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k'smom

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Everything posted by k'smom

  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. 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.
  4. 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!
  5. 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!
  6. 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.
  7. 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.
  8. 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
  9. 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
  10. 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.
  11. 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.
  12. 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!
  13. 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.
  14. 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.
  15. Thanks ya'll and thanks for the hugs too. I'm still trying to get her worked in to an appt with the cardio. I don't think I'm going to let anybody do anything until I talk to him, just to be on the safe side. @letitbe: I'm sorry, I didn't see the post you deleted. Why did you decide to delete? Did you have long term effects? I believe in "knowledge is power". If it had not been for the people here, we would not know what we know now, lol!
  16. A couple weeks ago we noticed Kay had a knot just below her knee. We asked her ortho about it this past week and after being xrayed, found it she has some bone tumors. The ortho believes them to be osteochondromas. She also has something showing up that is called fibrocortical defects or nonossifying fibromas. In May, they are going to take the tumor off of her knee that we found, because it is the largest and the others are just forming. I don't know why they don't want to take all of them at the same time, but we are supposed to discuss that further at her next appt. She was supposed to see a cardio that specializes in POTS and the genetisist, but the night before her appt, my best friend passed away and we had to reschedule. So my questions are this. Do you have to take specific precautions with POTS patients and anesthesia? Is anyone familiar with these types of tumors? I'm told they are considered benign.
  17. Hi Lieze, She was less active for a couple of months. Mainly because her blackouts were getting so bad and she felt completely drained most of the time. I think it was around Thanksgiving when she really started to go downhill. But when they got her on Florinef and adjusted it to the right dosage for her, we really started seeing a difference. She was up and walking again. It took a few weeks to build her strength up again, and then last month she got the flu and was really sick for over a week. Other than that, she tries to stay pretty active. She loves to walk alot. Until November she played a lot of basketball with her cousins. But I remember after all her problems started about in Dec '09, she started walking different. Mainly with her shoulders pulled foreward, kinda hunched a bit. She quit swinging her arms when she walks also, and that was around the time her shoulders started popping out of place. At first it was painful for her, now she can just move her arms in certain ways and it just happens but is not painful anymore. Its just strange to me. Hi Julie, She was diagnosed in Dec with POTS. The ortho and the physical therapist told us its her muscles. I don't know how they know that for sure. Her knees and hips pop too, but when that happens, it hurts her. I basically let her do whatever the drs say is okay for her to do, but right now they have her at a 10 lb. limit on picking things up, no driving, no horseback riding, ect. I've definitely been through the "scared" phase! But after talking with her drs, realized the best thing I can do is let her carry on as close to normal as she can. It's very hard sometimes, since she's 16 now and dating. When she leaves the house I pretty much sit on pins and needles until she's home and then try to act like I wasn't worried a bit, lol.
  18. Kay started physical therapy yesterday because the ortho said we had to build her muscles up in her shoulders. They pop out of place all the time. Yesterday, the physical therapist told me that her upper body muscles are basically turning to mush. I don't understand this. Even with all that she goes through, she still manages to stay pretty active. She pushes herself alot. We just found out she can only handle half a pound weight in her left hand, and a two pound weight in her right hand. They also discovered that her elbows are popping out too. Just two years ago, she could carry a 50lb. feed bad with no trouble. (She used to get fussed out for doing it though.) She still doesn't see the geneticist until the 25th, but now I'm starting to worry about "what" is causing the decline of the muscles. If it is EDS, does EDS do this kind of damage to the muscles?
  19. Firewatcher, Thanks for your sharing your experience with me.
  20. Just wanted to wish you the best of luck tomorrow, and I will be saying a prayer that all goes well.
  21. Hi sugartwin, We've only come as far as we have, because of advice given to me here. If I had not been told the extra questions to ask and test to request, we still wouldn't even know she has POTS. Two different ladies here have told me to ask about EDS several times, and because of that, she's getting to see the geneticist. I'm not being negative, believe me, but I don't feel like she's going to go out of all this. Matter of fact, it really kinda makes me mad for some uninformed drs to assure her of that fact, when they don't know that. It also ticks me off when they tell her, well it's just syncope, its not all that bad. Maybe not to him, but it sure seems like it to her. One of them actually told her the other, I'm going to get you to the point of being able to get your driver's license, I promise. After she's repeatedly been told by everyone of them that she can't drive because of this. Ok, I didn't mean to get off on a rant. I value all of the info I receive here, so thank you very much.
  22. Sue-pm sent-will send another tomorrow. Sarah-I did check out the EDS site. Actually, the ortho did her research in front of me yesterday on the same site. She just wants to start with some simple exercises and see how it goes. I'm in Mississippi. It seems like all dysauto specialists are in the north. Emma- Yes, please post what your specialist has to say! Lieze-That's pretty much what we've been shooting for- a happy medium. Some days she can tolerate more walking, like a small amount of time in the store, some days she can't and has to sit in the car while I try to hurry through. I know alot of people here can't tolerate getting their head off the pillow, so we are thankful for what she can do. Thanks to all for your input. One of her drs had previouly told me that if we can't get her heart rate under control, the next thing will be a pacemaker. He's a good dr, but not cardio, so IDK about it, but I don't want her to have to endure that if its not absolutely necessary. That's why I assumed we shouldn't push too much.
  23. Kay's internal medicine doctor decided we should go to Ochsner's Childrens Clinic to see a different neurologist there. So I took her yesterday. He spends about 10 mins talking with us and then asks, "What's POTS?" The first thing that hits me is, we are in the wrong place. He continues to take a full history and checks her out reflexes and responses and then says he wants her to see the ortho for her joints and the cardiologist. On the upside, he immediately got her in to see both. The ortho checks out her joints and says she has subluxation of her shoulders and right knee. She wants Kay to start physical therapy right away to try and strengthen her muscles and ligaments to help hold her shoulders in sockets before she ends up having to have surgery on them. She's pretty much amazed at the flexability in her shoulders, fingers and knees. We talked about joint hypermobility and she made Kay an appt to see the geneticist next month. So I think overall, the trip was worth it just to get this much done with ortho. Then we see the ped. cardio. who talks with us for over two hours. He was an extremely nice and considerate person. He tells me he would advise me not to start her on the Digoxin as it can be very dangerous for her. I'm in agreement after reading so much about it. Then he starts telling me that he's not sure he believes there is a condition such as POTS. He thinks that its just syncope and that most teens grow out of syncope. He asks about her physical activity and we tell him that she used to be very active, but that has decreased because she becomes so uncomfortable when her heart rate gets up and she can barely breathe. He tells me that he thinks she has fell into a pattern of not exercising and that is making her heart rate get too high when she does get out and walk, ect. He did another echocardiogram and EKG, put a 24 holter on her and gave her another 30 day event monitor. He told us to start steadily increasing her activity level and record the events so that he can see what's going on. He went and talked with his colleage and decided that Kay should see an adult cardio there that, as he states, has an extreme interest in Dysautonomias and sees alot of patients with the same symptoms as Kay. So she will see him next month also. This is where ya'll come in. I thought that letting her heart rate get too high with exercise was bad for her. I guess because when it happens, she blacks out, feels tired and has to end up going to sleep for several hours, not to mention getting so out of breath it gives her chest pain. Am I wrong? Am I actually making her worse by not pushing her? She's not lazy by any means. She loves physical activities, but I thought she should do what her body can tolerate. Please help me out on this.
  24. Kathy, My daughter is 16 and newly diagnosed with POTS. It's been a rough year with alot of testing for her too. We are just getting into the learning phase of all of this, but one of the main things I have found is rest. If Kay feels tired, dizzy, ect, she lies in her bed and watches movies, reads, sleeps, whatever makes her feel better. The longer she tries to stay up and push herself, the worse the symptoms. I hope you find what works for you.
  25. Thank you, Babette. I'm nervous about her trying new meds anyway. She hasn't been able to start it yet though, because she's been so sick I've taken her to the ER twice this week. The first time they said it must just be some kind of virus and let it run its course. Then yesterday with a fever as high as 103.5, throat so sore she cries when she swallows, ect, the second flu test came back positive, and another bladder infection also. I don't get it with these bladder infections she keeps turning up with but never has any symptoms from. Anyway, I appreciate your reply.
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