kktacoma
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Location: Tacoma
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Kretschmer Medical Family
Fovgive me for giving the whole family medical profile instead of "my" profile for I really am the healthiest person in this family.
I (Karma) have endometriosis, and a hyniated disk in my lower back. I have lots of neck and shoulder pain that is all blamed on stress. I am only one of two in the family that has not had an MRI to rule out a ACM. No insurance and really do think that the headaches come from stress.
My hubby (Ronald) suffers from OCD, osteo-arthritis, severe reflux and hiatal hernia (nissan fundo done in 99), aspiration and severe asthma, social anxiety, migraines, liver and kidney problems. In general his dr. says that he has the body of a 90 year old man and he is 35
Coriana (12) suffers from aspiration, anxiety disorder (finally talked them into putting her on meds and can't believe the difference), Sensory issues, asthma and some permanent lung damage (we didn't figure out her aspiration until 10, when there was already damage)
Melissa (9) is our sickest kid, but has taught us so much. She has ACM and was decompressed in 06. The decompression caused her to potty train (at 7), and grow, but so far those are the only positives. She still has reduced CSF flow. She suffers from abdominal and head migraines daily.
Melissa also has Hereditary Sensory Autonomic Neuropathy which causes temp. control issues, perephial neuropathy, blood pressure fluxuation, pain sensation issues (feels too much or too little depending on the day), extreme fatigue, swallowing issues, reflux (this on top of the genetic ones), and a mix of low and high muscle tone. She also is legally blind in one eye, sees double often
Melissa has a metabolic issue that causes her to dehydrate in two hours and not use her liquid and food correctly. She just doesn't seem to get what she needs before she eliminates it. They have done every metablolic test in the book since infancy and can not come up with a name. She has all the classic signs of fruity smelling urine, breath, and "off" blood work, but can't find a reason. So for now we treat the symptoms.
Melissa's decompression caused brain damage and she is super sensative to noise and lights. She also has issues with social situations. They call it a non-verbal learning dis-order. It basically means that she doesn't get the non verbal parts of social situations. Her brain makes up meanings instead of looking at the actions, facial expression, situations, etc..., It can be very interesting what she comes up with. She also suffers from bouts of rage. She litterally woke up from her surgery on day 3 and threw her first rage. It was scarry!
Last but not least in the comic of the family Timothy or TJ (5) he has the worst of the families genetic airway issues and is really the one that caused the doctors to put together that is was all a genetic link.
He has severe reflux (goes into his sinus cavity), aspirates, feeding issues, laringial malasia, sleep apnea, and has two airway surgereis before he was 1. Really we are fortunate that as many airway issues as he has we have not had to really do anything invasive like oxygen, trachs, etc. We just really had to watch him when he cried the first year or he would turn purple. Now he is managed great with medication and thickened liquids.
Well thank you for all of the support you give our family and for reading this very long post.
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Karma
Mom to Melissa; Chiari malformation, Hereditary Sensory Autonomic Neuropathy, Metabolic disorder NOS, Non Verbal learning disorder, chronic pain,
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6/7/2008, 11:23 am
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ket85rn
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Re: Kretschmer Medical Family
Thank God he has blessed you relatively good health. Sounds like next to Christ, you are this family's rock! It's no wonder you have stress headaches. What a lot to deal with everyday. I pray God's blessings on all of you. Glad you're here.
Karen 
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6/7/2008, 3:53 pm
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horseshadowrider
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Registered: 03-2008
Location: Washington state
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Re: Kretschmer Medical Family
thank you for taking the time to share this, Karma. It helps us to be able to more fully understand and to pray. You and your family are enduring so much! I can only imagine how difficult this all must be, to be the "rock" as Karen says, to set up appts and juggle appts and be the taxi driver and the nurse and the therapist and chief cook and bottle washer!
I'm glad you are here, too. And you also have a wealth of information you can share, and also with your own health experiences, you fit right in.
God bless you, your family is in my prayers!
love,
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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6/7/2008, 4:00 pm
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Joleen711
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Re: Kretschmer Medical Family
Karma, wow! You do have alot on your plate.But what stregnth you have to be able to take care of your family. It must be a full time job on top of just being a family. When the kids have issues it even makes it harder. Our daughter is Bi-polar and it makes for some really crazy days. But praise God she does not have to take medications. I am inspired my your faith and stregtht that the Lord has given you. Thank you so much for sharing and being a part of this group.
Gentle hugs, Joleen
PS-I have not taken time to read any medical profiles. so I thought today I would focus on that and get to know all of you better.
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6/27/2008, 11:36 am
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horseshadowrider
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Re: Kretschmer Medical Family
Karma, I know you have difficulties getting on the computer, but if you do and you are visiting here, I pray you will post. I think of you every day and wondering how you and Melissa and your husband and all of your family are doing!!
thinking of and prayin for you
love
Virginia
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Virginia
4 plc fracture of the C1, Tethered Cord, (acquired chiari and elongated brainstem resolved by Tethered Cord surgery); atlanto occipital dislocation and cranial settling all due to equestrian accident,
2004. CC Fusion upcoming.
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8/2/2008, 10:54 am
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