Update on my seriously ill dd's condition

[TravelingChris]

So my 18 yo is officially medically withdrawn from U of Al for Spring Semester. She can't live alone (or in a dorm) right now because for an unknown reason as of now, she faints repeatedly, even sitting down, is very weak most times, and never back to normal strength, and has severe vision problems, plus breathing problems and chest pains. She is also very cold (she feels cold and her lower extremities feel very cold to everyone else). She has been making the round of doctors here since the beginning of spring break. She developed this problem on Feb 17th and was in the ER three times while at school. They thought all her problems were caused by anemia but once tested up here, she didn't have anemia any more.

 

Anyway, she was told to go to a sleep clinic to rule out narcolepsy. The sleep doctor doesn't think she has narcolepsy but will do a sleep and wake study (almost 24 hours in a room) to rule it out. However, he noticed her feet. She has purple toes. He thinks that the heart doctor, who he knows and is friends with, got it wrong and that it is a circulation problem/low blood pressure problem. Now we already knew she has two kinds of low blood pressure problems and these problems aren;t like the other two. In one, she has a condition like about 2-3% of the population where she gets faint from severe pain or other nasty events like getting her blood taken-- not anyone else's blood, just hers. Then the second is called neurally mediated syncopy or hypotension- which is that when her heart receives a signal to increase the blood pressure, it does the opposite so she tended to faint with exercise, heat, singing, etc, which are normal activitities where your body raises the blood pressure. Now this doctor thinks she has an even more severe circulation problem. We have asked her primary care doctor to write a referral to the autonomic dysfunction center at Vanderbilt. She also does have a scheduled appointment in late May at the Mayo clinic in Jacksonville FL.

 

It has been so hard for me these last month and a half with her. She is a great child but taking care of an adult who at least one quarter of the time is incapacitated while also taking care of the younger one who I am still homeschooling and who keeps getting near anaphalactic reactions (another one this Wednesday when she got her allergy shot) and also has what seems to be a return to her arthritis she had as a five year old, plus having my dh gone most of the time (he is AD Air Force) and me being chronically ill with a few different diseases plus probably going through menopause really really sucks.

 

The college girl is planning on taking online classes this summer so she can do them when she isn't fainting or collapsing from home.

 

Thanks to those who are keeping us in your prayers and thoughts.

[LittleIzumi]

:grouphug::grouphug: Praying they find some answers!! :grouphug::grouphug:

[Joanne]

:grouphug:

[SJ.]

:grouphug:

[DawnM]

So sorry. I too hope they can find out what is wrong.

[Tap]

Any one of those things is stressful, I can't imagine what it is like to have all that happening at once! :grouphug::grouphug:

[dirty ethel rackham]

Praying that you ... that you receive the strength and relief needed to endure this, that the doctors find out what is wrong and find appropriate treatment, and that you can get a break from all this stress.

[KayT]

I am very sorry the three of you are having such a difficult time.

 

Praying for all.

[creekland]

Thanks for the update. You definitely have our continued prayers that they find the cause and are able to fix it. :grouphug:

[StaceyinLA]

I hope y'all will get some answers, and fast! Praying for strength to get y'all through this time as well.

[Teachin'Mine]

Praying for all of you. :grouphug:

[myfunnybunch]

:grouphug::grouphug::grouphug:

 

Hope you get some answers soon.

 

Cat

[NorthwestMom]

What a challenge. My DH had a round of unexplained fainting and anemia a few years ago, and after much testing we never found out what was wrong. He hasn't fainted for 2 years now, thank goodness. I wish you all good health and strength as you make your way through this.

[sparrow]

:grouphug::grouphug: I hope your family can find answers soon.

 

This may sound crazy, but my *dog* suffers from the autoimmune disease called Addison's Disease. When you mentioned in your post that her extremities are cold, I thought of my dog in an addisonian crisis. The pads of her feet and her lips were freezing. Addison's causes low blood pressure, which can obviously lead to fainting, in humans. Here's the Mayo Clinic's page for Addison's:

 

http://www.mayoclinic.com/health/addisons-disease/DS00361

 

Take it for what it's worth. I just know autoimmune disease and disorders are SO hard to diagnose and often mimic and piggyback on each other. My mom has Sjogren's and Rheumatoid arthritis. She was hospitalized for a month, and declining quickly, before they finally pinpointed what was going on.

 

:grouphug:

[QuirkyKapers]

:grouphug:

[Jean in Newcastle]

Continuing to pray. :grouphug:

[ThisIsTheDay]

:grouphug::grouphug: Praying for your dd, you and your family here, Chris. It all sounds so very hard, and I'm sorry that you are going through this.

[WillametteMom]

:grouphug: and prayers

[UmMusa]

I hope you get some relief.

[eternalknot]

You're a real trooper. When my husband deployed and people said that, I'd think: "Well, what choice do I really have?" but you're pushing through your own physical issues to care for those of your girls. It can't be easy. You're doing awesome, Mom.

 

For decades my SIL had physical problems that eluded many specialists until one doctor found the common denominator: low body temperature. Fixed that, and now she's a new person. The feeling of powerlessness can get overwhelming when doctors can't pinpoint the problem - I sure hope they get to the bottom of your DD's health problems soon ((((hugs)))) and that your youngest DD's don't continue to complicate the situation.

 

Stay resilient, and make sure you keep taking care of yourself, too.

[In the Rain]

:grouphug:

[Nancy in NH]

:grouphug:

Nancy in NH

[MariannNOVA]

:grouphug:praying and keeping you all in my thoughts.:grouphug:

[PollyOR]

Oh goodness! I'm so sorry to hear she had to withdraw from school. That has to be discouraging for a young adult who is ready to go out in the world.

 

My daughter has purple feet and it can be so frustrating not to have answers or to feel like the doctors aren't as concerned as you are.

 

:grouphug::grouphug::grouphug:

[Catwoman]

Still praying here, Chris.

 

Thanks for the update, but I wish it could have been much, much better news.

 

:grouphug::grouphug::grouphug:

[kitten18]

:grouphug:

Praying for your family.

[LNC]

I sent you a pm.

 

Praying for you and your daughter!

[Puma Mom]

How stressful! I pray the doctors figure it out.

 

Does this have a name?

In one, she has a condition like about 2-3% of the population where she gets faint from severe pain or other nasty events like getting her blood taken-- not anyone else's blood, just hers.

I have this and so does my mother. Generally it's from sharp or severe pain, but I think it might be related to the adrenaline rush out of my body that follows the rush in. Getting blood drawn doesn't bother me, but a serious whack to my funny bone would.

[love2read]

This sounds like what one of the girls on my dd's sports teams has and it took them months to figure out that it was the circulatory system and low blood pressure. If you want me to ask more about it send me a pm and I'll give the mother a call.

[Denisemomof4]

:grouphug::grouphug::grouphug:I am so sorry you are dealing with this.

 

My dd12 also has neurally mediated syncope, also known as vasovagal syncope. I am surprised your dd suddenly got so much worse. Dd also has low blood pressure. Are you making sure your dd is well hydrated and has adequate salt intake? Is sh on meds for her condition? Is she elevating her legs when she is sitting?

 

I am really surprised that your dd is so cold due to her condition. My dd is having the opposite. Se has hot flashes and is extremely hot all the time.

 

If you have a FB account, there is a vasovagal syncope grop there where you might find u expected answers, tips or support. Also check out Dynakids.org.

:grouphug:

[TravelingChris]

We know she has vasovagol syncope which is the condition that affects about 2-3% of the population- that is caused by things like taking blood, severe pain, etc.

 

Then she also has neurally mediated hypotension and she is on medications for that (midodrine and florinef) and she is also drinking a minimum of 64 oz. of Powerade a day plus more liquids like milk and juice and she liberally sprinkles salt on many things like salads, meat, etc. SHe was a big salt eater all her life and I was thinking that she was eating too much. Turns out that she really needed it. This condition made her turn ghastly pale (like a zombie) and then faint. Everyone could see her turning pale and knew what was coming next. IF she got one of these, she would be unable to think clearly for hours afterwards. These happened in hot weather, exercizing, anything that should normally raise the blood pressure. Hers would be lowered instead. Oh, and not only did she take the special medicine to increase blood pressure but she takes large doses of ADHD medications that also raise her blood pressure. She still has on the low end of normal even with these medications.

 

We didn't think these episodes were related since in the neurally mediated hypotension, she turned so pale. With this, she stays normal colored. That is, all except her toes, which are purple. That is why the sleep doctor thinks it is all related to something wrong with her circulation. He can't understand why with all these medications , she is still passing out or getting so weak so he thinks it is more complicated than normal. She passes out in chairs. That is what the really strange thing is. She did it several times today.

 

I really almost cried when we talked with the sleep doctor. He was the first doctor we met who totally didn't think this was any kind of psychiatric condition. Others have suggested anxiety or depression but a) she isn't depressed except normally sad that she can't do things but overall she is keeping up very good spirits and is continuing to work at doing good works (sewing dresses for little girls in some country in Africa) and studying and learning. She isn't having any symptoms of depression. SHe also is less anxious than I have often seen her mainly because she is way too tired to get anxious. But her anxiety is phobia based and also she has had panic attacks. She isn't hysterical and she has never been one to complain about physical ailments. As it was, she went with a broken arm for one week without complaining and only after a week did she bother to tell me that her arm still hurts and we found out it was broken. She tends to ignore physical ailments, not dwell on them. Furthermore, she is losing a lot by being sick. She was doing an internship at a church learning how to work the sound board, she was doing important research for a professor, she was getting all A's in her classes, she had friends at college and none here. Why would she be wanting to get herself sick? I don't even know how you can go about turning you toes purple and making your legs icy cold. The sleep doctor, who is a psychiatrist who specializes in sleep disorders, didn't think she had any psychological cause for the problems. Neither did the eye doctor. But some others seem to think that if they don't know what it is, obviously it is psychiatric versus just that they don't know. I already have one child in this family who had a very rare disorder with less than 200 cases worldwide-and no, I wasn't the person who figured it out. I had thought it was likely a more common, but still rare disorder.

 

Thanks for all the PMs/ I am also going to look into how to get her into the Cleveland CLinic and I certainly am going to be reading the references people are sending me. We are noticing some patterns- one, if she gets excited, she temporarily gets more energy but within 10 minutes, she is much worse off than before. This tends to happen in the evenings when her adhd medicines are totally worn off. Also, she was waiting in the sun? heat? for 10 minutes and was really much weaker the rest of the day. The first day she was passing out repeatedly in a chair (at a symphony concert no less with loud music), that afternoon she had been in the sun more than an hour.

[Jean in Newcastle]

I know that someone else mentioned Addison's disease. After reading your last post, I'm even more convinced that she needs to be checked for this.

[Laura in NC]

I am praying for you and your dd. I am so sorry you all are going through this.

 

Our dd11 is showing symptoms of Dysautonomia also and that's the first thing I thought of when you mentioned your dd's symptoms. My dd is always hot or cold but never regulated. Her blood pressure is lower than normal also. She also develops a rash/hives every time her body is under stress due to illness, season allergies, etc. which her Ped. thinks is an autonomic reaction.

 

Please keep us updated. I will continue praying for you and your dd.

[Melissa in Australia]

:grouphug:

Thank you for keeping us updated, I was wondering how she was going :grouphug::grouphug:

[Amber in AUS]

Hopefully you will have some answers soon. Keeping you and your DD in my thoughts.

[lailasmum]

Could it be POTS/Dysautonomia? The vaso vagal sycope is a symptom of dysautonomia. It could have become POTS I have heard of that happening.

 

There is a charity called STARS that have a huge knowledge of these sorts of conditions and might be able to help you. They are really helpful. They have two websites The UK oneand a USA one. The people who run it are really helpful and can link you up with a specialist doctor or pass you to other people for more advice. The UK site has more staff from what I hear so it might be worth contacting them rather than the USA site. There are lots of stories from patients with POTS here.

 

Symptoms of POTS from their site are

 

• Increased heart rate (tachycardia)
  
• Chronic dizziness
  
• Light headedness
  
• Insomnia
  
• Palpitations
  
• Blurred vision
  
• Weakness
  
• Pooling or discolouration of the ankles or feet
  
• Chest pain
  
• Loss of concentration
  
• Migrainous headache
  
• Fatigue
  
• Shortness of breath
  
• Coldness of legs and fingers
  
• Body temperature regulation issues
  
• Hyperventilation or very fast breathing that can result in loss of blood pressure and fainting
  

There is also a website called Dynakids that has a lot more information about symptoms.

Edited April 15, 2012 by lailasmum

[SweetIrony]

I just know autoimmune disease and disorders are SO hard to diagnose and often mimic and piggyback on each other.

 

This is so true. I am amazed at how many different things this is sounding like to everyone! The symptoms of weakness and breathing problems reminded me of my SIL's myasthenia gravis. Her symptoms appeared suddenly when she was in her late teens, and she had many doctors think it was just depression and insist that she was really fine.

 

Praying you will get answers soon, OP. :grouphug:

[Rosie_0801]

:grouphug::grouphug::grouphug:

[Denisemomof4]

There is a doctor in Ohio who specializes in her condition. If someone referred him to you (cleveland clinic?) then you probably already know the name. If not,p,ease pm me and I will get it.

 

I am so sorry you are dealing with the anguish of having her symptoms blamed on psychiatric issues. That is INSANE. When dd recently saw a new cardiologist, he asked me if she was anxious. I thought it strange, answered "no" and asked him why he asked. He said that many people with this condition also have anxiety issues. I makes sense because they never know when the next episode will suddenly leave them incapacitated! He also told me that most people who have neurally mediated syncope also have Chronic Fatigue Sybdrome. We have always been told dd will get worse when her cycles start, but the good thing is that things calm down and symptoms mostly lessen or go away by mid twenties. This is closer for your dd, and that is GOOD. It doesn't help deal with the here and now, though. :sad:

 

If you remember to, could you please PM me if you find any new leads, helpful tips or info, or experience with Cleveland clinic? I worry about what will happen with my dd.

 

It is interesting that both our dd's also have pain tolerance. Dd walked around with a broken wrist for a few days. She never once cried or complained!

 

Oh, i want to mention that dd's symptoms started when she was only four years old. The zombie look, that sickly, chalky paleness, scared the heck out of me. Dd's lips would turn blue and that bluish coloring radiated up around her nose and beneath her eyes.

 

I do think further testing needs to take place with your dd. It doesn't make sense that her toes woud turn purple and cold since her condition is brought on by the veins in her legs dialating and all the blood rushing down to them. It seems impossible that her feet would remain purple and cold, doesn't it???:confused::confused:

 

I really, really hope you find someone who will really help your dd. Stay strong! I know this is so extremely difficult. It is TORTURE for a mom to watch their child suffer. Your dd sounds like an amazing girl. Another thing we have in common.

:grouphug::grouphug::grouphug:

[Lisbeth]

:grouphug:

[Lizzie in Ma]

I am so sorry you are having such a rough time. I hope and pray they are able to figure out what is wrong and DO something about it. May is just around the corner, hang in there.

:grouphug::grouphug: