Anyone Ever Deal With Epilepsy/ Seizures in Children?

[Artos]

We have been dealing with it for 16 years...has she actually been diagnosed with epilepsy??

That video sorta looks like what Kacie had, but they called them infantile spasms (which can be very harmful if started early like with Kacie at 6 months) We got them stopped with a drug called Sabril. It was unavailable in the States but I got over the counter in Mexico at the time & we now get it from Canada. I'm just throwing it out there, but we are not dealing with epilepsy.

Kacie has what is called 'tuberous sclerosis' & basically is like non cancerous tumors or calcium deposits in the brain...there is no current cure, but they had all told us since the infantile spasms started so early, she would be dead or retarded by now. We put our faith in God & while she is not out of the woods, she is a sophomore in HS & while she struggles with her studies, she is a Jr Varsity cheerleader & many of her former Dr's are amazed.

NOTHING is impossible with God & He does great work through Dr's but took us a while to find the ones we are comfortable with...I would also HIGLY RECOMMEND looking into seeing (long waiting list but do it!!) with a chap Dr. Kendal Stewart. He is a godly man & works with your neurologist (he actually is one) but now focuses on using nutrition along with traditional meds. Kacie is also on CBD & other high doses of certain vitamins. He does a sort of DNA test to find what they need & is convinced various forms of inflammation need to be addressed to help control the seizures.

All I'm suggesting is keep all your options & mind open...some of the other neurologist we dealt with don't care for Kendal's angles, but his results speak for themselves & his client base is huge. He has been a blessing.


If you are interested, PM me your number & I will have Michelle call you, as it would it be best for her to explain it, as she is the one who has been researching this & takes Kacie to the visits as work doesn't permit me to tag along.

best of luck & God bless...stay positive & have faith.

Paul
<><

[mjhaverkamp]

I could not watch the video, my son had the same deal when he was young, he is 21 now and i don't think he has had a seizure in maybe 12 years, he is autistic but not too bad, my prayers are with you, your daughter is precious.

[krausejmk]

Prayers sent for your beautiful little girl

[Big C]

Praying for you and that precious little girl. My nephew has epilepsy been on meds for a couple years now and he was finally able to get off the meds.

[RascalArms]

Prayers for little Kiley and the entire family. God Bless our babies....she is indeed precious sir.

[Sticks&Strings]

That poor baby. Prayers sent. Ill ask my sister who she used for her son. He never had gran-mal seizures but he has seizures and took medication. But last year at the age of 9, he finally got off all meds. It was a long road and may not be gone forever, but for now he is seizure free. Hopefully yall can cure your sweet little girl's.

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[Weimman]

What beautiful little girl. Our prayers go up for her and you family.

[mev002]

I feel your pain brother. One of our children has seizure disorder, but has been seizure free for several years while being under the care of a wonderful pediatric neurologist.



Please call and get an appointment for Dr. Carlos Rivera with the Blue Bird Circle Clinic Of Child Neurology in the Houston Med Center. The office number is (832) 822-5046.



It can takes month to get an appointment, but Dr. Rivera and his staff are the most compassionate medical professionals we've encountered. Ask to speak to his Admin Asst and then explain your circumstances.



Prayers to you and your family.

Thanks for the info. Our doctors are affiliated with the bluebird circle of clinics as well. We were going downtown, but moved to the woodlands location because it was closer. Matter of fact, I just checked her doctors number and it is the same clinic. We are seeing Dr. king at the moment though.


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[mev002]

I know your pain very well brother! When my son was about the same age, he had them. We went through the Life Flight trips and everything else several times The meds were finally able to control his. We also watched what he ate and didn't let him get over heated. He was unable to have anything with "Red Dye 40" That stuff is in dang near anything that is red! He spend 5 days in TCH in a coma, so I really do know your pain. His were all 20 years ago. Now his son is going through the same thing. All I can tell you is very closely watch her body temp and if she even starts to spike a fever, cool her down with damp a cloth or something. Pay close attention to what she eats. They may be brought on by diet, video games, flashing lights, any number of things can make their brain short circuit.

I'll be praying for you and your angel.

Sounds like you know exactly what I'm dealing with. Thank goodness he go over it. I hope and pray both my daughter and your grandson get over it as well. Thanks for the info.


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[mev002]

We have been dealing with it for 16 years...has she actually been diagnosed with epilepsy??



That video sorta looks like what Kacie had, but they called them infantile spasms (which can be very harmful if started early like with Kacie at 6 months) We got them stopped with a drug called Sabril. It was unavailable in the States but I got over the counter in Mexico at the time & we now get it from Canada. I'm just throwing it out there, but we are not dealing with epilepsy.



Kacie has what is called 'tuberous sclerosis' & basically is like non cancerous tumors or calcium deposits in the brain...there is no current cure, but they had all told us since the infantile spasms started so early, she would be dead or retarded by now. We put our faith in God & while she is not out of the woods, she is a sophomore in HS & while she struggles with her studies, she is a Jr Varsity cheerleader & many of her former Dr's are amazed.



NOTHING is impossible with God & He does great work through Dr's but took us a while to find the ones we are comfortable with...I would also HIGLY RECOMMEND looking into seeing (long waiting list but do it!!) with a chap Dr. Kendal Stewart. He is a godly man & works with your neurologist (he actually is one) but now focuses on using nutrition along with traditional meds. Kacie is also on CBD & other high doses of certain vitamins. He does a sort of DNA test to find what they need & is convinced various forms of inflammation need to be addressed to help control the seizures.



All I'm suggesting is keep all your options & mind open...some of the other neurologist we dealt with don't care for Kendal's angles, but his results speak for themselves & his client base is huge. He has been a blessing.





If you are interested, PM me your number & I will have Michelle call you, as it would it be best for her to explain it, as she is the one who has been researching this & takes Kacie to the visits as work doesn't permit me to tag along.



best of luck & God bless...stay positive & have faith.



Paul

<><

Yea Artos, she was officially diagnosed with epilepsy back in February.

Sounds like your family has had a very rough ride as well. Hate to hear it, but glad your daughter is still here with you and doing much better.

We are definitely open to anything at this point. We don't know enough about the disease to rule anything out just yet. All we can do is have faith our doctors start her in the right direction for now.

I'll send you a PM. Like I said, any info we can use we are open to.

Thanks man.


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[jruss]

Yes Chloe started getting them around two. Had them sometimes 2 0r 3 times a day tell she was 4. And then they just stopped. Praise the Lord! Countless trips to children's med. Up all night crying oh my gosh it was the most awful thing to watch. Truly heart felt prayers to you and your family. She is 11 now and doing really well. Pm me if you need to talk.

[mev002]

I appreciate everyone's prayers and well wishes.

I really appreciate the PMs and other stories you folks have about your family's situations. It does make me feel a little better knowing she has a really good chance of beating this thing.

Here she is a few minutes ago. She is starting to feel a little more like herself now.




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[gatt40]

Prayers to you all. Cannot imagine your pain. Don't know much about these things but have known people that have dealt with this and also know some that grew out of them. Such a beautiful child. It breaks my heart. I'm sure this is extremely difficult for you, but be strong for her. God bless all of you and I pray the doctors can find the right medications to control her condition.

[jruss]

Also about the bills and worrying. I know how you feel brotha. We still owe and it don't bother me a bit . Just try and relax and you can only do what you can do. We didn't have insurance on her at the time and 4 grand an MRI. And 5000 neurologist visits adds up. We pay 50 bucks a month. At first they would hound on us and I would just tell them I'm paying all I can after a while they will quit calling and cash those 50$ checks without a problem.

[jruss]

Showed my wife your post she is praying also. And wanted me to tell you that the video reminded her so much of Chloe's episode's. Trileptol is what helped her out.run it by your doc see if it may help your baby.