More questions for Jill

Sandi has asked these questions....

I too have a child like this! my questions are

1- what age did you know something was not quite right?
JILL: I would say I knew at the age of 3. Up the age of 3 Alexa was so well behaved when we took her places and we did take her everywhere. After age 3 I noticed the trouble starting.

2- What meds, if any have you tried?
JILL: Because she does have Epilepsy we have had to be careful in trying to many drugs. Our first medication was Focalin and then we switched to Focalin XR. The medicine worked wonderful for a while but it was upsetting her tummy so bad. After about a year of taking Focalin it completely stopped working the way it should. We are now using a patch called Daytrana and so far it is great. The only side effect is the let down after 8 hours of medication that is released. She is also on Clonadine for bed time to help her sleep a full night.
3- Have the meds helped, or do you think therapy has worked better?
Jill: We see a doctor not a therapist. We mostly work with her at home with the doctors guidance. Medication has been our savior. Alexa can not function with out it. I have always been 100% against medication until I saw how badly Alexa was suffering.

Does the school work closely with you on behavior issues?
JILL: After a rough ride in kindergarten the school is finally on top of things. They finally gave her the state testing she needed and she is receiving therapy in school for her learning disabilities. The school basically made her kindergarten year a big waste. They were observing the problem instead of taking action. I had to fight for her to get the help she needed. Alexa has disabilities in academics and was behind about 2 years. Now with the help she is getting she is close to her target.
Have you had to modify how she eats in any way?
Jill: Absolutely no red dye. Children with ADHD should not have any red dye in their diet. This includes all orange dyes as well. Also we stay away from sugar. She has an immediate reaction to sugar. Thankfully she can live without it because she doesn't have a sweet tooth.

I have also been asked some question by my friend Ginger.
My question is How do you cope when you are having a bad day and Alexa comes home from school having a melt down or her meds are wearing off? How do you hold it together?

Jill: The truth is, it's really hard. For one, when we see the signs that she is overly stressed we try not to let anything trigger the melt down. We sometimes will actually just leave her to herself and try to avoid too many conversations with her. We don't let her get her way with everything but we go out of our way to keep things calm. These melt downs are not like a normal temper tantrum they are horrible. No one in my family has ever seen her go through one and I wouldn't want them to see her like this.
We don't always hold ourselves together so well. This has been harder to deal with than actual medical problems with my both girls at times. On a good day when this happens my husband and I stay totally calm, on a bad day one of us breaks down along with her. These melt downs are very few and far between lately. THANK GOD!
Chocolate Covered Daydreams said...
As she gets older, if you haven't already started, do you work with her on calming techniques?Do you believe in rewards for good behavior?Are you seeing any of those symptoms in Gianna?
Jill: I don't use calming techniques yet, I just try and calm her entire surrounding down. I most definitely believe in rewards for good behavior and I have always probably done more than I should to reward her. So far I have not seen any of these signs in Gianna. Gianna has a bit of Autism that is associated with her syndrome. We are currently working with Gianna to help her.
Christy said...
How does this affect the relationships between the two girls?Do the doctors think Alexa will have to be on medication for this for life?Thanks for answering!
Jill: It is very hard when Alexa is in her moods for her to get along with her baby sister. She loses patience quickly when she is moody. Alexa on a good day is the very best big sister a kid could as for. She is very caring and nurturing to Gianna.
The doctors do believe that this is something she will NOT out grow and will have to stay on medication possibly even as an adult.