My 10 Year Old Was Just Diagnosed...questions

[kjmom]

Hi! I've been getting so much information from this website so I figured I should post and introduce myself. My daughter has been sick since the beginning of Dec with stomach pain, nausea, weight loss, extreme fatigue, insomnia, brain fog, etc. We've been to every type of doctor trying to figure out what's wrong with her and she's been through countless tests. Finally, we got an appt with a pediatric diagnostician, who was the first person to mention dysautonomia to us. He started asking all of these questions that I thought were unusual but she answered yes to every one. Then he took her HR and BP when lying down and standing...her HR went from the 80s to the 130s when she stood up! I had no idea. He wanted to test her for gastroparesis to see if we could figure out her stomach issues (since this is her primary complaint), but the test came back normal. Still, since all of her symptoms fit, he diagnosed her with dysautonomia/POTS yesterday. She will be starting on Florinef.

We are scared but so relieved to have a name. But I still have some questions:

What could her stomach pain/nausea/weight loss be from if it's not gastroparesis? Are there other causes with dysautonomia? What can help?

We discovered that the only relief she gets (albeit temporary) is being completely submerged in a pool. She acts like her old self in there - happy, energetic, little pain. The doc mentioned something about the pool counteracting gravity...is that true? Do others have that experience?

I see a lot of adults on here with this condition, but does anyone else have a child with it? Has he/she been able to return to school? She's been out of school since Dec and it's killing her. She hates missing out.

Thanks for reading my story and answering my questions!

[Christy_D]

kjmom,

Welcome to the forum and so sorry you are here at all.

My son's main complaints have always been GI related, nausea, abdominal pain. My son's symptoms started when he was 10 and he is now 17. His symptoms became severe after a 7 inch growth spurt in the 8th grade. In the last 3 years, he has only attended school for 6 weeks. Now, don't let that scare you, as he has 'severe' POTS and everyone is different. This might be just a bump in the road for your daughter.

Doxepin helped him for that 6 weeks he attended school, but it stopped being so effective. I know other people on here have also been helped by doxepin.

My son's doctor had him doing water jogging to help keep him in shape because the water does help with gravity. While another doctor told us to stay out of the water so his body could learn to fight the gravity. We kept with the water jogging since he needed to keep in shape and it's not like he was living in the pool.

Christy

[jangle]

Kjmom, it is true that the buoyant force of the water counteracts the force of gravity such that the net force pushing the blood down is much lower.

Unfortunately no one knows explicitly what causes the gastrointestinal problems, however if you run a tilt table test on your daughter I'm pretty sure it will show that she has parasympathetic dysfunction as I did when I got diagnosed.

The parasympathetic nervous system is in charge of digestion, so any type of abnormality there can disrupt the natural digestive process and cause gastrointestinal problems.

However it is also possible that a type of hypoperfusion of blood is causing pain receptors to activate and that it can be explained purely by a cardiovascular argument.

Or it could be a fusion of both arguments, that the nerves need a steady supply of blood to operate correctly, and with the hypoperfusion it's causing the nerve dysfunction which is causing the pain.

Either way hopefully the florinef will work and take away the pain.

I myself am getting into theoretical medicine here but please refer to my thread on calcitriol, as it might also hold a precious key to unlocking this illness. You could bring that case study to your doctor and have him/her read over it.

I honestly believe POTS is a neuroendocrine disorder, that the autonomic dysfunction is caused by a low amount of ACE2 enzymes which causes an elevation of angiotensin ii to build up. ACE2 converts angiotensin ii to angiotensin (1-7).

Now angiotensin (1-7) are vasodilators whereas angiotensin ii is a vasoconstrictor. An elevation of angiotensin ii could cause systemic venous and arterial constriction which inhibits blood flow back to the heart. Additionally, angiotensin ii is found in brain neurons located in the regions responsible for autonomic control and it also is a neurotransmitter to the parasympathetic nervous system. There are many potential roles in which angiotensin ii could play in the pathology of POTS.

Dr. Stewart and Dr. Raj found that a portion of POTS patients have elevated angiotensin ii in their clinical research.

Calcitriol blocks the effects of angiotensin ii as in the study you can read about in the thread I started. Additionally trials of Losartan are underway in POTS patients, in my own case Losartan has helped me.

Wish you well. Your daughter has fallen ill young and that is very sad, that is such a tender age and one that should be warm and loving. However, take heart that the younger a person gets POTS the more chance they have to eventually improve in general.

[jpjd59]

I'm so sorry that your daughter has to go through this. I also have a daughter (23 years old) that was diagnosed with POTS (she had a virus in June of 2011 and in July 2011 the POTS symptoms started - took us until November 2011 to get her diagnosed). She also complains of stomach pain but the doctors have run all the GI tests and everything comes back normal. I am assuming it is a blood flow issue to her organs in her stomach that cause the pain. As far as school is concerned, my daughter had to withdraw from college classes last quarter but is hoping to return next quarter.

We have been to the Mayo Clinic in Arizona and to a specialist at Stanford.. It seems that every POTS patient is different and you have to find out through trial and error of what works best for your daughter. The doctors have tried several different meds for my daughter but she is unable to tolerate any of them. So we are now just on a regimine of 3 liters of liquid per day, as much salt as she can get in her diet, and next week she is going to start a cardiac rehab program (that should be interesting since she can barely walk around the house without getting out of breath!)

The good news is that I have heard that the younger a person is when they have POTS the better chance for recovery. Hopefully the medications that the doctors give her will help.

I have found that this is a great website with lots of helpful information. Good luck to your daughter and your family through this difficult time.

[Rylen]

The pool relieved my symptoms instantly. Even when being active in the pool.

[tachyfor50years]

Dear KJmom,

I'm so sorry that your daughter has to go through all that but I am glad that you have found this forum and she got the right diagnose, Trust me, I developed symptoms while I was only 5 years old and never got a diagnose until few years a go, it took 50 years! ! ! only God knows what I have been through.

I just wanted to welcome you and tell you that finding this forum and website is a great blessing.

Hugs and kisses to your daughter.

[songcanary]

I haven't been tested for gastroparesis, but I did have a small bowel follow through which was negative. I realize that doxepin doesn't work for everyone, but it really helped me. My nausea was so bad for three years that I lost weight to the point that I was afraid I would die before I got diagnosed. And I'm not kidding. I recently tried to taper off and within 12 days my nausea was so bad that I had to resume it. Symptoms were gone immediately.

GI symptoms for me are very debilitating; I understand what this must be like for your daughter. I hope that you find the right meds and treatments to help her. Many of us on this site (including me) have had symptoms since childhood. Thank goodness your daughter was diagnosed fairly quickly. I wish I could have had a mom like you. Best wishes.

[paona]

This is a forum with both accurate information and generally great support, so it's good you found it. My daughter was diagnosed with POTS at age 16. This formal diagnosis was done at the Mayo last May. By age 7 years she was reporting to us the feeling of her heart racing but since she was not standing or sitting no changes showed on her ECG. Two other direct relatives had tachycardia around this age as well but never mentioned any other symptoms or ongoing treatment and seemed to outgrow it. Our daughter also had all the symptoms you mentioned for your daughter plus many sensory issues, and allergies to strange things like food dyes and preservatives. We just thought she was wired like other relatives but looking back we realize now it was probably how POTS manifested for her as a young child. For many years she wore Irlen lenses (special colored lenses that used the color spectrum she needed) that helped reduce her light sensitivity, migraines, and visual perceptual issues. She has been on the Feingold diet since she was a young child to reduce allergic reactions and migraines. We treated many of her symptoms naturally but all of the things we tried while they helped her maintain, she still seemed overwhelmed and sick even though she pushed herself to keep going. By middle school I homeschooled her for 4 years to see if I could figure out more ways to support her through these strange symptoms. Our daughter was always at 50% for height and weight until mid- adolescence and then shot up to the 95%. Before going to the Mayo in May she was put on fludrocort since her blood pressure runs very low. She felt a bit less tachycardia. After the Mayo visit she was put on a beta blocker (metoprolol tartrate) and for the first time since being very young she was no longer nauseous and her appetitie returned. Previously she was severely obstipated and using miralax twice a day for about 2 years. She still needed the laxative for about half a year but tapered down and now she finds that eating a certain brand of plain yogurt helps and she's currently not using a laxative. The Mayo also was very direct with her about the need to get at least 8 1/2 hours of sleep a night and only increase her bedtime half an hour on the weekends. Not easy to do as she is a junior in high school and has some college courses. She has been taking melatonin since age 8 and zyrtax (for allergies) for many years to help her sleep. She is on a 504 at school if she needs more time on assignments. The Mayo also found that she was low in ferriton and was showing some hypothyroid changes on tests but not presenting with hypothryoid. They also found on tests that she was very deconditioned and told her she needed to slowly work up to 30 mn, of continuous on her feet aerobic activity 6 days a week. For her all the additional things added since May have helped her improve greatly but it's still day by day. Ours is just one story and there are so many variations of how this presents. What worked for my child may not work for another but sometimes having a next step is hopeful, something to hang onto. Excuse if I repeated anything or my sentences ran on too much. I have severe meniere's and cervical vertigo so currently struggle doing visual stuff.

[Trach]

Hi KJMom,

Welcome to Dinet. I am so sorry to hear what your daughter and your family are going through. My daughter was also diagnosed with POTS when she was 10 years old so I can definitely relate. My daughter was not affected at first with stomach issues until later, but I would recommend that you find a POTS specialist who specializes in gastro cases if your daughter continues to have problems.

Also, I found extensive help with school issues from DYNAkids.org.

There are many different theories and causes for the stomach pain/nausea/weight loss. The hardest part about dysautonomia/POTS is that it is a syndrome with many possible underlying causes. So, each person's case is unique.

There are some great articles listed on the home page of Dinet. There is also a an extensive handout on the NDRF.org website.

My daughter was homebound for 2 1/2 years, but she went to school on days she felt good enough to go if only for an hour. She started to get better after a major growth spurt when she was 12 1/2. She is now a freshman in high school - on the swim team and back in GT classes. I never would have believed it was possible.

[kjmom]

Thank you SO much to everyone who responded! This forum has been incredibly helpful to educate me on this illness. I had never even heard of it before. It bothers me that none of the docs we saw throughout this process even mentioned dysautonomia, and we saw some of the best pediatric docs in the country (at CHOP and Dupont). I am so thankful that we finally got the answer and didn't have to go through years of uncertainty.

Now I'm wondering if the chronic daily headache that I've had for the past 3 years may be related. How frequent does this illness occur among family members?