Pediatric Pots?

[RIfainthearted]

I have POTS but need info on pediatric POTS. My neighbor, Matt, started fainting last Wed. Since then he has fainted (or fallen) when walking up stairs, in shower, while brushing his teeth, and several times while walking. He describes his legs as feeling "wobbly" and feeling dizzy before falling. His allergies were really acting up last weekend and up until last Tuesday. He's been to the ER three times (CT scan, blood workup, chest X-Ray, EKGs, ears, all normal). The hospital suggested that he be seen by a pediatric cardiologist tomorrow to have an ECHO and possibly, a halter monitor. Yesterday, when they checked his BP (prone, sitting and standing), he wasn't orthostatic but was tachycardic upon standing. In the original ER visit, he was orthostatic. I was in the ER with his yesterday and asked about POTS and the doc said that they don't use the term POTS with children. She said they just use vasovagal syncope. So- for any parents with affected kids, I have some questions:

Did the POTS symptoms start out of the blue or was there a trauma or illness that brought them on?

How did your child continue to go to school if there was the danger of fainting?

After cardiac problems are ruled out, what testing was done? (tilt table test?)

What type of doc diagnosed and/or treated your child? Neurologist?

What meds (if any) were prescribed?

What is the prognosis for POTS in children?

Hopefully, this will turn out to be a virus or something that's easily treatable. Since the docs seem to leaning in the vasovagal direction, I figured there was no better source of info on the subject than you parents. Thanks in advance- Susan

[juliegee]

Hi Susan-

How old is Matt? Very often a growth spurt, puberty, a virus, or other trauma, OR any combination therof can set dysautonomia off in children. The ER doc is wrong. Children can most certainly have POTS and NMH. Vasovagal Syndrome is another tern for NMH (neurally mediated hypotension.) NMH occurs when BP drops down very quickly and syncope often results. The tachycardia while standing is certainly suggestive of POTS as well. It is very possible to have both conditions. They are treated similarly.

I'm glad that Matt is getting an echo and halter monitor- they while help rule out a structural issue and hopefully catch his episodes of tachy.

Many children, including my son, was forced to homeschool during acute episodes or prior to DX and a treatment plan. My son missed almost an entire year of school waiting for his appointments and treatment plans from Johns Hopkins. Yes, TTT is the best way to DX. Most cardiologists and even many electropsyiologists are unaware of dysautonomia. There are a few specialists in the country who treat kids. Maybe share with us where you are located & members can recommend a doctor.

Kids take the same meds we do. My son benefits from Florinef, Thermotabs, and Lexapro (among others) to treat his dysautonomia.

Susan, keep advocating for Matt. You are a wonderful friend to help during this scary time. It helps to have a friend who knows the ropes.

Julie

[jekecana]

I agree Pots & vasovagal syncope are two different things although some similarities. My 5yr old was dx with vasovagal syncope @ 18mo (passing out started at 4mo) and he has never had tachy issues that are normally associated with Pots. Good luck to your neighbor!

[PotsMom]

Susan,

Like with adults, POTS/dysautonomia onset, course, severity, etc. are different from patient to patient. I have two teens - one's severe onset was after back to back viruses. In retrospect there were mild signs prior to that, but the obvious disabling symptoms were after viruses. The other's onset was gradual over time. We do not have the fainting issues so I cannot speak to that though certainly schooling / education has been impacted in a major way due to fatigue, etc. I don't know Matt's age but regardless of the type of onset, it is very common for symptoms to appear or worsen at puberty, growth spurts, etc.

It seems that the standard for diagnosing is the tilt test. Holters can be helpful as well. The poor man's tilt test can be done at home and can be very telling in and of itself. I don't have a link handy, but if you do a search I am sure you can find the description of this. With both of my kids we initially did that at home, and it was very enlightening. The formal tilt confirmed what we learned from that. I would encourage utilization of that tool while waiting for other testing. If you don't find it in a search, PM me and I should be able to locate it.

As to type of doctor, just like with adults, it's a matter of finding a doctor has has some knowledge and expertise with dysautonomia, and as we know that is a challenge. Sometimes it's cardiology, neurology, etc.

Like adults, meds vary widely with patients, tolerance, etc. The meds used with kids tend to be the same as those used with adults and are trial and error, finding the right fit.

Generally it is felt that kids have a better prognosis long-term than those who had onset as adults though again, every patient is different. From what I've read it is felt that the majority of kids will have good recovery by mid 20s. I have one at 19 who has had significant progress and one at 17 who has had little, if any, progress. Again, it's patient to patient.