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Teen just diagnosed with POTS


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Hi, my teenage daughter has just been diagnosed with POTS by a cardiologist. We have seen so many doctors over the years who didn't have a clue what was wrong with her.  My daughter has palpitations, fast heart beat, constant nausea, exercise intolerance, gastric reflux, stomach pain, slow bowel motility, dizziness, near fainting episodes, purple/blue toes. and hypermobility. The cardiologist has suggested meds to slow her heartbeat and told her to exercise. We had a previous diagnosis of CFS and she has been unable to exercise for some time.

She also has very painful heels but a scan has shown no inflammation and the doctors don't know why she has pain when she walks. Orthotic insoles haven't helped.

An endoscopy showed no inflammation in the stomach but she has daily stomach pain.

 I would love to hear from other parents of kids with POTS. Also I am wondering whether we should see a neurologist. Any advice would be much appreciated.

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Like Kalamzoo said, has she been checked for Ehler's Danlos Syndrome?  Yes, Reynaud's, too.  With EDS, my daughters have all those things and more.  Don't ask me why the heels, but they both had problems with their heels when they were little.  Just couldn't walk on them.  My youngest walked on her toes for the longest time.  Someone once asked if she was practicing to be a ballet dancer?  Hardly, but she can take her leg and stick her foot on her head!  Hypermobile much?!  Would forgo the orthotics, nothing really helped.  That part just went away on its own.  We know about CFS, too.  There just isn't enough energy to exercise, and the exercise just makes an already tired person even more tired.  It's a vicious circle.  The stomach, yes, that's a big part of this too!  Propanolol for my oldest for her tachy, works wonders.  Ten milligrams is all she needs.  Some people need more, but so far that dose works for her.  I wouldn't go to just any neurologist, make sure they are really savvy about dysautonomia, POTS, and hopefully, Ehler's Danlos.  We go to Stanford, Dr. Jaradeh.  He's neuro, but he runs the Autonomic Disorders Clinic there.  He's super hard to get a follow up appointment for, but if you see his PA, Irina, you can get in a lot quicker and she's good.  Best wishes to you and your daughter!  Don't hesitate to ask questions, everyone here is super nice and there are some very knowledgeable people, too!

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Thank you. It's really kind of you to reply so quickly. The cardiologist suggested Ivabradine.  We are waiting for him to check with about her other meds before he can ok the prescription.  Our local rheumatologist said she's only slightly hypermobile but I am going to try to see a rheumatologist who has a special interest in EDS.

I've been told she has Reynauld's type symptoms in her feet but the cardiologist said that this is part of the POTS with the blood pooling.

 Dizzy -Do your kids manage to exercise? Have you found anything that helps with the stomach issues and nausea?  Our gastroenterologist is keen to do another endoscopy with a pill/ caspule camera but I don't see the point if it's all part of POTS. He seems to be still looking from Inflammatory bowel disease.  There's so many symptoms and so many doctors have been involved. It does make it more than a bit confusing.  I don't know now whether she has CFS or it was just the POTS all along.

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Hi Emily - sorry it took me a bit to reply...  Exercise, well, at the moment, no.  My oldest has severe cervical instability and it has caused a whole host of neurological symptoms, so she is almost bed bound.  She tries to get up and around when she can, but that, at the moment, that is the sum total of her exercise.  My youngest is trying to do her isometric exercises to help her knees.  She's got very week knees and has recently subluxed her patella on her left leg, so it is braced and she is getting a brace today for the other knee, as it is weak also.  She was exercising and it just got to slipping around too much.   I'm with you on the gastro testing.  I told a GI doc recently, I know she's got slow motility, so it seems a waste of everyone's time and money to do a test to prove it.  These poor kids are tested to death as it is, I'm not in to doing anything more than the absolute necessities.  That being said, sometimes you do have to jump through their hoops to get something to help them, though.  I would say, I'm not a doctor though, but that the CFS is most likely POTS.  There is so much fatigue with POTS because your body is always trying to do something it's not supposed to do, or some other part of it is just too sluggish.  But, I think they all come from the same source:  POTS.  That is strictly my opinion and I have now medical degree (although I was asked once, based solely on the fact I could pronounce my daughter's medication!) I would definitely keep that appointment with the rheumatologist who has the special interest in EDS.  Would highly suspicion that could be a possibility.  You don't have to be subluxing or dislocating constantly to have EDS.  My oldest is extremely hypermobile, but she doesn't sublux much.  But the doctor (well know neuro at Stanford) was very confident that she had it.  Her sister, too.  POTS and other autonomic issues go right along with EDS. 

To help with the stomach issues and nausea, we use a multiplicity of things:  Reglan - it helps motility.  Start slow though, real low dose.  Bet she could get away with half of the dose a GI would recommend.   Too much and it can produce an anxiety type effect.  We use the liquid.  It's easier to fine tune the dose.  Also, Zofran.  Greatly helps with the nausea.  If your daughter benefits from being somewhat sedated, try Phenergan.  It's an antihistamine, but is a wonderful anti-nausea.  Would be best not to take the phenergan too close to the Reglan, though.  They have a propensity to not work well together.  Can cause some side effects.  My oldest was little at the time and her motility was so slow that she was hardly eating.  After much testing and finally finding a wonderful pediatric GI, he put her on Reglan.  It changed her life.  She started thriving.  GI tract started working a little faster (but not too fast) and her stomach would empty better so that she would actually feel hungry.  I know a lot of people don't like it, but the only doctors that don't seem to care that she has been on it for a long time are her GI docs!  Amazing! 

Hope this helps!  If you have more questions, ask away!!  Always here to help!:D

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1 hour ago, DizzyGirls said:

I know she's got slow motility

For me eating very low fat helps loads with this. When I ingest fats with a meal my stomach just shuts down into hibernation, food sits there for hours and hours not moving, while with just things such as rice + steamed chickenbreast or just bread it is much less, perhaps 70% less. https://www.ncbi.nlm.nih.gov/pubmed/16537685

Also it seems ginger greatly reduces gastric emptying time by about half, worth a try maybe: https://www.ncbi.nlm.nih.gov/pubmed/18403946

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Thank you so much for replying. It means a lot to hear from other sufferers and carers.

Dizzy- I'm sorry to hear how badly your girls are affected.  I really hope their condition improves. Thanks for so much information.  I will ask the gastro when we see him this week about the Reglan and Zofran. I aksed our GP about these previously but he wouldn't prescribe those anti sickness meds. and said nothing could be used long term.   We find Movicol helps quite a bit with motility but nothing seems to stop the pain. Sea bands take the edge of the nausea but she could do with something more effective.  Have you found anything that helps with the abdominal pain or did that improve on the Reglan?

Her CFS specialist says that he has seen many children get CFS and secondary POTS. However, that concerns me. If she still has CFS, then how on earth is she going to be able to exercise as the cardiologist wants her to? The cardio is adamant that exercise, together with Ivabradine is the key to improvement but exercise can be dangerous for  people with CFS.

She started the Ivabradine and physical therapy exercises but not seen any improvement so far.

Have you found any foods more difficult to tolerate?

 

Marcus - Thank you.  Yes fat is very hard to digest. Neither of us can tolerate it. I don't fry anything and bake or steam. My daughter does like ginger although it doesn't seem to help with her nausea. Have you found any other foods troublesome?

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Exercise is one of those catch-22 things.  My girls' cardiologist was adamant about exercise, too.  But, how??!!  I've watched my girls try to do the things different doctors have said to try to be "compliant", but with results that leave them much worse than when they started.  I would think that something like tai chi (sp?) might help, but I know that sometimes there's just enough energy to brush your teeth and that's it!  No more spoons!  I love my daughter's saying "I'm sorry, but I can't exercise today, all of my "spoons" are in the dishwasher!"  Kids, so clever!

Food that is hard to tolerate?  Yes!  I agree with Marcus, the higher the fat, the harder to digest.  Boiled eggs, yogurt, peanut butter (in small amounts) seem to do well with my daughter with gastroparesis.  It's important they get enough protein.  Just thought of a supplement that the GI doc at Stanford recommended to us.  It's called iberogast.  I found it on Amazon, but think she mentioned it might come from Germany.  Don't quote me on that, though, just seems like she said you had to get it out of country.  We have not tried it, so have no idea how it works, but, it was recommended by a reputable source.

Hope this helps!  Don't hesitate to ask questions, I don't mind!!

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Dizzy - I love your daughter's comment about her spoons being in the dishwasher! It's brilliant. She sounds funny and bright. It's amazing how much our kids put up with and still retain their sense of humour. We saw the physical therapist today, who also went on about exercise and walking each day. So my daughter did the squat exercise and got sick and dizzy.  Everyone we see goes on and on about exercise and it's upsetting when  you can't actually do it. This is why the cardiologist has put her on Ivabradine - so she can exercise. It certainly will have to be the tiniest steps - quite literally. It's all she can do to get into school part time each day.

I wonder if we should have seen an improvement in her condition on the Ivabradine? Do you tend to see an improvement quite quickly if meds help your girls?

What tests did your daughter have for the gastroparesis? We are seeing the gastro this week and I know he wants to do more tests.

Eggs do seem to be easier digested than meat. I've been making everything non fatty for a long time and cook everything from scratch.

The iberogast sounds good. I will try some.

 

Sarah A33- Thanks for the welcome.

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Hi Emily,

When I was first diagnosed, my cardiologist and neurologist also recommended exercise. At that point, I was having palpitations most the time, had very few spoons, and couldn't really stand which made exercise... interesting. I started with beginner's yoga (online follow along videos) where I would do a couple of things and ignore the standing up parts. I worked my way up until I could do all the non-standing parts, and eventually some of the standing ones. Once I was well enough to not worry about drowning, I found swimming really helped; the water acts kind of like whole-body pressure stockings and I would have almost no orthostatic intolerance.

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Hi Emily. I have gastroparesis, which is common with dysautonomia. In my opinion, the test you need the gastro to do is called a gastric emptying study. Mine was done in the nuclear medicine department at my local hospital. You basically eat eggs mixed with some kind of something that the machine can pinpoint. They track the eggs through her stomach and record the time it takes for them to leave her stomach. If she fails the test, her doctor may put her on a med called Domperidone. If you are in the U.S., the drug isn't FDA approved and it would need to be compounded or aquired elsewhere. Some doctors won't write that script, but mine did and it made a HUGE difference for me. I don't know how you would feel about putting your daughter on a drug that isn't FDA approved, but I'm putting the cart before the horse. 

I developed POTS when I was 13 and was told it was deconditioning too when I was very active as well. My parents took me to another doctor who told them it was hormones. I wasn't diagnosed and given meds until I was 37.

Keep fighting for her. So much more is known and you have more resources than we did back then.

Your daughter is lucky to have you.

Kim 

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Hi Morrolan and Kimin. It's so good to hear your stories. Thank you Kim for your kind words. We tried yoga but it  made my daughter's gastric reflux so bad. She can't bend without getting reflux pain or lay flat.  I am going to take her for some very gentle swimming this weekend and see if she can manage. She's not keen though because whenever she's tried to exercise she's had palpitations but I'm hoping the new meds will help.

 Dizzy and Kimin - We had an difficult appointment with the gastro doc where he  didn't appear to accept  POTS  and/or any link to stomach problems. This was despite him having the diagnosis from the cardiologist in front of him! I asked about gastroparesis and the gastric empying study but he just wants to do an endoscopy to check for acid to prove my daughter has gastric reflux. She has had reflux for years.  We have now seen three gastroenterologists and are no further on. The first two just thought it was IBS or all in her head. She has had an endoscopy before because she had a very high Calprotectin test. We have tried PPIs, hypnotherapy and anti spasmodics. Wondering where to go next.....

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I am so sorry, Emily. I am now more convinced your daughter has gastroparesis. Before I was diagnosed, I couldn't bend over either because food or liquid would come up. The acid reflux was terrible and the acid reflux meds didn't help. Domperidone changed all that, but I went to 4 gastroenterologists before I found one that seemed to listen to me. I ended up telling him that I ate spaghetti one night and threw it up the next day about 14 hours later. He said, "Impossible." I was so tired and felt so bad I said, "It is possible because it is happening to me. I don't know how it is possible, but it is possible. I need someone who can figure it out." He did. He totally changed my life.

Pernicious anemia is a symptom of gastroparesis. It isn't 100%, but do you know if she has it? If her bloodwork shows that B12 deficiency, it would be more ammunition to throw at the next gastroenterologist. 

Keep going.

Kim

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That was a quick reply Kim. I am so grateful for yours and everyone's support.  I feel like I am in a crazy situation. It was bad enough when the doctors thought the CFS was all in our heads but I never expected the gastro doc to challenge both the POTs diagnosis and the reflux. Im not putting my daughter through an endoscopy just to prove to the doctor that she has reflux. He also said that a diagnosis of POTs was subjective,just a variation on normal and any link with stomach problems was unproven. My daughters heart beat goes from 100 to over 130 when she stands up! Hardly normal.  

She has low ferritin and low vitamin D.  That's a good idea about the B12.  I will see if they checked that. She's had a lot of blood tests which were all ok. The parathyroid was a little high though.

Its fascinating how long food can stay around undigested. An X ray showed my daughter has moderate loading. Movicol helps a little. Unfortunately she can't have Donpridone because of family history of heart problems.  I do think she has gastroparesis too.

 

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Hi Emily,

I just got a diagnosis of POTS and Ehler's Danlos type III in the last week.  I also have difficulties with hypermobility, but even after 7 orthopedic surgeries, (Five had failed) they hadn't caught EDS.  I ended up having two spinal fusions, and five knee surgeries, because they hadn't been able to find out why my orthopedic surgeries were failing.  The thing about EDS is that you may feel normal, like you look absolutely fine on the outside, and you may not realize you're different.  I thought everyone was able to subluxate your shoulder in and out just by relaxing muscles!  It stunned all my doctors, especially the doctor who fused my spine when I was a child (Scoliosis), because not even 4 years after surgery, I was so broken down below the fusion that I needed another fusion.  All of the collagen in my body is either damaged or missing, and it's thought that it caused my spine to fuse, and then weaken because there wasn't enough strength in my body to keep my vertebrae and my muscles from weakening and breaking down.  I was fused T3-L4, and then the revision took place at L3-S1.

Exercise is shown to help POTS in some cases, but the other big worry, if your daughter does have EDS or hypermobility in general, is the way she would exercise.  A feature of both of these disorders is intolerance to exercise. When you have both, it becomes very difficult to exercise. If our daughter is exercising and has hypermobility, I would have her evaluated for the way she walks/moves/exercises, as EDS can cause damage to joints if you are exercising the wrong way. 

I also struggle with low ferritin and Low Vitamin D, as well as low B12.  Have you guys noticed any correlation between her abdominal pain and food?  I went through an issue where I presented weirdly for Celiac, and then tested positive for it.  Have you looked into food allergies?

 

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I read through all this and didn't catch anyone talking about liquids.  My daughter, who sounds similar to yours, drinks on 3-4 Gatorades a day and it makes a huge difference with her POTS symptoms.  She is getting PT which is helping with so much and the home exercises keep her moving in a gentle way.  We're also trying to get her to the pool.  I encourage you to see a geneticist familiar with Ehlers Danlos.  My daughter just got diagnosed after 1.5-2 years waiting to see him.

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  • 10 months later...

Hi everyone, just got used to the POTS and now my daughter has been diagnosed with what the cardiologist thinks is SVTs. Her pulse rate goes over 200. I am confused now as to which palpitations are from POTs and which from SVT.  Scarily we have to go into hospital if it happens for longer than 20 minutes now.  Does anyone get a pulse rate this high from POTS?

Stomach pain is bad too. Now trying the low histamine diet but not helping so far.

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Yes she’s had an endoscopy. Thinking she needs gastric emptying study. 

Hey Dizzy  - my daughter just seems to get more conditions. Which ones are you juggling? Do you have much experience with the gastric side of things? We’ve seen 3 gastros, 3 cardios, 3 rheumos. Have now found a decent cardiologist but not making much progress with the rest of the puzzle. Wondering if we should see a neurologist next. 

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