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Topic: EEG

03-15-2006 08:46 PM

LarkinsMom   Senior Member Location: Champaign, Illinois Registered: Nov 2005 Posts: 161 Last visit: 03-24-2006

Tomorrow at 9:30 we will do a follow up EEG on Larkin. She is still having seizures but not quite as bad as they were. Last evening was not great. I think her head hurts and that she is having seizures all the time even if she doesn't present symptoms. The doc keeps telling me that it is not hypsorythmic but I am still worried about infantile spasms. We will know more tomorrow and in the meantime I am going to bed with the same old stomach ache. __________________ Amy Mom to Chase 8/29/95 & Larkin 10/4/05 (DS)

03-15-2006 08:53 PM
Stephanie   Super Member Location: Yardley, PA Registered: Feb 2004 Posts: 2612 Last visit: 03-23-2006	I will keep Larkin in my prayers. I hope all goes well. I do hope Larkin is not in any pain. This just breaks my heart thinking that she is going through all of this. __________________ Proud Parents Stephanie and Joe Awesome Big Brother Joey 3/8/97 Beautiful Daughter Megan 11/8/03 Precious Lil' Livi 7/6/05

03-15-2006 08:58 PM
lilpayton   Senior Member Location: Bristow, Virginia Registered: Jan 2006 Posts: 216 Last visit: 03-24-2006	Good luck tomorrow! Larkin and your family have been in my prayers! __________________ Bethany Mommy to Mason (1/13/04) and Payton (DS) (1/7/06) http://www.caringbridge.org/visit/paytonbalsis

03-15-2006 10:23 PM
hayden's mom   Senior Member Location: Round Rock, Texas Registered: Sep 2005 Posts: 582 Last visit: 03-24-2006	I hope everything goes well tomorrow. I will keep Larkin and your family in my prayers. __________________ Mommy to: Holden 6 Hayden 2 (ds) Jacie 1 And the Angels Danced the day you were born

03-15-2006 10:23 PM
Mary Beth   Super Member Location: Cleves, Ohio (Cincinnati) Registered: May 2005 Posts: 2961 Last visit: 03-24-2006	Oh Amy I do hope they find out soon what is causing all the seizures and that they are able to stop them. Try to get some sleep, I'm sure you need it. I'll be praying for Larkin. Mary Beth

03-15-2006 10:31 PM
mary c   Senior Member Location: Westchester County, New York Registered: Jan 2005 Posts: 689 Last visit: 03-24-2006	I'll be praying for sweet Larkin and for you. Please update us when you get a chance. __________________ Mary Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

03-16-2006 08:38 AM
Carson's Mom   Senior Member Location: Bossier City, LA Registered: Dec 2005 Posts: 220 Last visit: 03-24-2006	You are in my prayers. Please let us know what you find out. Hopefully it will be good news.

03-16-2006 01:54 PM
raeanncollins   Senior Member Location: Illinois Registered: Mar 2005 Posts: 274 Last visit: 03-24-2006	Big ((((Hugs)))) rae __________________ RaeAnn~ mom to Andrew the Destroyer(11.24.01) and Chromosomally Enhanced Boy Sam (12.11.02) ~slow and steady wins the race!

03-16-2006 02:00 PM	" target="_blank">
Abigail'sMom   Super Member Location: Dublin, Ohio Registered: Apr 2005 Posts: 1730 Last visit: 03-24-2006	Prayers, love, hugs and thoughts for you and Larkin! __________________ Eli Mom to Abby (DS 10/21/03), James Thomas (01/31/06)

03-16-2006 02:16 PM
Angelbaby   Senior Member Location: Delaware Registered: Apr 2005 Posts: 352 Last visit: 03-24-2006	PRayers for you and Larkin! __________________ Kristy Wife to John Mommy to Emily Ann 8/20/03 and Zachary John 05/23/05

03-16-2006 02:17 PM

LarkinsMom   Senior Member Location: Champaign, Illinois Registered: Nov 2005 Posts: 161 Last visit: 03-24-2006

We are home and Larkin is sleeping. I am ANXIOUSLY waiting for her neurologist to call with the results. It looked to me as if she was seizuring the entire time. Then again I am not a Neurologist and I did not stay at a Holiday Inn Express last night. The tech said that babies EEG's are not orderly. I was watching the screen and that made me worse. Will post when I know something more. Thanks for all the prayers and good vibes. __________________ Amy Mom to Chase 8/29/95 & Larkin 10/4/05 (DS)

03-16-2006 02:50 PM
alexmom   Senior Member Location: Hilliard, OH Registered: May 2004 Posts: 617 Last visit: 03-22-2006	Glad you are home and hope that results come soon. Sending prayers your way. __________________ Jennifer - Alex's Mommy (3/24/04)

03-16-2006 09:25 PM
kellyrimmer   Senior Member Location: Atwood, TN Registered: Feb 2006 Posts: 184 Last visit: 03-23-2006	Larkin is in my thoughts and prayers. Kelly

03-16-2006 10:26 PM

fixedyang   Senior Member Location: Orlando, FL Registered: Dec 2005 Posts: 166 Last visit: 03-24-2006

You are all in my thoughts and prayers. update us when you can. __________________ Sherri & Chad married 12/16/00 Mom to Cooper (14), Hunter (12), Ethan (2), and our sweet baby girl Sadie born 10/3/05 (DS) "Listen to the MUSTN'TS, child Listen to the DON'TS Listen to the SHOULDN'TS the IMPOSSIBLES the WON'TS. LISTEN TO THE never haves Then listen close to me- ANYTHING can happen, child, ANYTHING can be" Shel Silverstein

03-18-2006 09:17 AM

LarkinsMom   Senior Member Location: Champaign, Illinois Registered: Nov 2005 Posts: 161 Last visit: 03-24-2006

Sorry I have not posted. I am drained and busy. The EEG showed the same seizure activity as last week with a tiny bit of normal pattern. But as I woke her up at the end of the test the pattern started to normalize. Doc said that would not happen if it were IS. I was to leave for Florida this morning but yesterday they drew her blood to check the phenobarbitol levels and the rash I had noticed on her arms had not gone away. I popped into Ped's on a whim and asked if a nurse would take a quick look and make sure it was not a reaction. Her doc just happened to be there AND her neurologist just happened to be there. No patients, it was the noon hour and quiet. It was meant to be I suppose. Anyway the rash was a reaction to the phenobarbitol and it's common so he stopped that med and begain her on one called Kappa. Because she has Pheno in her system Kappa will not cause a problem with crossing. Maybe this one will do the trick and stop the seizures. Her Neurologist is still sending both her EEG's to Wash U at Barnes in St. Louis for them to check it as well. So she is covered with a rash but is still happy off and on. She seizured this morning when she woke up so I don't yet see help with that. Another EEG to come soon and I canceled Florida for Larkin and I just in case the drug caused another reaction. Chase left this morning with my girlfriend and her son so his vacation isn't ruined. __________________ Amy Mom to Chase 8/29/95 & Larkin 10/4/05 (DS)

03-18-2006 07:36 PM

LarkinsMom   Senior Member Location: Champaign, Illinois Registered: Nov 2005 Posts: 161 Last visit: 03-24-2006

I have decided to stop supplementing Larkin with the Alimentum formula. The seizures started the same time we began formula. Not sure if it will help but I am going to go a few days and see what happens. She threw up all other kinds of formula until we tried the Alimentum. Anyone else have issues with our kids and formula? I am going back to all breast milk for a bit. __________________ Amy Mom to Chase 8/29/95 & Larkin 10/4/05 (DS)

03-18-2006 11:26 PM
bonniepd   Senior Member Location: Minneapolis area Registered: Jan 2006 Posts: 140 Last visit: 03-24-2006	I don't have any advise but all my thoughts have been with you and Larkin. I have read your posts and I hope the seizure activity slows down soon. Seizures are so hard on any one. Sending lost of hugs and prayers! __________________ Alexander (8/7/99), Andrew (9/26/02), Anthony (12/29/05 DS)

03-18-2006 11:36 PM
ElijahsMom   Senior Member Location: Waverly, Ohio Registered: Nov 2005 Posts: 135 Last visit: 03-23-2006	I sure hope that everything is going ok. She is so young to be going through all of this. You guys are definately in my prayers! __________________ Elisha: Mommy to Elijah 2/1/06 [IMG]

03-19-2006 12:33 AM

Annieo   Super Member Location: Minneapolis suburb, MN Registered: Jan 2003 Posts: 1194 Last visit: 03-24-2006

(I sent you a PM with this same info but something seems to be wrong with my PMs so I'm posting the same info here.) My sister's son has bad reflux and has been on Zantac for about a year. He's started having small seizures and my sister found out that can be a very rare side effect of Zantac. I wouldn't have thought of this in Larkin's case except that you said she was throwing up formula. Is she on Zantac? Just a thought. __________________ Ann Mom to Sally, Mark, Jane, John (12/02, DS), and Paul

03-19-2006 04:11 AM

Tigger   Senior Member Location: NSW, Australia Registered: Jan 2006 Posts: 113 Last visit: 03-24-2006

Talitha throws up all formula, and not just a gentle barf, she vomits and vomits and vomits and her little tummy spasms and she screams. She is fine with breastmilk but I can't seem to make enough for her as she is tube fed and I have to express (she can't suck at all). As much as possible I give her breastmilk or a combination, never only formula. That way at least she keeps something down. Breastmilk is so much better for them if you can do it. Also Talitha was on Zantac but is now on Losec because her tummy was still bleeding on the Zantac. No seizures though. __________________

03-19-2006 02:06 PM

LarkinsMom   Senior Member Location: Champaign, Illinois Registered: Nov 2005 Posts: 161 Last visit: 03-24-2006

Well it is weird. She does not take Zantac. The only med's she take regularly is her synthroid. I only supplement about 10oz of formula so it's not a lot. BUT it all started then. Who is to say though..the doc's say it's not that but my MIL and I were talking yesterday and she said that for my own sanity and to rule everything out to just use breast milk. I have a lot frozen so if I need extra I am dipping into that now. I am just pumping more and more and she will be fine. She had quite a few seizures this morning when she woke up and Andy said she had a couple of tiny ones when he had her upstairs. Other then that it's been quiet today. Hopefully this Keppra will kick in and stop the seizures. Her rash is still there but the pheno will be in her system for at least 3 more days. She now gets up at midnight and 4 or 5 to eat. I wonder if it is making her hungrier then normal. __________________ Amy Mom to Chase 8/29/95 & Larkin 10/4/05 (DS)

03-19-2006 04:00 PM

kathy   Senior Member Location: Registered: Mar 2005 Posts: 195 Last visit: 03-22-2006

Amy, Sam's seizures started at the same time that I was weaning him from breastfeeding and starting him on formula. He was also starting to teethe (a big seizure trigger for Sam) so who knows what (if anything) was a trigger. I have brought this up on the Yahoo IS group and nobody else mentioned that they had a similar experience when starting formula. I'm sure that the formula has nothing to do with it but I will always wonder about it and if I was you, I would stick with breast milk. Even if just for peace of mind. There is probably nothing to it but like I said, I will always, always wonder. Keppra has been a great drug for a lot of kids. Sam didn't tolerate it well (irritable) but my neurologist was so surprised because it tends to have very few side effects. I hope it works wonders for Larkin. Keep us updated. __________________ Kathy mom to Allison (6/12/01) and Samuel (DS, 5/10/04)

03-19-2006 04:09 PM
kathleen   Senior Member Location: Chico, CA Registered: Dec 2005 Posts: 317 Last visit: 03-22-2006	Good luck tomorrow! Let us know how everything goes. We will be thinking about Larkin! __________________ __________________ Kathleen - Avery's Mommy Chico, CA

03-19-2006 04:42 PM

LarkinsMom   Senior Member Location: Champaign, Illinois Registered: Nov 2005 Posts: 161 Last visit: 03-24-2006

quote: Originally posted by kathy Amy, Sam's seizures started at the same time that I was weaning him from breastfeeding and starting him on formula. He was also starting to teethe (a big seizure trigger for Sam) so who knows what (if anything) was a trigger. I have brought this up on the Yahoo IS group and nobody else mentioned that they had a similar experience when starting formula. I'm sure that the formula has nothing to do with it but I will always wonder about it and if I was you, I would stick with breast milk. Even if just for peace of mind. There is probably nothing to it but like I said, I will always, always wonder. Kathy, Now that you mention teething, they brought it up to me. She chews on both hands nonstop so they think the teeth are moving down. Perhaps that is also adding to it? I am anxious to see if no formula helps. She has had teeny tiny spasms today. No eye movement just a jerk of the hands like a tiny shock went thru her. Her eyes get really wide right after. Not very long either. I'm tired. __________________ Amy Mom to Chase 8/29/95 & Larkin 10/4/05 (DS)

03-23-2006 10:16 PM
mary c   Senior Member Location: Westchester County, New York Registered: Jan 2005 Posts: 689 Last visit: 03-24-2006	Amy, I was just wondering how Larkin is doing. I've been thinking about her and hope you have some answers soon. __________________ Mary Mom to Libby 6/92, Alex 9/93, Anna (DS)12/12/03

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