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Old 06-06-2001, 04:10 PM   #1
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Join Date: Jun 2001
Location: port chester NY usa
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litacarlucci HB User
Question Help from a Doctor for my daughter

My daughter is a 30 year old profoundly retarded girl with chromozone disorder (14 and 9 chromozone attaching to each other). She also has agenesis of the corpus collusm, microcephly, and seizure disorder (mild).
Problem: for most of her life, we have been trying to stabilize her bizaare condition. After 30 years of observation, I believe that the vary anticonvulsants that are supposed to correct her mild seizure disorder are putting her in a hyper state and inciting a condition of insomnia which can last for three days and nights. Durring this period she becomes dehydrated immediately, has urine retention, and as the days go on, she becomes spastic and hysterical, making it difficult for her to eat until the point of exhaustion. At the point of exhaustion, her anticonvulsants will initially act as a sedative, and she will fall asleep. After 2 days, the cycle begins all over again. Except for one drug, DEPRKOTE (375 mg) has contained this condition. Unfortunately, she has been screaming, and her amalyse is up, and there is swelling of the parata gland. The Dr. took her off this medicine, and the cycle started over again, since the other drugs do not help the condition. Recently, she has been put on 800 mg of TEGRETOL (split three times per day) 60 mg of PHENOBAROTOL (30 mg twice a day). As of today, 150 mg of TRILIPITOL and at night a brand new drug ZONEGRAM (from Japan) which does not help (the doctor is decreasing this dosage to 200 mg). Prior to all of this she was on 375 mg of DEPRECOTE and 300 mg of KEPRA, and apparently the new drugs are not covering her old drugs, putting her into withdrawal and excessive sleeplessness.

Has any doctor dealt with a case history like this, or can anyone help me in any way to help my daughter from suffering?

She is presantly seeing doctors at NYU, and they indicate that they have never experienced this before. I have been dealing with this condition for over 30 years, and am very tired. She can not be placed in a home or respid, because of the uniqueness of this condition.

Lita Carlucci


 
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Old 06-20-2001, 01:16 PM   #2
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Join Date: Jun 2001
Location: Niles MI United States
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I know that you feel like you have reached the end of the line,I don't know if this can help you,but it might be worth a try.My new grand daughter has Aparts syndrome and I was looking for a doctor in the area where she lives that is a specialist in this feild.I found this site,DoctorDirectory.com.There are listing for All medical problems with a site map for your area.My prayers are with you,and hoping you can find some Dr.in this field of genectic imbalance.

 
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