Moms of kids with dysautonomia/Why so many cases?

[Caty]

First of all, I ask the Lord for strength and hope for all of us.

I am trying to find support in your experience. I have been recently diagnosed with POTS and MCAS and in the ups and downs of all these strange and scary symptoms I am finding it very hard to notice more and more signs of dysautonomia/ MCAS in my 11yo son. 

It has crossed my mind multiple times that our illness may be related to environmental conditions but the thought of moving without proof is not logical. We are 6 in our family and only him and I have dysautonomia symptoms. But it seems to me that all winter everybody has symptoms of “getting sick” without obviously having a cold or an infection. 

We live in Oregon in a valley that is known for increased allergies in summer and mold issues in winter... However it seems to me that some of you started with dysautonomia while living in dry places...

We have a well and water tests have always been good. Could it be pesticide from fields around us? It is exhausting to think all this, but at same time, how not to search for answers? for healing?

Why there’s so many people with dysautonomia? Our food?

Then I remember that I don’t have much strength or brains to figure it all out... so I come to you.

May we grow in patience...perseverance ...and trust.

Caty

[Pistol]

@Caty - I can comment on several things in your post. First of all: POTS runs in my family. Mother, 2 sisters, 3 nieces and now my 14 year old daughter all have symptoms of it, although not all of the younger ones are diagnosed ( yet ). Also - POTS and MCAS have been around forever, they just have never been named or even singled out as an abnormal condition. Many POTS patients were labeled as anxious people, persons with a weak nervous system. Labile people. Throughout history POTS had many names and many labels. It is NOT A NEW DISEASE. It is only that in the 1990's they discovered that the COMMON symptoms of POTS ( all subtypes included ) were caused by a dysfunction of the ANS. In other words: it is not the environment that is causing POTS b/c many people have been suffering from it throughout history - it is that only recently they have been giving the symptoms a name. I live in a very rural area - 90% wooded, no cell phone service ( no towers ), no high-tension-electrical lines, no highways or factories, no genetically altered plants … we live as pure as you can get. But I have had POTS since childhood, so have several of my immediate family members. It is not a new or rare condition - it is just that it has only recently been discovered that the symptoms stem from an ANS dysfunction. 

[DizzyGirls]

I agree with Pistol (well said, btw!).  I would not move because you and your family members have POTS.  It doesn't matter where you live because it's not environmental.  There are people on this site from all over the world and we all have POTS.  I do not, but my two daughters do.  Theirs is caused by Ehlers Danlos Syndrome.  Others have autoimmune issues (my daughter has both).  Some people find help in adjusting their diet, sometimes our diets are adjusted unwillingly through MCAS, gastroparesis, etc.  Winter is hard, even here in "sunny" CA (ha ha, it's dark and rainy!).  Hang in there and God Bless!

[StayAtHomeMom]

I am in the same boat. I believe my 15 year old has it as well. I have wondered if I have had POTS longer than the 3 years I was diagnosed. But just a mild form. He is having symptoms about 3 years now. In that time he has grown about 6 inches. Usually 2-4 inches in six month spans. He is also never liked sports or being outside so I worry that contributed. He sees to specialist this month to see. If it doesn't get postponed again. It is time he needs an as needed medicine. He is having too many bad days. 

[Caty]

Thank you all for being there and your replies. How greatful I feel for this forum!

It’s hard, and we are used to finding a quick fix for things, illnesses and any discomfort. Not knowing what to do or how to make your child feel better is hard!

We have been in this home for 10 years. Since he was little he had episodes of hives lasting weeks when any food would bring them back. Chronic diarrhea, asthma, ulcers in his mouth... a constellation of weird illnesses and some unusual behaviors that fluctuate. 

 I’ve read stories here of people starting with symptoms from living in buildings with water damage. That made me wonder... 

Our doctors are used to seeing low Vit D levels in this area and don’t think much about supplementation. Our Vit D levels come always low (in the low 20’s) in winter. Have you experienced any difference with supplementation?

Thanks again for your kindness and reassurance. We love our home! We’ve been so happy here all these years. Being worried about our home being harmful for our own family is not fun.

 

 

[Pistol]

@Caty - yes, I also have low Vit D levels since I do not tolerate heat or cold, which causes me to be homebound mostly. Supplementation has been very effective. I could not function due to fatigue, no energy, weakness etc. Once my PCP found that B12 and D levels were extremely low I have been supplementing with B12 shots and Vit D3 capsules and my levels are back to normal. Please know that as per studies it is recommended to supplement Vit D with high dose loading doses, just a regular supplement is not enough to bring the levels up. In the beginning I was prescribed 3 months of 50,000 untis Vit D weekly followed by 2000 units daily. I have been on the maintenance dose for years and my levels are normal. I would ask for a blood test of these Vitamins - also Ferritin. Several members on this forum have found to be deficient in ferritin ( which measures how our bodies store iron ). My level was extremely low and after supplementing with iron pills my levels came up from 4 to 20 ( which is till low but acceptable ). 

[green]

Pistol,

Your hypothesis that POTS has been around at comparable levels of incidence in the population throughout the recent historical epoch, and is not, therefore, likely to be the result of some new toxin or pathogen being introduced into the environment, is intriguing!

Do you have any evidence to support it? I am curious. Without more evidence, it seems just plain impossible to say.

I see evidence of POTS in my Dad. I've talked to him about his exercise intolerance and told him "it sounds like you have a milder version of the autonomic dysfunction I have," but he doesn't seem interested. I've also seen it in my sister, plus my sister has a history of fainting from orthostatic stressors.

Despite all this - you know there really isn't FAMILY history. I remember we all used to go to the park as kids and bike around. Every weekend for many years the whole family would be biking or roller-blading several miles. We didn't get sick back then. But, it is possible that it's just that we're all getting older now. And anyway, we are just one sample.

So, IDK. 

 

[StayAtHomeMom]

My vitamin D levels are always low. Usually teens. With the high dose once a week for 6 or 8 weeks it will come up to 30s. But 3 months later it is back down again. We only use vitamin d milk in the house and I smoke outside so I get my minimum 30 minutes of direct sunlight a day. I am not sure why my levels are always low. Doctors don't seem concerned. They say just keep taking the vitamin D supplement. Which honestly I mostly don't. It is a waste of money. It never moves anything and I suck at taking most meds as directed. 

[Pistol]

@green - there are various articles out there that verify that POTS and NCS have been around for ever, just with other names. Soldiers heart, being one of them. Several articles state that women used to be confined to their beds for the rest of their life and doctors were unable to determine the cause of their symptoms. One of these articles you can find at emedicine.medscape.com/article/902155  but there are many others out there if you search under POTS throughout history and etiology of POTS etc. It is also mentioned frequently in literature that POTS is NOT a new disease but rather a new category in medicine. That is why there are so many doctors still unfamiliar with dysautonomia b/c until recently it has not been taught in medical schools. Hence the opinion of many physicians that dysautonomia is a psychological phenomenon. But as of recently more and more med students are being instructed about dysautonomia and there is much more research being done and published that today many more cases are being diagnosed. My mother  ( in her 80's ) had hyperPOTS all of her life and stumped doctors with her fluctuating BP, syncope and tachycardia. She was told all of her life that she had emotional problems ( she is one of the strongest women I know ). She even went to a psychiatrist a long time ago who reassured her that her mind was fine. A few years ago my autonomic specialist confirmed that he believes she has the same type of POTS I have. And he also diagnosed my highly symptomatic older sister with the same type of POTS. So - yes, it is not a new medical condition but rather a newly NAMED and recognized group of symptoms. And that is why today there is such an increase in cases reported - we now have he ability to test for and recognize POTS ( although unfortunately are still very limited in treatment.