neonatal seizures

[maccoffey]

I am new and struggling with my 1 month old grandson having intermittent seizures. He has had the usual medical work up, is on two anti-seizure meds, and the parents are investigating all the alternative approaches such as chiropratic, diet, herbs, etc. I would like to know where the major epilepsy centers for research and treatment are located. Help?

 

[LivingFruity]

Hi Maccoffey :hello: Welcome to CWE! I'm sure this must be a scary time for you and your precious grandbaby's parents. The fear and uncertainty that I went through when my son first started experiencing seizures was almost unbearable. I applaud you and the parents for taking a proactive approach in researching all of your options :clap: Make yourself at home and have a look around. There's a lot of information available on this site.

 

[Bernard]

Hi maccoffey, welcome to the forum. :hello:

... the parents are investigating all the alternative approaches such as chiropratic, diet, herbs, etc. ...

They might be looking in the wrong places with chiropractic and herbs. I built a chart listing all the alternative methods I could find that had been studied clinically and found to be efficacious (see link in my signature).

... I would like to know where the major epilepsy centers for research and treatment are located. Help?

http://www.coping-with-epilepsy.com...epilepsy-centers-map-united-states-only-2215/

Level 4 epilepsy centers are supposed to be the best equipped and staffed with the best experts. However, as our resident brain can tell you, that doesn't always mean they deliver the best care.

 

[brain]

Editorial from Brain

:hello:

And welcome to CWE! And I would also add in addition
to Bernard's posting - there are other Level 3 and 4
centers that are NOT listed in the map, and you can
actually find some via your own State via either by
going through the State Resources, Major Hospitals
by contacting them, or visiting:

Cleveland Clinic

Which Cleveland Clinic has branches throughout the
USA and you can check at their main website to
find out or use their correspondence and obtain
information there (they are exceptionally quick to
respond).

Bernard is absolutely correct; "just because...." they
are labeled as Level 3/4 Centers does not always
mean that you are going to get the best care. I've
been through the gates and out the gates. Some
are of excellency and some are not - it pays to do
your homework upfront and ask a heck a lot of questions!

Moreover ---> there are other options:

1) Consulting with your (believe it or not) the Pediatrician
for the BEST (demand the BEST, not the second best,
third best, or anything lower than that) Facility available;
and tell him/her you will not settle for anything less!

2) Some States have "Check your Doctor" as well as
various Internet that are free without any charges; to
check the background of such Physician - Neurologist
or Epileptologist. It pays to know who you are going to
deal with before you go! (However, the flip side of the
coin is, it does not always necessarily mean that you
are going to get what you see....)

3) When you find one ...

• Give them a call, if the Staff are cheerful and happy; you know you've got "The right one babe!" - because the Physicians are also going to have the same attitude ... the atmosphere is contagious. If it's the opposite and they are rude, obnoxious, and a bunch of sourpusses; you can just forget about it ... move on and look for another place!
• If you found a good one and the rapport is excellent, they will be MORE than happy to spend time with you answering any questions that you have. For their concerns are YOU and the PATIENT. (For they have the attitude of patients and safety comes first)
• Rapport is very important! Some will go so far ahead of the game to provide you everything before you even get there. Indeed you will feel overwhelmed; but this is all good! That shows to prove how caring they are!
• Understanding <--- These people possess the patience of a saint! They have heard everything in the book and nothing is absolutely new to them. They bring calm assurance. They know what can wait and what is urgent. So you can know that you are in good hands
• Ask Questions ...
• Ask Questions ...
• Ask even more Questions ... (they just love it!) as implied, you know you're in good hands when they have the patience of a saint!
• When you arrive, you will be expected to bring medical records, but I strongly recommend that the Pediatrician himself/herself to do this work - for there is nothing better than having the Doctor sending the Doctor the reports before you enter in. So all you will need to do is bring in notes, what one experiences, how frequent, description, etc. And especially the family history if all possible
• Don't forget the Insurances! And if a minor, bring all original health documents including all current shots; etc - they will make copies of the originals and return them back to you. They need specific dates of such, for some of these can cause or be a problematic issue for children / babies.
• If a child / baby - it is a good idea to bring their favorite toy and stuffed animal, for this is going to be a "scary" place for them, even bringing a their favorite blankie is a comfort as well. The greatest fear for the child / baby is that it comes from their own parents; so if the parent is relaxed - so will the child / baby. Keep this in mind.
• These places are HUGE - and very busy and bustling, that it can make you dizzy! (not a joke) And it can leave one wondering how does the left hand know what the right hand is doing around here? *laughing* But sometimes there are delays - expect it! Emergencies do arise, so be prepared for such cases, so bring something for yourself; while some do have televisions and some don't - it does pay to bring a capped bottle of water or something for yourself
• If there are any medication(s) involved - BRING THE ORIGINAL BOTTLE(S)! (If refrigeration is required, bring a small cooler with those gel-ice packs that will hold up for a long period of time). Including the entire contents! Continue to take the medications as directed and do not change anything unless the Doctor has seen the patient and directs otherwise.
• Because nervousness is often involved people tend to forget things - so it is wise to plan ahead; buy a simple notepad and write down Allergies; anything unusual --> such as a prolonged high fever, reactions to specific foods (yes, some foods can trigger seizures), bath time, or anything that what is deemed normal that is abnormal; make notes of such even if it is a couple episodes. Because you don't want to leave the place and say "Oh yeah, I forgot to tell ...."
• When you arrive to the place, you'll always know immediately that you've been to the right place with all fairness, because of the simple Employees to Physicians - they will be smiling, laughing, and happy; likewise so will the patients and their family, friends, and all those around you. Observations will tell you a lot!

The most hardest and difficult part is the "waiting game",
for such things which one deems as "SLOW", Neurology
is a slow process unlike everything else. For the brain is
a delicate matter and things must be done tenderly and
not to harm the patient. So these experts have to go a
step beyond far more than any other specialties that are
out there! For one does not realize how much is imposed
with dealing in Neurology / Neuroscience. Keep in mind,
PATIENCE is the key. It requires teamwork and everyone
involved, with everyone working together ---> it turns
out to be a brighter future and betterment for all.

 

[maccoffey]

Bernard,
thanks for your excellent response. I'd seen your chart and found it useful, and the maps of level 3 and 4 sites was what I wanted. I'm in SF, and there are three nearby. The parents are at one of them, and i assume we could go for a 2nd opinion at another.
Mac