catina1996

Your daughter could qualify for accommodations for health issues, if you wish. I realize that you might just like homeschooling for now until you get a handle on her health stuff, just thought I'd mention it. She could go to just an hour a week even, just for fun and to be a normal kid. But I'm all for parent's choice. Or there are probably some programs that have play groups for medically fragile children too!

I don't have kids, I just like them... ECSE/ECE major Before I had POTS I was learning teaching in a preschool room, and there was a child (5 years) with (from what I can tell from what they told me) something at least similar to dysautonomia. She did really well, and they included her in crafts and song time and things, and then her parents took her home after a while. She liked it!

But like I said, totally your choice! I hope your child gets better and you can find a treatment that is more reliable!

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!!!

Annas Mom,

How are your loved ones doing? Any news?

Also, I left you a PM weeks ago, that you haven't read.

Issie

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 have all -- exactly -- the same symptoms as your husband. I do have Ehlers Danlos and it can run in families. It does affect your eye sight and causes extreme body pain. It also can be the cause of POTS. The person who can diagnosis this is a rhematologist and a gentics doctor. The form he may have is the hypermobile form and it can not be geneticly tested but is based on history and symptoms and a flexability test they do on you. I'd start there. If this is the cause, the best thing I've found is full body compression. It's like a full body slimmer with compression hose. I'm sorry you have two in your family with this, my husband feels like he has his hands full with just me. But, hopefully, you'll be able to figure it out. Most of us can not take the heat. I live in Phoenix and this is my first year here. I get sick just trying to go from air conditioned car to air conditioned house, store, etc. It totally wipes me out in less than 5 minutes. Many are using a cooling vest. I don't have one YET! But, I'm trying to decide what kind to get. Some work better in a humid climite others in a dry climite. If he wants to get more info. on what the EDS has done in regard to my symptoms, PM me.

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 have all -- exactly -- the same symptoms as your husband. I do have Ehlers Danlos and it can run in families. It does affect your eye sight and causes extreme body pain. It also can be the cause of POTS. The person who can diagnosis this is a rhematologist and a gentics doctor. The form he may have is the hypermobile form and it can not be geneticly tested but is based on history and symptoms and a flexability test they do on you. I'd start there. If this is the cause, the best thing I've found is full body compression. It's like a full body slimmer with compression hose. I'm sorry you have two in your family with this, my husband feels like he has his hands full with just me. But, hopefully, you'll be able to figure it out. Most of us can not take the heat. I live in Phoenix and this is my first year here. I get sick just trying to go from air conditioned car to air conditioned house, store, etc. It totally wipes me out in less than 5 minutes. Many are using a cooling vest. I don't have one YET! But, I'm trying to decide what kind to get. Some work better in a humid climite others in a dry climite. If he wants to get more info. on what the EDS has done in regard to my symptoms, PM me.

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!

I'm sorry to read that both your husband and your daughter have pots. I live in Florida, south and was dx at Mayo, Jacksonville. I have had it for five years now. At that time Mayo only dx pots but was not treating it. I do believe that is still their policy, but you could check. There is a Dr. Thompson in Pensacola who has pots himself. I did go see him myself, but I'm so far away and there are times he cancels his appointments because he's not feeling well. I hope you can find someone to help your family.

Maggie

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 had Lyme and didn't know it and it brought on my POTS, Tingling in hands and feet, severe joint and muscle pain, extreame fatique, headache radiating from where my head meets my spine.....Its a long shot but worth checking out?

Kim

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

Actually you have the Mayo clinic in jacksonville. That would be your best bet on getting help. They do have a dysautonomic specialist there. I would give them a call and see if they can help you. Good luck.

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

Hi and welcome! I am sorry you are having TWO people in your family with troubles!

Maybe some FL people will jump in and give you some names.

One thing that can give some of those symptoms is celiac, and it usually runs genetically in families. Has your husband ever been tested? Just a thought with the wide variety of symptoms he has with his POTS,and also your little one showing symptoms too.

There are other things to be looked at too. I know some people here have EDS and it runs in families, too. It can be a factor in POTS.

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.