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kiddo had another seizure today
- Thread starter cindylou
- Start date
Well, I'm not on Facebook anyway ...
I don't understand something, where's her pediatrician in all this? Do you have a pediatric neurologist you're working with? With something like this, talking about a child, you need an involved advocate. That might mean you need a different specialist. Unfortunately, sometimes that means going out of network and into your own pocket for decent medical care. It's better to have a doctor you connect with and who actually makes time for you, that you can talk to, than the cheapest one. Most of the time, even if a physician is out of your network, studies can be performed within in-network facilities. That's kind of where I'm at with both my sports medicine guy and chiropractor. No decent pediatric specialist should be blowing you off the way you're describing.
Got a list here, don't know if you've already seen it or not: U.S. News Best Children's Hospitals: Neurology & Neurosurgery
Anyway, if you are used to cooking from scratch the diet isn't as awful as you might think. My husband and I have been following it for nearly a year. Once you get "used" to eating this way (and one thing I do know is that you really need a dietrician and involved physician for the pediatric epilepsy version) the next biggest problem is the real tendency to fall into a food rut. The nutritionist should help with this to a degree. It IS something that needs to be medically supervised though. The diet changes just about everything you can think of metabolically, from how your brain operates to how your body processes water and salt.
Anyway, if the keto diet turns out something you're going to follow this board has an AWESOME recipe forum: Low Carb Friends
However, I would suggest you check this website, as well, if you haven't already. The Charlie Foundation - The Charlie Foundation for Ketogenic Therapies They have a contact page and could possibly be a really good resource for giving you some ideas on how to proceed. It really sounds like you're out in limbo. The best advice always comes from people who have already navigated the maze. Seriously, at least find a support group in your area for parents of epileptic kids, THEY know who the good doctors are! Heck, most of them are as good as a physician when it comes to interpreting labs and studies.
rainbococksleev
New member
why are you always tryin to bang mitchs girl way to be a good bro u scumbag fuk eat a grenade
Strongbow
New member
Yea I was really pouring it on strong you midget dick turkey neck piece of monkey shit. How you doing mitch?
Her regular pediatrician hasn't been involved because I've only worked with the children's hospital and their referrals. This started in the ER and I have just gone from there.
There aren't any pediatric neurologists outside children's mercy network at least that's what I've been told so far. I'd have to leave the metro area, possibly the state. I don't know where to start or how I'd even go about doing that and I don't know if I'd have to start over or what. Yes, I'm kinda in limbo. Although, after four hours on the phone today I did finally get EEG back today and as a result they have changed her meds. she has started to have seizure activity at night too now, basically all night. The myclonic kind. I'm worried because that's new. I'm hoping the new meds she started today stop that. The neurologist part has been a nightmare. I'm hoping the epilepsy specialist will be better, but initially she coudlnt' see him until mid november! That is with three ER visits in a month and new seizure activity at night, with multiple witnesses, one was a nurse, and MRI to back it all up. I begged and pleaded and lied to get that down to two weeks. Today the EEG saved me because it wasn't what they were expecting and I might get to shave some time off that without having to beg. Thank god. Today was productive, took hours but I think I got somewhere.
I have a PPO, so I don't really have to stay within any network. I've already met my deductible. I just don't know where to go or how to switch docs. I've never really done anything like this before. :/
Having said that, the support group is a great idea, they would know exactly what to do. That is an excellent idea, thank you
thanks SB I hope she does too xx
Well, first of all I honestly think her pediatrician should be up to speed with what's going on. They have more connections than anybody. If I had a patient who had increasing seizures I sure would want to know.
Now you said epilepsy specialist ... pediatric epilepsy specialist? The thing is, some medical people have a tendency to consider most parents (in particular) to be just a teensy bit, uh, drama queenish. You should have a good enough rapport with your pediatricians office that they're going to know if you're over reacting. And if one doctor says to another doctor "I've got a decompensating kid here" they other goes "send them right over". Seriously. You can't get an appointment for two weeks. Your pediatrician could probably get her in today or tomorrow.
Believe me, I get where you're coming from in terms of trying to find that elusive "perfect doctor" (and remember, I'm right outside of Philadelphia, medical college central). I still went through the same thing trying to find help for my stepdaughter (late diagnosis autism spectrum). You literally have to sit down in front of a computer with a notepad and phone and just start Googling. I would end up calling so many neurologists/psychiatrists/neuropsychologists, special needs schools and government agencies that I had to keep track of their names so I didn't duplicate myself.
Going through hospital directories in the department you're looking for is a way to find doctors who work strictly in a hospital setting. You find a name, then you google the name and you can look up their credentials on Healthgrades or some other doctor review site. I've even called the department and spoken to people who work there to ask for referrals of private practice physicians.
Contacting your PPO customer service of your insurance company is a way to start if you haven't already. Googling "best pediatric neurologist in your city", is another. And, yeah, sometimes getting in with a good doctor can mean traveling a couple hundred miles. Your (very young) child has a rapidly deteriorating epileptic condition and brain scarring. Somebody should be all over this and honestly, I kind of am wondering if she shouldn't be in the hospital until she's been stabilized.
In terms of how to change doctors, you just find one who can see you, make the appointment and go. Before you go you contact every place she's had studies done and you get copies of everything in your hands (you should be doing that right now). Going forward you always get a copy of any studies she has done as well as the reports (imaging studies are always on CD, and you should get that AND then swing by the place for a copy of the written report, it's usually available a week or so after the study. You always tell places in advance you'll want a copy of the study and a copy of the report for your records). Keep a file of everything! Allow doctors to make copies but demand they return your copy. If you have a full set of your daughter's studies you can jump to a new practice in a moment's notice. You can always keep track of studies so they don't double up.
I'm probably repeating myself here: ALWAYS, ALWAYS, ALWAYS tell doctors/labs/imaging places you want copies of EVERYTHING sent to you directly, for EVERYTHING, office visits, consultations, you name it. They don't automatically send that shit to parents, you have to make a point to ask, then make a point to tell them to send it to you, sometimes pay for the copies, then keep an eye open to make sure they actually send it, then dog them if they haven't sent it. Trust me on this. Not acquiring records and information holds up care, potentially your daughter may need this information in the future, and you'll sure as hell need it if your daughter, gods forbid, needs to go on disability in the future.
And when it comes to the support groups, most only meet once a month or so, but often they have a contact person for the meeting in your area. Write that person an email timelining your daughter's situation, include your phone number and ask if there's anything else you could be doing or if they have any suggestions. Worst they can say is no.
And Cindy, you might want to get some bedrails for the kid, maybe something like a call button she can wake you at night. Or just get monitoring equipment, there's tons of stuff out there: https://www.google.com/webhp?rls=ig&gws_rd=ssl#q=pediatric+seizure+monitor
Having a record would help, again until they get a handle on things. The more information the better.
Now you said epilepsy specialist ... pediatric epilepsy specialist? The thing is, some medical people have a tendency to consider most parents (in particular) to be just a teensy bit, uh, drama queenish. You should have a good enough rapport with your pediatricians office that they're going to know if you're over reacting. And if one doctor says to another doctor "I've got a decompensating kid here" they other goes "send them right over". Seriously. You can't get an appointment for two weeks. Your pediatrician could probably get her in today or tomorrow.
Believe me, I get where you're coming from in terms of trying to find that elusive "perfect doctor" (and remember, I'm right outside of Philadelphia, medical college central). I still went through the same thing trying to find help for my stepdaughter (late diagnosis autism spectrum). You literally have to sit down in front of a computer with a notepad and phone and just start Googling. I would end up calling so many neurologists/psychiatrists/neuropsychologists, special needs schools and government agencies that I had to keep track of their names so I didn't duplicate myself.
Going through hospital directories in the department you're looking for is a way to find doctors who work strictly in a hospital setting. You find a name, then you google the name and you can look up their credentials on Healthgrades or some other doctor review site. I've even called the department and spoken to people who work there to ask for referrals of private practice physicians.
Contacting your PPO customer service of your insurance company is a way to start if you haven't already. Googling "best pediatric neurologist in your city", is another. And, yeah, sometimes getting in with a good doctor can mean traveling a couple hundred miles. Your (very young) child has a rapidly deteriorating epileptic condition and brain scarring. Somebody should be all over this and honestly, I kind of am wondering if she shouldn't be in the hospital until she's been stabilized.
In terms of how to change doctors, you just find one who can see you, make the appointment and go. Before you go you contact every place she's had studies done and you get copies of everything in your hands (you should be doing that right now). Going forward you always get a copy of any studies she has done as well as the reports (imaging studies are always on CD, and you should get that AND then swing by the place for a copy of the written report, it's usually available a week or so after the study. You always tell places in advance you'll want a copy of the study and a copy of the report for your records). Keep a file of everything! Allow doctors to make copies but demand they return your copy. If you have a full set of your daughter's studies you can jump to a new practice in a moment's notice. You can always keep track of studies so they don't double up.
I'm probably repeating myself here: ALWAYS, ALWAYS, ALWAYS tell doctors/labs/imaging places you want copies of EVERYTHING sent to you directly, for EVERYTHING, office visits, consultations, you name it. They don't automatically send that shit to parents, you have to make a point to ask, then make a point to tell them to send it to you, sometimes pay for the copies, then keep an eye open to make sure they actually send it, then dog them if they haven't sent it. Trust me on this. Not acquiring records and information holds up care, potentially your daughter may need this information in the future, and you'll sure as hell need it if your daughter, gods forbid, needs to go on disability in the future.
And when it comes to the support groups, most only meet once a month or so, but often they have a contact person for the meeting in your area. Write that person an email timelining your daughter's situation, include your phone number and ask if there's anything else you could be doing or if they have any suggestions. Worst they can say is no.
And Cindy, you might want to get some bedrails for the kid, maybe something like a call button she can wake you at night. Or just get monitoring equipment, there's tons of stuff out there: https://www.google.com/webhp?rls=ig&gws_rd=ssl#q=pediatric+seizure+monitor
Having a record would help, again until they get a handle on things. The more information the better.
I don't have a lot to contribute except I'm a father of two boys age 6 and 4 and I understand how scared you must be. I don't think I have anything to constructive to add but I really feel for you and will pray for your daughters health and your sanity. This is so scary any one who isn't a parent just wouldn't understand. I'm so sorry cindy.
