Passing On Your POTS

[migraine]

Since I have been diagnosed with POTS, I constantly look for signs of it in my children. I have 3 girls and a boy on the way. When I was a child I constantly had headaches, was thirsty, and many of the other POTS symptoms. I was tested for everything and never seemed to be diagnosed. More frustrating was that no one believed me! My Mother, a nurse, knew that there was an actual problem, but rarely let me come home from school for headaches or just not feeling well...Oh yes, I had to have a fever!

My oldest child displays some of these symptoms as well. We were called about 3 times this year from school to come pick her up for a headache. In all honesty I admit I did not believe her. I made her stay at school one time and she came home finally with a fever. How could I do that knowing what I went through as a child. Was she having one of my childhood migraine episodes? She also got headaches as a toddler and I took her to a neurologist who found nothing. It's just such a generic symptom ...but could it be POTS?

Today I am taking my youngest daughter to an immunologist. Since she was 3 months old she has been sick about every other month with a viral or bacterial infections. We were shocked last summer that she actually went a whole month without being sick. We usually let this illness run about 3 days and then take her to the doctor who tells us nothing is wrong. We try to just treat her at home alternating motrin and tylenol. She usually has no other symptoms except a high fever of 105 or 106 that runs for 1 week to 10 days. Occaisionally we find out that it was an ear infection or strep...but usually just classified as a viral infection.

She has been in the hospital twice because at some point we were unable to get the fever down. They have tested her for everything under the sun including a painful spinal tap. We have been told at some point she had citomigalo viurs (CMV) which has been explained to me about 100 different ways and still is confusing and means nothing, and a few months ago chronic sinus disease. At times she has been anemic and I have taken her to a different doctor for a second opinion who also came up clueless.

Most people/doctors just tell me "some kids just get sick a lot," but I'm not feeling settled with that...and I'm sorry, but no one should have that high of a fever that often and for that long. My husband thinks I am a little sensitive to this issue because of all the junk I deal with with the POTS and being misdiagnosed for so long. I just want to find out what the heck is going on. And could this eventually be POTS related?

I hope to find out more info with the immunologist today. I can't help but blame myself that maybe some of my POTS symptoms have somehow passed down to her. I guess I'm just venting because I don't know what else to do. I'm hoping the doctor today will have an answer and a cure and that she will not have to go down the same POTSy road as myself.

[MomtoGiuliana]

migraine

I hope you get the answers you need. I so understand your concerns. I also worry about my toddler daughter and also have guilty feelings that I may have passed the problem on to her as well. At least I hope we will be armed with more information and better treatments in the next generation.

The odd thing, in my case and perhaps yours too, is that my mother does not have these problems. So, the genetic connection is not really clear in my case. My mother's mother may have had undiagnosed POTS/NMH. She had odd symptoms especially in her 30s and 40s that were never explained--fatigue, fainting, very difficult pregnancy/birth/postpartum. One of my three sisters has also been diagnosed with POTS. So far her symptoms have been mild enough that she has carried on with her life in a reasonably normal fashion.

Anyway, I am hopeful that my daughter will be spared this. I have to say it is another one of several strong reasons I have personally chosen to stop at one biological child.

As far as the high temps--I am going through that right now with my daughter. She has had a temp of 102-103 since Friday. I've called her doctor twice and they don't want to see her b/c they say it is viral. It probably is. It is so hard to see your child miserable and you wish it athousand times over on yourself, rather than your child having to suffer.

Maybe we do need a POTS parenting forum!

Hope the appointment is helpful.

Katherine

[Merrill]

I talked with Dr. Robertson at Vanderbilt at one point about this very issue, as I was heading into in vitro fertility treatments and had just been diagnosed and was afraid of "passing it on." He was very reassuring in that regard and told me it was extremely unlikely. (I'd have to find my notes to give you more details about what he said...but he did not express any concern whatsoever about my having my own biological children because of this syndrome.) Of course I've been unsuccessful twice now, so it may not ever be an issue...

I truly hope you find some answers at the immunologist today! Please let us know what you learn... (How old is your daughter now?)

m

[sally]

In our family, our orthostatic problems were inherited and both my girls have it from me. Although I went most of my entire life not knowing what the heck is wrong. We also have Ehlers Danlos Syndrome which is a genetic problem that both girls inherited. I think there are different ways to get this problem from viruses to genetics and it varies from what I've read on it. They didn't start showing real signs of the orthostatic problems until early teen years and now we all take midodrine to help maintain things after tilt table testing revealed what the problem was.

Good luck and hope she feels better soon

[migraine]

Katherine, your comments about your Mother and Grandmother are so familiar. My Mother does not show any signs of POTS. My Grandmother, however, forever has been known for having headaches, dizzy spells, and having to take afternoon naps. Now in her 80s she has major syncope issues and has a pacemaker. Her story sounds very familar to those on the forum, however she and my Aunt have been told, and convinced, she has a heart issue...even though she has had quirky issues with that diagnosis and passed out cold from the tilt table test.

Just like blue eyes or red hair, maybe this is just a genetic thing that could pop up at any lineage rate?

I was not diagnosed with POTS until after my 3rd child was born. I'm not sure that diagnosis would have stopped me from having more kids...and this fourth one. While this disease has been a minor to major pain during each day of my life, I don't feel it has totally prevented me from having a normal life...and I guess that's what I hope for my kids. Hopefully we will at least have the upper hand of at least knowing what it is and possibly how to treat it. My problem is I over-anylyze...does she have a headache because of POTS...or because she just has a headache?

Merrill, I am sending some fertility vibes your way! I was told I would not be able to have children due to a lack of mensus (probably due to POTS issues)(Sorry to the guy readers

) We just stoped trying and became pregnant. That sort of started a flow as I have had a child every other year since. I actually thought I was in early menapause when I became pregnant with this fouth one. Anyway, I wish you the best and you never know when the fertility Gods will strike

As for my little one...she just turned 3. Her appointment with the immunologist went well...finally a doctor that did not think I was nuts! Unfortunately she has to go through tons of tests. Yesterday she had 4 little needles placed under her skin for an allergy test. Today she had bloodwork drawn for about 15 different tests. Tomorrow she will have her arm looked at for the allergy tests. Friday we go in for a head CT and hopefully a reading of some of the results that have come in. I feel like I have put her through the ringer, but probably better to get it all done at once.

The doctor has a hunch it is a cyclical white cell count deficiency. He thinks each month her white cell count dips below normal leaving her susceptible to viral and bacterial infections that may be lurking. Because her white cell count is then so low, she has a very high fever and may take her longer to beat the infection. If the test results point in this direction he thinks it is easilbly managable and we might be on our way to a healthy toddler. To me it doesn't sound like it's POTS related either. More next week...

My husband and I have been looking into cord blood for this new baby. It is expensive, but I am frightened that due to my weird disease, my kids may be prone to getting other diseases. We know so very little about this POTS still.

Thanks for your support and I will keep you posted.

[MomtoGiuliana]

Regarding genetic connection--I think there must be one--in some to many cases. But, right, there is so little known, and there are most likely cases with no genetic cause. Actually, my *primary* reason for not having more children is two-fold--My husband and I decided even before we got pregnant the first time that we only wanted one for ecological reasons and that we also have a strong interest in adoption and two I had such a difficult pregnancy, birth and post partum experience mostly due to POTS that I don't want to risk going through that again, or it being worse the 2nd time. So, I guess the concern about passing on POTS is the icing on the cake, so to speak. POTS isn't the worst disease/syndrome possible to pass on to your child, of course, if indeed that were to happen. And treatments will improve over time too.

I agree with migraine that the fertility gods can bless us at unexpected times! There are so many success stories, and surprises, out there. I wish you the best Merrill in your continued quest.

migraine--please keep us posted!

[UnicornIsis]

Okay here's my two cents. I'm 21 and have been sick since I was 19. I got CMV Mono at college and within a few months, I never seemed to totally recover from the Mono, I was badly symptomatic of NCS/POTS. After looking back through my family and talking it over with my mom and the doctor we've figured out that it came from both sides of my family. My grandparents are dead and have been, but not from anything NCS or POTS related, so don't worry there. I was told when I was diagnosed that my case was heriditary and that my body had been able to over-compensate for the NCS and POTS until I got the CMV Mono which made my whole system so weak that it has not been able to recover. I was also sick as a child, had constant ear infections and strep throat many times. I was always at the doctor's office and it was nothing unusual to be there every week. I have had bad migraines since I was little, that my parents were first told was just sinus headaches becasue small children can't get migraines.-- That's what the doctors thought at the time, so right there you can see how things are progressing. In high school I had to have an altered workload because I was coming home with daily migraines that would last days to weeks at a time. After looking back with doc and my mom they figured out that I have been mildly symptomatic all my life. I just didn't know that everybody didn't get dizzy every time they stood up or moved.

I was told that I will most likely pass this on to my children because it is heriditary for my family and that it is so strong in me because I got it from both sides. I hope this helps some and doesn't discourage as much as it probably will. Plus sorry for the misspellings!!

[migraine]

Oh boy, that CMV correlation really scares me. I went through all of that as a child as well with severe headaches and then those powerful migraines hit in college. I always look at people funny when they are at work, walking around, and complaining of a migraine. I'm usually totally out of it for several days and incapable of movement...so I definately know your pain.

Well, Olivia and I went in for her allergy results....they were all negative, so we're still continuing down the path of the cyclical low white cell theory. Cat Scan tomorrow. She is only 3 and really being a trooper, but suckers and stickers don't hold much influence anymore. The other day the doctor brought out that little wooden stick to look at her throat. I felt bad that she actually knew what it was and that it would make her gag. She refused to open her mouth and we had to prop it open.

If they are not able to help her with all of these tests, I quit! Every time she gets a fever I say to myself, "Well, here we go again, why take her to a doctor, they're not going to do anything!" Then I freak out and take her in, they run a million painful tests, they don't do anything, and eventually she gets better. I don't know which is worse! Sorry, just a little venting here.

I'll be off-line after today until Monday. I'll fill ya in on that visit. Thanks again for your interest and support

[MomtoGiuliana]

migraine--your description of your pre-school daughter and doctor visits tugs at my heart. Young children are such troopers.

Of course you have no choice when she is running fevers but to take her in and have her tested for things. I really hope that you can get answers.

My 20 month old daughter was running a high fever for 5 days before her doctor agreed to see her on Tuesday. Poor thing, it turned out to be an ear infection. She's now on antibiotic, but has been through such misery.

Let us know about the next round of tests.

Katherine

[briarrose]

I watch for my kids too.

My mom has recently been diagnosed with POTS. The more they look at it, her and her sisters think that their mom had it too. At least one of my aunts probably has something like it, she just had 2 ablations on her heart this last year for her tachycardia.

My youngest son has suffered migraines since he was 9 years old. The school would some times call me 3x a week to come get him, he vomits horribly with his migraines.

My second to the youngest daughter has been suffering from stomach problems for about 3 years now. Some doctors say Irritable bowel, others say wheat intolerance. Who knows.

My middle son is constantly dizzy. He used to complain as a child that he was dehydrated and said he couldn't walk through the mall. I laughed at him because I thought he was too young to know what dehydrated was. Now I kick myself for being so callous.

My oldest child suffered many childhood strange illnesses. He had a high fever that they couldn't diagnosis then because they didn't know. But when I took him back to the doctor as a teenager, the doctor looked at his chart and said hey I remember this case and we now have a name for it - Parvovirus (50% of the society are said to have had this)

CMV has infected 50-85% of adults in the US by the age 40. Most people don't even know they have it. 1 1/2 years ago, one of the guys at work got it and he was so ill that they put him on best rest and pain killers. It has different effects on everyone.

CMV is a member of the herpesvirus group, which includes herpes simplex virus types 1 and 2, varicella-zoster virus (which causes chickenpox), and Epstein-Barr virus (which causes infectious mononucleosis). These viruses share a characteristic ability to remain dormant within the body over a long period. Initial CMV infection, which may have few symptoms, is always followed by a prolonged, inapparent infection during which the virus resides in cells without causing detectable damage or clinical illness. Severe impairment of the body's immune system by medication or disease consistently reactivates the virus from the latent or dormant state.

[migraine]

Briarrose, do you have your PHD I think it's amazing that we know all of this stuff because we live through it all the time. Your version of CMV was a little simpler than the one on the web. I ended up calling the doctor back because everything I read on the web pointed to AIDS and blindness. The doctors had to calm me down and try to re-explain CMV to me. My doctor always laughs at me when I look all of these diagnosis up on the web.

Olivia's final test, her head CT, was on Friday. I couldn't go in because I am pregnant so my husband went. I could hear her screaming and the technician yelling at my husband to hold her head. By the time we went up to see the immunologist (to read the results) she refused to look at anyone even resembling a white coat.

Well, her results from her head CT were negative. It looks like we're just going down a list and ruling out everything. The doc said he would call me in about 2 weeks with her blood work. They ran about 15 different cultures that had to be sent away to a special lab. We'll see what they reveal and I will keep you posted.

Since her hosptial stay about 3 weeks ago her sleep schedule has been a mess. From 5-7pm she just sort of zonks out. We try to wake her up but she cries and swats at us. Then she stays up until 11:00 or midnight. We ended up bringing her to bed with us just to get some sleep...and now we can't get her back into her toddler bed.

Briarrose, I count four kids...how is that going Luckily my oldest ones seem relatively healthy and hopefully the baby will be too. I always thought boys were not as likely to join the POTS/Migraine wagon, but in your case it sounds like they did anyway. I guess I'll just have to stay persistant if I see any other signs in my kids. I just don't want them to go through what I went through and then on top of that have no one believe you

[briarrose]

Migraine

You gave me a good laugh this morning I must say.

I'm glad things are going well so far and tests are turning up negative. Please keep us posted and try to keep spirits up.

I'm a single mom of 6 children. I just didn't write about all of them. My youngest daughter has been pretty healthy, accept she sneezes 50 x a day. She can sneeze 8x in just one go round.

And my oldest daughter has been relatively healthy, minus a broken leg and allergy to thimersol. She just enlisted in the Marines and left last weekend.

Well I'm heading to bed, talk more later.

steph

[DawnA]

Migraine, your daughter sounds very similar to mine when she was a baby. How old is she now? My daughter Carissa, who is 13 now , was sick nonstop from six months to two and a half. She had the same thing, very high fevers. She was usually fever free only a few days a month. Poor thing was so weak. They tested her for everything, but nothing showed up. Then she grew out of it. I hope this is your case.

Unfortunately, Carissa does have POTS with a positive tilt. She has had various problems since second grade. She was diagnosed because of me. Our neurologists are looking into mitochondrial myopathy. I have disease of the muscles, so I will have a biopsy done this fall. My youngest daughter has been dx with Crohn's and psychiatric problems. She is starting to show symptoms of of dysautonomia. My brother and mother both have symptoms, yet are very functional.

What causes the POTS is what could be heriditary, ie: ehlers danhos or Mito. My daughters are 9 and 13 and have already made the decision to adopt. It was my 9 year old who brought it up. It makes me sad. They do not blame me for their problems but they blame my mom. They do not care for my mom and have to be forced to see her. I still feel guilty taht they have to go through this.

i hope in your case, this is not hereditary and your child grows out of it.

Take care,

Dawn

[DawnA]

Oh my, migraine !!It sounds like you have your hands full. I hope you have a supportive family. I don't know how yuo do it as a sick mom. That must not be easy.

Dawn

[migraine]

Briarrose - 6 kids as a single parent with POTS. You should win an award or something There are some days I think I would be better off single...only because I would not have to clean up after my husband or worry about a romantic evening when I really feel like heck. He's a great Dad though with lots of energy and paitence...fabulous for teaching the art of riding a two-wheeler or first grade math.

Dawn A - Olivia just turned 3. Unfortunately it is probably too early to diagnose POTS. I would imagine if it's going to show its ugly sign...it will be in puberty. For now, I'd just really like to stop these fevers and chronic mysterious illnesses. I guess we'll just have to take it as it goes. I'm sorry about your girls.

I am about 6 months pregnant and to my wonderful surprise many of my POTS symptoms have either gone away or are quite unnoticable. I haven't had a migraine since my first trimester. (Knock on wood) With my last 3 pregnancies my symptoms got worse and I would actually lose feeling in half of my body during an episode. I have all girls and a boy on the way...they say you are not as sick with boys, so maybe that is what is happening. I'm so glad because I need all the energy I can muster right now. I'm also terrified that I will be slapped back with all my POTS symptoms directly during/after postpardum. I feel like I have been taking a break or vacation, if you will, from POTS.

[DawnA]

Migraine, I hope Olivia outgrows the fevers, poor thing. It is hard to see your little one always feeling poorly. It is great that you are feeling better with this pregnacy. I hope it continues. I was sick with both of my pregnacys, which where girls!!!

Briarose, I ment to put your name, not migraine regarding being a single mom. I am sure you figured it out. I am terrible with names!!!

Take care, Dawn