9 answers

Seizures and MORE!

Ok, to make a long story short, my daughter had a seizure in August. It lasted over 20 minutes, we were taken by ambulance to Children's. The Drs there could not determine whether or not it was caused by a fever b/c it was so long. We did every test under the sun: ct scan, eeg, sonogram, x-rays and finally an mri. Well, the MRI showed that she had less white matter than she should in her brain, she has a small cyst on her patuatory (sp?) gland, and that one ventricle (carries spinal fluid)is larger than average, but not abnormal. They wanted us to get a follow-up MRI in 4-6 months. So, last Friday(a week ago) we went to Children's and got another MRI. The results were pretty much that there had been no change from August up to now. I was told by the drs at Childrens that if the white matter was going to "catch up" it would have done it by now. I saw a Neurologist at Medical City yesterday (Chidrens could not see me until April 3rd). The Dr we saw said that matter of the brain could take up to the teen years to fillout and that there is not much to worry about. Dr said he wanted to continue to monitor the ventricle, the cyst and the matter, but that she was devloping just fine, and advanced from what he saw. I am just really confused b/c 2 really qualified individuals gave me VERY different opinions. He also asked if she tilted her head a lot, we didn't think much of it, but now after he brought it up, my husband and I have noticed she tilts her head all day long to the left....I asked so many questions, and never really touched on the tilting thing after he asked...anyone know why he would ask or what it means??? She has also had 2 "episodes" of what looks like she is zoning out, but due to the seizure thing, I am thinking they could be "mini" seizures. I know, I am an idiot, I totally forgot to bring that to the 2nd neurologist's attention, but I was overwhelmed w/so much to take in. I have told my reg ped and am going to call the neurologist on Monday, but anyone have any advice on any of this??? Also, I am planning on getting a 2nd opinion of the MRI results just b/c I want 2 people to have the same opinion. Children's had one, Medical City has a different, just want to know if anyon agrees w/either!.......I have waited since August to find out if she is ok, and I can't take it anymore...I worry all day long! I know this is soooo long, but if anyone could touch on any issue I have brought up I would be so thankful!

What can I do next?

So What Happened?™

I have sent her info to two separate neurologists (one in Keller and one in Garland) and those 2 had even different opinions from what the first two said...ughhhhh. I faxed over a list of questions for the Dr. at Medical City and am just giving him enough time to respond before I attempt to call him again. Thanks for all the advice...will keep you posted!

More Answers

We are going through some of the same things you are right now. I completely agree that you should get a second opinion. I did not like the doctors at Children's either. We saw a neurologist at Medical City for the same reason you did (because Children's couldn't get us in for 3 months). We are also going to see a neurologist out of Plano as well. I am anxious to find out more about my child's diagnosis and want to get the same answer from at least two doctors. Good luck!

1 mom found this helpful

C.,
Good morning and blessings to you and your family.
When you go to the doctor, ask for a CRP test, the C-ReActive protein test, this test show how much inflammation there is in our body. and all disease start w/inflamation.
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Have you ever thought about taking your daughter to the chiropractor for an adjsutment? It is worth a shot. I treat alot of patients for seizures. It helps. Did you have your child vaccinated? If so do you think the seizures and white matter in the brain are from the vaccinations? (disease, mercury, lead, aluminum, etc. in the shot)

HI C.,
Here is a link for some information on chiropractic for the pediatric population. It's always better to be more informed as a parent, especially since you also mention the head tilt. If the upper portion of your baby's neck is not moving properly then that could lead to an array of things and her nervous system will be able to express itself as it should. http://icpa4kids.org/research/chiropractic/epilepsy.htm

If you have any questions feel free to ask. Also worrying is natural especially when it comes to our kids but keep in mind the little one you are carrying. That extra stress takes a toll on him as well.

My heart goes out to you. Call Dr. Lana Petrunin. She is a naturopathic doctor in Frisco, Texas. She is originally from Russia and has extensive knowledge how the body works and how it heals from inside out without medication. She is certified in nutrition and Iridology. I think she can help you. Her nbr is ###-###-#### She is very busy and booked up. Tell her that Y. Fischer sent you. Sending you all the best for your little girl.

Well first off you need to tell your doctor about the "mini" seizures because there are types of seizures where the person completely zones out. I believe they are called absent seizures, you can look online at webmd or other medical websites and it will give some information on different types of seizures, their symptoms, and the treatments available. I would definitely talk to the doctor about these seizures and ask what tilting the head could mean. I have no idea if any of those mentioned problems with the decreased white matter or pituitary cyst would cause the seizures, but another doctor's advice won't hurt in addition to the two opinions you already have. Just keep in mind they may give a totally different opinion. I know it must seem overwhelming and scary, but you're doing what you can to figure it out and that's the best place to start. Good luck!

My sister was 9 when she had unexplained grand mal seizures, probably brought on by a high fever and over the counter medicine I gave her during this fever. She was taken to the hospital and was never really diagnosed. She had 2 more episodes of the grand mal seizures and numerous episodes of the "zoning" out type. The doctor put her on Tegretol until she reached about 12 years old then she was off of them and never had an episode since. She is now 35 years old. Her doctor said it could have been too much brain activity and she just grew out of them. I hope this is your case as well. It can be pretty scary.

I am so sorry you are having these issues with you daughter. My kids both have neuro issues and even though we are in Dallas we go to Cook Childrens in Fort Worth where I have found a wonderful neuro. I have been to CMC in Dallas and did not have a good experience with neuro - they could not even find why my son was passing out and really didn't try (he had a brain injury)and they had no clue about the disorder they both have and told me it was not of interest to them. You might want to take you films (make sure you always get a copy of the reports) and take her to Cooks. Best of luck to you.

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