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Parents Support Group for Kids With Special/Medical Needs

Discussion in 'Medical Marijuana Usage and Applications' started by Cen_Cal_Care, Jan 20, 2015.

  1. First off thank you all for taking the time to read this.I would like this thread to be a support group for parents or categivers.If you use cannabis to help with or treat any condition you're child has please post them here :)

    Backround: my daughter was born with alot of abnormalities heres a quick runddown currently she is 4yrs old she can not crawl,walk,talk,eat or hear very well.

    She was born at 38+2 weeks during what seemed to be a normal ultrasound they found Intrauterine growth retardation (IUGR) so a amniocentesis was done and showed a normal karyotype 46,xx. Since there was concern of IUGR we were induced that day.

    12hrs after birth she was not nippling after investigating we found she had cleft pallet which is a hole in the roof of you're mouth other thing found are:
    multipule ear tags
    foot polydactyly (split 5th digit)
    right ventricular hemorrhage
    long thin ribs
    abnormal cervical vertebrae
    micrognathia (small lower jaw)
    failed ALGO
    termination of conus medullaris L3
    claw apperance (hands can not fully open).

    Now me and her mom suspect:
    sensory processing disorder
    scoliosis.

    Onto the hard part GENETICS:
    She has a 17q22-q23.1 deletion the size of 2.4 megabases.
    missing genes are
    Mpo,PTRH2,SFRS1,C170rf71,CLTC,LPO,MKS1,MRPS23,MSI2,PPM1E,PRR11,RAD51C,SEPT4,TEX14,TRIM37,VE2F1,YPEL2,
    BZRAP1,C170rf47,CUEDC1,BHX40,
    DYNLL2,EPX,FAM33A,DDPD1,HSF5,
    MTMR4,OR41,OR42,RNF43,
    SUPT4H1 and TMEM49. Whew that was alot to type :)

    So far she is the only person in the world to be found missing these genes.Some of these genes functions are still unknown.FISH testing has been done on me and her mom and the deletion was de novo.

    Hopefully one day we will beable to find someone with the same deletions never know I could meet them here on GC :) Till that day comes I will try to learn as much as possible about the human genome.
    sorry for writing a small book here theres more issues with her but my hands are cramping lol.
     

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