momofsara

Well, here we go again, Sara was admitted to the hospital on Thursday of last week. Shes been running fevers ranging from 100 to 104 off and on for over 2 months now. The docs thought it was from her dysautonomia, and we thought so too. Last Wednesday I took her to her PCP for a checkup and we had a very long wait in the office. On Thursday morning she phoned me to say she was in soooo much pain she couldnt move. I went to check on her and had trouble rousing her, tried to check her temp and she couldnt hold the thermometer in her mouth and was almost unresponsive. I called her doc and he said take her on to the hosp. After xrays and such, they tell us she has pneumonia and she was admitted. More xrays and tests were done and come to find out she had double pneumonia,pleursy,and staph infection in the blood stream.Her oxygen was very low when the ambulance came to get her and she stayed on O2 until the last day she was in. No wonder she had fever--you think??????? geez----- She was given vancomycin, zocyn, and levaquin. Shes home now and still feeling lousy, but at least maybe the pneumonia has cleared up. By the way all the antibiotics also gave her a nasty yeast inf and thrush in her mouth. Yippee. As all of you here know if it aint one thing its another.... I also understand the recent posts about depression, she was very depressed this go round. She usually has a good outlook, but this time she seemed to have lost her hope. Its hard for me to encourage her when I feel so down FOR her, but I do try to encourage her all I can. Thanks for listening and all the support ,I truly need someplace to go for a sympathetic ear. Love and hugs to all--Susan

Only one word describes my reaction-----HOORAY!!!!!!!! Keep us posted we are all pulling for you. Susan

Linda--So sorry to hear about another disbelieving doc. Seems that there are lots of them out there. My daughter has run across a number of them and I certainly can understand your frustration. We've been there soooo many times. I just dont know what the answer is, but please know that we are in sympathy with you and we understand. Good luck with your further treatment..... Susan

Glad you had a good experience with a not so fun procedure. I will definitely ask my daughters gastro about the admitting thing for IV fluids next time Sara has to have the colo-endo stuff done. Shes had 2 colo's done without the benefit of anesthesia(it didnt take effect) They will certainly have to rethink this if she has another one done. Anyway, I'm happy you had a top notch doc on your team........ Susan

Welcom to the forum, you will find many friends and much information here. Good luck with all your tests. Hang in there we are all here for you.

Hooray, glad to hear you have a doctor on your side---Best wishes...Susan

My daughter's PCP( internal med ) manages her treatment, hes actually been more understanding and helpful than the cardio, neuro, or gastro. Good luck with your treatment and finding a good doc, it means all the difference when you have a doc who actually cares about your condition and not just another "paying customer". Susan

I know its so hard to ask for help, I see this so often with my daughter. She has had to learn to swallow her pride and say "Please help me" and she has learned who her real friends are. They are the ones who will do something for her more than once. Some say they will help but end up being too busy to bother. I recently took her to her best friends wedding and she did fairly well for a while but we had to leave right after the reception started. She was upset about not holding out until the very end, but she was happy she even felt like going. Shes missed so many things because she simply wasnt able to get ready to go. Bathing and getting dressed are very fatiguing for her.She always has to have help either from her hubby or from me. We always carry her pillow and a throw to the doc's office in case she feels cold or needs to put her head on my shoulder or in my lap.Also some doc's have no pillow in the exam room and she must have support for her neck as a result of pain from having surgery for chiari malformation. I'm glad to know that so many have a good support system because it is so important. This forum has already been a blessing for me and I feel very lucky to have found it. Susan

Oh Laura, I sooo know what you are talking about. Its been a lot of the same thing with my daughter. You have our thoughts and prayers for a successful visit to the doc. Hang in there sweetie. Hugs--Susan

My daughter has many of the same responses as you, in addition she goes almost completely blind if she turns her head past a certain point . No doc that we have mentioned this to has any explination. Guess the symptoms you describe must be something related to the POTS or maybe you have dysautonomia also- have you been tested for this? sending you hugs and best wishes--susan

My daughter has better results from the phenergan for her nausea. She also takes Protonix , Zantac and Amatiza prescriptions for her stomach woes. Good luck to you hope you find something to help you.

we have had another episode of temp spiking to 104. 2 hours after giving sara 2 arthritis strength tylenol,the temp was still 103. i called her doc and he advised to go to er. after waiting there for aprox. 4 hours,her temp had fallen to 99.7, we finally saw the er doc. they ran the usual tests, of course found nothing remarkable, so we were sent home with no fluids or anything. she had been pouring sweat and i'm sure was somewhat dehydrated. OH WELL, whats new????? sorry just had to vent. i felt as if she should at least have had some fluids to help her feel better. btw, that night she got up to go to the bathroom, got dizzy and fell(twice) got a nasty sprained foot/ankle --so it was a wonderful day altogether---

Hi all-- Just want to wish all our Mothers here a very happy Mothers Day. Speaking as a Mom myself, I'm so thankful for the opportunity to be a Mother. My children are the lights of my life. So Mom's---HAVE A GREAT DAY !!!!!! Susan

Thanks for your input. In fact she does have a low normal temp. Usually around 97, and you are exactly right when she has 100 temp she feels as if she is really sick. Much like I would if I had 102. Its very frustrating, but we usually do treat the fever as you were saying, lots of fluids, Tylenol or Advil to help bring it down, and rest. We are making this journey together and I will be there for her as long as God lets me have the health to do so. As with so many others here, she has numerous other maladies. Fibromyalgia, interstitial cystitis, chronic pain(as a result of surgery for Chiari Malformation), hiatal hernia, gastric reflux,panic attacks, depression, mood swings, and the list goes on and on, you get the picture. But we persevere. Thanks again for your post.

Hello group--I am the Mother of a 28 y/o daughter with severe(as diagnosed by docs) dysautonomia. I'm sure most of you are familiar with the frustration of seeing doctors who either dont believe the condition exists or they think the patient is "faking" to get attention. Any way, our latest problem consists of having a prolonged siege of low-grade temps(100.0-101.0) This proves especially upsetting as docs tend to associate fever with infection and if they cant find any infection, then the fever gets dismissed because --"there is obviously nothing wrong" The problem comes when we have to go to the ER for fluids, etc. Her primary care doc is better about such things, but we dont always get to see him at the ER. GRRRRRR. Just had to vent, I'm so happy to have a place to come where people understand . Thanks for listening---