Saturday, October 7, 2017

seizures

so since my last update lexi has had numerous seizures. shes gone into status 3 times since starting school. trileptal isnt helping and we ended up adding zonegran but that too aint helping. instead its causing headaches and stomach pains. but all they want to do is increase the medicine more but i put my foot down. they arent the ones who have to deal with her crying from headaches and belly aches everyday. she ended up being kicked out of kidscare due to her having seizures which sucks but my brother is getting her on the bus so that works out good. i feel we are missing something but they dont seem to want to listen to me and want to just ignore my thoughts. i told them shes very shakey in the morning and dizzy but they dont have any reasoning for it. and we cant get a medical stroller approved because of course shes able to walk so medicaid denies it. maybe she should be extreamly dizzy in front of the people who make these decisions then maybe they would rethink it. her behavior has gotten better on the risperdal which makes me and her dr so very happy.

Tuesday, August 8, 2017

updates

so in july we met with the epileptologist and had a 24 hr eeg done. the 24 hr eeg showed she is having spikes all thru her temporal and occipital lobes. it also showed she is having generalized spikes so that rules her out for the epilepsy surgery. she also cant have the vns done because of too much scar tissue. so we decided to start her on trileptal in hopes it calms her moods and seizures. so far its not done anything but we arent giving up yet.if this med doesnt work we can try zongram or depakote again. we then went and saw a pychiatrist last month as well. we upped her adhd medicine and added risperdal and a med we can give as needed to help calm her down. i have seen some changes so thats good. lexi starts at kids care before and after school tomorrow instead of going to familys houses. im praying she does well there and listens so i can give my family a break from watching her during the school year. addie will be going to daycare full time in 2 weeks which then means i can offically go back to work full time. i have been working 4 days but now i can work 5 except when lexi has appointments. school offically starts tomorrow so im praying its a great yr

Wednesday, July 5, 2017

a month has gone by oh my

so last friday we went to riley childrens hospital to meet with the neurosurgeon. she didnt say no completely to the vns but she said because of what happened she wont put it in yet. she wants us to see the epileptologist and have the video eeg the 14th and see if her seizures are still coming from the right side. if they are coming from the right side then lexi might be a candidate for epilepsy surgery. but her seizures must come from the right side. if they arent then there is no chance for epilepsy surgery. she agreed october was to far to wait to see the epileptologist so we went to the scheduling desk and they emailed the epileptologist and she agreed to see lexi this friday (7th). im hoping she will agree to wean her off the banzel and maybe try different meds but we will have to wait and see what she thinks. im hoping she will take over care since they have more things they can do at this hospital than at the one her current neuro is at.

Saturday, June 3, 2017

school is over

last friday was the last day of school which really stinks for kids like lexi. lexi thrives off of going to school so summer break is always hard. but she made progress this year with the communication device they have for her at school. the speech therapist is going to try and get another device approved since medicaid denied the one we wanted. the one she is trying to get approved is almost like the one we wanted but cheaper so we are hopeful. we did get an appointment with the neurosurgeon for a second opinion on june 30th. im nervous but hopeful this dr will help us figure out what to do for lexi or will know who to refer us to for help. lexi had a 10 minute plus complex partial on thursday night which freaked me out only because i have never seen one last so long. her seizures usually only last a few minutes. the dizziness is also bothersome because she gets so dizzy before one that she cant walk and then afterwards stay dizzy and cant walk either.

Sunday, May 14, 2017

the good and the bad

so good news last week is i talked to the person with vns again and lexis neuro has agreed for a 2nd opinion about the vns. we want to make sure every option has been looked at for lexi and if shes able to have the vns then lets go for it. we will see dr smith down at riley but it wont be for a while most likely due to the fact dr smith is a very good neurosurgeon and is very busy. so thats that. yesterday i went to change out lexis g tube like i have been doing since she got it and i cant get it out. so now i have to call gi and see if we can be seen and see if he can get it out without having to go in for a procedure to be removed. its never been like this so im not sure what is going on. also here lately lexi is picking at her skin and making herself bleed which is in turn messing scaring her skin. i dont know how to get her to stop. iv gotten her fidget toys but that dont seem to help which sucks cuz shes hurting herself

Sunday, May 7, 2017

addie update

addie is now 20 months on this coming tuesday. she has grown so much in the last yr and a half. she now weighs 25lbs and is 32 or so inches. she is talking up a storm. she loves to play with babies, and blocks. she loves the outdoors and will sit herself down if you say its time to come in. she is a great helper and loves to get into everything lol. her favorite saying is uh oh and baby. she started daycare last month and absolutely loves it and has since day one. i love the fact she gets time with peers her own age. she has such a great personalty i love it. parenting a child with non special needs is so much different.








dr appointment update




so tuesday we went and saw ent to see about the vns being placed again. basically he said he wont do it again because he feels her body would reject it again. the vns rep said we might look into allergy testing but honestly it could be a foreign body rejection and not allergic reaction to the metal. so i then called neuro and she is looking into other options since lexi is still having seizures. we havent been able to get the banzel yet because one pharmacy says they cant give it to us a specialty pharmacy has to. well called the specialty pharmacy and says a different pharmacy has already filled it. but cvs never filled it. so who knows whats going to happen. i also kinda demanded a longer eeg than the few hr one she had in august because i want to know what is going on over a period of days. so we shall see what they come up with. they are suppose to let me know tomorrow.

Sunday, April 30, 2017

long over due update

so since the last update we moved lexi to a new school for mix ability kids. it is a better school for her but her epilepsy has gotten worse since moving to the new school. at first she was having more dizziness and throwing up but now its absence, complex and more recently she is having tonic clonics again. the last one being yesterday. she scared the daylights out of me last sunday when she had a tonic clonic in the car that lasted over 5 minutes. we ended up going to the er and they gave her ativan before sending her home but that didnt stop the cycle she was in. she had seizures m-w and then went 2 days without any noticable ones and then the tonic clonic on saturday. this coming tuesday we will go meet with ent and see if its logical to put a vns back in lexi. im curious to see what he says since she had alot of problems the last time and had to have it removed. so we shall see. we did add a 3rd medicine in hopes it helps her somewhat. i know its a fact of life she will have seizures but the fact that they are coming more often is disheartening. school is going good for her when shes not having dizziness to where she has to lay down so thats a plus side. we are currently trying to get her a special needs stroller and communication device but so far both items have been denied. i guess just because lexi can walk they assume she doesnt need a stroller but she is 60 lbs and about as tall as me so when she has a seizure its hard for me to carry her. so im praying we will get them soon. ill try and keep you updated but heres an update for now