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Posted by Judy Shockley on August 16, 2000 at 23:05:16:

In Reply to: Re: 19 month old with history of seizures since 1 month of age. posted by Debbie Dodson on June 29, 2000 at 18:25:16:

: : : : Our daughter, Brenna, is currently 19 months old. She has had seizures since one month of age. The
: : : : seizures started off very mild when they were first noticed and were difficult to catch at times. They consisted
: : : : of slight jerking movements in her legs. Upon mentioning this to our pediatrician, we were assured that this is
: : : : sometimes normal. The jerking movements soon started to incorperate not just Brenna's legs but her arms as well.
: : : : This was hapening approx. ten times a day.
: : : : It wasn't long before we made an appointment at Childrens Mercy with a neurologist. Brenna was given an EEG,
: : : : CT scan and an MRI all normal. A second EEG showed right focal spikes. The neurologist prescribed Tegretol.
: : : : This didn't control the seizures but they were now less frequent. Less frequent but more intense. Brenna went
: : : : from slight jerking movements to full body contractions. The seizures also only occurred during times of sleep.
: : : : At age three months, we noticed significant developmental delays. However, with the continuation of seizures
: : : : plus meds we couldn't expect too much from her. At seven months of age the developmental delays were very
: : : : obvious. Even though Brenna continued to have an occasional seizure the Tegretol was discontinued in an
: : : : attempt to give Brenna a chance to "wake up". A phisical and occupational therapist from Children's Therapy
: : : : Center started working with Brenna.
: : : : At eleven months of age we took Brenna to UCLA for a second opinion. There a video telemetry was conducted
: : : : to rule out infantile spasms. Topamax was prescribed. For the first time, Brenna was seizure free. She started
: : : : making headway developmentally but it was very slow going. Now at nineteen months
: : : : Brenna has started having seizures again. The seizures are pretty intense and only occur when she falls asleep.
: : : : Once again Brenna has lost some interest in her surroundings and is on edge frequently. It seems as though her body
: : : : has just stopped responding to the Topramax despite the numerous dosage incrases. We have just started
: : : : Brenna on Depakote. It's only been two days since the med change so it's effectiveness has yet to be determined.
: : : : We are hoping for the best.
: : : : If you have any words of wisdom or suggestions we would love to hear from you.

: : : Donovan & Patty,

: : : I have a question. Were there any complications during Breena's birth? I started having seizures when
: : : I was about 6 months old and then again at 2. My cat scans all came out negative. Their was not a history of seizures in our family
: : : either. The doctor told my parents my head had a very hard time coming through the canal and was smashed pretty good. My
: : : neurologist today said this very well could be the reason for my seizures. I don't know what they treated me with but I think it was dilatin.
: : : I went seizure free for 28 years and then they started again, grand mal seizures. I have been on dilatin ever since. I went though a cat scan,
: : : MRI and then an EEG just last month. The CAT and MRI came up negative but the EEG showed petite mal seizures in my sleep. You might ask about dilatin.
: : : They are trying to change me to Tegretol but it is not working out. The dilatin has worked great for me.
: : : My wife and I will keep you in our daily prayers. Good Luck.
: : Joe L.
: : Thank you for your prompt response. To answer your question, no, Brenna didn't have any complications during birth. As a matter of fact she was delivered by
: : planned C-section due to Brenna's positioning before birth. My wife is a neotatal RN and has told me of several cases where babies have had difficulty passing
: : through the birth canal. I've seen some of these babies and wouldn't be suprised to hear that they encountered at least some degree of head trauma. But usually
: : the children seem to be fine. However, my wife only sees those children for a very short time before they are discharged. Who knows what the long term damage
: : may consist of. Thanks again. And your prayers are greatly appreciated. By the way last night was a rough one. My baby had about eight seizures during the night.

: Dear Donovan, Patty and Brenna,

: I can sympathize with you about Brenna. My daugher Melissa was diagosed with epilepsy at age 5. It was a constant battle trying multiple drugs, with nothing controlling her seizures. Melissa had partial complex seizures. Surgery was mentioned when she was small and we even had video EEG testing done. We decided that we couldn't possibly have our baby undergo surgery. Melissa was a very normal little girl except for the seizures. Ten years later, after moving to Texas, the possibility of her being a surgical candidate, came up again. At this time she was 15 year of age with no possibility of driving in the future. Melissa had the video EEG performed again. She also had a MRI and a PET scan. I don't know how it is where you live, but here each patients results goes before a board of Neurosurgeons and they decide as a group, whether this person would benefit from the surgery. They all decided that Melissa should be an excellent candidate, and indead she was. In Sept. 96 Melissa had a Right Temporal Lobectomy. The surgery was performed on Friday and she was released on Monday. That has been almost 4 years ago and Melissa has not had a seizure since the day before surgery. She was slowly taken off all medicines 9 months later, and to this day is seizure free with no medications! I don't know if the possibility of surgery is there for your daughter. If I knew then what I know now I wouldn't have hesitated. Although I feel with each passing year with more surgeries being done everyday, that the possibity of success is greater today than 10 years ago. If I can help you in any way please e-mail me at: [email protected] Not every story has a happy ending, but for our family it has been a miracle.

: Good Luck to you and little Brenna,

: Debbie Dodson

Dear Donovan, Patty, and little Brenna,
I could not resist writing back to you after reading your story. My daughter had her first seizure at the age of 2 weeks (she is now 13). Brenna's symptoms that you described match exactly what my infant was experiencing. We rushed our daughter to the hospital emergency room. Three days later and after a numerous battery of test, which included a spinal tap. Finally a cat scan was done. It showed that she had a brain hemorrage. Medically name, Arteral Venius Malformation or AVM. It is equivalent to an older person having a stroke. The Doctor explained to us that where the artery and the vein contected in her brain was malformed and the blood built up into a sort of bubble until it burst. That's when the seizures began. The Doctor's say it is a rare condition but considered an infantile birth defect. I was able to witness the cat scan x-rays first hand and the Dr. pointed out to us a dark spot on the x-ray where the rupture had occured. She was put on phenobarbital for the first year of her life to control the seizures, which worked great, she was seizure free. The Dr's kept a close watch over her infant development. The curious thing about this, in the beginning when we took her back for a six week follow-up. Another cat scan was done and the spot on the x-ray was gone. So the Dr's were pleased, as they put it, it had dissolved on it's own. After her first year the Dr. withdrew her from phenobarbital and we thought we were home free. Would you believe 3 years later she had a horrific convulsion and seizure. (and as with your daughter, it came about when she was asleep) No apparent cause and out of the blue. The Dr's put her back on phenobarbital and later she was switched to dilantin. Over the years she continued to have occasional seizures. At age 12 I ask the Dr. to take her off the medication and let's see how she does. As far as I know she has not had any seizures, however, she seems to be experiencing panic attacks at school now. I contribute this to her neurological condition. Then after doing research on the net about panic and anxiety attacks, I discovered that the drug aspartame can cause panic attacks. Aspartame is used an artifical sweetner! It just so happens that my daughter and I have been drinking "Crystal Lite Tea" for the past year and a half on a daily basis, which contains this aspartame. Aspartame is reported to enhance panic attacks even more in people who already have a pre-exsiting epilepsy. And, the article warned that some pharmaceuticals have aspartame in it. Might I suggest you research the drug your daughter is taking to insure there is no aspartame included and that she consumes no products containing this chemical. I don't know if any of this will be beneficial to you. It's just your letter was almost like reading my very own story. My heart, my love, and my prayers are with you all.

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