My 3 month old daughter has very complicated and somewhat unknown medical problems. Does anyone know...?

Q. ...of a VERY good Neurologist that I can take her to? She has a chromosome disorder that the doctors have never seen before. We don't know what goes along with it so we are having to just watch and wait. We do know that it is the cause for a large hole in her heart that was surgically repaired on Nov. 14th, along with some physical features. Small, low placed ears, wide nasal bridge, underdeveloped jaw and pelvis, larger forehead. About 2 weeks after surgery she had a seizure in the hospital but the doctors blew it off because she didn't do it again in their presence... She had another one in the hospital that the nurse chalked up to an "underdeveloped nervous system" and said wasn't a seizure. Since we brought her home she has started having them more frequently and after 2 stays in the hospital (she was sent home because she didn't "perform"), 2 EEG's, and a fight with the Neurologist, it has been found that they are, indeed seizures. Before the seizures became more frequent, she had started doing a myoclonic jerk. This happens upward of 40 or 50 times in a day some days. She is also having strange "dystonic" movements where her eyes will look in strange directions, her head will turn from side to side constantly, her arms and legs will move. This will sometimes last for 30 min or more at a time where she just can't stop moving. I am having no luck with the doctors here. They aren't looking at the whole picture and are telling me that it's "just myoclonis" or "just dystonic movement" and "we are treating the seizures". Well, since she's been on Keppra, the seizures aren't as violent or frequent, but still happen every couple of days. The myoclonic spells and dystonic spells seem to happen when she is gearing up for a seizure or has just had one. My question is, has anyone seen this in an infant and what was done to help control this? Does anyone know of a GOOD neurologist that I can take her to? I am willing to travel as far as I have to in order to get her the help she needs because the answers just aren't coming from Arkansas.

A. I would do some research on the internet and figure out the top 25 children's hospitals in the USA and contact all of them.

I know the Children's hospital in Denver is good. And not terrifically far from you.

The Sick Children's Hospital in Toronto, Canada is a very good research hospital too. Worth contacting.

Maybe the Mayo Clinic? A great hospital in general.

I just can't imagine how concerned you must be. Big hugs.


EDIT:
Ok, I did some research for you:

Top neurology children's hospitals according to US News:
1Johns Hopkins Children's Center, Baltimore
Baltimore , MD 55.8 100.0
2 Children's Hospital Boston
Boston , MA 47.7 95.0
3 Children's Hospital of Philadelphia
Philadelphia , PA 46.4 93.3
4 Children's Hospital Cleveland Clinic
Cleveland , OH 27.2 72.7
5 Texas Children's Hospital, Houston
Houston , TX 21.5 67.7
6 St. Louis Children's Hospital
Saint Louis , MO 18.3 63.4
7 Mayo Clinic, Rochester, Minn.
Rochester , MN 16.9 56.7
8 Children's Hospital and Regional Medical Center, Seattle
Seattle , WA 14.1 56.5
9 Rainbow Babies and Children's Hospital, Cleveland
Cleveland , OH 14.7 54.8
10 Children's Hospital of Pittsburgh of UPMC
Pittsburgh , PA
11 New York-Presbyterian Medical Center
New York , NY 10.6 53.6
12 Children's National Medical Center, Washington, D.C.
Washington , DC 6.7 51.8
13 Childrens Hospital Los Angeles
Los Angeles , CA 7.7 50.3
14 Mattel Children's Hospital UCLA, Los Angeles
Los Angeles , CA 8.0 50.2
15 Children's Hospital, Denver
Aurora , CO 5.7 49.7
16 Children's Memorial Hospital, Chicago
Chicago , IL 4.3 49.0
17 Cincinnati Children's Hospital Medical Center
Cincinnati , OH 4.4 48.9
18 Lucile Packard Children's Hospital at Stanford, Palo Alto, Calif.
Palo Alto , CA 11.0 48.4
19 UCSF Children's Hospital, San Francisco
San Francisco , CA 12.5 48.2
20 Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville
Nashville , TN
21 Children's Hospital of Michigan, Detroit
Detroit , MI 1.5 45.1
22 Miami Children's Hospital
Miami , FL 4.9 44.7
23 Children's Medical Center Dallas
Dallas , TX 1.5 44.6
24 Nationwide Children's Hospital, Columbus, Ohio
Columbus , OH 3.3 44.5
25 Schneider Children's Hospital, North Shore-LIJ Health System, New Hyde Park, N.Y.
New Hyde Park , NY 0.0 44.4
26 Riley Hospital for Children Clarian Health Partners, Indianapolis
Indianapolis , IN 1.5 43.9
27 Children's Healthcare of Atlanta
Atlanta , GA 0.0 43.8
28 Children's Hospital of Wisconsin, Milwaukee
Milwaukee , WI 2.9 43.8
29 C.S. Mott Children's Hospital, Ann Arbor
Ann Arbor , MI 1.4 43.0
30 Primary Children's Medical Center, Salt Lake City
Salt Lake City , UT


Top general children's hospitals according to US News
1Children's Hospital of Philadelphia
Philadelphia , PA 50.0 100.0
2 Children's Hospital Boston
Boston , MA 43.6 94.0
3 Cincinnati Children's Hospital Medical Center
Cincinnati , OH 24.9 67.5
4 Johns Hopkins Children's Center, Baltimore
Baltimore , MD 19.5 60.8
5 Rainbow Babies and Children's Hospital, Cleveland
Cleveland , OH 18.0 60.2
6 Texas Children's Hospital, Houston
Houston , TX 18.2 57.9
7 Children's Hospital, Denver
Aurora , CO 14.0 52.6
8 Children's Hospital and Regional Medical Center, Seattle
Seattle , WA 13.5 51.8
9 Childrens Hospital Los Angeles
Los Angeles , CA 9.9 50.0
10 Children's Hospital of Pittsburgh of UPMC
Pittsburgh , PA 11.4 49.3
11 New York-Presbyterian Medical Center
New York , NY 9.8 48.7
12 Lucile Packard Children's Hospital at Stanford, Palo Alto, Calif.
Palo Alto , CA 9.0 48.2
13 Children's National Medical Center, Washington, D.C.
Washington , DC 8.9 46.8
14 Children's Hospital Cleveland Clinic
Cleveland , OH 6.3 46.7
15 Nationwide Children's Hospital, Columbus, Ohio
Columbus , OH 6.0 45.1
16 Mattel Children's Hospital UCLA, Los Angeles
Los Angeles , CA 5.0 44.3
17 St. Louis Children's Hospital
Saint Louis , MO 7.6 44.3
18 Children's Memorial Hospital, Chicago
Chicago , IL 7.6 44.0
19 Children's Healthcare of Atlanta
Atlanta , GA 4.6 41.9
20 UCSF Children's Hospital, San Francisco
San Francisco , CA
21 Massachusetts General Hospital for Children, Boston
Boston , MA 4.6 40.1
22 Primary Children's Medical Center, Salt Lake City
Salt Lake City , UT 3.2 39.8
23 Monroe Carell Jr. Children's Hospital at Vanderbilt, Nashville
Nashville , TN 3.1 39.4
24 Arkansas Children's Hospital, Little Rock
Little Rock , AR 4.5 39.3
25 Children's Medical Center Dallas
Dallas , TX 1.9 39.2
26 C.S. Mott Children's Hospital, Ann Arbor
Ann Arbor , MI 3.0 39.2
27 Duke Children's Hospital and Health Center, Durham, N.C.
Durham , NC 3.2 38.0
28 Children's Hospital at Montefiore, New York
Bronx , NY 1.3 37.9
29 Schneider Children's Hospital, North Shore-LIJ Health System, New Hyde Park, N.Y.
New Hyde Park , NY 1.7 37.9
30 Children's Hospital of Wisconsin, Milwaukee
Milwaukee , WI


This is supposed to be a really good children's neurology hospital in NYC: http://www.montekids.org/services/leadership/neurology/


Maybe these people can help guide you?
http://www.childneurologysociety.org/

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