catina1996

Thank you! She is learning but some days are impossible. The doctor said it is because of blood pressure drops. We are learning and have included Saturdays in order to get through the lessons. She is about to have some class time with a friend that teaches at a school.

Thank you for the advice, I am working with a pre-k teacher who may let her come to class for a bit when she feels good. If you think your kids have symptoms, dont ignore it. I tried to get my daughter's dr in TN to listen and they ignored my concerns for 2 years. When we moved out of TN her new dr was extremely concerned at the first mention of her symptoms. We are finally getting somewhere. Dont ignore your motherly instinct, we know when something isnt right. Our doctor cant do much, Midodrine didnt help and he just said it is something we have to deal with. We are going day by day.

Thank you for your reply. I hope you and your family had a great Christmas. We moved from TN before the floods. We came back due to lack of work for me, I was laid off. My husband went for a while without a diagnosis until a dr. in TN finally recognized POTS. Our daughter started to fall down and not get up for a while when she wa 16 months old. The doctors said she was weak and would be fine. I knew something was wrong and I was being ignored. When we moved to FL I told her new doctor about it and she sent us to a cardiologist and neurologist. She was diagnosed with POTS. Adjusting and coping with 2 with POTS is the hard part. Some days are overwhelming! Church attendance has become a rare treat. My family seems to keep getting respiratory colds and viruses so we are limited on outdoor activities this winter. It has been cold, snow flurries this morning!!! Looking forward to the times we can regularly attend church again. I am praying for your child and your family. Thanks for listening. Catina

Dont take this wrong, but I am glad someone else has a small child with this. We felt so alone in this. Everyday is a new challenge. I am a teacher and have chosen to school our daughter at home for preschool. She cant attend a regular school because she is sick most days. Thank you for the advice, I will have to slow down a bit and take more time with her. Maybe I expect too much from her, I just want her to succeed. What are they doing for yo0ur child? Ours is on Midodrine 10 mg every 4 hours during her awake hours. It doesnt seem to be helping. Thanks for answering.

My husband and 4 year old have POTS. I am having trouble homeschooling her due to her fatigue, ADHD, and pain. We are currently 2 weeks behind. Anyone else have a small child with this? Any ideas to get school done everyday? How do others cope with multiple family members with this? FRUSTRATED!!!

Sorry it took so long. It has been a rough week, doctors dont want to listen. I havent been online but trying to find a doctor who is willing to see my husband and run tests. How are you doing?

I really appreciate you responding to my post. I cried when I read it. Knowing that there is someone out there dealing with the same problems is a comfort. I am sorry for that but at least we are not alone. I had been looking up the EDS last night and wasnt sure if my hubby should be tested. Now we are going to push for it. We did get a cooling vest for him and it does help get us outside for longer periods of time. We chose the CoolSport. I will be getting one for my daughter when I get the $. Before the vest he stayed inside all the time. It was worth the money. After we ordered it we had it within a week. We were able to go to the beach for 2 hours today! A miracle! Thank you for answering my post.

I really appreciate you responding to my post. I cried when I read it. Knowing that there is someone out there dealing with the same problems is a comfort. I am sorry for that but at least we are not alone. I had been looking up the EDS last night and wasnt sure if my hubby should be tested. Now we are going to push for it. We did get a cooling vest for him and it does help get us outside for longer periods of time. We chose the CoolSport. I will be getting one for my daughter when I get the $. Before the vest he stayed inside all the time. It was worth the money. After we ordered it we had it within a week. We were able to go to the beach for 2 hours today! A miracle!

Thanks for the reply. I will try to get my hubby into Mayo. Hopefully we can figure out what we can do for him. Thank you.

I will try to get my husband tested. We came from TN where ticks run wild, anything is possible. Thank you!

Thanks for the info. I will try to get in to see them.

Thank you for the reply! We have been tested for celiac, it was negative. Although cutting out breads and such has helped some, so we limit those types of foods. I was researching EDS yesterday and my husband is going to an internist next week. I will bring up the EDS and try to get him tested. Thank You!

We know how hard it is to deal with unsupportive people around you. We ordered the info movie Changes and had it mailed to their homes. They get curious and watch it, it makes them see what you have been trying to convince them of. Try it maybe it will help them understand the condition.

My husband was diagnosed with POTS 3 years ago and my daughter was diagnosed a month ago. We recently relocated to FL so I could work, but now my husband's symptoms have become intolerable. My daughter has become intolerant to the heat, so we are cooped up in the house all the time. Does anyone have a small child with POTS that may have some ideas on how to keep her active and as normal as possible? Also if anyone knows of a good Dr in Jacksonville that my husband can see for further diagnosis, I would appreciate it. We are having trouble finding someone willing to test for the causes of his symptoms. We even had a DR tell him he has POTS but thinks he has something else going on that isnt POTS. Husband's symptoms: Fatigue, joint & muscle pain (severe at times), headache, GI problems & pain, nausea, heat intolerance, mood swings, eye sight problems (blurry, double, spots), weakness, constipation, diarrhea, spinal pain, sinus problems, slurred speech at times, restless leg syndrome, asthma like symptoms, pain in left side, numbness and tingling in arms and hands, legs and feet, dizziness, lightheaded, trouble swallowing, brain fog, trouble concentrating. Daughter' symptoms: dizziness, legs and arms collapsing, fatigue, heat intolerance, mood swings, brain fog, concentration trouble.