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Jack having at least 1 seizure a day again.....:(, sorry, long post.......

(10 Posts)
caitlinnjacksmummy Mon 14-Jul-08 21:11:09

Hey all of u, hope you are all good.....Jack was goin' five days without a seizure but we went on hols for 5 day to Berwick an he started taking at least 1 a day again, also in the on site club (haven) the min we wnt in(v. dark, and very noisy, n kids waving light up toys etc) he was fitting, my gp put his lamotrigine up by 2mg and has had no effect(as I knew it wouldn't)!!Jack's consultant is off, n we do not have appntmnt til end of July, he is still on the epilim 4ml mornin n night and nitrazepam 4ml morning n night as well as now 12mg lamotrigine tabs morning and 12mg at night, and I know for a fact if Jack's consultnt was here he would have put lamotrigine up by more than 2mg, so down,and I myself am bk on antidepressants, n was on diazepam for v.bad periods, as I have a history of OCD AND DEPRESSION but nw dr has withrawn it and feel I really need it atm, and Jack still not sucking any liquid from a bottle or cup, but still sucking his dummy, this has bn ongoing for 3 mnthshmm...but worried he is losing the skill to suck, as he has hypotonia, as well as damage to brain, and global development delay all a result of genetic disorder,as we just found out v. recently the physio sed it is poss that muscles in his throat are affected also...

but he is gettn a LOT of teeth at the same time ....1 back tooth and 3 bottom at the moment, thy have all sorta came in at once but I hope this is the reason for him not sucking the cup or bttle anymore, he also gags on lumpy food, still on pureed jars abd jars for 7 mnth olds at best, n he is 16 mnths, feel so fuckin crap

caitlinnjacksmummy Mon 14-Jul-08 21:12:24

Oh n obv he has the sever epilepsy, sorry!!!grin

Seuss Mon 14-Jul-08 21:29:02

Sorry to hear you and Jack are having a tough time, I'm sorry I don't know much about epilepsy but wanted to post something.

All those teeth coming at once has got to be a bit rough for the little chap too, but at least if they all come now you get it out of the way, could be affecting what he wants to eat/drink/have in his mouth.

Tclanger Tue 15-Jul-08 07:58:25

Message withdrawn at poster's request.

sarah293 Tue 15-Jul-08 08:50:43

Message withdrawn

caitlinnjacksmummy Tue 15-Jul-08 11:12:32

Hi, thanks feel so low, n I feel he has cut them off at a terrible time too...said he doesn't want me to be depandant on diazepam,but I take it twice at most in a day!! And had 2 prescriptions of 21 5mg diazepam in like 6 or 8 weeks, hardly say thats dependant, dunno what to do...riven I am so sorry bout Celyn, saw prev posts about you being on benzo's? Was that diazepam? Any tips on what to say to the dr? grin big kisses n cuddles for Celyn, n u of coursewink, don't have a name for genetic disorder, just tha chromosome 6 attached itself to chromosome 12 during conception and in the process chomosome 6 lost it's equalities reultin in Jack's numerous probs xxxx

trace2 Tue 15-Jul-08 12:32:13

hi just wanted to say how sorry i am for you youposted on my thread about dd if you ever want to chat just ask am here for you!

Tclanger Tue 15-Jul-08 12:34:43

Message withdrawn at poster's request.

sarah293 Tue 15-Jul-08 15:27:10

Message withdrawn

caitlinnjacksmummy Tue 15-Jul-08 17:45:03

Ano wat u mean riven, so is alprozam like diaepam? Have u any tips on wat t say t my dr? At my wits end xxxx

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