Infantile spasms/fits
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- Infantile spasms/fits
20/9/08 14:22
19/9/08 23:13
every baby is a blessing, you will be fine hun! no matter what life throws at you you have proved that you are a fighter and so was your little boy and so will this baby!
its another piece of joy to add to your life. wishing you all the best hun, things will be ok xxxxxx
19/9/08 23:11
Thanks ladies. i know we have made the right decision. It just feels right. XXX
19/9/08 23:06
i also said 'would have a termination' i mean i WOULDNT! spelling mistakes sorry folks! xx
19/9/08 23:04
i dont blame you at all for not wanting a CVS. We knew there was a risk that harvey could have tuberous sclerosis and was offered the CVS but like you we decided that as we would have a termination anyway that we wernt going to risk our unborn babies life, no matter how small, by having the test done! harvey was born with TSC and its hard work but i dont regret my choice at all as i would of kept him anyway and got on with it like i am now! i would of just spent the rest of my pregnancy worrying and i wanted to enjoy it!
im keeping my fingers crossed for you and im sure you will be fine! after all he has a big brother looking down on him who will make sure he is ok xxx
p.s i was saying he. i mean he/she! xxx
19/9/08 23:03
KAREN I WOULDNT HAVE ANY KIND OF TEST EITHER! I BELIEVE THAT IF U WANT A BABY THEN UR GIVEN WHAT UR GIVEN!!!! WE HAVE NO RIGHT TO PICK OR CHOOSE. WE'RE GIVEN THAT CHILD 2 LOVE & TAKE CARE OF AS LONG AS GOD ALLOWS.... SPECIAL BABIES R ONLY SENT 2 SPECIAL PPL HUNI... GOODLUCK TO U AND BEN... I'M SURE SETH WILL GUIDE U XXXXXXXXX
19/9/08 22:23
Thought I would let you know what is happeneing!!! Also thought you ladies might understand too!
Ben and I have talked a lot and today after speaking and getting the support of the genetics team and have decided not to have any genetic testing on this baby. We both cannot go through with a termination so have decided there is no point in risking the baby to have a CVS when we wouldn't terminate anyway. I am sure people will think we are mad but we truely believe seth was a precious gift and if we are given another one then we will cope. We pray every day that seth was just very special and we have a healthy baby but we are just going to enjoy the next 8 months and try and be as positive as we can be. At any point we can change our minds but we are both set on our decision.
The geneticists class us as low risk because I am not a carrier but they still have to give us a 1 in 20 chance of it happening again. This means though that we have a 95 % chance of having a healthy bundle. Thanks for listening to me. XXX
19/9/08 20:52
smart ! we have spoken on there - it's quite a good site
19/9/08 17:25
Nathard are you on the infantile spasms forum??? Im hanna-maria on there, i think ive spoken to you on there aswel.
18/9/08 21:28
the most annoying thing is - it's such lousy timing! we are going on holiday in 3 wks to florida - that's gonna be fun if she's on high dose steroids
18/9/08 21:26
she's started back on pred again. We haven't had chance to talk to her consultant yet as he's been on holiday- when we asked what the next line would be a few months ago he said the next step would be valproate, so i wouldn't be surprised if he wants to start that too
18/9/08 19:43
which medication is eleanor goin on 2?
17/9/08 19:59
sorry hannab - just realised i hadn't actually answered your question. I reckon eleanor has absences too, but the consultant says they are really difficult to diagnose in under 2s.
17/9/08 19:57
eleanor had a brain haemorrhage ’around birth’, which is acting as a focus for the IS.
Finally got a phone call about 5pm today. The EEG we had yesterday, does show that the hypsarrhythmia is back - it had completely gone on the last EEG she’d had. It’s not as bad as her original EEG, which goes with the fact that the spasms don’t seem as bad ( so far, touch wood).
We’ve had a bit of a ’duvet day’ today and it seems to have done her good, it’s been nice to spend some time with a happy baby for the first time in days!Â
She has to start back on steroid again, so her comes budda baby again!Â
I don’t know if it’s sunk in or not yet, or if it feels like we can beat this again. Time will tell i guess. My main worry now is that we are supposed to be going to Floriday in 3 weeks - can’t imagine the travel insurance is going to be overly happy about it
17/9/08 14:01
Harvey has started having these 'blank' type episodes, he will be laughing or playing and suddenly he will go blank and stare at something for a few seconds or up to a minute and then come back to us. its strange, he doesnt seem upset by them and he just laughs after coming out of one. His Peadiatrician doesnt think it is his IS but probably something to do wth his other types of epilepsy. Has your daughter got another underlying seisure problem or has she been just diagnosed with IS?
Harvey is being gradualy weened off his phenytoin, one of the drugs he is on for his epilepsy and he is still on carbemazepene and vigabatrin so i dont know if its linked with him being weened off a drug
17/9/08 12:59
How is eleanor? Just wondered if you had had any luck with the episodes. thinking of you.
Karen. XXX
15/9/08 11:07
Awww bless her xx i hope that some1 can see u soon.. i'm currently weaning Lewis off Prednisolone... only 2more days 2 go... i'm really scared about the spasm's returning too.. Do u have open access 2 pau?
15/9/08 09:59
we're feeling a bit fragile today. Elenor has started having episodes where her eyes flick off ( more than usual), then she gets spaced out then all upset. They've been happening a few times a day for the last few days and poor little love seems generally 'a bit off it'. I'm pulled to bits - i don't know if it's the start of spasms/hysparrhthmia again, another seizure or nothing to worry about. We've tried our consultant but he is away till thursday, so are waiitng for another neurologist to ring us back - my thoughts are if we can get an EEG at least we will know if the hyps is back. It's knocked us for six a bit. We had just got used to having our little girl drug free and spasm free and happy, - having said hat atm she is sat playing in her play pen as if butter wouldn't melt!
. Babies hey - who'd have em. 9/9/08 13:35
Hi Karen, im so sorry to hear about your little boy. I cant imagine how you got thru it. We were told to prepare ourselves for the worst when harvey was taken into ICU and ventilated due to uncontrolable fits and the tumours on his brain pressing on a part of his brain causing severe epilepsy. I feel so grateful that harvey pulled thru and he will be 1 in 4 weeks. im so so so sorry you didnt get to have your little angel for longer but im sure he would be so proud of his mummy being so strong xxx
9/9/08 12:27
I think everyone that uses bounty knows of seth... he really touched alot of people... RIP baby boy XxX
Hi karen,
I don't doubt for a minute that you've made the right decision. You probably know the statistics better than me but CVS carries such a risk with it, that if losing your baby isn't an option then it's not really something that you can consider really.
I know that the whole naivity of having a baby is stripped from you when you have had the experience of it that you have, but i know you will love your baby with all your heart no matter what - and the odds r really weghted in yur favor.