Epilepsy, food allergies, chronic kidney issues, ADHD, & learning disabilities..

[BusomBuddy]

That's what my family is juggling right now, plus chronic ear infections with outpatient tubes in yesterday.  I have 4 kids...I am drained.  They all have seen specialists or have appointment with specialists with in a few weeks.  You should see my calendar.  There isn't one day that isn't filled with something.  I had to quit my job and move in with my parents for a number of reasons, but this is one of the biggest ones...to get every kids issue situated.  I can't wait to have one nights rest and one week with no doctor appointments, teacher confrences, stat meetings, tests, etc.... 

I have to make dinner now but will go into detail later.

[MJ]

Oh My!  {{{{BB}}}} My prayers and thoughts are with you.

[WyattsWunch]

Okay, I'm officially done whining about how hard autism stimming symptoms hit this house in December! I need to take a nap just reading your posts! Get thee to a spa, woman! You've earned it!

[BusomBuddy]

Sorry that I didn't come back and elaborate.  Christmas week was hectic.  We will get back to some normalcy today.  I volunteer at a non profit organization (so that my resume shows that I am doing something) for 20 + hrs a week.  I truly look forward to "going to work".  It makes me feel normal, some what.

My kids:
Zarah age 9
Billy age 7
Nevada age 6
Blue age 2


Nevada was diagnosed with 2 forms of epilepsy in 2007 when she had a 15 minute long seizure where she couldn't breath very well (she was blue) and ended up having the paramedics work on her for a bit before she was stable to go to the hospital.  They saw popcorn on the counter and swore she was choking, but being medically trained and the fact that she didn't have any of the popcorn yet, I knew it was a seizure.  We were on vacation at the time in Kill Devil Hills!

Prior to that, she was diagnosed with food allergies:  Pea nut, Tree nut, and Mango (in the cashew plant family).  I remember talking to Blue Eeyore at Bf.com about it and she warned me about the mango.  I am having a terrible time with her school.  They keep allowing nut products in the classroom!  One time the entire class had an assignment of bringing their favorite nut to school and sharing it with the class because the letter of the week was N!  They are idiots.  I couldn't send her to school that day! 

I can't find a play group for Nevada.  We tried Girl Scouts, but they tried to have nuts as a snack when I asked them about it there was a problem with not offering it to her but to the rest of the group.  HELLO!  Ever heard of cross contamination.  The co-leader is an RN in an ER and told me of her own anaphylactic reaction to mango and her ER experience.  They just didn't care about her safety, so I had to yank her out.

So, Nevada has to have an epipen and diastat gel with her at all times.  Expensive!  Recently she has had some loss of bowel while sleeping along with "out of it" behavior after that makes the pediatrician and I think she's having nocturnal seizure activity.


Zarah had VUR which is short for very long words that mean kidney reflux.  She's had numerous kidney infections.  She was on abx for years.  She had VUR since age 3.  She had surgery to correct it in the fall of 2006.  She had a kidney infection a year later that landed her in the hospital with sepsis.  Since then she has had 3 more kidney infections, one of which almost landed her in the hospital.  With every infection, she has to have an ultrasound to check for scar tissue/damage.  With every infection I fear complications (even worry about it later in life)  We found out this summer that her right kidney is smaller than her left kidney.  It has to be monitored for appropriate growth. 

Zarah is gifted, but this new school doesn't appreciate it and only cares if the kids pass the test and she is always pressured with timed tests.  A teacher made fun of the way she walks to the bathroom during a parent/teacher conference.  I hit the roof!  She has bladder spasms, she has pain, she sometimes has go 4+ times in a row.  How could she make fun of my child!   The teacher also said she was disruptive in the class and I had to ask her how she was disruptive 3 times before she told me that she doesn't participate in class and that it was a form of disruption.  WTF!  UM, she was new at the time, new state, new city, new neighborhood, new home, new school...NO FRIENDS!  All of her teachers are jerks and only care about the testing that is done!  It's not my kids fault that this state is low in test scores.  It's a poor state, btw. 



Billy had meningitis as an infant.  It was viral.  His hearing is checked every year. We were told that he would have problems when he got older and it was just a wait and watch thing.  I am please to say that he is in great physical health.  He has asthma, but it's mild.  He has a speech problem (minor), but he has a tongue thrust problem and has to see a speech pathologist and have orthodontic work done.  His hearing is okay/average.

Billy can't read.  He loves to be read to and tries very hard to read.  He has a dysgraphia, dyslexia, or some kind of processing problem.  He is being tested.  The school is being great with modifications, documentation, etc.  They are so helpful.  He is also very frustrated, angry, impulsive, loud, can't focus, can't follow directions, etc...  The pediatrician just DXed him with ADHD.  I don't want him medicated, but he will be on it so we can use it as a tool while he goes to therapy. 

Christmas week was a nightmare, I feel like the meds made him worse:  more impulsive, more agitated, more loud.  But...he actually sat down for a couple of hours and put together a plane made from teeny tiny Lego's and I was able to cook Christmas dinner with no hitches.  He's never been able to do that before.  I am so torn right now, and I feel so guilty, because I was on ADD meds as a teen and hated the way it made me feel.  Plus my parents thought they could controll me with a pill.  I am terrified I'll do that!


Blue had chronic ear infections.  I tried to avoid surgery.  We've been going to the Chiropractor for over a year and it worked.  But when we moved, it didn't work.  There are too many allergens here and too many smokers.  I think we all have caught every bug at school and daycare.  So, she saw an ENT and tubes were done.  She covered her ears when I coughed the other day and told me I was too loud. 


So, I am feeling better now...I got it out, the sick kids part.  We have some specialist appts coming in the near future.  I'll update.  Allergist-part II, EEG, Neurologist, Urologist, therapist, psychiatrist (after a few therapy sessions), & ENT Part II.  Later comes, ENT (other kid) orthodontist, audiologist, speeth pathologist, & speech therapist.

I need to go get my shower and get ready for the day...bye.

[sarsie]

Just wanted you to know I read up.    I am PMing you.  ((hugs))

[WyattsWunch]

What a little trooper! I hope you have an awesome support group!

[Crabbie]

Wow that is a lot, you seem to be handling it though. Remember if you need anything to judt holler!