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Medical Forum / Diseases and Disorders / Epilepsy / March 2005New member
Hi, my name is Patty. I have a 9 year old daughter who has a mass of medical problems. To start with she was born dead, and died three times the day she was born. The IV antibiotics they gave her at birth caused her to go nearly fully deaf until age 3. From birth to 3 every hearing test showed significant, worsening damage. By the time we enrolled her in a special pre-k and got her hearing tested for hearing aids, there was no hearing loss. She was significantly delayed in speech, fine motor skills and gross motor skills. (About 3 years delayed.) I had a feeling there was more than meets the eye because I couldn't see early hearing loss causing delays in motor skills and emotional IQ. Her pediatrician agreed and referred my daughter to her husband, a pediatric neurologist. By this time she was about 5 and was already showing dyslexia, ADHD and staring into space. We weren't sure if her staring into space was related to ADHD or something more because there is an epilepsy history on my side and my husband's side of the family, as well as emotional IQ delays. My uncle has grand mals, my aunt in law has petit mals, and my sister is younger in mind than in age. Also I have in-laws who has strong ADHD, ADD, dyslexia, and early hearing loss history. Her neurologist ran an EEG, which came up unremarkable. I doubted these results as she screamed the entire time and never relaxed once. He also ran an MRI for his own curiosity of what her brain make up looked like. I'm very glad I went along with the MRI as they found she has what's known as Agenesis of the Corpus Callosum. Agenesis of the Corpus Callosum leads to many problems, including seizures. Last year she began having bladder accidents, so we reran the EEG after urology found nothing amiss. On the EEG, he found seizure activity on both halves of the brain. He began her on 100 mg. tegretol twice daily and ran blood work every 2 weeks. She is now on 200 mg. tegretol daily for seizure activity and about 3 weeks ago began having bowel accidents as well. He does not feel it's grand mal, nor petit mal, but an "in-between" if you will, and will rerun the EEG next month. This one will be a 4 minute hyperventilating EEG. Until then he is not changing her medication. I don't know if it helps any, but her list of medications are 43 mg. Strattera for ADHD 5 mg. Adderall for ADHD 400 mg. Tegretol for seizures 5 mg Singulair for Asthma and allergies albuterol inhaler for mild asthma albuterol nebulizer for when simple cold becomes walking pneumonia (since before Singulair, this was a weekly occurance) multi-vitamin for previous higher dose of Adderal caused weight loss adult diapers for bladder and bowel accidents, Medicaid won't cover children sizes, and until they go away she won't wear regular underwear Medical conditions are Seizures ADHD Dyslexia Dysgraphia (handwriting disability, uses keyboard for long assignments in school) emotional delay (9 years old and still writes on walls, tears pages of books, etc..) agenesis of the corpus callosum (born without vital part of brain) I know this is long forgive me. There's a lot of back history as you can see. If anyone knows what kind of seizure would cause staring into space and losing bowels, I'd be grateful for any information you can provide. Even if you've just been through it before. This is new territory for me. I've filed for SSI but we are now in appeals council as the judge felt I lied about her behavioral problems in school and her seizures "weren't that bad". Last year her behavioral problems were so bad, her principal would drive her home at least twice a month and I would get phone calls, twice a week. The good thing is once she began the 400 mg dosage of the tegretol, it began acting as a mood stabilizer. We've actually been able to cut back on her behavioral counselor appointments. Considering we used to go twice a month and now go bimonthly, I'd say we're starting to get on the right track. I'm hoping if they do switch her medication after the new EEG, it will have the same effect, otherwise we're back to the behavioral problems. Thank you for reading my post. Patty > Hi, my name is Patty. I have a 9 year old daughter who has a mass of > medical problems. To start with she was born dead, and died three [quoted text clipped - 19 lines] > unremarkable. I doubted these results as she screamed the entire time > and never relaxed once. Her behavior isn't going to make a difference on the EEG results really unless she dislodges an electrode. EEG positives are pretty hard to capture anyway because a person needs to be having abnormal brain wave activity at the time of the test. Sometimes the seizure activity occurs in the deep brain, which can be hard or impossible for the electrodes to record. Since her EEG was negative, they may have to repeat it in the future. He also ran an MRI for his own curiosity of > what her brain make up looked like. I'm very glad I went along with > the MRI as they found she has what's known as Agenesis of the Corpus > Callosum. > > Agenesis of the Corpus Callosum leads to many problems, including > seizures. The information I found indicated there were varying degrees of this problem (from partial to full absense of this part of the brain, or actually the connector between the two brain hemispheres) ranging from no minimal defect to severe. The degree of disability ranged from none to severe. The interesting thing was one page said about 85% of the folks with this condition have central nervous system involvement, and since the CNS is involved in many parts of body function, including sphinctor function, to me it seems that loss of control of bladder or bowel function is not really unexpected. Last year she began having bladder accidents, so we reran > the EEG after urology found nothing amiss. On the EEG, he found > seizure activity on both halves of the brain. He began her on 100 mg. [quoted text clipped - 32 lines] > into space and losing bowels, I'd be grateful for any information you > can provide. There are about 30 different types of seizure disorders. Some forms can result in staring. Sometimes there can be a loss of bladder or bowel function. Some of that also depends on seizure type. Some medications might contribute to constipation. Sometimes when constipation is significant, there can be leakage of more liquidy fecal material. A person really can't control this leakage until the constipation issue is resolved. It's just another thing to consider. Even if you've just been through it before. This is new > territory for me. I've filed for SSI but we are now in appeals > council as the judge felt I lied about her behavioral problems in [quoted text clipped - 9 lines] > behavioral problems. Thank you for reading my post. > Patty There are a lot of people with epilepsy and other disabilities or health problems who do not receive any type of benefit and probably never will. You might need to retain a lawyer (who specializes in that sort of thing) and usually they, the government, will require professionial input from teachers, counselors, doctors, etc. Most of these government benefits are for people with permanent disabilities. The disability has to limit their ability to take care of their own needs too. Honestly, right now I don't think those things can be said about your daughter. Talking with an appropriate attorney might give you some better answers to all this. Barb >Her behavior isn't going to make a difference on the EEG results really >unless she dislodges an electrode. EEG positives are pretty hard to [quoted text clipped - 3 lines] >record. Since her EEG was negative, they may have to repeat it in the >future. I'm sorry then. I was under the impression it would. He stressed the importance of her having a resting EEG, including discussing the possibility of sedating her. And yes, a few times, she did yank the nodes with her struggling and they had to reapplied. >The information I found indicated there were varying degrees of this >problem (from partial to full absense of this part of the brain, or [quoted text clipped - 5 lines] >sphinctor function, to me it seems that loss of control of bladder or >bowel function is not really unexpected. She has what's known as Complete Agenesis. Meaning she's missing the entire thing. I didn't realize about the sphincter control though. That might explain a few things. There is a LOT of information out there on this so sometimes it's hard just wading through it all. >There are about 30 different types of seizure disorders. Some forms can >result in staring. Sometimes there can be a loss of bladder or bowel [quoted text clipped - 3 lines] >person really can't control this leakage until the constipation issue is >resolved. It's just another thing to consider. Thank you. Gives me an idea of what can happen. According to the geneticist there's a whole lot to watch out for with her, including retinal tumors that go along with the Agenesis. Thankfully though, all her eye exams have all come back normal. Just myopia and a mild astigmatism thus far. >There are a lot of people with epilepsy and other disabilities or health >problems who do not receive any type of benefit and probably never will. [quoted text clipped - 8 lines] > >Barb Don't get me wrong, I didn't just file for SSI as soon as I found out what was going on, it was recommended by both the geneticist and pediatric neurologist. She receives a ton of therapies for her varied problems, speech therapy, occupational therapy, and physical therapy to teach her body to cross wires and improve her balance, aquatic therapy only covered when not in school, again for balance and rewire the brain, behavioral therapy for impulse control issues, (what the therapist believes to be intermittent explosive disorder). Her EEG is in a couple of weeks, hopefully I'll know more then. Because of the recommended therapies and constant health problems that will potentiall arise with her condition (their words), they recommended I file for the SSI so she'd be covered medically and have money for the necessary equiment she'd need for her special needs. Such as her $300 keyboard she has to use for her long handwriting assignments. Thank you for responding though. I'm trying to learn all I can because I believe, and would like to believe, the more you know the less surprises there can be. But as we know, sometimes life is nothing BUT a surprise. It was recommended I get her an attorney, which I did finally get her this past November and he is confident she will win, who knows really. If it happens, it happens. If not, that's ok too. (One of our biggest problems to watch out for her is a blood clot disorder that runs in my husband's family. The women get hit particularly hard by it and we won't know if she'll get it until she's in her teens. That's another reason we see the geneticist. He did a DNA test on one of the 5 blood clot disorders and she doesn't have that one, but there are 4 that they can't DNA test for yet, and those are the ones that hit the women. The neurologists biggest concern is with the clot disorder and the side effect of some seizure medicine being bruising, we have to notify him of any unusual bruises so he can run blood work to see if she's clotting.) Thank you again for taking the time Barb. I hope to get to know you better in the future. Patty Patty: I am so sorry to hear about your daughter's problems. I don't know if this will help - but my son - aged 7 - has just been diagnosed with Complex Partial Seizures. He was first diagnosed with ADHD - because of attention and focusing problems, some emotionaly immaturity, and learning disabilities. We tried 3 different types of ADHD medications - but nothing worked. We then had some teacher reports that showed some spacing out in class etc, and because of those the neurologist we had been seeing ran an EEG - which showed seizures to the right side of the brain. We then ran an MRI - which showed no obvious cause of the seizures. We had noticed some staring spells ourselves, but nothing too remarkable - but these are the seizures - what they used to call petit mall seizures throughout the day. My son is also on Tegretol - 350mg twice a day, but no other medications - we are not noticing much change yet - but it is still early and we understand it may take a few weeks. We also have some friends whose child had complex partial seizures - but the EEG was unremarkable - they then had to do some further testing to pick them up. As I said - I am not sure if this will help. We don't have any bladder problems, but we do have the staring and that is our story regarding this. The best of luck to you. > Hi, my name is Patty. I have a 9 year old daughter who has a mass of > medical problems. To start with she was born dead, and died three [quoted text clipped - 74 lines] > behavioral problems. Thank you for reading my post. > Patty >Patty: > [quoted text clipped - 18 lines] >have any bladder problems, but we do have the staring and that is our >story regarding this. The best of luck to you. Thank you. Sounds like your son has similar problems my daughter has. It took us awhile to find the right ADHD medicin combo to work with our daughter as well. With my daughter, it took about 2 months to find the right tegretol dosage. They started off at 100 mg. then continued to do biweekly blood work and increasing the medication dosage until she was at the right one. Thank you for caring. I can imagine this can be quite a bit to deal with, I know it is for us now and then. May I ask what sort of immaturity problems do you face with your son? With my daughter, it's things like tearing pages of a book, writing in her books, writing on the wall in pen, etc... Also sometimes she has some social inadequecies and doesn't understand people making fun of her and things of that nature. Thankfully this isn't a full time problem with her and with the being made fun of, she considers everyone to be her friend so she gets over that pretty quickly. Patty |
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