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k'smom

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About k'smom

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  1. Lieze, I'm so sorry that it has come down to this for you and your family. The only advice I can give you as far as the kids go is to simply keep talking to them. Is it possible that they are acting up because they know you are sick and they are worried? You are definitely in my prayers hun.
  2. Julie, Thanks so much for this! Congratulations to you and Mack! As far as not wanting to talk about things, rest assured, it's not just a boy thing. Kay doesn't want to talk about feelings or her illness either. These days I'm lucky if she tells me when she's having blackouts. She's in a "mad cause I'm tired of being sick" mood. I'm sure she will come out of it though.
  3. what is von Willebrand's? how do you get tested for this?

  4. As of now, Kay has been diagnosed with Dysautonomia: EDS, POTS, a milder form of von Willebrand's, osteochondromas, hemorrhagic cystitis, and thyroid tests aren't good now. She is having UTI's back to back and the antibiotics don't seem to be working. She spends way to much time at drs offices and is developing a depression because of it. I try not to schedule appts too often, but it seems like there's always something new popping up and she has to go anyway. The ER visits are becoming unreal. Today I feel really alone. I can only imagine how she feels. She says, "What's the point? Nobody can do anything for me anyway." I'm trying everything I know to do to help her. I have tried to be pro-active in her health care. I've always wanted the best for her. She's soon to be 17 yrs old and it seems no matter how hard I try, her quality of life is diminishing. I know some of you have teens with the same or similiar problems. How do you help them cope? I'm a Christian, I pray, I have faith. Today I guess I just feel down about all of this.
  5. I should have just went with ChristieD's ideas long ago when she first mentioned this to me, lol. Thanks Christie! We finally saw the geneticist last Monday. He knows that Kay does have EDS and is waiting on genetic tests to come back. He doesn't know for sure if its Type 111 or classic. He said that the tests he performed are only 50% accurate, but that we should see what comes up anyway. When this all first started with Kay and the doctors said, "We think she has dysautonomia, but just can't prove it right now", I found this site and started talking to ya'll. Without ya'll, we most likely would not be where we are right now. I have been provided the questions to ask and the direction I lacked through experiences of members here who took the time and patience with me to help me understand and learn. Thank ya'll so much for that! The geneticist told me that her POTS, pain, digestional problems, vision problems, joint dislocations, ect., can all be explained by the EDS diagnosis. So, I'm wondering if you have any new advice for me after receiving this new diagnosis. I have been reading on the EDS site and trying to absorb everything I can. We are currently in the second round of battle with SSI and hopefully this new diagnosis will help shed some light for the people that make those decisions. Kay has become very depressed. All the many doctors appts are taking the toll on her. She says it seems like everytime she goes now, it seems as if her life gets worse. I keep telling her that now that they have finally began to nail it all down, so to speak, that we can become better equipped to help her deal with it all. I believe knowledge is power!
  6. She definitely has hypermobility, but we haven't verified the cause of that. We are waiting to see the geneticist on May 2. I didn't realize that the bone issues could be related to a connective tissue disorder or something else. So thanks for bringing that up. I know she will be checked for EDS and probably everything else under the sun. I really have no idea what all the geneticist will want to do. I will have to find out about that block. I'm sorry, I'm not familiar with it at all. Thanks for your ideas and info!
  7. I'm in agreement with you about the depression being a side effect. I believe meds such as Zoloft, ect., can be very harmful if taken when not needed. The only thing I would say on syncope/presyncope not being treated, is that there is a reason for it to happen. So the cause of pre/syncope should be determined and then treat the cause. I've learned the hard way with my daughter the pre/syncope can be very dangerous. Passing out while in the shower ended with her being admitted to the hospital with head trauma and bruised ribs. So be very careful with accident prevention.
  8. Well I took Kay to see her internal med dr. When I told him she needed surgery, he nearly went off the deep end. His vote is no. He says there is too much risk involved with anesthia for her. He said no one can know how her autonomic system will react and he's afraid they would have trouble waking her up after. She will see the cardiologist on Thursday. I really don't know what we're gonna do about these tumors. I think for now, our best bet is to say a lot of prayers and try to take our time making a decision.
  9. If you did, I did too, lol. The anxiety of having a sick child will consume you- literally. But you are in the right place to get help with that! If it wasn't for the people here, I don't know where we would be right now. When I first found this site, I was lost and confused, didn't know where to go or what to ask to get help for my daughter. By taking the advice I was given here, I was able to get my daughter a diagnosis and get her started on the right treatment. So welcome to the forum. Ask questions, you will find the help you need from someone. Sometimes, just being able to vent here, gives you the power needed to re-fuel yourself. Love and prayers, Kim
  10. I'm so sorry to hear that these boys are having such an absolute hard time of things. It literally blows my mind away that a church, youth minister, or any other Christian organization/people could do such a thing! They should have been helping you think of ways to keep him included. But hun, if they would actually even consider kicking him out of anything at church,-- well, I shouldn't really say anything beyond that. Let's just pray for them, that God would show them where they are wrong and we will be praying that God will lead you in a new direction, to the place that He wants ya'll to be. We are very blessed with our church. Until this past Sunday we had been out for a few months because Kay was just too tired to endure it. We travel 45 mins to our church, but it's worth the drive. When we are not able to attend, they always have special prayer for Kay. It warms my heart and I will be sure that when they do from now on, they will include these boys. Love and prayers, Kim
  11. Hello! I'm so sorry you are having all these issues and no one is really listening. Well, to be honest, it's probably not that they aren't listening or think you are crazy, it's probably the fact that they just don't know. Over the last year and a half, I have to taken my daughter to more doctors than I care to count. I'm still surprised at how many wanted to put her on meds for depression, (she's no where near clinically depressed!). She was told her problems were because she was obese, (she's well within her normal bmi for height and weight). Some doctors will say whatever comes in to their mind to compensate for their lack of understanding or knowledge. My point is, don't let it get you down or cause you to give up. The symptoms you describe are not normal for healthy people. You know something is wrong in your body, so continue until you find a knowledgeable doctor to help treat you. I can tell you what our experience was with autonomic testing. I'm not sure if it will be the same for you. I think it depends on where you go and who performs the test. I'm definitely no expert! First they did a sweat test on Kay, which consisted of putting some electrodes in different spots, feet, legs, hands, arms, head--if I remember correctly. It was NOT painful in any way to her. It sends a signal and registers the amount of sweat to see if you're in normal range. Second, she was hooked up to a continuous EKG, blood pressure and finger heart rate monitor. She was just watched for I think 10 mins or so and all of this was being electronically recorded. She was already on a tilt table and they raised the table to an almost upright position to monitor and record any changes in BP and HR. Pretty much everyone can probably relate to the fear of the unknown and your desire to find out what's going on with you. Try to relax, because I'm sure the anxiety of it all compounds your symptoms, and like Chaos said, try to go through the list of doctors here because so many others have no idea what dysautonomia is, much less how to treat it. Good luck and our prayers are with you.
  12. Ok so I will discuss hydration, temp, ect. with the new cardiologist. Of course hr and bp are always of concern, but I didn't even consider the others. Thanks ya'll!! It is greatly reassuring to know that some of ya'll had no issues, and the for the others, the issues were pretty easily dealt with.
  13. Hi Tonya, Believe me, I understand the stress your under. My daughter is 16 yrs old and her heart rate sometimes goes to 220 with a bp drop. She fainted once in Dec '09, but she has lots of blackouts. As a parent, you freak out every time they walk out the door. Or I pretty much do, but try my best to hide it. I'm blessed, because mine is homeschooled and so she doesn't have to be gone all day. She can rest as she needs to also. It's not for everyone, but we have had good results. Try to remain calm. I'm sure you are keeping a phone in hand in case the school needs to call. Kay's doctor didn't seem to freak out when her hr went that high on the tilt table because when they layed the table down, her hr immediately began to come down. So, Kay has learned to get in a chair, on the floor, whatever she can do to keep from passing out. I don't have any experience with MCAD. But my prayers are with you and your daughter. He is an awesome God!
  14. Well the tumor that Kay found has become very painful and is causing fluid around her kneecap and swelling in her entire leg. We need to get the surgery scheduled, but we have to get clearance from the cardiologist first. Apparently her holter monitor and 30 day event monitor results weren't too good. The 24 hr holter showed bradycardia 57 times and tachycardia 48 times. She also had several episodes of her rate heart suddenly decreasing at 36%, increasing at 54%. I got a copy of the xray reports and I didn't like them. Too many "might", "may", and "possibly" benigns for me. I'll be glad when the tumors can be safely removed. The thought of, "if there are three in one knee, how many more could there be in her body?", is driving me insane. Kay is just not a complainer so when she tells me somethings hurting, she's really hurting. I would greatly appreciate prayers for her and maybe some for my sanity too. In the meantime, all of you are in my prayers.
  15. God works in mysterious ways, and it's great that He still has good hearted people to work through! Love the story and well wishes and prayers for Karen.
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