Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 In a message dated 5/23/2004 9:41:45 AM Eastern Daylight Time, cindysue@... writes: Thanks to everyone who responded. Some of you mentioned ear plugs - that simply does not work for . We've had the specially made ones and the cheap drug store type. He's almost 11 and I think it's time we see what happens without a tube in his ear. He's been on antibiotics and while it looks like his ear infection has cleared up, his sinus infection is just as nasty. I need to get his singular refilled. His surgery is scheduled for June 9th. We've had a lot of experience with chronic sinus infections. is often asymptomatic and it's trickty to catch - it took a CAT scan one time to catch the fact that 2 sets of her simuses were totally blocked. We went on 90 days of antibiotics the clear it that time. He had another seizure yesterday. He always holds his arm (his aura or mini seizure) and screams out. He was yelling for me and I rushed over to him. He said he had to pee, so we started to go inside. He turned and walked back into the garage and had diarrhea. After a few minutes, he came into the house, screamed out again (and still holding his arm) and fell to the ground. This lasted just a few seconds and he did not experience any paralysis afterwards (which he sometimes does). I'm thinking the sinus infection could have triggered it - and the soaring heat. We keep losing power when a storm comes through and thankfully, the power company was here right after he had his seizure. This was our fourth weekend without power ;( I'm going to have his doctor fill out the medical form for the power company since heat is definately a problem for him and his behaviors prevent us from finding relief at the mall or some other public place. Has he had an EEG? had a single isolated seizure when she turned 10 (in retrospect it was probably triggered by the hormones of puberty - which is NOT unusual in the general non-DS population). The pediatrician we had had a lot of experience with DS kids. He sent us for an EEG (which came out negative). He also told us that while in the non-DS population the rule of thumb is to wait for the 3 episode to medicate, because DS kids are at risk they medicate after the 2nd episode. Meanwhile good luck with surgery! - Becky Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 In a message dated 5/23/2004 9:41:53 AM Eastern Daylight Time, cindysue@... writes: > Thanks to everyone who responded. Some of you mentioned ear plugs - that > simply does not work for . We've had the specially made ones and the > cheap drug store type. He's almost 11 and I think it's time we see what > happens without a tube in his ear. Poor . I'm sorry to hear the nasty nasal infection won't go away. About his ears, Liam's tubes fell out and we went the whole winter with only one ear/sinus episode. I know better than to say it's over. The visiting nurse who comes suggested I put a little cotton in his ears with vaseline on the outside before swimming. He'd probably hate that too, but since it's lighter than an ear plug, it might work for ? Kathy, Liam's mom( 6) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Hi, My son had a mastoidectomy and must keep all water out of his ear. His plugs do not work so we use the silicon ones. They are the best. I never have to worry about them. If for any reason he does get water in his ear we immediately put Tobridex in his ear (prescription) When he goes to camp we routinely put it in when he gets home. I have learned to do this because the helpers at camp are not always good with the silicon. We did put it in after camp one year and he got an infection. Works well for us. Jean Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 Thanks to everyone who responded. Some of you mentioned ear plugs - that simply does not work for . We've had the specially made ones and the cheap drug store type. He's almost 11 and I think it's time we see what happens without a tube in his ear. He's been on antibiotics and while it looks like his ear infection has cleared up, his sinus infection is just as nasty. I need to get his singular refilled. His surgery is scheduled for June 9th. He had another seizure yesterday. He always holds his arm (his aura or mini seizure) and screams out. He was yelling for me and I rushed over to him. He said he had to pee, so we started to go inside. He turned and walked back into the garage and had diarrhea. After a few minutes, he came into the house, screamed out again (and still holding his arm) and fell to the ground. This lasted just a few seconds and he did not experience any paralysis afterwards (which he sometimes does). I'm thinking the sinus infection could have triggered it - and the soaring heat. We keep losing power when a storm comes through and thankfully, the power company was here right after he had his seizure. This was our fourth weekend without power ;( I'm going to have his doctor fill out the medical form for the power company since heat is definately a problem for him and his behaviors prevent us from finding relief at the mall or some other public place. --- Outgoing mail is certified Virus Free. Checked by AVG anti-virus system (http://www.grisoft.com). Version: 6.0.688 / Virus Database: 449 - Release Date: 5/18/2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2004 Report Share Posted May 23, 2004 In a message dated 5/23/2004 9:15:23 AM Central Standard Time, cindysue@... writes: > starting having seizures when he was 7. His most recent EEG was > done in December. Ironically, he held his arm during the evaluation, but > nothing showed up on the reading. His nuero said it could be from a small > and deep part of his brain that the EEG would not pick up. He's been on > carbatrol for over three years and we added depakote for the behaviors (also > a seizure med). I think it's time to switch from carbatrol to something > else and up the depakote. > HI Oh I am so sorry ............ I've been watching Sara all day myself ........... it's hot and she's been testy and tired. She does great in the heat when home lol in an AC house and the pool for outside play. Today we ran errands all day getting ready for next weekend and this really pushed Sara. Heat and fatigue are a few of Sara's trigger factors for seizures. I guess we will see how her new med does this summer if it will stop any seizure activity (she's on Topamax now also approved FDA for weight loss ....... a plus for her) Sara's EEG's (and she's had many) only show slow patterns, the Dr said this is typical for a child who is MR. Her Neuro said her activity is deep in the brain, nothing but meds will work for her. You know when you said fell, this is one of the reasons why the Neuro switched meds for Sara (suspected seizure activity/Falling down). We were told Carbatrol only protects against certain seizures (there are 40 types geeeeesh) Sara's has few different types. Hugs to you girl, this is going to be a long hot summer .......... you know where I'll be lol Kathy mom to Sara 12 ................... 4 more days of school left ¸...¸ ___/ /\ \___ ¸...¸ ,·´º o`·, /__/ _/\_ \__\ ,·´º o`·, ```)¨(´´´ | | | | | | | | | ```)¨(´´´ ¸,.-·²°´ ¸,.-·~·~·-.,¸ `°²·-.¸ As for me and my house, we will serve the Lord. Josh. 24:15 Quote Link to comment Share on other sites More sharing options...
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