quality…i strongly suspect that he may be somewhere on the spectrum – possibly aspergers..but that's probably what makes him so good at what he does. i know a lot of people that have met with him once, been put off by his mannerisms, and never went back – but he's by far my favorite doctor 🙂
now her previous neuro…that guy was as dumb as a box of rocks. absolutely useless. reminds me of the joke: what do they call the guy who graduates at the bottom of his class in medical school – doctor. waa waa waaaaaaaa
The type of Epilepsy my son has currently displays itself in two ways, seizures when he goes through sleep cycles and blinking seizures. The neurologist asks us when we saw the last a seizure and we never have an answer because when James is asleep, we are asleep. The neurologist suggested us getting a video monitor to watch him. Uh, sleep deprived parents need to rest and if I am asleep when will I have time to watch 10 hours of my sons sleep patterns the next day? The blinking seizures are much easier to deal with because they are quite common with every growth spurt.
We have been told that James will likely have more seizures during his waking hours when he reaches puberty. YIKES, one more thing to add to the age of hormones. At least then, we will have an answer for the neurologist.
My worst neurologist story. Hopefully I can Reader's Digest Condense this: My daughter was born 7 weeks early in 1986. She had classic low tone, was undersized, dragged one side when attempting to crawl, clearly had soft neuro signs. Age 15 months, she has an illness and is prescribed phenergan-D. She has clear absence seizures where she is completely non-responsive to anything including pain. Then she sort of "wakes up" and smiles like she was there all along. Pede says "Never heard of that but take her to neuro." DSM-IV says phenergan "may lower seizure threshold in children." We go to major children's hospital and meet with chief of pediatric neurology who examines her, checks EEG results, then proclaims her to be normal because her EEG was fine. I said "But we stopped giving her the phenergan. Doesn't that just mean she didn't have a seizure while the EEG was going on?"
I hope you're sitting. Keep in mind my daughter is a 15 month old with low muscle tone. He said (and I quote) "She's just having a little staring spell. Next time she does it, I want you to take her by the shoulders and shake her, just like this" (gestures in mid air as if shaking a rag doll) to which I responded, dumbfounded, "You want me to SHAKE her?" and he said "Yes, just like this" (gestures again) "She'll snap right out of it." I said "I bet she would" and began to dress her as quickly as possible. We hit the waiting room at a full run and I said to my waiting husband "We're getting the hell outta here."
When we saw the pede a few weeks later I recounted for him the details of the visit. He said "He told you to SHAKE her??" and I said "Yes." He sifted through her file and found the letter from the pede neuro. It said "I have instructed the mother to shake the child vigorously in the event of future episodes of staring spells." The pede turned white as a sheet and said "You didn't do it did you? I mean… you didn't shake her, did you??" I assured him that I had not, but that I had Shaken Infant Awareness information sent to the pede neuro's office by CSB. He just shook his head and said "I studied under that man. He was my idol."
So… they can be dumb. They can also have very poor bedside manner. As I looked around the waiting area, I realized that there were folks out there who had kids with WAY more significant issues than mine and decided that if they don't have Dandy Walker or enlarged ventricles with intense macrocephaly or at least a birth defect caused by a genetic defect, then maybe a specialist like that in a major children's hospital is just bored by them. Nothing exciting here – just regular seizures. While it's the biggest deal that's happened to us in our entire life to date… to them it's like "I saw six of these kids before coffee this morning so…." I don't know. It's a little disrespectful of the parents' sensitivities, but in the grand scheme I guess it's better to have it that way than a doc who says "Shit. I've never seen this before. Not sure how to handle this one." Bound to be something in the middle though. I mean really.
My EX Neuro suggested I stick a pin in my sons's foot
Wow! Nate was self-injurious, and we used masking tape to hold his hands down (I guess I have an unusual aversion to his pummeling his head… a weakness I suppose). We take him to Childrens Hospital in Seattle in a panic. They do NOTHING for him… and refuse to give him an EKG. We struggle to get them to bend, and 3 weeks later they accept. We show up with Nate, and the best they can do is focus a social worker to find out why we restrain him. Her question to my wife: Who told you to restrain him this way. WHAT?! If someone takes a swing at you, do you need go be told how to protect yourself?! I am so sick of dealing with these clowns. CAT scan on the horizon… and many more professional dolts in tow I suppose. Thank you for your post. Nate seems to have the EXACT same symptoms concerning seizures, and I am ONE ANGRY DAD!
EKG? That was mine. Cardiologists much easier to deal with (so far:-)
Been a lurker for several weeks now. Must say I love your blog and we have very similar opinions and attitudes related to autism.
Had a similar experience. I am an autism mommy AND a pediatric nurse at a large pediatric healthcare facility so I already had a professional relationship with the neurologist. First one, world renowned neurologist, looks at my 15 month old son and says, "Eh, looks stubborn to me…Come back in six months." I KNEW he was autistic, had no doubt, was just looking for the infamous "D." So I followed up with a second neurologist that was not in the first one's practice. Bingo! Got the diagnosis, got a baseline EEG…little more, but I DID get THE LETTER for school, etc. Number 2 retired a year or two later so we followed back up with 1. At least, after a second appointment, one told me, "I am really not doing anything for him. Just follow up if you see any need for me." That was ten years ago.
Neurologist and neurosurgeon are on a different level from the rest of the medical world. They are cerebral…they are the engineers of the medical world. They are brilliant, they are eccentric and their field is ever-changing. If my child's seizing, I want them on my team; if not, I have no need for them.
I could have written that post. 4 neurologists later we finally have a neurologist that bothered to read her history, change her meds (she was on the wrong type of medications for her type of seizure and the wrong dosage for her size) and closely monitor her meds until seizures were under control. From that point things have been back to the "norm" as far as dealing with negligent, arrogant medical professionals and incompetent insurance representatives 😉
Meeting with Bri's neuro on Monday. After over a year on a waiting list. We think he's having partial and abscence seizures. We attempted an EEG but he wouldn't let the tech even touch him. Bri has low-functioning autism and an Arnold-Chiari Malformation. And all the other fun conditions that usually go hand-in-hand with autism. Thanks for your posts! It's comforting to know that other parents are in the same boat.
These docs are just so clinical and have no idea what its like to be at the receiving end, much less being parent of a child with special needs.We watch them like hawks for any new signs or symptoms.The doctors affect is so flat and we want to say "don't you know how much we worry and react to every new thing?." People who don't have a child with autism don't even begin to understand us.Maybe they should be required to take a class in sensitivity and bedside manner.I now know why they say the parents of these children are hand picked…we are the only ones who truly watch over them.
You have no way of knowing if a physician has a child who is ill or has special needs, There would be no reason for them to discuss it with you. It is none of your business, Physicians are human and have sensitivities just like other prople. It is not possible that a physician, nurse, social worker, EEG tech etc. can weep for every patient. Health care professionals are just that, professional. They must be detached enough to protect themselves in order to do their jobs, which is to care for your children.
Could you imagine a surgical team breaking down in tears and contaminating the sterile field while placing a shunt in a child with hydrocephalus. A child with hydrocephalus can be very sad indeed but it will not help the child or family if the team does not do what is needed. Do not think they do not care because they do.
In regard to "don't you know how much we worry and react to every new thing"–parents of children with autism are not the only ones who do this–talk to parents of children with diabetes, heart disease, cancer, victims of trauma–you are not alone.
I suggest the same thing you did to learn about autism, because who the hell tells you about that? Find a few good books, join several support groups on FB and find a few chat rooms. Epilepsy really is individual, just like autism. But parents know all the good shit and can tell you "Yeah, that happened to me. Here's what we did. And did you try…"
I also had no use for them, but now we're trying to get an MRI done to see if the kid had TSC or chiari so we're back in the neurology fold. hooray! *sarcasm*