4 Year Old And Husband With Pots

[catina1996]

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.

[sue1234]

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.

[nmorgen]

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.

[yikespanic]

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

[maggie]

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

[issie]

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.

[catina1996]

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!

[catina1996]

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.

[catina1996]

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!

[catina1996]

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.

[catina1996]

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!

[catina1996]

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.

[arizona girl]

Hi, anna, you could pm Ericka in orlando and see which doctor she is seeing at mayo jacksonville. She finally found a doc there to diagnosis her. She is dealing with an autoimmune neuropathy, stiff person syndrome. It is possible they could have a small fiber neuropathy, a lot of autoimmune diseases cause this. The doctor that diagnosis this is a neuralmusclar neurologist that deals with autoimmune disease. Rheumatologist's are not the only specialities that deal with autoimmune disease.

There are a lot of post here on the forum if you search small fiber neuropathy, you can also google it and see if your husband fits. Your daughter is like I was and still am, I also have some of the same symptoms as your husband. I have SFN and low immuglobluins, a quantitative immunoglobulin should be checked as well as cbc with iron and ferritin, b12 to see if there is hidden anemia. I also tested for eds and lymes and other conditions. Test for as much as you can. It took a long time for them to figure the right tests for me, but once we were on the right track things came up positive. A real relief, pots is a set of symptoms usually being caused by something else, it is the correct move to look further into this for underlying cause. I lived in florida when I was younger and live in arizona now, the combination of heat and humidity was more then I could take. It's hot out here but mostly dry, so easier to take.

good luck

[issie]

Annas Mom,

My pleasure in responding. That's what we're all here for ----TO SUPPORT EACH OTHER ----because this is the place where everyone understands what the other is going through. We're not alone in this world with this rare, difficult, hard to manage syndrome. We are slowly figuring out what works for us and what the reasons are for what we're dealing with. Stay in touch and we'll try to help you along your journey. There should be a support group for the spouses and significant others who help us in our journey. God knows it affects their lives too. (I know some of you don't have that support system, I hope some day soon, you will have that in your life. It's nice to have ones who care there.) But, we're all here to support each other and, at least, we have that.

[yikespanic]

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!

Make sure you go to a Dr who is very familar with tick borne illness, it's even important that the dr uses a lab that regularly test for lyme such as IGENEX in CA. The Western Blot has to be done correctly and there is a limit to time between draw and actual test so even day of week done is important because of shipping. I hate to sound crazy, but after what happened to me I worry about this stuff.

[worththewords]

I highly recommend Dr. Kusomoto at Mayo-Jax. I saw him and he was fantastic! If you decide to see him, make sure your actual appointment is with him and not someone else. You may need to ask a previous doctor for a referral.

[masumeh]

Big challenges on your plate. Good luck coping. I know you're doing your best!

One idea for keeping active is for both your son and husband to keep their legs as conditioned as possible. Exercising while sitting down is a good way to get around the exercise intolerance for some ppl. I use stationary biking, followed by long period of stretching time because the acid build up in muscles is a trigger for autonomic reaction and that can be prevented by breaking up the acid by stretchin muscles out immediately after or even in intervals durin exercise. If I exercise for 10 minutes, I stretch for 20.

If you child has fatigue, there are plenty of sit-down, quiet activities that are stimulating and fun. Puzzles, drawing and painting, reading picture books, building blocks, clay, magnets, puppets, marble games, card games like memory, dolls and stuffed animals, looking at leaves and stuff under magnifying glass, rock collecting, learning to button and tie shoe laces on dolls, tracing to prepare fingers for writing...workbooks are great for activities and stickers are good motivators. Lots of 4-year-olds love to cook and bake, and they like to help out with laundry and "big people" jobs around the house. I would say probably a POTS patient should try to stay away from TV...the lights aren't good for the headaches and so forth. Playmates who have quiet temperaments would really help too.