daughter is multiply disabled

December 14, 2003

Mary Jane,

Always remember that you are a special mom! And you know your daughter best, better than any doctor knows her.

I had a daughter with very similar conditions. She was verbal to a point, but when she hit puberty, she stopped talking, and also whined all the time. They put her on tranxene. The doctors said it was puberty. She can't control much, but she can control who she talks to. They put her on Paxil. She started having more seizures, they added 3 new meds. one of them caused her hair to start falling out. She started screaming, they added valium, diastat, and risperdal. The risperdal made her jerk and make grimaced faces, they inserted a baclofen pump into her abdomen. She didn't sleep, so they put her on ambian. I wanted to cut back on some of this hellacious medication, the State of Florida said to follow the doctors orders, exactly as written, or she would be removed from my home. (I always felt as if she were used as a guinnea pig, to test new pharmaceuticals) She only lived to be 14. I truly believe she would be

alive today, if I had followed my heart instead of doctor's orders.

Do you include her on outings? Shopping? Restaurants? Just sitting and watching TV? She is still small enough to hold on your lap. Does she sit at the table with the family at meal time? Do you bolus feed her or do you feed her with a pet pump? What formula is she on? If it is Pediasure, I think it has a lot of sugar in it. Ensure, or a pre-digested one like Peptoman Jr. might be better. Since she does not "taste" the formula, it doesn't need to be sweetened. Make sure the water you give her is pure, never tap water.

Try looking at the nerve formula in Doc's file. You could mix powdered herbs with water and give through her g-tube. Chamomile tea is soothing. Valerian is calming, as is St. John's wort. I think lobelia would be helpful, but your neurologist may not agree. I hate to say it, but whatever you give her, you will need to clear it with the medico's, especially your neurologist, as the State can step in and remove your child if they think you are not providing proper care. (I know this first hand). Perhaps if you add a licenced naturopath to the list of specialists ...Doc...feel free to jump in here...

hope this helps...windflowerMary Jane <gr8mommy22girls wrote:

My youngest daughter, Hannah-age 10, is multiply disabled. She's also in the middle of puberty (beginning at age 7 which isn't too unusual for children with neurological issues) Here's my dilima though. She whines (she's non-verbal) almost constantly anymore (for the last 6 months) and in trying to figure out why, I've decided it's a combination of behavioral (has become a habit with her), hormonal (hence the puberty issues) and because sometimes she just hurts (she's also immobile) Just when I thinks it's one reason... she acts like it's because of another. I'm stumped! We've ruled out anything medically wrong and she stays pretty healthy.All the suggestions the Drs. make... I'm already doing. I really believe if she could roll her eys, stomp up the stairs and slam her bedroom door like her 13 yr. old sister... she'd

feel better. But she has no outlet for the crap that goes along with being a preteen. My question is this... is there something herbal I can try to enhance her mood? Everything I've looked into is for menoposal women. I admit I know nothing about herbs and am confused by much of it. I'm just looking for people who do know and have suggestions. I want my happy little girl back.Important info... she 10 years old and weighs 45 lbs. She's also g-tube fed so anything in pill form has to be crushed and disolved. Liquids are much easier on me. )Thanks in advance, Mary Jane and Hannah

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