ped neuro questions...

[mybaboo]

How far to you travel for your child's ped neuro? Anyone using a neuro from another city or state even though there are local ped neuros?

If you're using a non-local doc, why did you choose that route and how does it work? Do you see someone local for emergencies?

OK, sorry about all the questions but I'd appreciate any and all feedback. We're trying to make some decisions about changing docs!

[alizesmom]

We travel about 2 hours to see a peds neuro. First, that's the closest one, second, we adopted our son and this was already "his" hospital and third, we are pleased with them. Hope you find a neuro who is a good fit for you. Karen

[Carly'sMa]

I have to travel about 1 hour. I live in a very rural area of Massachusetts. We have also taken Carly to see docs at Children's Hospital in Boston and in NYC. Carly does not need regular follow ups, just as needed at this point.

[J&K Mom]

We travel about an hour and a half. There is a local doc but #1, he sucks, and #2 he's not really local, he flies in from another hospital about 2 hours away a couple times a month for "clinic" :rolleyes: No thank you. He is a ped neuro (supposedly) but the hospital he is associated with is not a children's hospital.

Where we go is a CHILDREN's hospital. It is in another state, but it is closer to us than the other one, since we live near the NC VA border. Not only is it a specifically children's hospital, but it is connected to a major (adult) hospital.

We absolutely LOVE our neuro and wouldn't ever go anywhere else.

[RathyKay]

We're in a major metropolitan area and have a local ped neuro. We got lucky. He was the ped neuro on call when we went into the NICU. He's really good, returns phone calls the same day, calls with test results (MRI, EEG, CT scan, etc.) the next day. I love him. Just sorry we actually *need* a neuro. He's moved around in the area a few times, but it's always been less than 1/2 hour to where he is/was. Good luck in your search.

[lacyndarella]

We travel 110-120 miles to Chicago. We live in Northwestern IL, close to Mississippi River. But there is no pediatric neurologist here. We were told we could go to Children's Memorial in Chicago or to ped neuro in Peoria. It's about the same distance...and given a choice, Chicago seemed like the better to us. And thank the Lord, there have been no emergencies. But if there were, his pediatrician is local and there is a hospital locally. They could at least get him stable enough to get him to Children's if neccessary.

[Emeric's_mom]

We travel 1.5 hours.

We have an MD locally and a sucky ER so I pray we never have a true emergency.

[mpalmer118]

We started out at with a ped. neuro associated with our local children's hospital. We stayed with him for about a year, he had wonderful bedside manner with Rachel but he was old school and was offended by me asking questions. We left him after he kept raising the dosage on a medication that wasn't working. I kept asking why we were continuing on the med. and kept getting because I said so type of answers. She was on a 1/4 of teaspoon less than an adult dose and she was only 2 1/2 years old! So bye bye to him.

The next neuro we chose is with the next closest major city, with a hugh children's hospital. The hospital is large enough to have several satelite offices. So as long as we go to one of those our drive is about 45 minutes, if we have to go the hospital it is about 1 1/2 to 2 hour drive. We got a referal from our pediatrician to move doctors (was required by our insurance). We left him in frustration over the "is it epilepsy or not" issue. He was great with me and questions, awful with Rachel.

The last and current neuro is with the same hospital as the 2nd neuro. He is wonderful!!! He is great with Rachel, great with me. And instead of acting like I was some sort of demanding pain, he respects the amount of time and effort I have put into trying to find out what was going on with with Rachel. That is not to say that he agrees with me, but he never just brushes off my input.

Good luck!

[Guitarmom]

We travel 1.5-2 hours, depending on traffic. Local neuro is a QUACK. Does not know epilepsy...(I would not have taken my dog who had epilepsy to her!)

Last year my son spent 48 hours in local ER with another emergency issue WAITING for transfer to get to Boston Children's because there was no facility equivelent for his care! It was not for epilepsy care but another. Where they wanted to send him, there would not be neurological care, just care for his depression. NO WAY. He has doctors in Boston, we fought to get him sent to Boston.

We are fortunate to be just 2 hours from this place! WELL worth the travel.
I know people out west travel MUCH longer for good care!

Emergency care can be harder to get. We are very fortunate to have a wonderful ped who is an amazing advocate.

G

[Little JT]

We spent the first 4 years of Jake's life seeing neuros at Johns Hopkins, which is about 25 minutes away from out house. Since Hopkins has such a great reputation, it never occurred to us to leave the state. However, recent events and a lack of what I considered an adequate response from Hopkins led us to a new neuro at Pittsburgh Children's Hospital, an approximately 4 hour drive from our house. We're very happy that we moved on, but we stay in contact with our Hopkin's neuro and would definitely go there to the ER in an emergency situation.

[langansmom]

We have a "world class" child neuro department a few miles from our house (yeah right) but after being treated to their fine services, we began driving 300+ miles to see apeds neuro at Cincinnati Childrens. Our wonderful neuro moved to Pittsburgh Childrens and we now fly there to see her and wouldn't think of doing it any other way. It is not terribly convenient, but the care is top notch and we are able to do it.

[Denae]

We also have a large childrens hospital less than 20 mintes from our house (wake forest Brenner Childrens Hospital) but the neuro department there is terrible and local SN parents KNOW better than to go there) the neuro department is some what of a joke around here.

Ri's neuro was in a much smaller city about an hour away but he moved farther away to be part of a childrens hospital now he is about 1 hour 45 minutes away. Now the emergency issues is huge.. There is a hospital close by my house but it is a SMALL hospital, 1 ER doc on call... We have gone there several times over the last 6 months for seizures and they have handled it nicely, all she ever needs is some oxygen for a couple of hours so it hasn't ever been too serious. They of course would want to transfer her to Brenners since it is closer, I guess we will cross that bridge if and when we get there.

Her geneticist is much farther away, again it was to avoid Brenners, we go to Mission Hospital in Asheville, which is about 3 hours away.. We LOVE her geneticist and would travel around the country to see her. She highly respects her neuro, so even though he has irritated me a time or two we have stuck it out, and we really do love him..

Travel at first was a pain, but after 4 years of not using a local dr, we are used to it and find it well worth it.. The little "vacation" we get is great too..

[mybaboo]

Thanks everyone! I appreciate your input!

We have a "world class" child neuro department a few miles from our house (yeah right) but after being treated to their fine services, we began driving 300+ miles to see apeds neuro at Cincinnati Childrens. Our wonderful neuro moved to Pittsburgh Childrens and we now fly there to see her and wouldn't think of doing it any other way. It is not terribly convenient, but the care is top notch and we are able to do it.

How often do you see the neuro? Then do you call/email regularly? We're thinking of going back to the neuro Molly saw in Chicago which would require flying since we're in Nebraska now. One last question, if you need to do an EEG do you go to Pittsburg or have it done locally and sent to Langan's doc?

[langansmom]

We see her 3-4 times a year although she gets us in very quickly if we need to see her suddenly or if things go downhill. We go up there for EEGs. Our neuro likes to read the EEGs and be there during the testing.

We have really good communication through her nurse and by email. If I want to talk to the neuro personally, it's not a problem. When it's not an emergency she may take a few days to get back to me if I want to speak to her directly but she always does and in emergencies she gets on the phone fast. If it's not an emergency but something we are very concerned about, she is good at calling that night. I don't think she sleeps (at our last EEG, she was in our hospital room at 8pm on a Saturday night....). The nurse always gets back to us the same day. She had one nurse who wasn't so good at getting back to us but she is gone.

Langan had the vns implanted in Pittsburgh and our neuro arranged to have the adjustments made by a cyberonics rep here in our peds office so we don't have to go up for those. When we see something new and odd, she wants video and takes it from there. She rocks.

Good communication is key for the long distance neuro. It works for us, and if you are able to have that open line of communication, I highly recommend it.

Feel free to ask any other questions!!

(((hugs)))

[tammyjh]

When my dd was a baby, we saw a neuro regularly. Now that she is older, we rarely see a neuro. We saw him recently with about the same results as the last time we saw him. He hurried us out of his office with little help or direction. He's the only pediatric neuro. in the state and its about an hour to his office...not too bad of a ride. We've had to access most services by calling ourselves or demanding pediatricians to give us referrals.