keppra is this the one

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hi babyann03

Its keppra i noticed a difference with Amy . When she was on Lamactal the first eight months she was seziure free , only seziures came when she was expericing a bad month on her menstrual cycle . She is on the depo to controll these break throughs which have helped significally . But Amy has had two small seziures since feb , 2nd one this morning . She is due to start weening off lamactal tomorrow , not so sure , so we will be making an appointment tomorrow with the gp. A nd a quick call to Amys epilepsy nurse in the hospital
 
hi jonsey,
sounds similar to bai, with lamictal lacked confidence & had trouble with everything... however the keppra gave her the confidence & is starting to catch up to where she should be for a yr 3!!! i was worried that the topamax would worsen that again, however apparentky even on days where shes had a seizure overnight she is more focused!!! however if we dont give her a multivitamin with b6 in it her moods are really bad!!! you can really tell if she has missed one....
gd luck with amys epilepsy nurse tomorrow hope it all goes well!!
 
afternoon babyann03

Amys had a breakthrough, she has some spoting this morning, she hadnt realised till she has got up and went to the bathroom . This is three weeks after the last one , now im thinking that maybe the keppra is messing with the depo. Its just a thought . Amy is back to her normal self, getting ready to go out for lunch x
 
good morning jonsey,

i think maybe you could be right about the keppra... not good at all that these breakthroughs keep happening... thankfully its not much tho... one time i had breakthrough but it just didnt stop for ages, i thought there was something wrong with me (it went for about 2mths) thankfully not heavy.... didnt stop until i was due & had my next depo.... strange things... however it is not fair & not good to have those breakthroughs, & i have heard that antiepileptic meds do mess with all of that stuff... i hope the epilepsy nurse can help with this asap!! xx
 
Good evening babyann03

I left a message with shelia this morning , hopefully we will have an appointment pretty soon . Amys going to keep to the same dose of lamactal , she was going to start reducing it down to 275mg instead of taking 300mg . I did read somewhere that a hormone test could give a clue has to whats happening . I am going to request this. I have become more pro active in her treatment of late , this is only to the good advice i read or request of others . Maybe i should give sheila the link , i think she could benefit from it .

Best wishes to you and the family

Sharron x
 
good morning sharron,

sounds like the hormone test could be a good idea!!! anything that might help is a good idea to try... & i think being pro active with everything is great too... in our case with bai noone did anything until we really got pro active with everything & kept pushing for stuff etc!!! giving her the link would be good too, will be helpful for her & information is good i rekkon!!
i hope you have a nice night & best wishes to you & your family too :)

cecile xx
 
hi babyann03 (cecile)

I managed to speak to shelia, but didnt get any where really . Nobody listens , apparently we have to ask our gp for a hormone test . I was a little confussed as Amy is under the hospital for her epilepsy, so you would of thought they would arrange or even investigate having a hormone test . Apparently there is no evidence to realate Amys epilepsy to her time of the month . But even going back to 2006 , her period was apparent . Her triggers are not sleeping, stressing or not eaten properly . No mention about her time of month . But never mind im phoning her gp tomorrow and go in and speak to him . xx
Chat soon good night
 
hi jonsey,
its so frustrating when they dont listen isnt it... espec that you would have a better idea of it all being with her all the time & knowing the patterns of when they occur & everything!! i hope that her gp is more helpful!!! bai had another seizure again this morn, once i got her to take a breathe she just went straight back to sleep thankfully so wasnt a bad one & when she got up today it was as tho nothing happened!!! she goes to her full dose of the topamax tonight!! so hopefully it will cut out all the breakthrough ones!!
good luck with the gp chat to you soon
take care xx
 
Hi babyann03
Poor bai, dont you think these kids are so brave , what they have to go through. Just wish there was a magic wand and just banish epilepsy for good.

Its not pleasent for you either to see your baby go through such distress at those terrible times

And its true what you say about not listening . Why keep a seziure diary when they ignore what you write down or say, its just pointless

Keep safe

sharron xx
 
hi jonsey,
i know our kids & other kids with epilepsy & horrible disorders/illnesses are sooo brave!!! you are so right there, wish there was a magic wand that could just take it away from them... & to see how happy they still are even tho they go through all of this stuff & leaves their little bodies tired & drained & yet they still keep going with a smile!!!
I hope amys gp is much more help!!!

you keep safe too

xx
 
hi babyann03

Disater at the doctors today , totally lost it in the surgery . Duty of care as gone out the window. Its even worse when the gp cant be much older than your daughter , Amys 21 .

I explained about what happened 12 march and 1 st of this month, and how lucky Amy was that she never fell down a flight of concrete stairs whilst sezuring . And i wasnt taking any chances i wanted a hormone test as im convinced her seziures are around her tme of the month . His reply "i dont think its linked " and this is from the notes he just pulled up on the pc .
He told me i had to go back to see Amys doctor in the hospital . I told im that it was the epilepsy nurse from the hospital who told me that Amys gp had to sort that out . Talk about a waste of time . Amy got so frustrated i thought she was going to explode . I told him her triggers was down to breakthroughs, and if he went back from 2006 it should be documented the times we went to the hospital before Amy got diagnosed with epilepsy . I did ask him how would you diagnose calamenia (i no i have spelt that wrong ha ha ) You wont beleive is reply " whats that " , i must admit that didnt go down to well . Amy wanted to see another doctor at the surgery , Dr Davies , so he obliged and arranged an appointment for next wednesday . Hopefully as im sure Dr Davies will get this sorted and get the blood test sorted . Im also going to ring shelia and let her no what happened . That will be an interesting conversation tomorrow

Hope bai is ok and you have a very peacefull and quite night x
 
hi jonsey,

i cant imagine how you & amy were feeling when that doctor was saying that to you!!! think i would have been exactly the same!!! i cant believe that he said whats that to you about & that shiella will be more helpful when you explain to her what happened with the doctor!!! sounds as tho duty of care has gone out the window... i would be so fuming!!!

Bai had a great night lastnight thankfully!!! no seizures or anything was really good thankyou for asking!! its nice when i get nights like that now!!! lol have organised for her friend to sleep over tonight as is last day of school term today (her friend has diabetes & they are really good at helping each other its nice that she has a good friend not many of the kids really understand what she goes thru ie mood swings & everything else)
am going shortly to watch her on stage at the end of term assembly our other daughter is doing a solo with singing & xylophone too!!!

I really hope that amy calmed down ok after the ordeal at the doctors & that you are okay now.... youd think doctors would be more helpful & nicer!!!

hope you have a nice night & take care good luck with shiela & also with dr davies!!

xx
 
Arrgh! Doctors can be frustrating! I'm not a pushy person, but I have learned over the years that it pays to be aggressive about getting my concerns addressed when I see the doc. It also helps to bring written questions with you, and to take notes during the session, so the doc knows you are keeping tabs on him. I hope your next encounter with a doctor is more productive and less stressful.
 
Me to Nakamova , but at this moment in time i think i have a fight on my hands . There is so much i want to say and get off my chest . We are back in the doctors wednesday to see a doctor whom we do have confidence in . I will tho inform him of the way his new doctor performed and it wont be polite .
 
hi jonsey,
thinking of you & amy, & hoping that your appoint on weds goes well!! hope u have a lovely easter will talk again soon

cecile xx
 
Hi Cecile

Thanks for the easter wishes . And i hope you and the family have a relaxed easter break too .

Sharron xx
 
hi jonsey, i hope you have had a lovely easter with the family & didnt have too many easter eggs :) i hope everything goes well with shiela tomorrow!!! we have had things going good with bai lately scince she started on the 50mg topamax at night we havnt had any troubles!!! we had someone from the epilepsy centre come out to talk to us today so they can draw up a care plan for bais records at the school!!! that went really well & very detailed not like the one the hosp drew up last year!!! however he has been trying to get in contact with the principle at the school as they need to have training to administer midazalin just incase it is needed at school (for legal reasons) however he wont call him back about it!!! we may have to talk to the school as well to push the issue with them.... that part can be frustrating!!! i hope all is okay with amy as well looking forward to updates of how things are going.

take care & talk soon

Cecile xxx
 
Hi babyann03

Had a lovely easter thanks , nice and quite just how i like it (no dramas). So glad to hear that things are settling down for Bai. And im sure you will have everything in place for her at her school .

Today is the day we see Dr Davies , we will speak to Shelia over the phone, just to update her . Amy has an appointment with the hospital in July . Hopefully if all goes well at the Dr we will speak to Mr Smith who is the consultant at the hospital .

Speak soon Cecile xxx
 
hi jonsey,

im glad that you had a nice easter with no dramas!!! ours was the same quiet with no dramas!!! :)

yea me too, is seeming like she is on the right dose/meds... for now anyway!! yea the school has been great with pretty much everything, its just the midazelen (however spealt)

i hope shiela is or has been helpful with everything when you have spoken to her over the phone!!! good that she has an appoint with the hosp scheduled!!

speak soon xx
 
Hi babyann03

Dr Davies was great , Amy came out relaxed and on the whole positive . Hes not dismiss that drearded trigger (hormones). Hes going to get her an appointment with a, oh heck i cant even spell it , here goes a ganecologist ha ha that is no way right . I will get it right next time . But i held my own with all the information gathered from the forum . We even came out with more information on cycles . I think a glass of wine is in order now . I will raise a glass to you and yours , wishing everything goes well your end to . Happy days are forcasted i think

Take care for now , will chat pretty soon xxxx
 
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