Seeking Advice & Support on Seizures That My 5 Mon Old Has Had Since Birth

I'm not sure what tests and meds you have tried or if you have tried other doctors but I think the first thing I would do is find another doctor or take him somewhere like Vanderbilt Childrens Hospital. Even if you have to go in through the ER it's better than the not knowing. It's got to be stressful, i've not dealt with seizures but my daughter (9) went though a period about 2 years ago where she was covered in hives for about 2 months and we did all sorts of tests trying to figure out what was causing them. She was miserable and itchy and it drove everyone in the house nuts, not knowing how to fix it. We went through 3 doctors before it went away. That would be my best advice, when one doctor says he/she doesn't have an answer, go to another one, and keep going until you get it solved. Have you seen a neurologist? There are pediatric neurologists at Vandy Childrens that I have heard wonderful things about.

Appeal to the great physician through prayer. It's the most sure-fire cure in the world! (who knows...you may be led to the answer you seek, or you may just have a miracle on your hands!)

M., who have you seen about this? Where do you live? Has he had an EEG? Have his seizures ever lasted more than five minutes? Is he on anti-seizure meds? I wouldn't think they were febrile seizures if he has had them repeatedly. There is an excellent neurology department at LeBonheur in Memphis headed by Dr. James Wheless {UTMG Pediatric Neurology,
777 Washington Ste P240 Memphis, TN 38105 ###-###-####}, who has pioneered different medical and surgical interventions as far as epilepsy, seizures, and such. He moved here from Texas, and he is so good that some of his patients' parents still bring their kids all the way here to Memphis for him to continue treating them. Also, Dr. Jabbour is great, too. I wouldn't recommend Dr. Lynn. He is smart but his bedside manner is atrocious. Dr. Boop is a widely-known neurosurgeon who is unbelievable and practices at LeBonheur. Here is a link about Drs. Wheless and Boop: http://lebonheur.org/portal/site/lebonheur/menuitem.8a654...

Has your son been tested for PKU (phenylketonuria)? I beleive that it is mandatory that all hospitals do this test on newborns before they leave the hospitals. I ask this as my older brother, now 40+ yrs. old, had PKU as a child before they were doing mandatory testing. My mom caught this in his first few months of life as he was having "petit mal" seizures (small seizures) a lot throughout the day and would just tune out. Finally, a doctor determined that he did have PKU and put him on a special diet that restricted his intake of phenylalanine. His seizures ceased alltogether...but, as he got older and went off the diet, he developed epilepsy. There could be a correlation between the PKU and the epilepsy. I am not a doctor and not saying your son has PKU or epilepsy but you might want to confirm that the PKU test was, in fact done (check his medical records yourself) and look into epilepsy in infants online, either by a "google" search or at www.epilepsy.com. The March of Dimes also has info. on their website about PKU and other genetic disorders on their website: www.marchofdimes.com Don't be afraid to ask other doctors for 2nd, 3rd and 4th opinions. Best of luck to you...I hope you get to the bottom of it quickly!

Hi M.!
I used to work for a neurologist and at Scottish Rite in the EEG lab where I dealt a lot with kids with seizure disorders. More than likely, your son probably has what's called "febrile seizures" which can be very common in small children/infants.
They usually outgrow them. However, you can find a lot of good information on febrile seizures on google and the internet.
If you are in need of a good doctor, I used to work for Child Neurology who specializes in seizures. I am NOT affiliated with that hospital or doctors office any longer, as I am a stay at home mom too now. So, I will not benefit financially at all for telling you to see them. I don't really have any one particular one that I prefer over the other, but the seizure specialist when I worked for them was named Dr. Flamini (pronounced Fla-me-knee). I would NOT go to Dr. Goldstein, not because he's not a great doctor...he is terrific, but his speciality is not in seizures, but muscle disorders such as MS.
Hope this helps!
Good Luck and God Bless

My 18mos old daughter has had seizures since birth, so I definately understand how scary it can be. We've been very lucky that she has responded well to her first medication, but I've heard that it usually takes multiple tries to find the right medication program for each individual. It's even more difficult with children since they are constantly changing. It can be so frustrating, but hang in there.
We love Dr. Knowles at TC Thompson Children's Hospital in Chattanooga, TN, if you're near that area at all.
I also second the suggestion to contact the Early Intervention program in your area (it's called Babies Can't Wait in Georgia...I work for the program in Dalton). It may vary from state to state, but I know in GA, a seizure disorder is considered automatically elligible for intervention services because children are a very high risk for developmental delays. It involves therapists and teachers who will usually come to your home to help you monitor your child's development, provide learning opportunities and offer support.
If you have any questions, or just need to vent about life to another parent who "gets it", please feel free to message me any time.
H.

Ongoing seizures are certainly serious and scary. If you are concerned about your son's development, you can contact the Babies Can't Wait program for support; it's the state's early intervention program. (I work with the program as a developmental specialist.) In Athens and the surrounding areas, the number is ###-###-####. I am new to mamsource, and I'm not sure how the messaging works on this site... However, please feel free to send me a message if I can help with any other information. C.