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 mnths...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