surfgirl14

Hey. Yea I have that. I requested for that when I was getting the regular IV's. Yay! So im happy I have it , cuz I know it will be much better with it. Thanks

I don't know if this is considered a team but I clicked team. Mainly because I have 2 pediatric cardiolgoist (I know a lil weird) lol..... My first one is the one who initially diagnosed me but as I became worse he referred me to another one who manages it at Duke Childrens. So basically the one who initially diagnosed me oversees my POTS and the other one manges it. haha kinda complicated I know. I also have a therapist who is amazing! I also has seen before:

Pediatric Gastro

Pediatric Neuro

Sleep Doctor

Nutritionist

Back Doctor

Pediatric Integrative Doctor

ENT

Physical Therapist

I also have a:

Infusion Team

Therapist

Pediatrician

Hey. I noticed no one has replied yet, so I decided to reply. I don't know how to help you because the only ones I know of our childrens hospitals and such. But I just wanted to say good luck, and I hope you can find someone.

PuppyLove- First of all you are not alone... I went through Anxiety and Panic too. Also depression. But it would send me into panic just taking a shower alone in the house or being alone in the house at all. I actually recently got a kitten and believe it or not it really has helped calm me down a little. My mom works full time and is gone all day so it is nice to have a friend around (my kitten) Thats just me though idk if it works for others. Also looking back some time I was on a ssri and did not have a good experience. I would recommend talking to a therapist first they are really good in helping you cope w/out meds and can also tell you if they think you should talk to a psychologist. It is just something to consider b4 going on psychiatric meds (they can have really bad side effects sometimes, but they can also be good if you really need them). I have a therapist who is amazing and I look foward to going to every session with her I really hope things get better.

Hugs

~Kayla~

Hey. It is a smart port. I did they made sure everything worked before letting me go home. I spoke to them yesterday and the resident said if I do not better by tomm then call. They were thinking about putting the pain meds through an IV and admitting me but the infection and risks of that dont outway the benefits. I actually feel lots better then I have so thank god I dont think I will have to call them again tomm. I think i am finally recovering . .. I havent got it accessed yet I do on friday. so will see how that goes. Thanks.

Hey guys. So I got my chest port surgery on Friday. I am still in quite a big of pain. Mom called in to the doc to see if this burning/stinging pain is normal...were waiting for a call back. Anyone else got this surger , how long did it take for recover? Jus wanted to give u guys a update. cnt type much sorry it hurts to bad.

Thanks.

thank you Hope you get better. Maybe you should try things like smoothies to, to get some kind of extra nutrition.Bananas and strawberry smoothies seem to settle well with me. I do ensure too and its a life-saver for me.

thank you. Yes I had a speech person come and see me when I was admitted last summer and she told me the exact same thing.

Hey. I put on mine (risk for fallings , synocope , orthostatic intolerance , autonomic nervous system disorder, etc.) things along those lines. Hope this helps.

I have yet to get one yet but I want to get one of those. I heard they are good. I would put like my name , age , gender , main diagnoses , meds , primary doctor , allergies, emergency contact , and the doctor who treats my POTS. That is just what I would put.

ok there is this place called CARE and it sells the medical ID bracelets that are pretty cool. And u cn put a lot of info in them. Just go to google and type in CARE medical id bracelets and the site should pop up. They are $20 bucks which is not bad.

Hey yea I am still upset , he made me cry This is exactly why I wont to say in pediatrics because they are more caring and understanding. That was my first adult doctor that i had been through. Well my mom called and told them waht had happened and so forth. So the nurse was mad they treated me like tht so she is goin to call the doctor. Also the nurse said if they cnt refer me to someone close in my area then they want to send me to this really good doc and she knows lots about pots and the stomach aspect of it.

thanks everyone. LOL izzie sounds good to me !

I went to the new stomach doc yesterday am sad to say he was so rude to me. He was totally uncaring and not understanding. He told me I was dehydrated when I got there but yet he sent me for blood work (in which i almsot passed out) oh and not to mention he told me to call my cardiologist because he doesn't handle POTS. I was like serous;y? My symptoms tht is causing me to not be able to eat drink is swallowing issues and extremem nausea and u are a stoamch doc but u dnt hand those symptoms? I was so furious. The only good thing he did was order some test to test for gastropeorisis. And he didn't even do an exam , i was so shcoked. I would have to say the worst doctor I have every seen! Very dissapointed. I left the office feeling quite frustrated and am still sick.

puppylove - yea it is no fun at all! I am just hoping it will go away. Good point about GERD they said I had that actually and I take zofran in pill form but i think i got immunity to it and it doesn't really work that well for me anymore. Like I almost threw up last night (sorry to be so tmi lol) and i have never gotten to that point. I know it is not a stomach flu thing cuz i cn tell my pots symptoms apart from regular sickness. And thanks Hope things are doing good for u. I am going to message u later , I have a question Bye girl.

mwise- thanks for the comment that was very infomative. I have had a endoscopy b4 in the hospital when they admitted me last summer. Do you think with those test that they will admit me to do them? ha idk why i get so anxious about stuff i just need to breathe It is just the hospitals down here don't except 18 as pediatrics and all my specialist are (besides my GI Doc) even my primary is a pediatrician. And when they admit me the admite me to the adult side in whcih they are super rude and not gentle or careful at all. But I will keep yall posted. My appt is today at @3

katybug- That is true i know it isn't the most horrible thing but like i said to mwise about the hospital they send me to it is pretty scary for someone who is 18 and is used to peds The doctor i get treated by works at duke childrens and i would so rather go there. It is a great hospital and they are aware of pots. Last time i got admitted to the one where i live they sent a psychologist in to accuse me of bulimia/anorexia/anxiety you name it ugh! I have not been checked for that and I am not sure what it is but I will def look into it b4 i go and if i think that is something tht relates to me i will def bring it up to him at my appt. Thanks i love hearing about new sutff and seeing if it matched my profile of symptoms.

Thanks everyone Again

Hugs Kayla

yea true i guess no one would really know unless they are a doc but just thought i would ask if anyone had any idea if they would. I am not really sure if me barley being able to eat or drink is concerning enough to them to make them want to admit me. I am more concerned about dehydration then anything else.

Hey Guys. So last summer I couldnt eat or drink anything due to this gagging sensation i had so they admitted me. So now my nausea is so bad that i am barley able to eat/drink at all and i have had this sensation about 3 times this month where when I swallow my swallow reflex will just stop and food will get stuck and i cnt breathe.. scary right ... yea so anyways i am going to a new stomach doc tomm and have to tell him everything that has been going on. So I haven't been able to eat or drink barley anything the past 2 days. I know i cam dehydrated and feel horrible. Do you think he will admite me? I mean what would a doc admit you for? I really hope not... I have lots of stuff going on with school and I don't wana put my life on hold But I know that if that is something they do decide it will be best for me but its just the fact tht i dnt want to be hospitilzed (I know no one does) ....

Anways thanks for taking time to read this. Any comments would be much appreciated.

Thanks

Kayla

Hey puppylove. I see a therapist on a regular basis. She didn't know what pots was but she did research it, after I found out what I had. She specializes in helping people with chronic illnesses and life-threatening illnesses. Also she does family and individual counseling. She is amazing and even went out of her way to leave work to visit me in the hospital. She is basically like my best friend and is constantly there for me. So what I am trying to say is if you can find a good therapist who really cares it will be awesome for you. They are amazing at helping you. It is well worth the money to. I have the same problem with my family even though me and my mom are really close she still doesn't really understand. And I have had a couple sessions with my mom there (was very helpful) it is also good to get that one-on-one with your therapist. where you can share how you really feel and freely express yourself. Hope things get better! Hugs

Yea it is pretty pricy. It is also hard to get through a doctor. Many of them don't even like taking the risk to let their patients doing it. Hope you can get the help you need. Best wishes to you.

Wouldn't recommend you doing that. I get infusions at a infusion center weekly ... you could always go to one of those instead of the ER. Just get approval from a doc and get them to refer you. It is to risky to do it yourself. Even when you do in-home infusions (which I don't even feel comfortable with) a nurse has to be advising it. Taking ur vitals , checking IV site , etc.

Thanks for the reply ... Actually coke does work with me too when I am in those GI flares. And thanks Yea this is one of the worst symptoms.

PuppyLove: Hey. Yea Nausea like isn't fun at all I hate it. Actually I had a GI doctor who was not good so we stopped going to her. We mentioned gastroperisis to her and she just shut us off and said "no , no you don't have that". But my pediatrician just refered me to another doctor , I am hoping he will be a good help.

Hey Guys. So one bad symptoms I have is nausea which leaves me not wanting to eat. I have barley eaten in like 3 days. But then i'll get better and be able to eat again like full meals but then ill get nausea again and the cycle to barley eating will start all over again. Does anyone else get this? Also is it dangerous to not be able to eat that much? At what point should you consult a doctor? I have lost lots of weight about 20-30pounds (have been told im underweight) but doctor aren't really concerned.... I love food so when I am able to return to eat again w/out being nauseated I tend to eat a whole lot... which doesn't seem healthy :/

Anything would be greatly appreciated.

Thanks.

Hey. So I had to sign papers saying I would not talk about it, and I am not sure why. That is a great question I asked my mom the same thing and she was like idk why its so secretive but just dnt dicuss with others.

That's awesoeme to hear! Hope it continues to work. I might try tht too since I have the same problem with bloating

Rachel thank you for the response Yes it is def scary and hard to understand that it is not life-threatning. But it is nice to know that it is not. It is just some symptoms that i do have that are related to POTS one of my doc says is serious and life-threatning. So mixed signals from many diff docs.

I signed a paper saying that I can't talk about it but I can say though it is really hard and takes a lot of dedication. If you are ready to fully dedicate yourself and feel like crap then go for it! LOL it has been proven to help many recover from pots but I have had lots of flares and have been really sick since starting the program. I don't believe the program works but my doctor who referred me insist that i stick with it. He told me it will only get worse before it gets better. So I am trying to push through. I do think you have to have a doctor refer you though i could be wrong though. Wish u all the best