POTS, Orthostatic Hypotension, and School

[brla]

Does anyone here have a child that has POTS?  (postural orthostatic tachycardia syndrome)

 

My daughter just got diagnosed with this and I would love to know how this works with school and multiple siblings.  Also, things you've been able to do to help your child.  

 

I have 4 other children also homeschooled, one of which is a SPD child that needs more indvidualized schooling.

 

Any information would be appreciated.

[Heathermomster]

Are you talking about the blood pressure problem that prevents a person from standing for any period of time? 

[brla]

That's a very small part of it, yes. http://www.dysautonomiainternational.org/page.php?ID=30

[Sandragood1]

We have that in our family. I may be able to help, but:

 

How old is your dd? What has the doc suggested? Did you see a specialist? What symptoms caused you to seek out medical help?

[Sandragood1]

In general:

 

it is worse during periods of fast growth.

 

You need to maximize blood volume: adult sized folks to drink 80 oz per day of fluid with salt and other electrolytes. More if there is sweating due to heat or exertion.

 

Help your dd maintain a very high level of fitness.

[brla]

We have that in our family. I may be able to help, but:

 

How old is your dd? What has the doc suggested? Did you see a specialist? What symptoms caused you to seek out medical help?

She is 14. Doc suggested immediate drug therapy. Said excercise could help some, but just to keep her moving. Not to restrict her salt intake. Said she would never recover fully and basically made my daughter and i stare disbelieving...everything we read prior to the appointment at the children's hospital said a whole bunch of the opposite. The doctor that actually treats POTS here in st Louis area cant see her till june. So, in the meantime, we are changing over to st, Louis children's hospital to finish the cardiologist testing needed for the pots plus portion of the diagnosis...

[brla]

Also, symptoms are pretty classic pots. Current symptoms are sever stomach pain, chronic constipation, passing out multiple times a day, staring off into space but not aware, hair falling out due to malnourished, xtreme vit d and iron deficiency even on supplements, food alergies started to be noticed, hard time gaining weight, difficult swallowing, numb and tingling all over, feet and hands extremely cold and often blue, difficulty breathing, exhausted after doing anything, achy all over. Low grade fever after eating most of the time. Eyes swell almost shut when over tired. I think thats it right now. These have been the symptoms for the last 3 weeks. It has evolved some since last October when this all started.

[Sandragood1]

I was at our POTS specialist last week. He emphasized 80 oz of fluids (Gstorade) per day. Water is insufficient as you will just pee it out. You need the salt and other electrolytes to hold on to the water to increase blood supply. You can also consider salt or electrolyte capsules. One person in our family takes 8 per day.

 

We don't have the digestive issues too badly so I can't help you much there. If you can get ahold of the blood pressure and tachycardia well enough, that should subside since the body is shutting digestion in favor of maintaining the brain when the blood volume is lacking. In the meantime I'd use probiotics and enzymes to help with digestion and bone broths/gelatin for comfort.

 

14 canbe a big growth year. If this is so for your dd then you can look forward to a bit of symptom reduction when growth stops. The problem comes from adding to the miles of "pipes" in your body that need to be filled with blood when you already don't have enough blood.

 

Our doc explained that exercise was important because the underlying problem is that the autonomic system isn't clamping down on blood vessels in the legs when your dd stands up but having strong muscles literally around those non-functioning ones is really helpful. If your dd can handle it then strengthening leg muscles can help. At least try to maintain what she's got. Maybe leg lifts from a laying down position would be doable? Hopefully that won't pull the blood from her head and torso. Add some ankle weights if she can take it.

 

About learning, our doc suspects that most/all of our learning problems are related to the POTS. Don't expect much until you get a grip on the POTS.

 

I have read of kids with POTS that end up bedridden then can't get back to where they were. Ever. Also permanent organ damage. Push to see the specialist sooner. I think you need an rx for pt and much more support. Do you have a blood pressure machine and a heart rate monitor? They're good to have around. Keep track of the effects from the changes you are making.

 

You mentioned other SN kids. Sometimes POTS is caused by an underlying genetic condition called Erlers-Danlos. Some variation of ED are scary, some are more benign. If there are others in your extended family with issues its worth checking it.

 

Hope I have helped. You can pm me if you want though I probably respond faster on the boards.

[brla]

Thank you. My daughter did end up bedridden for 2 months while doctors kept telling us different things, she kept getting worse. She has lost what little muscle weight she had and is now just forcing herself to even walk. I have an order for pt, but cant find someone who knows what to do with it.

 

I am going to a seminar this weekend for POTS and other autonomic dysfunction. The main speaker is the pots cardiologist we have an appointment with in June. My hopes are to get copimg strategies, names of pt that wont put her on a treadmill and know what they are doing, and to network in hopes of getting the right dr team.

 

Today, we start with a new hospital, new gi team. They said they know about POTS, but i am finding that isnt always the case.

 

I have a blood pressure cuff that we borrowed from a friend, but have no clue what i am doing as no one has explained what we are looking for or when to take bp. I did that on my own just out of desperation when she kept passing out and the doctor told us she was making herself and needed psychiatry. I was determined to prove there was a pattern and it wasn't in her head.

 

I agree that we need better help. If today doesn't turn out any better than the last gi experience, we are seriously considering Mayo.

[Minerva]

I have no experience with POTS but wanted to send hugs. 

[geodob]

Though POTS effects something called our 'automatic vascular constriction' process ?

Which is a pressure sensitive system.

That copes with the effect of gravity?

With a fixed amount of blood, which needs to be evenly distributed between our toes and our brain.

Gravity forces it down to our toes.

Which is drained from the top, in our head.

Where the blood vessels expand to create space for this extra amount of blood.

Pooling the blood taken from the head, in the legs.

 

But to avoid this drainage of blood from the head to the legs?

There is a mechanism that recognizes this change in gravity?

So that instead of the veins and arteries expanding to cope with extra amount of blood?

The veins and arteries 'constrict', and wont allow themselves to expand !

With no space to go, the blood is then forced back into the head.

 

But with POTS, this constriction of the veins and arteries isn't automatically happening?

So that the blood is drained from above in the head, down into the legs.

 

While the heart rate can increase to try and cope with this, to get blood up to the head?

This just stirs the blood in the legs, and doesn't help it get up to the head?

 

So that with POTS, the problem is with the 'signalling process', that recognizes and causes the veins and arteries to contract and squeeze  the blood back up into the head.

[Sandragood1]

Brla, good luck today! I hope you find a knowledgeable doctor. Some docs think that because they know the definition of POTS that they are able to treat it. That is not true. Our doc is local but I have met patients in his waiting room that have flown in. From halfway across the U.S.

 

You can use the bp monitor to find your dd'd baseline bp and check for trends up (hopefully) in respond to changes you make. The hr monitor will tell you when her heart rate goes nuts. My smart phone has a simple hr monitor app. You don't want the hr to go nuts.

 

Sandra

[OneStepAtATime]

Good luck OP. I agree with upthread, I have run into many doctors that think because they know the definition of something they can treat it...and they are dead wrong. I hope you get a doctor that actually knows what they are talking about.

Best wishes.

[brla]

Well, GI appt was good overall.  We don't have to go back to GI.  They said her absorption was good.  Her blood work looks much better from their view point.  The abdominal pain - they said it's the nerves in her stomach and that she will probably notice it especially after eating.  So, we will see.  I am giving her too much water and not enough other fluid.  They recommended coconut water smoothies - giving her maximum nutritional benefit with electrolyte water (coconut water), add in salt and sweeten with maple syrup or honey if banana isn't enough.  Also, bone broths and things like yogurt.  

 

One of the things they said today, that makes sense to me, is that until her body settles down, heavy meals will have the worst after-effects and cause her to have to work harder to digest.  They suggested charting that for a while and seeing if there's a relationship between the pain, heavy meals, and syncope.  

 

Next week is the cardiologist.  The GI doctor said that was where we will start getting into the nitty gritty.  She needs to be checked for some other heart-related conditions, according to the GI team.  

 

*****So, another question*****

how do you get the insurance company to pay for things like compression socks, wheel chairs, blood pressure cuffs, cooling vests, etc?  Anyone done that?

 

Anything else I need to know?

 

Thanks everyone!  

[Sandragood1]

I'm sorry I don't know about the insurance battles as most of our interventions were medications and diet/exercise. I took my moms old bp cuff so that was free and the heart rate app for my phone I already had for myself. I would think that the staff at a good medical supply store would know all the ins and outs of the insurance puzzle. I have sometimes seen wheelchairs and bp monitors at Goodwill. You can also check Craigslist.

 

Coconut water smoothies sound good if your dd likes coconut water. Some folks detest the taste. I think it is good with orange or peach juice. Maybe throw in gelatin for a bit of easily digestible protein?

 

I'm glad you had good results today. Hugs to you and your dd. it will get better.

 

Sandra

[geodob]

After eating, this requires a redirection of blood to the gastric system, and the 25 foot long intestine.

But a primary way that the blood is redirected?

Is a contraction of the veins and arteries in the legs.

Which basically squeezes a lot of blood from the legs.

This causes a pooling of the blood above the legs, in the area of our intestine.

 

So that you might consider the situation where the blood isn't being force from the legs up to the gastric region?

The intestine needs this extra blood, firstly because it is a muscle?

It uses a ripple muscle contraction along this 25 feet, to continually squeeze food along it.

But the absorption of nutrients, along the intestine?

Involves a process of exposure of the nutrients to the surface of the intestine, which are absorbed into the blood.

But this requires quite a bit of blood, as the surface area of the intestine?

Is about 200 square metres.

 

Though if we look at this as a gravity based system, with blood being squeezed from the legs to the gastric system?

It raises the simple idea of after eating?

Sitting back with ones legs elevated?

So that the blood is pooled in the abdomen.

[Heathermomster]

My Mother has your DD's condition and purchased a scooter off of Craig's List.  She is pacemaker dependent and takes bp meds.  Mom regularly has stomach pain after eating, but I don't believe that she's ever connected the orthostatic hypotention to the pain.  Your DD may benefit from a service dog.

[drjuliadc]

I have orthostatic hypotension, not POTS. I think it is just a milder form of autonomic dysregulation Taking 1/2 a teaspoon of really good salt in hot water or broth in the morning helps a lot. It just tastes better than in cold water. I like Premiere Research Labs Himalayan pink salt the best because the owner of that company tests raw ingredients for toxins obsessively.

 

There is a huge adrenal component to this. Taking adrenal cortex extract has been very helpful to me. I take 2 at breakfast and two at lunch. Here is my favorite kind.

 

https://www.emersonecologics.com/Products/EmersonMain/PID-ADR58.aspx

 

I would not recomend Gatorade because there are very few electrolytes and lots of sugar, but that is a very common recommendation. V8 juice has a lot of sodium and potassium and people who don't like to drink it often like it heated as soup.

 

My condition is caused by mercury toxicity that I got from thimerosal in contact lens solution (was wisely removed in 1990) vaccines (thimerosal is still in most)' amalgam fillings and fish. I am much better after treating that, but I stopped treating it to become pregnant and pregnancy makes it come back some.

[littlebug42]

We are not dealing with this but do know two sisters that both have POTS.  You can read about their story here. http://saraspins.org

 

They raised money for both of them to go to the POTS treatment center in Dallas.  They have both had incredible outcomes.  Hope this helps. 

[Ottakee]

I am not familiar with this particular condition but you might want to check out a few resources for help:

 

Children's Special Healthcare Services. It is through our local health department. They cover stuff (often including your copays) that your health insurance doesn't and can help pay mileage to these appointments, for durable medical stuff, etc.

 

You might want to see about applying for disability as well.  If she qualifies for at least minimal cash payments a month she would also get Medicaid to help cover any things that are not covered by your regular insurance.

 

Ask to talk to the medical social worker at the Children's hospital where she is being seen.  They are often a wealth of information and help for services, etc.  They might even know of camps for kids with the same/similar diagnosis, etc.

[Elise]

:grouphug: I am so sorry you and your daughter are going through this.  Please know that I am thinking of you both and hoping she finds relief soon.

[geodob]

Though has she had a blood test for B12 levels?

As a study published in Dec2013 showed a correlation between POTS and a B12 deficiency.

http://pediatrics.aappublications.org/content/133/1/e138.short

 

But the first study that showed this association, was back in 1962:

http://jama.jamanetwork.com/article.aspx?articleid=333407

 

B12 deficiency is also a cause of what is called 'Peripheral Neuropathy'.  That causes numbness and tingling in the arms and legs, and can cause muscle control problems.

Where B12 is basically involved in nerve cell signaling. 

[Tiramisu]

I have had POTS dysautonomia since 2001, and I have had a B12 deficiency, too. I don't know if B12 was a long-standing problem or if it was the result of a GI flare.

 

Dehydration will make you feel really bad and stir up symptoms. I have found SmartWater to help a lot more than regular water. Somehow it stays in my tissues/blood, while regular water will have me peeing it out and more. The test was to drink it before bed and notice that I wasn't getting up to go the the bathroom. When I don't have SmartWater or a knock-off on hand, I sprinkle Himaylayan salt in my water. I really don't know about the electrolyte levels for these things, but in my personal experience, they have been helpful.

 

Magnesium supplementation has helped, too. I have taken magnesium oxide which is not supposed to be a great type to take but it really has worked for me. I have had issues with magnesium citrate and am nervous about taking that. My PVC are greatly controlled with magnesium. I only take small amounts, no major dosing.

 

Please be very careful with decongestants. I can't take them at all. I also have to be careful with melatonin. Eating large meals also can mess with my system.

 

Gaining weight has helped, too. I once saw on the internet that there is a POTS doctor who advises his thin patients to gain weight. I am much less POTSY when I am heavier.

 

Go easy and make an effort to stay hydrated during illness and while recovering from illness, surgery, stressful events, etc.. POTS is worse during these times, and also in summer.

 

For research, it's very, very much looking into Ehlers-Danlos Syndrome as someone mentioned. Studies at the Vanderbilt dysautonomia clinic showed that a great proportion of patients are hypermobile. I am not hypermobile but my kids and my brother are. I am stretchy. I also have two leaky heart valves.

 

Also, allergies and also mast cell activation disorder can be a cause of or contribute to POTS. I don't know if it's related or not, but I have had less trouble since taking Claritin. My fatigue is better, too. Mast cell activation disorder has been found to be common in people with EDS, too.

 

The thing that helped the most and has made me into a somewhat normal person is exercising. There is a protocol out there to get POTS patients exercising based on a study that showed that many POTS patients recovered completely through exercise--but I believe quite a number of the people could not complete the study! Basically, it is recommended to start with a recumbent stationary bike and work up from there.

 

When I started exercising almost a year and a half a go, I went very, very slowly. I got a beginner's video and modified almost everything. Even so, I often made myself sick and had to lie down for hours afterward. But I was desperate.

 

I hit a point where I was so frustrated at POTS for taking over my life and at doctors who told me it was just anxiety. Finally, I printed out an article from a respected journal and went back to a GP who I knew to be very thorough. I made my case, telling him, everyone says it's anxiety but I really know from experience what anxiety is and I'm not anxious. He referred me to a cardiologist who was a stinker but who ordered a treadmill test. The techs doing the test were really freaked out by what my heart was doing once I got up and the nurse talked to me afterward and told me not to waste my time going back to the stinky cardiologist (she didn't actually call him stinky) but told me I needed an electrophysiologist. Once I went to that type of special cardiologist, I got the right diagnosis. Since I have found so many things that have helped already on my own, I have not been prescribed meds. But I have to see him again in the summer when my symptoms worsen.

 

The electrophysiologist told me to keep track of my triggers. He believes it is very possible to recover and he encourages exercise. One can have POTS forever but it's not common, especially when teens get it. It's also usually not disabling long-term once you find what works to feel better. My doctor said I would have episodes but they would probably last weeks not months once I got myself to a stable point by taking care of myself and avoiding the things that set me off.