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Help-9 month old having seizures
Mon, 02/14/2005 - 08:41Topic: Family & Friends
Hi! I am very new to all of this. Our9 month old has had 4 seizures in the last 6 weeks lasting 15-30min (he is our first and only.) Born 35wks but no major problems. He has been diagnoist with Reflux and had pyloric stynosis. We spent last weekend in the PICU... EEG, MRI, CT... everything is normal-no know cause or real diagnosis given. We are now on Dilantin and Tripetol. He has always been a horrible sleeper... should we worry if hs is have seizures while sleeping. We are being referred to a develpmental pediatrician. We are just so scared. Last Thursday I could't get the Diastat in him before the EMT's showed up. How long to we go before we get a second opion. It breaks are heart to see him so loopy! We see the neurologist on March 15. Please help.
Comments
RE: Help-9 month old having seizures
Submitted by sweetpea on Sat, 2005-02-12 - 11:57
I would say get a second opinion soon. If it was me I would be scared for him having seizures in his sleep. Did your baby get surgery for pyloric stynosis? My daughter had surgery when she was 5 wks. old. If your baby had surgery maybe it had something to do with the anatheisologist. I would sugest to see a specialist in sezuiers. Sometimes just regular doctors dont know all about this problem. Get the help he needs as soon as possible. You will be able to live with it just have to know what and how to deal with it. He is to young to tell you if there is anything to maybe warn you.
RE: Help-9 month old having seizures
Submitted by takrentz on Mon, 2005-02-14 - 08:41
Thank you for the advise and suggestions. One of the most frustrating issues facing us is they have not given us the 'exact' name for the types of seizures he is having. We do know that 2 of them have been grand mal. He turns red then blue and the seizures last a very long time-a lifetime to me! 15-30 minutes. They have ruled out febral seizures because he has not had a temp! The others have been short and small... lasting 1-2min. This weekend though he had another one... eyes fixed and one arm twitching. We do have the Diasat... but this is so new to all of us we haven't yet adjusted. His babysitter know longer feels comfortable watching him so I am on the hunt for a new daycare provider. My mom is great but can't do it forever. Our peds neurologist hasn't given us much instruction. I am going to call this morning. I just know he is seizing when he sleeps. He did have surgery at 10wks for the pyloric stynosis so I don't know if that means anything. I really appreciate the responses and know we will learn to deal with this. I just am not getting any anwsers from the doctor involved. This site is of a great sence of comfort and support. Thank you. Any other suggestions are greatly appreciated!
RE: Help-9 month old having seizures
Submitted by EvansMommy on Fri, 2005-02-11 - 23:47
What type of seizure is your child experiencing? I have a 15 month on who also has seizures, his type currently are partial complex seizures. We have to give him Diastat if he seizes for 7 minutes. My little boy has anywhere from 3-9 seizures a day. He is currently on Topamax, Tegretol, and ACTH (for infantile spasms, another type of seizure) He is also a terrible sleeper. He started having seizures in his sleep about 4 months ago. I bought a surveilence monitor at Toys R Us. and its wonderful, you should get one. Its a great peace of mind to have it. We talk weekly to our neurologist. They ask us to call them to keep them informed. Does your neurologist do that? If not, I would definatley get a second opinion. Its scary to worry, trust me, I know. Things will get better, as you learn to adapt to the seizures, although each one is always scary that you might have to give the Diastat. hang in there. keep me posted. Take Care
Evansmommy
What type of seizure is your child experiencing? I have a 15 month on who also has seizures, his type currently are partial complex seizures. We have to give him Diastat if he seizes for 7 minutes. My little boy has anywhere from 3-9 seizures a day. He is currently on Topamax, Tegretol, and ACTH (for infantile spasms, another type of seizure) He is also a terrible sleeper. He started having seizures in his sleep about 4 months ago. I bought a surveilence monitor at Toys R Us. and its wonderful, you should get one. Its a great peace of mind to have it. We talk weekly to our neurologist. They ask us to call them to keep them informed. Does your neurologist do that? If not, I would definatley get a second opinion. Its scary to worry, trust me, I know. Things will get better, as you learn to adapt to the seizures, although each one is always scary that you might have to give the Diastat. hang in there. keep me posted. Take Care
Evansmommy