DownSyn Forum

Gracies mom · Posted: April 04 2012, 2:49 AM Post subject: Seizures getting me down!

Graces seizures are back and are really getting me down. I hate to see her going through this! She's screams through them and gets so upset. I get so scared when she has them. Im terrified she will have a cardiac arrest or something? Is that stupid! I'm so terrified of losing her!
I've introduced yet more medication with horrible side effects. She's grumpy tired and miserable yet can't sleep as she's so restless. She is so little and has been through so much! Why does this have to happen to us ! They started as simple partial, now they're complex partial seizures ? I think but they seem to be getting worse. Are they likely to get worse? I just want them to go away!

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Cheryl mom to Hannah 10/11/94, Grace 30/11/10 ds, Stepmom to Ethen 30/06/00 and wife to John married Aug 06

Tigger · Posted: April 04 2012, 3:11 AM Post subject:

I don't have experience with seizures but my heart goes out to you as you and Grace deal with this. Sad

I do have experience with juggling meds and that can be a nightmare as it is so hard to find out what works best without putting our kids through various side effects.

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14

LinMac · Posted: April 04 2012, 11:01 AM Post subject:

Like Karyn I too have no experience of seizures so I can't answer your specific questions.
I do however understand how stressful it can be when things don't go how we expect them to go and how hard it can be sometimes
to have to reach inside ourselves and find the strength to keep going.
At times like these it helps to hold Robert close to my heart.
It gives me a sense that things will be ok....somehow, someway!

I pray the doctors can stablilze Grace's seisure activity with the new meds and you can get your inner peace back!

Love and cyber hugs to you!

_________________
Linda & John
mom to Hannah Kate (Age 14 ), Robert (Aged 8 - DS)

First day at school

Ragans Mama · Posted: April 04 2012, 12:32 PM Post subject:

I can't say it any better than Linmac.....
Cyber hugs...

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New Mommy - Ragan is my one and only.....
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SweetEthan · Posted: April 04 2012, 12:48 PM Post subject:

It is heartbreaking to see your child go through this and you feel so helpless. My heart goes out to you. My oldest, Owen who is 4 has had seizures since he was 3 months old due to a resection of a brain tumor. He also started having Infantile spasms when he was 7 months. He is doing great now but we went through a really tough period. Owen is now starting to wean down from some of the medications however is still on a low glycemic diet.

My best advice is to continue to contact your doctor when your child is having seizures. If you feel you are not being heard find a different neurologist. It is important for your childs health and development to get the seizures under control.

Good luck and hugs to you and your family! Take one day at a time, it will get better.

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Owen (5) (Resected brain tumor, shunted hydrocephalus and infantile spasms), Ethan (DS) (2)

http://www.caringbridge.org/visit/owenchristenson

logansmom · Posted: April 04 2012, 8:46 PM Post subject:

No experience with seizures, but just wanted to send you hugs and prayers. Hope they're under control soon!

Kim

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Wife of Marvin
Mom to Logan (3/6/03, Ds) and Carson (9/6/05)

Gracies mom · Posted: April 05 2012, 3:48 PM Post subject:

Thank you all so much for your kindness, Grace has had an awful few days on her new medication but she's been much happier today Smile

and not had any seizures! On the down side she has terrible constipation! Something new to us!
Hopefully things will continue to improve with her seizures as we go abroad in 4 weeks! Thanks again everyone x

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Cheryl mom to Hannah 10/11/94, Grace 30/11/10 ds, Stepmom to Ethen 30/06/00 and wife to John married Aug 06

beckysmum · Posted: April 06 2012, 1:21 PM Post subject:

Grace is so beautiful, my heart breaks for you, I really hope the siezures stop and she can get better Very Happy

((((hugs)))) x

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Claire & Chris , Mum and Dad to Bethany 05/03/1998 Calum 03/09/2004 Rebekah DS 13/01/2011

QuinnsMom · Posted: April 07 2012, 7:11 AM Post subject:

Seizures suck. There is nothing like watching your child go through them and be absolutely helpless to do anything. No wonder you panic, I did. Quinn had infantile spasms and they were horrible - and the meds and the side effects were bad too. But her neurologist always said that the DS would help her when it comes to effectiveness of tx for the seizures. Thankfully we had a great neurologist who helped guide us through this process. If she goes this year without relapse, she can come off her meds. We are on the other side now and just letting you know things can get better.

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Karyn, Quinn's Mom -
Mother of Riley (age eleven), Aidan (age seven) and Quinn (October, 2007 - DS, IS, Stereotypical Movement Disorder)
http://quinnscrusaders.blogspot.com/

burnsun · Posted: April 07 2012, 3:09 PM Post subject:

I saw this when traveling and had to wait to respond.....sorry!

Yep I hate Miranda's seizures! Daily they rob her (and me....if I can whine) of her beutiful presense for a little bit.....

Miranda has the scremaing ones.....and they are my least favorite of the types she has......the noise she makes is shrill and I always tell people she has them and they always ask how will I know if it is just not her being mad..... I say.... you'll know..... and boy do the agree after it happens......

I just have to say that you just keep trying new meds and looking for patterns...... I know Miranda has a pattern related to light and return of the "warm" weather. And they always come back in late Feb to late April really bad and then we sort of get it worked out..... I just watch and we try to not have triggers and keep on top of meds and I cry a lot...... and I cringe a lot everytime I see the phone ring M-F during school hours and it has their number cause I aam so worried........

hugs and I hope they find the perfect med combination for you little one!

We do great now...... but when it is over 90 and for those few months..... and chaning meds has not helped..... so we are back to what worked rest of year...... good luck!!!! and Hugs!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS & type 1 diabetes, ASD
Devon Richard(4/13/01) DS & Autism & Partial Complex, Seizures terology of Fallot
& Retinal detachment w partial blindness at this time
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03) ADD
Eliza Marisol (5/15/04) DS , ASD, pulmonary hypertension, ADHD, ODD, Autism Spectrum Disorder,
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy & Stero Typical Movement Disorder & AV Canal
Jordan Alexander(3/17/2007)ADHD
Emerson James (1/08/2009) 33 week preemie
Sarah Emmaline "Emma" Grace (2/15/2011) 35week little one with a variety of issues inc: cp & fragile x & Seizures & severe birth trauma & G-J tube, Severe reflux, and recurent pnumonia and tracheosomy and vent chugging princess since 8/24/2012!

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Tom · Posted: April 11 2012, 9:41 PM Post subject:

I can speak from personal experience with seizures. There are lots of different medications to try and even though one may have bad side effects another may not. The one I am on has no side effects and works very well. So don't give up and keep working with your doctor.

_________________
Tom

Dad to Beth ( 20 ) and Mikey (15 - Ds and PDD-NOS)
My Blog - Random Thinking
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