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Hi all,
I'm new to this site and this is my first post. I'm just looking to tell my story. Maybe someone's child is experiencing a similar situation and might be able to offer some insight. Here goes... My nine month old son was recently diagnosed with complex partial seizures. The stint began on Aug. 17. THe day started out normal except our son was acting extremely lethargic (falling asleep on the floor playing) We chalked it up to a virus. Later that day, when my husband and I had our son on our laps playing...suddenly our son, Sean, turned his head sharply to the right and simply "checked out". His eyes were open and his Nystagmus (he has congenital Nystagmus and was diagnosed at four months) was going crazy to the right. I even held him by his chin to look at me and he would not "snap out of it"(lasted about 30 sec's). I put in a call to his pedi. and the nurse said it sounded like a seizure and to get to the ER. You guessed it. Sean seized a couple other times there, but never in front of the doctor! We were sent home, told he was having "absence spells" which may or may not be seizure related! I knew we'd be back. An hour and a half later we were. This time one lasted 2 min's. at home. We were just about to call an ambulance when he finished the seizure. We headed to the ER (right around the corner from our house). Sean was admitted that night. He suffered through at least twenty seizures over the 24 hour prd ( one lasted twelve min's.!)before administering the Diastat and starting him on Keppra (they wanted to do the EEG before starting treatment! Apparently they couldn't get up to the pedi unit sooner(eye roll!!!!) Results showed the left side of his brain operating slower than the right. So, Sean is now on 200 mg's a day of Keppra. He seems to be tolerating it well. His nuerologist said that if he can be seizure free for 2 yrs. on Keppra, we can start weaning him off and hope for the best.
So, where we are now is that Sean is behind in some development. He is not sitting, only rolls occasionally, hasn't yet mastered the pincer grasp etc. However, he is a very happy, easy going baby and always has been. He's responsive to interaction, babbles and has been standing with support since he was four weeks old. We have an evaluation coming up within the next month for Early Integration Services to see where he is behind and if he is eligible for services. Parent to parent, I am in freak out mode. My anxiety is at a debilitating high some days. Does he have a developmental delay or is he just a little behind because of the seizure disorder? I really need to find a support group in my area!
Any insight/help/support is greatly appreciated!
Laura
Recent Comments on this Discussion
Hi,
I'm sorry I started to add a comment to your post on Sunday but got sidetracked. I have 6 kids. My oldest is very disabled and actually fell due to a seizure and has a pretty substantial mouth trauma on Sunday. Off to the ER. Then yesterday a trip to the oral surgeon. Let's just say she isn't a fan of dentist chairs!! Scary thing is that recently, as in this past year, she's had 3 pretty serious injuries due to seizures. Even with many attempted combos of meds, we're still getting seizures. So I, too, am running on super freak mom mode.
My daughter, like your son, has congenital nystagmus among other congenital brain abnormalities. I do think it is an excellent idea to have your son evaluated. If he does have a significant enough delay, you can get services started early. Most of the time PT, OT, speech, hearing, vision specialists will come to your home. When you get these services through, essentially, the school system it is also free to you. Since your son has a nystagmus, he'll likely qualify for vision therapy. I can't say whether the seizures are causing his delays, as my daughter's didn't start until she was 13, but with the nystagmus, he almost certainly has some vision issues. That alone could cause poor eye hand coordination or pincer grasp problems. I have 6 kids and know that mine didn't start sitting unassisted until 8-9mos. Lindsay was well over a year. Aside from Lindsay, the others were rolling over around 5-7mos and on the knees rocking between 8-10months.
I'm just wondering and not trying to get you more concerned, but have you had any tests done like MRI or ERG (electro retina Graph--I think that's the accronym for that)? Nystagmus, is sometimes indictative of other brain abnormalities.
I know it is really tough seeing your boy go through all of this. I wish the best for you and your husband and son.
Yes it is certainly very difficult to wait on test results. You can just about make yourself nuts wondering about the what ifs....
so my daughter..... I adopted her from my youngest sister at birth. She is now 21. When she was 2-3mos old, I noticed her crossing her eyes. I thought it was normal part of the muscles teaching themselves how to focus. Her ped said no and sent us on to an opthamologist. Who checked her out and sent us to a real expert optha. Anyway at 4mos she went on in to the second doc. He found that she has optic atrophy in both eyes--her right worse than her left, hypoplasia, crossed eyes, nystagmus. Frankly the nystagmus is much more noticeable later on because eventually her eyes self-corrected the crossed eyes. Weird- huh? Optic atrophy bascially means undersized nerves. The hypoplasia means the nerves are pale . Her pupils are almost always very dialated unless we are in very bright sun. This leaves her "legally blind". Which is odd because no one would ever look at her and think so. She has depth perception probs, when she wants to see something clearly, she brings it to maybe 2 inches in front of her nose. I think she can stop her eyes from shaking when looking closely. Basically she uses what little vision she has very well.
Well if you have optic atrophy, could also have other issues with the eye. Hence the ERG. Basically it shows if the retina reaches back to the eye center of the brain. It measures if the brain receives input. In my daughter's case, yes. Then off for the CT scan. It showed a unilateral schizencephaly. It's a very rare condition of clefts in the brain. Basically she has gaps in her brain. Where brain should be, she has just fluid. The abnormality is often on both sides, hers is just on the right. There are many variations of the clefts. With each person, you have a range of mildly--to severely impaired. Often children start seizures in infancy. My daughter was odd here---she is severly impaired--autistic, spastic muscles on the left and a bit on the right, legally blind, non verbal---but she didn't get seizures until 13 and didn't start endocrine problems until somewhat recently. We're not even sure how involved her endocrine system is. Looking for an endocrinologist right now. About 2yrs ago we finally had an MRI to get a REALLY good pic of her brain. 21yrs ago the CTscan was deemed sufficient for dx. Honestly the MRI just gave a more detailed view of the schizencephaly.
I just looked back on my kids' baby books. #2, #5 were sitting well at 7 1/2months. #3 --8 1/2months, #4 8 1/2month and #6 well must've been too busy to write it down. But I think she was in that range. My #4 has a bit of lower muscle tone, so she was behind on all the gross motor. She also has some kind of language processing issue too. My fourth child qualified for special preschool because of language and PT/OT for her lower muscle tone. #6 had speech articulation probs which we nipped in the bud with speech when she was 3. She scored high verbally we just couldn't understand her!! haha The rest of the little buggers are doing very well. #6 just started kindergarten.
Remember children develop on their own timetables. Plus the ranges for milestones are fairly wide---like walking 10-18mos is in the "normal" ranges. Somewhere around there. My number 6 was 14mos before she walked BUT her fine motor skills were waaaaaay ahead. #2 was probably 2 3/4yr old before he could talk in sentences, BUT he qualified for gifted/talented in elementary school. #5 was singing twinkle twinkle well and understandbly at 19mos, yet she's my biggest clutz. Probably because she looks anywhere but forward when walking/running.
I'm thrilled that your son's scans came back normal. Definitely a PHEW!!! Now nail biting for the bloodwork. Hopefully all will be fine.
Good luck
Hi sixpack,
Thank you for sharing your story. To answer your question; yes, Sean had an EEG, MRI and CAT scan while admitted. Of course, also had the bloodwork and urinalysis (initial results came back normal). All scans came back normal and show no brain abnormalities...phew!!! The EEG showed seizure activity in the left hemisphere of the brain. We are seeing his pedi for his nine month healthy visit Fri. and we will then get the results for his detailed bloodwork/urinalysis for strange microorganisms, metabolic screen etc, etc. Were yourdaughter's brain abnormalities diagnosed via MRI/ CAT Scan?
However, what is the ERG? In regargs to the congenital Nystagmus...the pedi. opthamologist did a thorough check of Sean's eyes (dilated them and checked muscles, retina etc.) and said all is developing fine with no signs of damage/ weaknesses and that since he was born with it, his brain compensates for the movement. (though his eyes are shaking, the object doesn;t when h'e looking at it). We do have a follow up in Oct. I'm interested to know your daughter's diagnosis or medical follow ups in regards to the Nystagmus since it seems I, so far, have gotten a different idea about the dianosis. I wonder if cases of congenital nystagmus can be different in nature. Either way, thank you again for responding. Until we have his eval., I will be a nervous wreck. Sometimes the not knowing is more difficult than the diagnosis, because once you have the diagnosis you can begin to move on and work with it.
On a side note, with your children and sitting on own, the 8-9 mo. range, did any of those kids have any developmental delays/ were their pedi's concerned?
My thought are with your family...god bless
Laura
Rachelle Putnam
Stillwater, MN
Hi Laura,
We are in a ver similar situation as you with our 3 1/2 year old. When he was eight months old he had his first seizure. After several others he was finally diagnosed with epilepsy. It was found that he has complex partial seizures that start in his left frontal lobe. He was started on Keppra and that did not work. We then tried Trileptol and that was a little effective but not completely controling the seizures. We moved to carbatrol about two years ago and he has been seizure free for about a year and a half. He does have some developmental delayes to this day. He is in PT and speech therapy on a weekley basis. He is very advanced in his cognitive skills, however still shows delays in the other areas. We since have had a daughter and she as well had seizures at four months of age. It is apparent that there is a genetic link between the two (we have no idea what, yet) however, our daughter has been seizure free for four months while being on tegratol and shows no signs of developmental delay. Both of our kids have been doing very well and trust me when I can say things do get better. Seizure control is very important, as well as staying on top of their development. If you have any questions, please feel free to ask. We have been through it all and are happy to answer any questions.
I should add that both our kids EEG'S have shown no abnormalities.
Brad and Rachelle.
hi there i have a daughter with epilepsey since 7 months old she was haveing funny turns then drop attacks we put it down to imunisations she is turning 21 now she has epilepsy fits all day shes been on medication all life try every medication out there nothing helpd then at 14 done brain surary worked 4 3 months the seizures started again then had second lot to see if helps but still didnt now im at my wits end nother more 4 her i now how everyone filling it been going on 4 21 years had attackes all day long regards debbie