Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 HI! I know Mehra's MRI must be disheartening to your family. I'm sorry for the news. I can tell you that our daughter was a different child (so much better in every way) once we got off the drugs and had seizure control thanks to the diet. I hope you'll see even more improvements as you progress. Best wishes, Glenna > Our daughter Mehra had her first seizure when she was 10 weeks old. > She was diagnosed with complex partial seizures and her first MRI > showed a slight abnormality on the right side of her brain. > However, an infants brain develops rapidly in the first 2 years and > since, we had another MRI in February (13 months of age) and it now > showed that her entire right side of her brain is abnormal. She has > been on the Ketogenic diet since August 03 and still is taking > Phenobarb and Trileptal and as of January also Klonopin. When we > first started the diet she was seizure free within 5 days for about > 10 days, but since she has had ups and downs. She now will have > them in series, if she has 1 she will usually have a bunch of real > short ones back to back. Her seizures only last 30 seconds at the > longest and when she has them in series the others last only about > 5 - 10 seconds each. > > Mehra's left side is very weak too, which makes sense since the > right side of the brain controls left side of the body. She doesn't > want to hold anything with her left hand at all. Since we started > the diet she has improved on range of motion with her left > hand/arm. Before the diet it was clenched very tight, since on the > diet it is now loose and she can raise her left arm towards her > shoulder. She is now 15 months of age and doesn\ not crawl. she > will roll from tummy to back but not back to tummy. She dislikes > tummy time so its hard for her to gain the weight bearing skills she > needs to eventually roll better and crawl. > > She doesn't smile or laugh much which we think is realted to all the > drugs. But we noticed right away since starting the diet she is > awake and sleeps the alloted time for a baby her age. Before the > diet she would just sleep all day and was totally unaware of her > environment and who her parents were. > > Has anyone else experienced a similiar MRI reading or diagnosis > etc?? And if your child is off meds how has your childs personality > changed? Searching for answers????? > > Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Our daughter, Shan, age 9, has some similarities as Mehra. Her seizures come from somewhere in her rt. frontal lobe (hasn't been found). If uncontrolled they eventually cause her left side to be nearly paralysed. She has left sided weakness but it is not noticeable by non family members. For the first 5-6 years of her life the seizures were completely controlled by tegretol. Then it spun out of control. Prior to her starting the diet she had been on Tegretol, Topamax, and Klonipin. We weaned her off the Klonipin (small dose) during the first month of the diet. Then, we started on the Topamax. At one point during the weaning of Topamax it became apparent that she was experiencing possible tegretol toxicity. We quit weaning the Topamax, weaned some of the Tegretol, and then went back to the Topamax. The awake seizures left after 3 months on the diet and all of the Topamax was gone and most of the Tegretol. The sleep seizures remained. Today, Shan is on a very small dose of Trileptal 225mg (switched over from the Tegretol due to less side effects) which she takes at night only for sleep seizures. We tried to wean her completely off the tegretol but the sleep seizures came back with a vengence. We then switched her over to the trileptal and over a year later Shan is doing fairly well. She can go months or weeks without a visible sleep seizure. At other times they are more frequent but usually due to something triggering them. We eliminate the trigger and she does better. Shan's first 17months of life seem similar to your daughter. Her history is not known prior to 14 months (adopted from China). She came to us with poor muscle tone, left weak side, doing a commando crawl only, strong right side preference (ignored left side). She was on Tegretol only. She would take a long nap, but she had a very happy personality. Once the seizures were controlled she took off on development. I'm sure that the multiple meds have taken away Mehra's personality and drive to explore. I would get rid of the Klonipin as soon as possible because it is only good as a quick fix med for a very short time. I would also work on the Phenobarb and leave the Trileptal for last. I would bet that the Phenobarb is the main culprit for no personality. Was Trileptal the first med that was tried on Mehra and then the others were later added? I hope this helps some. By the way, Shan still has a right side preference but she walks fine and uses her left arm/hand. Rhonda (mom to Shan, age 9, ketokid for over 2 years) MRI Results Our daughter Mehra had her first seizure when she was 10 weeks old. She was diagnosed with complex partial seizures and her first MRI showed a slight abnormality on the right side of her brain. However, an infants brain develops rapidly in the first 2 years and since, we had another MRI in February (13 months of age) and it now showed that her entire right side of her brain is abnormal. She has been on the Ketogenic diet since August 03 and still is taking Phenobarb and Trileptal and as of January also Klonopin. When we first started the diet she was seizure free within 5 days for about 10 days, but since she has had ups and downs. She now will have them in series, if she has 1 she will usually have a bunch of real short ones back to back. Her seizures only last 30 seconds at the longest and when she has them in series the others last only about 5 - 10 seconds each. Mehra's left side is very weak too, which makes sense since the right side of the brain controls left side of the body. She doesn't want to hold anything with her left hand at all. Since we started the diet she has improved on range of motion with her left hand/arm. Before the diet it was clenched very tight, since on the diet it is now loose and she can raise her left arm towards her shoulder. She is now 15 months of age and doesn\ not crawl. she will roll from tummy to back but not back to tummy. She dislikes tummy time so its hard for her to gain the weight bearing skills she needs to eventually roll better and crawl. She doesn't smile or laugh much which we think is realted to all the drugs. But we noticed right away since starting the diet she is awake and sleeps the alloted time for a baby her age. Before the diet she would just sleep all day and was totally unaware of her environment and who her parents were. Has anyone else experienced a similiar MRI reading or diagnosis etc?? And if your child is off meds how has your childs personality changed? Searching for answers????? Thanks! " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2004 Report Share Posted April 14, 2004 Our daughter, Shan, age 9, has some similarities as Mehra. Her seizures come from somewhere in her rt. frontal lobe (hasn't been found). If uncontrolled they eventually cause her left side to be nearly paralysed. She has left sided weakness but it is not noticeable by non family members. For the first 5-6 years of her life the seizures were completely controlled by tegretol. Then it spun out of control. Prior to her starting the diet she had been on Tegretol, Topamax, and Klonipin. We weaned her off the Klonipin (small dose) during the first month of the diet. Then, we started on the Topamax. At one point during the weaning of Topamax it became apparent that she was experiencing possible tegretol toxicity. We quit weaning the Topamax, weaned some of the Tegretol, and then went back to the Topamax. The awake seizures left after 3 months on the diet and all of the Topamax was gone and most of the Tegretol. The sleep seizures remained. Today, Shan is on a very small dose of Trileptal 225mg (switched over from the Tegretol due to less side effects) which she takes at night only for sleep seizures. We tried to wean her completely off the tegretol but the sleep seizures came back with a vengence. We then switched her over to the trileptal and over a year later Shan is doing fairly well. She can go months or weeks without a visible sleep seizure. At other times they are more frequent but usually due to something triggering them. We eliminate the trigger and she does better. Shan's first 17months of life seem similar to your daughter. Her history is not known prior to 14 months (adopted from China). She came to us with poor muscle tone, left weak side, doing a commando crawl only, strong right side preference (ignored left side). She was on Tegretol only. She would take a long nap, but she had a very happy personality. Once the seizures were controlled she took off on development. I'm sure that the multiple meds have taken away Mehra's personality and drive to explore. I would get rid of the Klonipin as soon as possible because it is only good as a quick fix med for a very short time. I would also work on the Phenobarb and leave the Trileptal for last. I would bet that the Phenobarb is the main culprit for no personality. Was Trileptal the first med that was tried on Mehra and then the others were later added? I hope this helps some. By the way, Shan still has a right side preference but she walks fine and uses her left arm/hand. Rhonda (mom to Shan, age 9, ketokid for over 2 years) MRI Results Our daughter Mehra had her first seizure when she was 10 weeks old. She was diagnosed with complex partial seizures and her first MRI showed a slight abnormality on the right side of her brain. However, an infants brain develops rapidly in the first 2 years and since, we had another MRI in February (13 months of age) and it now showed that her entire right side of her brain is abnormal. She has been on the Ketogenic diet since August 03 and still is taking Phenobarb and Trileptal and as of January also Klonopin. When we first started the diet she was seizure free within 5 days for about 10 days, but since she has had ups and downs. She now will have them in series, if she has 1 she will usually have a bunch of real short ones back to back. Her seizures only last 30 seconds at the longest and when she has them in series the others last only about 5 - 10 seconds each. Mehra's left side is very weak too, which makes sense since the right side of the brain controls left side of the body. She doesn't want to hold anything with her left hand at all. Since we started the diet she has improved on range of motion with her left hand/arm. Before the diet it was clenched very tight, since on the diet it is now loose and she can raise her left arm towards her shoulder. She is now 15 months of age and doesn\ not crawl. she will roll from tummy to back but not back to tummy. She dislikes tummy time so its hard for her to gain the weight bearing skills she needs to eventually roll better and crawl. She doesn't smile or laugh much which we think is realted to all the drugs. But we noticed right away since starting the diet she is awake and sleeps the alloted time for a baby her age. Before the diet she would just sleep all day and was totally unaware of her environment and who her parents were. Has anyone else experienced a similiar MRI reading or diagnosis etc?? And if your child is off meds how has your childs personality changed? Searching for answers????? Thanks! " The Ketogenic Diet....a realistic treatment option, NOT just a last resort! " List is for parent to parent support only. It is important to get medical advice from a professional keto team! Subscribe: ketogenic-subscribe Unsubscribe: ketogenic-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2004 Report Share Posted December 1, 2004 Hi Angel, I thought that the length of the uterus was approx. 8 cm...so 14 cm sounds awful long. Maybe the septum is 14 mm instead? Something doesn't sound right. You can ask for a copy of the report that goes with your MRI results. It should state the findings in the report. Ask your dr for a copy - they have to provide you with one if you ask and usually the copy is free, although some drs ask for a fee. Also, I agree that you should insist that your dr bill your resection procedure as a birth defect (which an MA is) and not infertility. The birth defect is the CAUSE of this anomaly, infertility is not a correct diagnosis. Some members have had to push hard to make their insurance companies pay for the resection, but if your dr codes it correctly as a birth defect, it should be covered w/out prob. Good luck, Sara SU resected x2 Quote Link to comment Share on other sites More sharing options...
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