DawnA Posted January 20, 2004 Report Share Posted January 20, 2004 Thursday is my daughters appt with a Cardilolgist at childrens hospital of milwaukee. I am so nervous that the cardiologist is not going to know anything about dysautonomia. I don't want her to have to go through what many of us went through to get a diagnosis. .... She won't have to because I already know what she has . Her symptoms are increasing and I am positive she has POTS. I just don't want any delays in treatment so she can improve her quality of life or prevent this from getting worse. Kids are only kids oncePlease keep us in your thoughts and prayers! I will let you know how it goes.Dawn Quote Link to comment Share on other sites More sharing options...
scamelo Posted January 20, 2004 Report Share Posted January 20, 2004 Good Luck with your daughter.I can't imagine what a young person must feel feeling so bad some of the times.I wish you all the best and keep in mind if this Dr. does not do it for you there are many others.SuerteSilvia Quote Link to comment Share on other sites More sharing options...
EarthMother Posted January 21, 2004 Report Share Posted January 21, 2004 Good luck! Our thoughts are with you and your daughter.Out of curiosity what kind of symptoms does your daugher exhibit and how old is she? I have noticed that my 7 year old (thin frame, tall, lanky etc.) tends to have a 20-30 HR jump when she stands but otherwise she is completely asymptomatic.EM Quote Link to comment Share on other sites More sharing options...
DawnA Posted January 21, 2004 Author Report Share Posted January 21, 2004 Carissa is 12 and has had mild symptoms on and off since she was in second grade. In second grade her teacher thought she had depression and then considered ADD. Her grades were good, but she was always lethargic and could not focus. It went away for a while. I now think this was the onset. She has had many periods of anxiety/depression type symptoms since. Right now her symptoms include dizziness, presyncope, SOB, chest pain, heat intolerance, fasting intolerance, migraines, fatique, nausea , aches and pains and brain fog. She states or cries that she does not feel well. Two and a half years ago she went through a nine month period of feeling very poorly and was not herself. I kept bringing her to the Dr. and was often brushed off. She did end up getting pneumonia and they diagnosed a mono type virus. Then she got better. THings started up again this fall and the symptoms are more pronouced. She has always been a frail and sensitive child and I always felt something was wrong. It is hard when they are so young to describe how they are feeling. Carissa is much more able to tell me how she is feeling. She hates going to Drs, but seems releived to be going. I hope your daughter never has symptoms!By the way her appointment is Friday. I was wrong on the day. I will let everyone know how it goes.Dawn Quote Link to comment Share on other sites More sharing options...
hilfgirl33 Posted January 21, 2004 Report Share Posted January 21, 2004 Dawn,Just wanted to say that I hope everything goes well tomorrow and the docs can help Carissa feel better. It seems so unfair to have deal with this as a child. Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted January 22, 2004 Report Share Posted January 22, 2004 Dawn,Please let us know how things went at the appointment. Your daughter has been in my thoughts and prayers.Michelle Quote Link to comment Share on other sites More sharing options...
Timbo Posted January 23, 2004 Report Share Posted January 23, 2004 (edited) I saw a cardiologist and he said I had heartburn. This is the same cardiologist that told my father he was fine a few months before his heart attack. Needless to say we are never seeing him again.HOWEVERThey are much better at Childrens Hospital. If you discuss the possibility of it with him, he can do an EKG test with deep breathing to see if she has dysautonomia. It can at the very least rule it out. That is how they figured out I had a form of dysautonomia. Further testing brought the POTS diagnosis. Edited January 23, 2004 by Timbo Quote Link to comment Share on other sites More sharing options...
DawnA Posted January 25, 2004 Author Report Share Posted January 25, 2004 Carissa's appt went very well!! The nurse thought I was crazy and was shocked when the Dr told her it was a legitamite illness. The cardiologist believes that she has POTS and is treating her for it without a TTT. He may tilt her later if she does not respond to treatment. He did check her heart with an EEG and it was fine. She has also had basic blood tests and thyroid tests. I feel very blessed not to have to struggle with getting treatment for her. I have struggled enough with Drs and I still am re other medical problems. I hate to see any one else struggle t get treated.The cardiologist wants her to see a neurologist for migraines. She has an appt in May. They are trying to get her in sooner. I am happy to see that medical treatment for children is better than adults. I hope it is this way for everychild.Thank you everyone for your thoughts and prayers. I will keep everyone posted. We learn so much from each other.Dawn Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted January 26, 2004 Report Share Posted January 26, 2004 Dawn, I am so glad that your daughter got such good treament at her appointment! At least now she'll start getting treament and have a chance at feeling a bit better than she is now.I feel for her with the migraines, I have them too. Migranal and Amerge were the best meds for me, however, my current insurance wont cover them, so I'm on Midrine. It works but messes with my stomach.Let us know how Carissa's treatment progresses. Nina Quote Link to comment Share on other sites More sharing options...
Michelle Sawicki Posted January 27, 2004 Report Share Posted January 27, 2004 Dawn,So good to hear all went well! There is a kids dysautonomia groups at: www.dynakids.org They have info that can help her (and her school) understand what she is going through.Take care,Michelle Quote Link to comment Share on other sites More sharing options...
DawnA Posted January 27, 2004 Author Report Share Posted January 27, 2004 Thanks!Dawn Quote Link to comment Share on other sites More sharing options...
hilfgirl33 Posted January 27, 2004 Report Share Posted January 27, 2004 So happy that you got a doc with some knowledge who will listen. That makes all the difference in the world. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted January 27, 2004 Report Share Posted January 27, 2004 DawnSo glad you found a good doctor so easily for your daughter. It must be the hardest thing in the world to see your child suffer with a significant illness. Hope she gets well very soon.Katherine Quote Link to comment Share on other sites More sharing options...
justme Posted January 27, 2004 Report Share Posted January 27, 2004 Are migraines part of POTS? My wife gets them and can get so extreme that they require hospitilization, sometimes for a few days. Quote Link to comment Share on other sites More sharing options...
DawnA Posted January 28, 2004 Author Report Share Posted January 28, 2004 I doubled checked and the symptoms for POTS on this site include headache/migraines. I am sorry your wife has such horrible migraines. She is fortunate to have someone as supportive as you. Dawn Quote Link to comment Share on other sites More sharing options...
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