Friday, November 21, 2014

when seizures become a part of life

we went to riley childrens hospital on thursday to see lexis neuro down there. we knew going down there that there was little options left to treat her epilepsy as thats what her neuro close to home has said. we went with an open mind. first all the neuro was happy with the way lexi looked this time. much better than in july when her body was rejecting her vns. she went over her meds and said the only meds left for us to try is phenobarbital and dilantin. she was going to start her on pheno but i then asked about the ketogenic diet. reason i asked was because its not meds and its a diet and could possibly help. she said it wont help with the focal seizures but her other types it might. so we go back in 3 weeks to the keto clinic and talk to the dieticians. im hoping we can at least try it so we can say we have tried everything. i understand it can be part of lexis life that she will always have seizures but i dont ever want to give up on her. i want to know i have tried everything

Saturday, November 1, 2014

halloween and random updates

the past couple weeks have been busy. we went to zoo boo last weekend and it was alot of fun. it was our first time going and i believe we will be going again next year. lexi enjoyed it alot i think. we also went and got pumpkins to paint and she had a blast painting her pumpkin. we paint pumpkins because 1 its something she can do and 2 i always paint mine purple to help raise awareness for epilepsy. we went trick or treating last night and it was freezing. we only lasted 30 minutes but we went to a few houses and got a bit of candy. i probably would have lasted longer but we went with my sister in law and her kids so they was complaining it was too cold. as far as medically speaking lexi is doing good. she has lost weight so we are supplementing more and her gi dr has referred her to feeding therapy. what her issue is with feeding is she has weak muscles so she doesnt like to have to feed herself or eat stuff that takes work to eat. her developmental ped referred her to a new ent who specializes in airway issues in hopes to figure out what to do about her jaw. neuro has increased her lamictal in hopes that we can start weaning banzel soon. we see her other neuro in a few weeks so im anxious to see how that goes. other than that everything has gone well shes still sleeping in her own bed and that has been the best decision we have ever made.





Thursday, October 16, 2014

new bed

lexi has been okish. shes been grumpy but today my mom said she was happier than she has been. im praying she has turned a corner and wont be as grumpy. i have no idea what is going on with her lately. seizures havent been as bad im seeing them fewer and less often. she could still be having absent seizures and complex partials that im not seeing but i cant be with her at all times at night and school. im thankful for no tonic clonics though so thats a good thing. the biggest news is lexi got her new bed. its a bed by george and keeps her safe inside it. im so happy




Saturday, October 4, 2014

she just wants too be like other girls

here lately iv been having to figure out what the fine line between giving in to certain things and when not to. lately lexi wants her hair down and not up because thats what other girls do. she cant tell me in words thats why but i figured it out by asking her. im all for letting her hair down but then its in her eyes and it bothers her. another thing she is fighting me on is her smo's. her therapists are having to have talks with her because she no longer wants to wear them. but if she doesnt wear them then she falls alot more and that just isnt good. im trying to help her have decisions and let her make choices but its hard because she wants to be like other girls but isnt. she is doing good in school which is awesome and im glad about.















Sunday, September 14, 2014

lots of news

first of all sorry for the lack of updates. i didnt realize i havent updated this month yet but thats because it seems we have been busy. school is going ok for lexi. i learned she is following what other kids are doing including the things she shouldnt be doing. they have a color chart and she thinks its funny to move her clothes pin to the other colors even though she should keep it on green. so the teacher has to keep figuring out how to get her to understand that she should be doing the correct things. they have this reading app on the ipad that shes been working on which is really cool. shes even able to work on it at home which helps her to progress. i think this year is going great so far. medically she is doing good. shes weaned off vimpat which is a seizure med so now she is only on 3. since being off vimpat we have been seeing more absense seizures but as long as they arent the tonic clonics im ok with dealing with them. she is having surgery on tuesday for a supraglottoplasty which is thinning of the larynx. im hoping it helps her with her sleep apnea. other than that everything has been going good. will update soon again



Sunday, August 31, 2014

things are going great

lexi loves school. she is becoming more social and helpful as the days go on at school. her teacher i believe is the perfect fit for her. she is also becoming more independent where she wants to do things by herself and not want me to help her. heath wise shes doing good we have weaned her off of risperdal completly and we are weaning her off vimpat again. so far with the weaning i havent seen any increase in seizures so that is a good thing. she actually has had a cold and has handled it very well so thats a good thing. now if only she would sleep through the night in her bed i would be very happy

Saturday, August 16, 2014

back to school

Lexi went back to school this week. she woke up at 6 and got ready and was constintly waiting and watching for the bus until it came at 730. then she took off running for it without her stuff which i thought was cute and funny. she so far enjoys going which is great. although iv never had a problem with her going to school since shes been going since she was 2 days shy of 3. other than that things have been great. no major seizures and i think shes been seizure free for a few days even. i say i think because i could be missing some at night but at least its not the tonic clonics. here are a few newer pics. shes growing so fast




Saturday, August 9, 2014

waiting

so last weekend lexi had 2 tonic clonics that lasted over 20 minutes each so she earned herself a trip to the er and then was transported to the childrens hospital where her neuro is. everything was fine we just stopped weaning her vimpat that we was trying to get her off of and increased lamictal as well. we are hoping to be able to try and wean off vimpat soon but it all depends on lexis body. we went and saw pulmonolgy and he changed her inhaler to something different in hopes it will help her through the allergy season with her asthma. i called on friday to see where we are at at getting her pulse ox and the person at the home medical place said she has to get a different prescription because it doesnt say the right thing. ugh what ever just hurry and get it for us so i can watch her better at night with her seizures. i also got a phone call that her developmental ped put in a prescription for a special needs bed so hopefully her insurance will approve it soon  because she needs a safer place to sleep and when she has seizures as well. i have a feeling insurance will try and deny it which will probably happen but i will get enough drs and therapists to back me up that she needs one. i just hate waiting to know if and when she will get it. i mean like the pulse ox. we have been waiting almost a month and they havent even submitted it to insurance yet and i know insurance will try and deny that as well. just stupid. like we are still waiting on medicaid to approve her therapies still. they suspended them and therapy has been trying to get them to approve it but so far no. luckily she has secondary childrens or we would be in trouble since she needs therapy.

Friday, July 25, 2014

restless night

so after surgery yesterday lexi was in a lot of pain. i know she had surgery but every time shes had surgery before she was fine after ward. but yesterday was hard to keep up on the pain med. she didnt sleep that much last night and then was up at 2 playing. today was another day of pain which im happy i cancelled her therapies so she could relax. i'm hoping she can sleep tonight and the pain will lesson once i change the dressing tomorrow.




Thursday, July 24, 2014

surgery is done and a lesson

lexi did good during surgery. the surgeon was able to take the whole wire out of her neck. he thought he was gonna have to leave some in since it was coiled around her vagus nerve but he was actually able to get it out. he also opened up her chest incision and when he opened it up there was a ball of grannulation tissue so he removed that as well and cleaned it up. she's in pain but doing ok. the surgeon when he came to talk to me said that hes thinking of writing this up because hes never encountered it before. i told him he should because it would be a learning experience for people. i told him if there was a first for something then my child would have to be the one to do it. the lesson i hope he learned though is i hope he learns to listen to parents better. i may not be a dr but im with my daughter and i know when something isnt right. when this whole thing began i told him and the neurologist that something wasnt right. how do you go from no gran mals in 2 yrs to the worst ones iv ever seen. their answer was oh its her epilepsy getting worse. true her epilepsy is bad but the infection made it worse and they made her suffer. and then when i asked him to just take the leads out hes like we dont want to do that incase she wants to use the vns when she gets older. if shes allergic i highly doubt there is a chance she will be getting another vns placed. now let me say hes not a bad surgeon. he does listen i think he just wasnt exactly sure what to do. i felt at ease when i sent her into the or with him and i know he did what was best for her.

Sunday, July 20, 2014

back from the er

so friday lexi was really tired acting well around 430 her incision on her neck swelled up with puss. then less than 5 minutes later it busted. so i called the after hours number for her surgeon and they called me back 20 minutes later. he told me to just put a bandaid on it and put some bacitracen on it. well saturday it was bleeding and was hard to keep a bandaid on it . i figured eventually it would stop bleeding. well this morning lexi woke me up at 530 and was covered in blood. so i put gauze on it and took her to the hospital. the er dr cultured it, took blood work and called the surgeon. her surgeon said we need to be patient and wait until thursday when he can remove the leads from her neck. the culture shows she still has staph so they switched her antibiotic to keflex and sent us home. i'm so over this staph and the whole wound not even healing. im praying that when they remove the leads that her body can finally heal the way it needs to.

Friday, July 18, 2014

surgery is sooner

this tuesday we went and saw lexi's surgeon who placed her vns. he took one look and said he for sure wants it out and sooner if better. so we scheduled her surgery for thursday the 24th i believe. i just know its this coming thursday lol. he has booked the or for 2 hrs and hopefully it will be outpatient. if for some reason she needs to be inpatient he will have to have her transported to the hospital since he is doing the surgery at the surgery center instead of the hospital. the dr also decided to put her back on antibiotics in hopes that if it is infected it will help. im nervous for the surgery but hopeful this will help her feel better. wednesday we went and saw the dietician and she said that even though lexi has gain a little weight she needs more so we are still doing 2 feeds through the gtube. we are hoping by august 5th she will have gained back the weight she has lost. we will see though.

Saturday, July 5, 2014

long week

on monday night we lost power from the storms we had. we assumed we would get power on tuesday but unfortunatly we didn't get it back on until friday afternoon. let me tell you as soon as we got power i started jumping for joy. i can do without tv but not electric or water. on wednesday we headed down to rileys for an appointment with an epilepsy specialist. unfortunatly that appointment was very nerve wracking. first the dr was behind then she came in and freaked out on how many seizure meds shes been on and how shes not even on the right seizure meds for generalized epilepsy. but the thing that pissed her off the worst was her vns site. she totally freaked out went off on me saying i needed to stand in the surgeons office and not leave until something was done. sad thing is iv been trying to get something done but the surgeon is taking his sweet time. anyways she gets mad and calls the surgeons office herself. well the surgeon wasnt in the office and she went off on the nurse and hung up. the nurse calls me and asks me what does that dr want done. i told her she wants it removed asap and the nurse said well the surgeon is out of town for a week and he has nothing sooner that the 28th. i then ask what about antibiotics since they are pretty sure its infected. so the nurse calls the surgeon before he gets on the plane and he puts her on batrum. we also see the physician assistant on tuesday to see if the surgeon needs to find a day sooner to remove the vns leads. the antibiotics arent helping but if its staph that antibiotic wont work. the epilepsy specialist did say though we are to wean her off vimpat and start her on lamictal so we are doing that and will see her again in 4 months. glad something is being done for her epilepsy

Saturday, June 28, 2014

drama follows me

so on wednesday we went to the children's hospital to have an 24 hr eeg. that went fine we caught 3 seizures so thats good. the drama part comes from the vns incisions again. wednesday her neck started to look nasty and her chest started to swell around her incison. the neuro team at the childrens hospital called infectious disease. infectious disease came up saw her and called to the hospital in our home city and got the records from the last time. based on that their consenses is that the leads are infected and they need to come out. and the reason her chest is swelled is that their is a pocket of infection there as well. well they called neurosurgery and neurosurgery cant take them out the surgeon has to. they called the surgeon and he told them to tell me to call and get her scheduled. i assumed she would be getting them out sooner like this week but nope he scheduled her for the 28th of july. so then i called the neurology nurse and told her and she is going to talk to the vns rep and the surgeon on monday and see if she cant either get him to remove them pronto or put her on antibiotics. the thought is that its staph infection like before and if she doesnt get it taken care of shes going to get really sick. my thought as well but i cant seem to get the stupid surgeon to listen to me. ugh

Saturday, June 21, 2014

strep infection ugh

so a few days ago lexi got what i thought was a diaper rash. so i started using cream and even antifungal cream when the diaper rash meds weren't working. well wednesday night it got so bad she started crying and was bleeding from it so i got her into her pediatrician on thursday. her dr took one look at it and was like thats strep. i didnt know you could get strep on your body but i guess so. so now lexi is on 10 days of antibiotics. just frusterated since she just got over a staph infection last month and now has strep. other than that lexi has been good. shes in a phase where she has to change clothes 20 times a day no joke. its annoying but at least she puts the clothes back in the drawer instead of in the dirty laundry lol. shes also not sleeping at night not sure what is going on with that but hopefully she begins to sleep again since the less sleep she gets the more seizures she has.

Sunday, June 15, 2014

another month gone by

im not good at keeping up with this blog as you can tell but then again i doubt many people read what i write  anyways. since the last time i wrote lexi has stayed out of the hospital. shes had seizures but they are controllable. we had to take her off of depakote and switch her to topamax because of the major anger issues caused by depakote. it was horrible iv never seen lexi act the way she did on depakote. we are scheduled for a 24 eeg down at the childrens hospital on the 25th and then we see a intractable epilepsy dr on july 3rd. im anxious but hopefully we will get more answers soon. this week we see the neuro and developmental ped and i have a few things i want to talk to her developmemtal dr about so its good that the appointment is this week. besides all of that she has finished her first year in kindergarten. she will be going and repeating it again next year in hopes she will progress enough. im glad its summer and that shes able to have some fun. not sure why the other pics on my blog disappeared but i will be posting some






Wednesday, May 7, 2014

just when things couldnt get worse they did

two weeks ago i noticed lexi's vns incisions start to swell. i took her into the surgeons office and he said he never seen anything like it but it was probably a reaction to the dermabond they used but as a precaution they put her on cephalexin. then over the weekend it got worse and last monday it actually opened and started bleeding. we went back to the surgeons office and seen the physician assistant since the surgeon was in surgery. he told me he wasnt sure what it was but to come back the next day to see the surgeon. went back tuesday and the surgeon said it looks better and it will be ok as long as you put antibiotic cream on it. well wednesday the 30th lexi had a 6 minute tonic clonic seizure at school so i had to leave work and pick her up. a few hours i decided to check her incision on her neck and when i peeled the dressing off her leads to her vns was out of her neck. so i hurried packed up a bad and rushed her to the childrens hospital 40 minutes away. once there they admitted her and got her ready for surgery the next day. thursday she had a 2 hr surgery to remove the vns generator and put the leads back in her neck. they also put a wound vac on her incision on her chest to help it heal faster. when they took the generator out they found puss around it and took cultures of both incisions. once done with surgery they gave her antibiotics and called the infectious disease dr to come and see what antibiotics would be helpful. we pretty much just continued to give antibiotics until saturday when the results were in that she has staph aureus infection. the infectious disease dr decided to have her get a picc line in on sunday so she could get antibiotics for a month. so now she has 2 antibiotics in which will be given for 30 days straight. we are hoping to save the leads but the infectious disease dr wasn't to happy that they kept them in. we was released on monday after getting everything set up to come home. we have 2 appointments today one with infectious disease dr and one with the neurologist and then tomorrow we have a wound care appointment and a followup with the surgeon. to say the least im very upset that the surgeon didnt listen to me when i told him something was wrong. lexi didnt deserve this to happen.

Monday, April 14, 2014

seizures are very unpredictable

so last week was just hard lexi had more seizures but nothing we couldnt handle. she had her vns increased twice last week to try and get them under control. friday however she decided to change it up. we went to therapy and during occupational therapy she said she had to use the restroom which is no big deal. she went in and shut the door and i left her be. a minute or so later i decided to go check on her because i didnt hear her which is odd. opened the door and found her sprawled across the toilet. my first thought was lexi get off the toilet and stop messing around. well when she didnt respond i picked her up and saw she was seizing. so i pulled her pants up and took her to the therapy room and laid her on the mats. she continued to have a seizure for over 5 minutes and she kind of rested for another 15 but after that was fine like nothing happened. this just tells us we now have to be even more careful and watch her very carefully.

Monday, April 7, 2014

scary event

its been a month since i blogged. i have tons of things to update just never enough time to. lexi had the vns place on march 24th to help control the seizures. when we placed it we couldnt have the vns be turned on because she needed 2 weeks to heal. well fast forward to thursday. thursday night things was going ok she went to sleep around 630 not a big deal. around 845 i went to check on her like i always do and she was having a gran mal seizure. that one wasn't a big deal i timed it and once it ended i went to take a shower thinking that i didnt need to worry about another seizure for a while. well when i got out of the shower i went to check on her again and found her in another gran mal. i timed that one and i thought it was over and went to message my friend back. i had just sent the message and heard lexi start coughing when i went running in there. when i got to her room she was in a full blown tonic clonic. she starts shaking very violently and went blue on me so i ran got my phone and called 911. they came and gave her ativan which stopped the seizure as she seized for over 40 minutes. we had her taken to the closest hospital where her heartrate was over 200 at one point. that hospital called the childrens hospital and they had us transported to that hospital as thats where her neurologist is at. friday the neurologist came in and turned the vns on early and upped her banzel. she has had a few seizures but nothing like thursdays. we upped her vns today in hopes to keep working on getting it at the right setting. this just shows that epilepsy is very unpredictable and can change in a heart beat

Sunday, March 2, 2014

time

time is getting away from me. february 19th lexi turned 6. she had a good birthday and got lots of new toys. she is learning her letters and is learning to copy them when she sees the letter. she is almost potty trained finally. the only problem is her bowel movements. usually she does really good and goes in the potty all the time but here lately shes been going in her pants. now for health update. she had her eeg on the 17th. they found slowing of her brain and she had spikes in her central and temporal lobe. they said that if she would have been hooked up longer she probably would have spiked in her frontal lobe as well. usually she only spikes in her frontal lobe so that was a little dishartening. we did decide to start weaning her trileptal because we arent sure if its helping her at all so we will get her off of that soon. we meet with the doctor who will put the vns in on the 11th and hopefully get a date for the vns placement. we then see her neurologist again the 12 as well to see if we can start weaning the trileptal pm dose. the 18th we will have an mri to check the cyst in her brain one last time just to make sure thats not a reason for increased seizures.

Wednesday, February 12, 2014

neurology appt and ent

so we went and saw lexi's neurologist . she increased banzel to 3ml,3ml and 10 mls. lexi has an eeg on monday and then she sees her neurologist again the 25 for results of eeg. at that follow up she will then talk about referring us to the person who will do the vns. now for ent. the new ent is very nice. she said that she needs to get the sleep study and look at the video from the bronchoscopy. she said that the sound i hear when lexi is sleeping is her obstructing and that she needs to gather all information before scheduling surgery. she said the surgery will require a hospital stay and thats why she wants to make sure it will benefit lexi. she also said that its a possibility that her chin is small which is causing her to obstruct at night. hopefully after next week she will make a decision

Sunday, February 2, 2014

january update

didn't even realize that i haven't updated since Christmas time. oops the beginning of january we got hit with a big snow storm and artic blast so we was out of school for a few days and out of work as well. at that time my car decided to hate me and break down as well. got it fixed and all is good. janauary was a bad month for seizures. we have increased her banzel and decreased keppra and im thinking keppra was controling the seizures more than i thought. she is going to be having another eeg sometime soon to see what it says. we also just started her on risperdol to see if that will help with meltdowns. im hopeful because something has to give. we just had her iep meeting and the teacher says shes in the 3rd percent of what she should know so we agreed to hold her back and have her repeat kindergarten again next year. the autism specialist said that kids with autism have trouble retaining the information so that explains why one day she seems to know something but the next day she doesn't. she has made progress with writing her name and with making friends. they will be working harder with the ipad and are actually going to see if the new program called lamp will work better for her than proloquo. im all for trying a different talking app if it will help her communicate with her peers and in class. im glad she is learning and is making progress even if it is slow progress. this month her birthday is coming up along with 3 dr appointments so far with probably more being made.