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Fuck!! Jack having bad seizures again....... soo sad

(25 Posts)
caitlinnjacksmummy Wed 03-Sep-08 21:54:23

Hey, very down well Jack's seizures were under cntrl . Sort of, til we went on hols t Berwick at start of summer hols and he started seizing every day again after a bath(again),mild and occasional tonic clonic, not always needing diazepam tho but nw he is having tonic clonics really bad, had a bad one after bth last fri, breath holding and lips blue etc, I actually had a panic attack cos it just threw me as he hadm't had one like ths in mnths, needed 2 diazepam but had quite bad 1 sat too altho no diazepam needed, and tonight after bath had realy bad one again, breath holding over n over, his lips were actually purple, thought I was losing him..., n he had tonic clonic stage and was totally shaking(his hands), was soo bad

Consultant is gonna try fit him in this week, if not early next week, to asess meds again, ws not meant t b seen til Oct from Aug an this is first time he has asked t see him 2 MONTHS later, usually 2, 3 weeks at most, so was really happy at tht. Nw we are bk at square 1!!!! Pissed off

He is on lamotrigine 3 dispersable tabs morn and at night and 4ml morn n night of epilim and 4ml nitrazepam morn n night. He has put on 5lbs in last 8 weeks or so, which diatecian thot was a lot in short time, so maybe he needs meds sorted again cos put on weight n gettn bigger...he was 18 mnths yesterday...But dietician sed he is 2 stone!! Doesn't look it at all....or ad be worried, also what dietician needs t atke into account is Jack can't yet sit never mind walk, so harder t get weight off if not sad, hate this bastard epilepsy, can deal with everythin else with his genetic disorder, but HATE BASTARD EPILEPSY!!!!!!!!!!!!!!!!!angry

caitlinnjacksmummy Wed 03-Sep-08 22:00:51

Bloody hell, crying nw....nd t get t bed, have appointment in morning, just soo upset

caitlinnjacksmummy Wed 03-Sep-08 22:00:56

Bloody hell, crying nw....nd t get t bed, have appointment in morning, just soo upset

used2bthin Wed 03-Sep-08 22:07:10

I have no experience but want to say how sorry I am that you and DS are having such a hard time. And good luck with your appointment tomorrow.

Tclanger Wed 03-Sep-08 22:16:44

Message withdrawn at poster's request.

2shoes Wed 03-Sep-08 22:27:35

<<<<<hugs>>>>>>> epilepsy is shit no advice but wanted to offer support.

PheasantPlucker Wed 03-Sep-08 23:27:49

I am so sorry the seizures are bad, I really feel for you xx

BriocheDoree Thu 04-Sep-08 08:12:45

Sounds crap and awful and crap sad
Hope the consultant can help.

trace2 Thu 04-Sep-08 08:36:50

only just seen this sorry! are you ok this morning ,did you get much sleep? glad you got app this morning, come back and tell us

Mitchell81 Thu 04-Sep-08 08:42:55

Sorry that Jack is having seizures again. Epilepsy is horrible.
He is georgeous by the way and so is DD.

TotalChaos Thu 04-Sep-08 09:39:50

sorry you're going through all this worry, hope the consultant appointment helps

magso Thu 04-Sep-08 10:08:22

((hugs)) is all I can send (no experience)Hope your appointment is helpful.

bullet123 Thu 04-Sep-08 10:33:21

Very sorry for Jack and you. I hope the appointment will help.

coppertop Thu 04-Sep-08 10:48:18

I'm so sorry that you and Jack are going through this. xxx

Arabica Thu 04-Sep-08 15:00:47

So sorry cj, hope you are getting some help, please tell us how you get on. Thinking of you.

caitlinnjacksmummy Thu 04-Sep-08 21:37:52

Hey guys bn out all day, Jack's consultant's appointment isn't til wed at 2pm unfortunately, bn ok today,actually had 2 baths as he was sick lol, but more fuckn bad news, had appointment at eye clinic as I was worried bout Jack's vision, and left eye slower than right, turns out he is long sighted, has astignatism(so sorry if a spelt tha wrong!!Dunno how t spell it!!) and a squint that squints outwards instead of inwards, they wud treat it with glasses but the glasses wud only treat the longsightedness and wud make squint worse, but gonna leave it just nw and see him regularly then he may get glasses, also sed that his optic nerves are paler indicating usually lack of oxygen to the brain, etc brain damage, which he has, but not necessarily linked to this, we actually have family history of longsightedness(me) and astignatism(sorry again cos just KNOW I am spelling this wrong!!) my sister and nphw have this...but yet more bad news, not fair...but if still a problem when he is nursery age, school age then they can get a teacher involved to help with his vision n stuff, soo pissed off well n truly

caitlinnjacksmummy Thu 04-Sep-08 21:40:54

Oh n forgot to mention, that if the squint is still a problem as Jack gets older, like quite a bit older, then they ca operate for cosmetic reasons to make it look better , FUCK FUCK FUCK!!!!

caitlinnjacksmummy Thu 04-Sep-08 21:42:27

Oh n forgot to mention, that if the squint is still a problem as Jack gets older, like quite a bit older, then they ca operate for cosmetic reasons to make it look better , FUCK FUCK FUCK!!!!

TotalChaos Thu 04-Sep-08 22:00:11

caitlin - the astigmatism can correct itself at this young age - DS was found to have astigmatism and longsight at 2 (though not a squint). The astigmatism reversed itself by the time he was just over 3 (and were about to give him glasses for it, as one eye was a lot worse than the other). The longsightedness they weren't at all bothered by.

sorry the eye appointment was so depressing.

caitlinnjacksmummy Thu 04-Sep-08 22:14:23

Hey,thats reassuring totalchaos smile they have sed that can reverse, does yr Ds2 have other probs? I just feel tht Jack can't see me a lot, at a distance, he looks past me but laughs as he hears me...were u worried tht ur ds wasn't seeing properly 2?

TotalChaos Thu 04-Sep-08 22:17:49

DS's sight seems to be absolutely fine now (apparently the longsightedness means he shouldn't end up shortsighted!). I didn't have massive concerns about what he could see, as one eye was pretty close to normal, just the other one that was significantly affected, so the good eye would make up for it iyswim.

mummypig Thu 04-Sep-08 22:19:40

Have only just seen yesterday's message, so sorry to hear your news, hope consultant appt is useful.
<<<big hugs>>>

caitlinnjacksmummy Thu 04-Sep-08 22:23:12

Thanks mummypig!! You's are all soo lovely, what wud I do without u ?!

iswym totalchaos, Jack's other eye is perfect, but this left 1 is a worry, looks like a glass eye sort of at times, more n more recently, it is just 1 thing after another fr the little man

Arabica Thu 04-Sep-08 22:55:19

Sorry to hear about the eye clinic. DD also has a squint and longsightedness, but it's the kind of squint that does respond to wearing glasses. We were told about the operation too, but they said it was quite a minor op.

trace2 Fri 05-Sep-08 10:46:04

so sorry about this but we have been told the same with chloe shes only 15m and we was told its unusal untill they about 40 years old, checked for glasser but told to young to check

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