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help us please (4 posts)

Jordanna
Our Expert Our Expert graphic icon
Posted 06.22.09
We recommend that your son meet with a medical geneticist for evaluation. A medical geneticist will perform a physical exam as well as review your son's medical history and your family history. Unfortunately, in some areas, access to genetic services is limited. The American College of Medical Genetics has a tool to find a medical geneticist in your area or relatively close to your area. You can find this tool at the American College of Medical Genetics website. We hope this information helps and we wish your family the best.
jlbryan
Member
Posted 06.23.09
trying to figure out what type of testing I should have done on my son. Quick bit of info. 10 years old, male, dob 4-8-99 ht:5'0" wt: 115lbs. Now the things that have me concerned: ABN MRI, 11-8-5 mm poss chroid fissure cyst or hippocampal sulcus remnant? (Does not enhance) Nephrectomy @ age 4 due to multi-cystic dysplastic kidney, found in-utero, removed due to changes on imaging, solid apearing cysts. Pathology report DX: renal dysplasia, partially cystic and focal necrosis. Enlarged liver, 1.5 cm cyst on spleen, tourettes syndrome, speech dysfluency, distal weakness, GI issues, 24 ph study ABN, due to prolonged (45 min) reflux! duration, NL colonoscopy. Abd distension and intermitten pain, Right nipple small cyst, inverted bilateral nipples. H/o bilateral hydrocele and hernia repair @ age 2yrs. Visual perceptial disorder, can not tie shoes, button shirt/pants. However very accomplished soccer player. Bilateral flat feet, wide, almost web toes, Ability to expand all toes on both feet wide apart as you would your hand, so that the toes are not touching each other. ABN VER study. Wears glasses, dx astigmatism. lactase, sucrase, maltase, palatinase test NL. IGG 552 low. A-1-Antitrypsin phenotype = PI MM. MCH Low 28.7, MCHC High 35.3, Albumin High 5.0, A/G ratio High 1.9 all other labs NL. PLEASE HELP ME FIGURE OUT WHAT TO DO. I do not know what tests to have done, have been trying to get into genetics for over 3 months and still do not have appt. Very limited on genetics in my area, that is one of the problems. No dr can give me any idea where to begin. Please direct me. thank you so much. Oh mother (me) has rare uterine didelphys.
lizliliy
Member
Posted 12.10.09
Thank you so much for your post. My son also has a multicystic dysplastic kidney. He is only 4 months old. I hope you are able to find some answers for your son.
Jordanna
Our Expert Our Expert graphic icon
Posted 02.19.10
A UCLA study reveals the mechanisms in which human genes interact with their environment to increase disease risk. Published in the American Journal of Human Genetics, the findings shed light on why the search for specific gene variants linked to human diseases can only partially explain common diseases.

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