Guest guest Posted September 6, 2011 Report Share Posted September 6, 2011 Hello everyone, Am writing this while am still n z hospital for the 6th day, doctors are trying to readjust the medications for Lana, they tried everything but no hope:( she will be discharged with 5 med!! I think surgery is the next step or is there another option?!! God knows, I don't know what to do we will be transferred to another and a bigger hospital. Just something cross my mind could teething have anything to do with the seizures?? Since it really give children hard time! If you find my question silly pls don't answer:p Regards, Lina Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Lina I don't know if teething would do it. It is so hard when you feel so helpless. Where do you live? Maybe a second opinion?? Sent from my iPhone > Hello everyone, > > Am writing this while am still n z hospital for the 6th day, doctors are trying to readjust the medications for Lana, they tried everything but no hope:( she will be discharged with 5 med!! I think surgery is the next step or is there another option?!! God knows, I don't know what to do we will be transferred to another and a bigger hospital. > > Just something cross my mind could teething have anything to do with the seizures?? Since it really give children hard time! If you find my question silly pls don't answer:p > > Regards, > Lina > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Teething did seem to make my daughters seizures worse, pain often does that. In the first yr we spent more time in hosp than out. But 5 drugs sounds too much. Most neuros prefer 2 or 3 otherwise you don't know which is working. Ask for a consultation with pediatric neurologist or epilepsy specialist. Good luck. Lou >Lina > >I don't know if teething would do it. It is so hard when you feel so helpless. Where do you live? Maybe a second opinion?? > > > >Sent from my iPhone > > > >> Hello everyone, >> >> Am writing this while am still n z hospital for the 6th day, doctors are trying to readjust the medications for Lana, they tried everything but no hope:( she will be discharged with 5 med!! I think surgery is the next step or is there another option?!! God knows, I don't know what to do we will be transferred to another and a bigger hospital. >> >> Just something cross my mind could teething have anything to do with the seizures?? Since it really give children hard time! If you find my question silly pls don't answer:p >> >> Regards, >> Lina >> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 We will go to another place seeking for second opinion, I asked the doctor today to reduce number of med they said they will but they have to make sure which one is working to keep. Pray for her. Best Regards, Lina Kurdi > Lina > > I don't know if teething would do it. It is so hard when you feel so helpless. Where do you live? Maybe a second opinion?? > > > > Sent from my iPhone > > > > > Hello everyone, > > > > Am writing this while am still n z hospital for the 6th day, doctors are trying to readjust the medications for Lana, they tried everything but no hope:( she will be discharged with 5 med!! I think surgery is the next step or is there another option?!! God knows, I don't know what to do we will be transferred to another and a bigger hospital. > > > > Just something cross my mind could teething have anything to do with the seizures?? Since it really give children hard time! If you find my question silly pls don't answer:p > > > > Regards, > > Lina > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Thanks , I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. Today she is better, touch wood, hope we will be discharged today I miss my home and other children! Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? Warm Regards, Lina > Thanks , > > I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. > Today she is better, touch wood, hope we will be discharged today I miss my home and other children! > > Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? > > > Warm Regards, > Lina > > On Sep 7, 2011, at 9:55 AM, Mcmanus wrote: > >> Hi Lina, >> When my daughter was 8 months thats when her seizures started we got them under control with the third aed but i do believe that cutting her teeth had alot to do with her seizures on the 15 July 2010 was the last day of seizures she was then 13months s but also this day coincided with me noticing that she had cut her last 2 back teeth. Ãine showed no other signs of teething like my other 2 children no temperatures no teething rash no diaper rash so I'm not entirely sure she interputs pain like us i've seen her nip her fingers etc and she does not cry. I hope things work out for you soon and they get your daughters seizure under control with something . >> >> kind Regards >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Lina When my daughter would cluster she would et a facial droop / weakness. It would take a week or so after the seizures completely went away. Do not worry too much. Her little brain is dealing with a lot. It should get better, never lasted in our daughter. Sent from my iPhone > Thanks , > > I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. > Today she is better, touch wood, hope we will be discharged today I miss my home and other children! > > Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? > > Warm Regards, > Lina > > > > > Thanks , > > > > I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. > > Today she is better, touch wood, hope we will be discharged today I miss my home and other children! > > > > Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? > > > > > > Warm Regards, > > Lina > > > > On Sep 7, 2011, at 9:55 AM, Mcmanus wrote: > > > >> Hi Lina, > >> When my daughter was 8 months thats when her seizures started we got them under control with the third aed but i do believe that cutting her teeth had alot to do with her seizures on the 15 July 2010 was the last day of seizures she was then 13months s but also this day coincided with me noticing that she had cut her last 2 back teeth. Ãine showed no other signs of teething like my other 2 children no temperatures no teething rash no diaper rash so I'm not entirely sure she interputs pain like us i've seen her nip her fingers etc and she does not cry. I hope things work out for you soon and they get your daughters seizure under control with something . > >> > >> kind Regards > >> > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 This is calming, and this is exactly what happens with Lana, she even smiles with one side. Thank u:) Lina > Lina > > When my daughter would cluster she would et a facial droop / weakness. It would take a week or so after the seizures completely went away. Do not worry too much. Her little brain is dealing with a lot. It should get better, never lasted in our daughter. > > > > Sent from my iPhone > > > > > Thanks , > > > > I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. > > Today she is better, touch wood, hope we will be discharged today I miss my home and other children! > > > > Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? > > > > Warm Regards, > > Lina > > > > > > > > > Thanks , > > > > > > I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. > > > Today she is better, touch wood, hope we will be discharged today I miss my home and other children! > > > > > > Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? > > > > > > > > > Warm Regards, > > > Lina > > > > > > On Sep 7, 2011, at 9:55 AM, Mcmanus wrote: > > > > > >> Hi Lina, > > >> When my daughter was 8 months thats when her seizures started we got them under control with the third aed but i do believe that cutting her teeth had alot to do with her seizures on the 15 July 2010 was the last day of seizures she was then 13months s but also this day coincided with me noticing that she had cut her last 2 back teeth. Ãine showed no other signs of teething like my other 2 children no temperatures no teething rash no diaper rash so I'm not entirely sure she interputs pain like us i've seen her nip her fingers etc and she does not cry. I hope things work out for you soon and they get your daughters seizure under control with something . > > >> > > >> kind Regards > > >> > > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Lina The smiling is called Bell's Palsy and is temporary. Myna got it after EVERY seizure. Very scary, but then suddenly it'd be gone. Sent from my iPhone > This is calming, and this is exactly what happens with Lana, she even smiles with one side. > > Thank u:) > Lina > > > > > Lina > > > > When my daughter would cluster she would et a facial droop / weakness. It would take a week or so after the seizures completely went away. Do not worry too much. Her little brain is dealing with a lot. It should get better, never lasted in our daughter. > > > > > > > > Sent from my iPhone > > > > > > > > > Thanks , > > > > > > I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. > > > Today she is better, touch wood, hope we will be discharged today I miss my home and other children! > > > > > > Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? > > > > > > Warm Regards, > > > Lina > > > > > > > > > > > > > Thanks , > > > > > > > > I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. > > > > Today she is better, touch wood, hope we will be discharged today I miss my home and other children! > > > > > > > > Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? > > > > > > > > > > > > Warm Regards, > > > > Lina > > > > > > > > On Sep 7, 2011, at 9:55 AM, Mcmanus wrote: > > > > > > > >> Hi Lina, > > > >> When my daughter was 8 months thats when her seizures started we got them under control with the third aed but i do believe that cutting her teeth had alot to do with her seizures on the 15 July 2010 was the last day of seizures she was then 13months s but also this day coincided with me noticing that she had cut her last 2 back teeth. Ãine showed no other signs of teething like my other 2 children no temperatures no teething rash no diaper rash so I'm not entirely sure she interputs pain like us i've seen her nip her fingers etc and she does not cry. I hope things work out for you soon and they get your daughters seizure under control with something . > > > >> > > > >> kind Regards > > > >> > > > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2011 Report Share Posted September 7, 2011 Dear Melisa, Just a small question for you, can the PMG child live a totally normal life like other children? Mean without surgery??! My daughter looks lazy all the time and she early cries she is like this from the very beginning even without starting the medications!! Is this normal in PMG children? Best Regards, Lina Kurdi > Lina > > The smiling is called Bell's Palsy and is temporary. > Myna got it after EVERY seizure. Very scary, but then suddenly it'd be gone. > > > > Sent from my iPhone > > > > > This is calming, and this is exactly what happens with Lana, she even smiles with one side. > > > > Thank u:) > > Lina > > > > On Sep 8, 2011, at 5:27 AM, Holman wrote: > > > > > Lina > > > > > > When my daughter would cluster she would et a facial droop / weakness. It would take a week or so after the seizures completely went away. Do not worry too much. Her little brain is dealing with a lot. It should get better, never lasted in our daughter. > > > > > > > > > > > > Sent from my iPhone > > > > > > > > > > > > > Thanks , > > > > > > > > I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. > > > > Today she is better, touch wood, hope we will be discharged today I miss my home and other children! > > > > > > > > Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? > > > > > > > > Warm Regards, > > > > Lina > > > > > > > > > > > > > > > > > Thanks , > > > > > > > > > > I still believe that teething has a lot to do with Lana's seizures I just noticed that one back tooth has cut already, that was while I was massaging her gums with special product for teething. > > > > > Today she is better, touch wood, hope we will be discharged today I miss my home and other children! > > > > > > > > > > Worry: Her left side(hand & leg) still very weak she does not move them for about a month now!!! When she started seizing!!! will she get any better when she get her seizures controlled? > > > > > > > > > > > > > > > Warm Regards, > > > > > Lina > > > > > > > > > > On Sep 7, 2011, at 9:55 AM, Mcmanus wrote: > > > > > > > > > >> Hi Lina, > > > > >> When my daughter was 8 months thats when her seizures started we got them under control with the third aed but i do believe that cutting her teeth had alot to do with her seizures on the 15 July 2010 was the last day of seizures she was then 13months s but also this day coincided with me noticing that she had cut her last 2 back teeth. Ãine showed no other signs of teething like my other 2 children no temperatures no teething rash no diaper rash so I'm not entirely sure she interputs pain like us i've seen her nip her fingers etc and she does not cry. I hope things work out for you soon and they get your daughters seizure under control with something . > > > > >> > > > > >> kind Regards > > > > >> > > > > >> > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 Hello again everyone, Am back home now with my Lana. seizures have been controlled at last with the assistance of 4 meds.!! I think they are a lot but my biggest concern is the seizures so I can not say anything except " Thank Godness " , my other concerns now are: - her vision!! sometimes she dosent focus on my face while am playing or talking to her. - she is 11 months now and she can not set without support! and I feel her body, muscles are weak though specially for sure her left part. any advice, are ther any exersice that I can do at home + the phesyotherapy, that may help. Best regards, Lina Hi Lina, >How is your little girl today? What do you mean early cries? Going back on your posts I can't figure out what age Lana is I hope things are a bit better. > >I will tell you about my little girl Áine is the youngest of my 3 girls she is now nearly 2 and a half. When i was pregnant and went for my 20 week scan they said that she had enlarged ventricles on the brain and called me back to check 2 weeks later and said that they were fine. This though stayed with me tucked in the back of my brain. >I had an emergeny c/section at 38 weeks and things looked ok within 24 hrs she turned black with me on the ward twice so was took to nnicu for a few days where they said she had a valve in her heart that had not closed properly so after a week we got home and had to return as an outpatient a few times to check the valve had closed over. I had asked about her enlarged ventricles and was told " oh it could be something as being right or left handed " . >So we went home and enjoyed our little one until I noticed she never used left side at all and hand was fisted also she cried when I lifted her left leg changing nappy. We were attending physio as she had torticollis of neck when born so I mentioned to physio about her leg so she booked us in for x ray which told us at 8 months that she had a dislocated hip. Two weeks later we were told that she had left hemiplegia (Cerberal Palsy). >So at 10 months she recieved surgery for her hip and 3 weeks later she had her first of many seizures, after that we had EEG's MRI's etc and the day before her 1st birthday i was told she had extensive Polymicrogyria affecting her right hand side of the brain. >Devastated I trawled the internet looking for answers etc but it was the worse thing you can do because the outcome does not look great but from my experience now all children are different even with the same diagnosis's. >Áine has been seizure free now for 13months but it took us nearly 6 months getting them under control luckily they got them sorted on her 3rd med, but since she has been seizure free i have a different little girl she has come on so much this last few months its great to see. she cannot walk or crawl yet, and cannot talk yet but is starting to babble,she eats well mashed food and has a very good diet although she is quite small and thin. >We attend physio and OT and have speech therapy we still are waiting for further treatment for her hip as it failed the first time. She has a splint for her left hand to bring her thumb out but her hand has really loosened up alot now she is very tight at her shoulder though and she wears wee glasses. >She has brought alot of joy and love into our home and eveybody that comes in contact with her loves her also. There has been many a dark day of worry and why why why but a smile from áine brightens me right back up. I hope that soon they will find the right treatment for you and your daughter > >regards > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 Hi Lina, Glad to hear that you are home and that finally you have got seizures under control. My little girl has a weakness on her left side and had a fisted little hand she had poor trunk control also and now at the age of 2 1/2 can sit from 19 months although I wouldn't leave her unattended as she has a tendency to throw herself back she also does not know to save herself if she falls forwards. She has came along great since seizures have been controlled. Has anybody looked at Lana vision yet aine wears glasses as she is quite long sighted but I thought she had alright vision,mention your concerns to a health visitor or doctor and they should point you in the right direction. Sent from my BlackBerry® smartphone on O2 FW: My baby Lana Hello again everyone, Am back home now with my Lana. seizures have been controlled at last with the assistance of 4 meds.!! I think they are a lot but my biggest concern is the seizures so I can not say anything except " Thank Godness " , my other concerns now are: - her vision!! sometimes she dosent focus on my face while am playing or talking to her. - she is 11 months now and she can not set without support! and I feel her body, muscles are weak though specially for sure her left part. any advice, are ther any exersice that I can do at home + the phesyotherapy, that may help. Best regards, Lina Hi Lina, >How is your little girl today? What do you mean early cries? Going back on your posts I can't figure out what age Lana is I hope things are a bit better. > >I will tell you about my little girl Áine is the youngest of my 3 girls she is now nearly 2 and a half. When i was pregnant and went for my 20 week scan they said that she had enlarged ventricles on the brain and called me back to check 2 weeks later and said that they were fine. This though stayed with me tucked in the back of my brain. >I had an emergeny c/section at 38 weeks and things looked ok within 24 hrs she turned black with me on the ward twice so was took to nnicu for a few days where they said she had a valve in her heart that had not closed properly so after a week we got home and had to return as an outpatient a few times to check the valve had closed over. I had asked about her enlarged ventricles and was told " oh it could be something as being right or left handed " . >So we went home and enjoyed our little one until I noticed she never used left side at all and hand was fisted also she cried when I lifted her left leg changing nappy. We were attending physio as she had torticollis of neck when born so I mentioned to physio about her leg so she booked us in for x ray which told us at 8 months that she had a dislocated hip. Two weeks later we were told that she had left hemiplegia (Cerberal Palsy). >So at 10 months she recieved surgery for her hip and 3 weeks later she had her first of many seizures, after that we had EEG's MRI's etc and the day before her 1st birthday i was told she had extensive Polymicrogyria affecting her right hand side of the brain. >Devastated I trawled the internet looking for answers etc but it was the worse thing you can do because the outcome does not look great but from my experience now all children are different even with the same diagnosis's. >Áine has been seizure free now for 13months but it took us nearly 6 months getting them under control luckily they got them sorted on her 3rd med, but since she has been seizure free i have a different little girl she has come on so much this last few months its great to see. she cannot walk or crawl yet, and cannot talk yet but is starting to babble,she eats well mashed food and has a very good diet although she is quite small and thin. >We attend physio and OT and have speech therapy we still are waiting for further treatment for her hip as it failed the first time. She has a splint for her left hand to bring her thumb out but her hand has really loosened up alot now she is very tight at her shoulder though and she wears wee glasses. >She has brought alot of joy and love into our home and eveybody that comes in contact with her loves her also. There has been many a dark day of worry and why why why but a smile from áine brightens me right back up. I hope that soon they will find the right treatment for you and your daughter > >regards > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 20, 2011 Report Share Posted September 20, 2011 Lina, That is great news! Here is my list of of therapy to start: this OT for vision work with her in a bean bag to limit head movement do peekaboos with bright or noisy thing, use a toy on a ruler and swing it around be sure to make it close in and pull out and side to side. Feeding time is also good for vision exercises and in car put her on the side of the weak side. This is PT ideas for the weakness massage firmly and stretch pulling joints the recoil (let go) sends signals of awareness to the brain, the whole body and use virbation pillow too or in a warm bath. Strengthen core with exercise ball and belly time. Enjoy your baby and sign up for early intervention OT and PT. I'm glad you have some relief. Diane Quote Link to comment Share on other sites More sharing options...
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