Hello,
Our little boy is 2,5 months. He started to have seizures when he was 2 days old. He has now anti - epileptica medication. Sometimes he shakes his hands shortly, i think he has seizures. How did you recognise this? Will it get worse, even with medication?
Hi,
Wilson started having seizures at about 5months. They started him on epilim which did reduce them slightly and toned down the intensity of them but could never completely control them. They then tried him on Topamax and while that did control them more, it made him very lifeless, almost like a zombie. We decided we would rather have him as awake as possible even at the risk of some small seizures.
Ray (Wilsons dad)
Hi there
Sofie started having seizures at 11 weeks old and it sounds similar to what your son is experiencing. Her hands and legs used to sort of tremble for about 20-30 seconds. She is on medication called Epilim and it seems to help. But she has started to have infantile spasms where she bends forward with her arms in the air all rigid. She probably has 2-3 seizures a day. I think from what I’ve read its hard to control seizures in SGS and they do get steadily worse. It seems like all these babes are different with how their seizures start/progress but thats been our experience so far.
Leith 
Hello,
Sorry for my late reply, my name is Kelly and we live in the North of England. Our beautiful daughter Isla is 7months old and shes was diagnosed with SGS on the 25th June (the worse day of my life).
When i first found out about this syndrome I was never off the computer trying to get as much information as possible, i contacted Albert Schinzel and other professors and geneticist world wide to get answers and for someone to tell me that she may have been miss diagnosed. Talking to other families really helps me as know body can understand what your going through. We have a close family which helps me alot as my husband works abroad, i packed in work to stay at home with Isla and like Ray said we get help from the goverment. To be honest the only help i need is emotional support from friends and family as Isla is a good baby and doesn’t need much aid. We have a nurse which visits everyweek, a physiotherapist and we take Isla to a development centre for babies with learning difficulties, do you have any support?
Isla was fed via nasal tube when she was first born but after 2weeks she started to take a bottle, we then found out that she had lost her hearing in her right ear but moderate loss in her left, she has a small hole in her heart which hasn’t got any bigger, she has kidney reflux and hydronephrosis, broad ribs, her forearm is fused together, we’ve had her eyes tested and were told that her sight is fine, she has infentile spasms and the only time she was in hospital was when she had a cold. Due to her flat nasal bridge it gets blocked and this stopped her from feeding. She has never had a kidney infection or chest infection which are really common with this syndrome.
Islas feeds are up and down, somedays she will eat like a horse and others she will only have really small amounts which really worries me but her weight is spot on for her age. We had to add thickner to her feeds as she was choking allot with her bottles, does Chieltje choke? Where do you live? Isla is our first baby too, we were told by our geneticist that it will be a1/4 chance of SGS happening again although we have now been told that they think it could be a mutation in either an egg or sperm like you said in your message earlier.
Isla loves her baths and we get lots of smiles off her when shes bathing…xxxx Her eyes tend to roll alot and she can’t focus for long but i know that she knows me and our family. She loves her cuddles and been rocked to sleep, if shes not tired then i’m up all night with her or she sleeps with us and she loves been cuddled,we don’t know how long we have with Isla but i was told that the average life expectancy is two years, this breaks my heart and i feel for you and your family. Isla is our special little girl and just looking at her little face makes me smile so i’m concentrating on taking each day as it comes and to cherish every moment… Please feel free to contact me any time.
Love Kelly x
To: kastagg@hotmail.co.uk> From: forum858-cpt10947@lists.careplace.com> Subject: [forum858] epileptic activity> Date: Sat, 8 Nov 2008 11:03:16 -0500> >
Hello Kelly,
I recognise what you said. It’s hard to have contact with chiel his eyes.
But sometimes it goes well! These moments are like heaven to me. These
moments are short and not every day.
He also liked to be cuddled.
I’m from Belgium. (so sorry for my bad englisch)
We will do Chiel to a special daycare for stimulating his development.
During the day when we go to our work. (Now I am still home untill january)
After my work he will be at home. Our goverment don’t give such pay so I
need to go to work. Maybe it will be good for me, go to work. And Chiel can
make a lot of friends with the other children who also have a handicap.
At the moment Chiel is in the hospital because of his belly. But maybe he
will be at home at the end of the week.
I don’t have any help of a nurse. But my family loves Chiel and they try to
help as possible.
Chiel also has his ear lost on the right ear. His eyes are not tested yet
but I’m sure he can see.
The first 4 weeks of his life he was feed by a tube. (nose) Since then, he
drinks from the bottle. But very slowly. Because of the danger of choking.
That does happen sometimes. But now I do it very slowy and don’t force him.
If he doesn’t want to drink a lot, I stop.
I don’t know if you may trust our genetic? I have my doubts. But i think
every parent will have this because you can’t see it in the blood. So there
will never be proove. Maybe in the future? I gave some blood of Chiel to a
big hospital in Belgium and they will test and look if they can learn from
it.
Best and a hug to Isla,
----- Original Message -----
From: “islanlola” forum858-cpt10947@lists.careplace.com
To: mathieu.cauwelier@telenet.be
Sent: Tuesday, November 11, 2008 10:17 PM
Subject: Re: [forum858] epileptic activity
Hi, Luke has absence seizures when he was 2 months old. They put him on Phenobarb and Topamax. The combination of both was very effective. At 4 to 5 months he started having infantile spasms (a rare seizure, but common with SGS). We put him on Vigabatrin. Vigabatrin has been very effective as well. Please note that we work closely with our Neurologist who has increase all his medications often, to adjust for Luke’s weight gain and also to stop the seizures. They’ve never stopped 100%, but have been very controlled and subdued. We are happy with these medications. Ironically, Luke is now having tonic seizures. We just check his medication levels and discovered that the Phenobarb is low, so we will either increase the dose or, since Luke is 15 months now (Phenobarb is used on babies less than a year old) move to a different medication that is more effective that Phenobarb since Luke’s 15 months. I will say, though, that when we increase his meds, he gets real sleepy for the first 2 or 3 days, then he adjusts to it.
Hannah had seizures from around four weeks old, which gradually worsened to around 50 to 100 seizures a day lasting from 20 seconds to 2 minutes. We tried all the meds mentioned here and more and nothing helped they kept getting worse. If we gave her diazepam to stop a seizure her breathing was compromised but she would continue to seize. Ultimatley this lead to chest infections that eventually turned to pneumonia.