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Thread: Update from us

  1. #1
    pepperlc is offline INCIIDer - A Community Creator
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    Default Update from us

    Sorry I've been MIA. We are having major house work done and its eating up my free time. I'm not sure what I would do if I was working right now. I feel like I have to been here all the time. Also Jacob is now sharing his bedroom with his twin Reuben while they are doing renovations in and an addition next to his room. It is unlivable.

    So Jacob's update. He is doing amazing academically. I was so worried how he would do in a 1/2 class but they put him in it anyway with 2 teachers, a regular ed and his special ed teacher. His IEP is all behavioral. He is doing pretty much all 2nd grade work. He even got a 100 on a 2nd grade social studies test. They gave him the choice of the 1st or 2nd grade test and he picked 2nd grade. Thankfully the ADHD isn't interfering with his school work.

    Socially and behaviorally things are going much slower. He is very shy except with family. With us and friends he has known a long time you would never know how shy he is. So when kids at school or near home want to play he doesn't really talk to them. He will join in though.

    Today we all went to the park and there were 3 kids there they know from the school bus. They live on the opposite side of the major neighborhood road. The 2nd grade boy was really excited to see my boys there and was calling to them by name. Jacob had his bike and the boy ran home to get his. They spent quite a bit of time riding together but Jacob never talked. I do think it made him happy that someone wanted to play with him. I know it makes me happy.

    We just had to up his Intuniv dose to 3 mg. We had seen a lot of meltdowns in the morning and evening so the doctor checked his weight and felt that 3 mg was a more appropriate dose for his size. He started the higher dose this past Saturday. This is in conjunction with 15 mg of Vyvanse. We have not changed that dose and hopefully won't need to.

    The nice thing about Intuniv is it is non-stimulant. But the bad news is right now my INS won't pay for it. We have paid almost $350 over the past 2 months for the drug. My doctor gave me a month of samples to give me time to fight them but that only works if he gets me the letter I need very soon. Called today to remind him again. I think since there is no other alternative for him they will cover it. Cross your fingers.

    The first 2 days of the higher dose were fine. Even Monday was ok but not great. Tuesday and Wednesday (especially Wed) were brutal. He was so tired but wouldn't nap. Had tons of meltdowns, hitting, peed in his pants twice which usually only happens when he is either exhausted or sick. He just doesn't feel the sensation. He also wouldn't eat much. Not a good combo.

    But today was an improvement. There was much less implusivity and aggression. Still a lot of distraction but I'll take that. He slept well last night and hopefully tonight too. He has been sleeping in the basement because he got kicked out of his own room for hitting and throwing toys at Reuben at bedtime. Hopefully another day or so and he will be ok to go back to his own room. I think the 3 mg is the right dose but man its brutal dealing in the adjustment period although the time before it was no piece of cake.

    I hate when I am mad or angry or screaming all the time. It does no one any good but when Jacob is that off, it sets Reuben off. Reuben is the biggest instigator and it will take time to get him to stop once Jacob is feeling better. Faith feeds off the negative energy and then whines at me or screams at them all the time. Not very pleasant.

    So that's what's happening here. Thankfully the additions are about 2/3rds complete. It will be good to have the upstairs clean and finished. The bad part is when all of that is done its time to move to renovating the kitchen/powder room/dining room spaces. I don't know what we were thinking. They said they hope to have everything completely finished by the time school gets out on June 25th. I hope so because it least it saves me 1 meal 5x a week that I have to prepare out of a make shift kitchen.

    Take care everyone. Thinking of you all. Hopefully I won't stay MIA.

    Hugs
    karen

  2. #2
    sugarsue is offline INCIIDer - A Community Creator
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    Karen, thank you for your update and I am so sorry things have been so difficult. Doing a remodel is hard in the best of situations! I don't have a lot of time right now but wanted to let you know I've read your update and I'm so glad to still be in touch with you. Have you read The Explosive Child? I imagine you have, I read it recently. I liked the concepts in there and it helped me to accept that I need to treat meltdowns and behavior differently than the average parent.

    Anyway, got to run.... I'll be back hopefully before the weekend is over. We are going to Santa Fe for spring break so I have a lot to do to get ready to go.

    Susan

  3. #3
    trek is offline INCIIDer - A Community Creator
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    Please keep your eye on side effects on the higher dosage a friend of mind 9.5 year old ds had major problems with higher dosage increase. He is now off the meds.

  4. #4
    pepperlc is offline INCIIDer - A Community Creator
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    Thanks for the heads up. So far so good.

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