Lost, confused and scared

[s parks]

Hello everyone,

My name is Shelley. I assume most of you have felt these same feeling as I do...only I do not realy know what it is like to walk in your shoes....I have a differnt veiw on this horrid diseas. My child has been diagnosed with a "posible dysautonomia"...I put it in quotations because I do not think they ( her many doctors) have a clue what is going on with her and these quotations looks good on paper?

I am very emotional...and will try not to ramble. I have many hard questions that I need answerd, and if anyone knows the answer please spare nothing, because being in the dark hurts worse than the truth could at this point.

First let me say that we have tryed to get into this countrys leading doctors for evaluation and a real diagnosis...I am hoping to hear back from Dr Freidman in Houston this week...Dr Grubbs in Ohio reffered us there after not being able to get to New York to see Dr Axelrod. I pray this dr dose not fall threw because I need some answers befor I emplode.

My daughter will be 3 in May. She is the sweetest thing you could lay eyes on. She has a list of diagnosis a phone book deep. At first glance she looks like a average one- two year old. She is small for her age...maybe genetics...maybe her health issuse? She can walk, talk, reason. She has come a long way in the past 2 years scince she started therapy. She has made progress that makes my heart beam with pride for her.

To look at her you would not know she has a feeding tube under her little frilly dress....or a heart monitor wraped around her toe. When we fix her hair just rite you cant see how this week she has bald patches coming back. And unless you look real close you wont see the millions of little holes in her finger tips where we have to take her blood sugar 6-8 times a day.

These are the things you cant "see" the other things you can see are when others who are her age or worse...younger can walk up a flight of stairs...or play for longer than 10 minutes with out having to sit down and say... " mommy my heart is breaking...lay down with me" .... or have to stop playing to have to take more medication than most adults will ever take in their whole life.

There is much more...but I did promas not to drag this out. I want to ask some questions. They my not be easy to read...or to answer. If you know the answer...please inform me....please. Again.....these are tough (almost morbid to some people) questions that I need to know. I need to know what im looking at...Im a single mom..he left when she kept getting sicker and sicker. He did not want a less than perfect baby...and now im on my own...and these questions are ones that are better if you have some sort of a answer befor they broad side you on some idle tuseday............

Is there a "birth dysautonomia" ?

What is the life exspectancy for these babies who are born with this.

If these kidos do have a shorter life span...what is the average age.

Dose anyone know of a child who passed away from this diseas, was it a hard death? By that I mean did the child suffer or go quickly, peacfuly in sleep

Is there a cure?

What is the salt for? She has labs come back many times that her sodium is low...should this alarm me?

Why dont doctors know about this diseas? All of my daughters drs say this is best handled by her neurologist...not her cardiologist? She has tachycardia....dose she have to have POTS?

Ok...I realy could go on and on with all the questions I have, the ones that have been buring threw my soul I have coverd. I apologise if anything is offensive....my bluntness or the way I may have worded somthing. My daughter has a twin who we lost......on a idle tuseday...so i try not to hold back questions, even if they are tough and uncomfortable.

Thank You,

Shelley Parks

[lizzy]

i hear your pain in your post. HANG IN THERE.in the info top of this web is some great reading that might help you , but some for your guesguze for doctors just take time . and the good doctor to ansewer that must of us are looking ,you sound like a great mom, so take one day at a time infor youself and read has much has you can .i well pray you two , and thing WILL get better.

[taylortotmom]

Well, it sounds like you are doing everything you possibly can for your little girl. My daughter had significant health issues as a young toddler (non-POTS) so I understand your fear and frustration. Now, about POTS. POTS is fortunately considered a BENIGN disease. It can be debilitating but USUALLY is not life threatening. It sounds like you are having her seen by some knowledgable professionals. If she does in fact have POTS, it is a blessing that you have found out so early so you can begin treatment. There are many things that can be done to help the symptoms of POTS and one of which is to increase sodium intake. You had mentioned your daughter's sodium level as being low and this is quite common in the POTS population.

My best advice I can offer you is to be informed. Read all you can about POTS or any other disorder she might have. Make sure the doctors answer your questions- you have the right to know what is going on with your little girl and how best to help her. This forum can offer a lot of support. It is terrifying when there is something wrong with your child, but know that accurate information and proper medical care are invaluable. Good luck and much love and support.

Carmen

[Ernie]

Hi,

My POTS is genetic. I was born with it and there is no cure. There are patches that I take to ease the symptoms. I don't know the prognosis as I am the benchmark for doctors.

Nina has a list of very interesting links that you could read and learn from:

http://dinet.ipbhost.com/index.php?showtopic=1954

[halmad85]

I think the others have answered your questions well. I just wanted you to know that you and you precious daughter have my thoughts and prayers. I have two girls, and I just can't imagine how hard it must be for you to watch your child go through illnesses at such a young age. It can be very frustrating because as you're discovering, it is very hard to find a doctor who is knowledgeable about dysautonomias. I really hope that you find the answers you need soon and your little one gets effective treatment.

[DSM3KIDZ]

My heart goes out to you and your daughter. How horrible it must feel to watch such a little one suffer. I have 3 small kids and can't even imagine what you are going through.

My doctors said you will not die from dysautonomia but have uncomfortable symptoms. So symptom control is key. Is she currently taking any meds for POTS or low sodium?

You are such a strong wonderful mother for researching this illness. The more you know the better because if your well informed you end up informing the doctors more than they inform you.

I think there is a website for kids with dysautonomia. I'll post it when I find it.

We are always here if you have any questions or need support for yourself or your daughter.

Hang in there

Dayna

[persephone]

Shelley,POTS shouldn't kill anyone- it's more of a reflex that goes wrong. The disease isn't thought to be progressive. I've had it for the last 12 years (I'm 24) and I'm a full time university student. It doesn't have to stop your daughter from doing things. And I've been told that it gets better with age. There is hope- don't give up! As far as I know, this isn't life threatening or terminal!

[Jacquie802]

Hi Shelley,

Unfortunately with POTS, most people aren't diagnosed for quite some time, atleast that was my experience. Has your daughter had any tests done? It's hard for me to deal with this illness, but I couldn't imagine seeing a young child with it. Hopefully you and your daughter find a great doctor to help you out with all of this.

Jacquie

[JenniferInOhio]

My heart goes out to you and your daughter. I couldn't imagine my daughters dealing with as much as you described with your daughter. POTS isn't life threatening, just life altering.

[kmpower]

My heart goes out, too. We are here for you and never worry about the kind of questions you ask. Practice here before you see doctors.

[MomtoGiuliana]

I can't imagine how hard it is to see your child uncomfortable or in pain or so exhausted. As others have said, this condition is considered generally benign--meaning not life-threatening.

It can also wax and wane and even go away. Please try to maintain hope and instill that in your daughter too--I do know that is hard when things are tough. In any chronic condition, hope for improvement is key to recovery/improvement.

It sounds like your daughter may have some other conditions besides a dysautonomia? It isn't clear from your description, but it also sounds like you have not had a good diagnosis yet. I hope you are able to see a pediatric specialist very soon and get your concerns addressed, and perhaps more appropriate treatment.

Please let us know when she gets a diagnosis or if you have other questions you think we can help with.

Katherine

[Wufflebear]

Keep hope. You will both be in my thoughts & Prayers...

I started having symptoms around the age of 3. I would start to feel bad and go hide in the closet etc. I first fainted at 5 (I am 33 now). If she is dysautonomic, she will be ok. It is life altering but not fatal. Leave pretzels around for salty snacks...I do that for my daughter (she shows no symptoms yet but this can be genetic.)

There are many different flavors of dysautonomia...and I cant remember them all at this time.

The dysautonomia youth network is at http://www.dynakids.org . Contact them, they are really really good about getting back to you fast.

Dr. Grubbs latest article is at http://www.medscape.com/home , search on postural tachycardia (you have to sign up, but it is free)

I also like http://heartdisease.about.com/cs/womensiss...autonomia_2.htm as it gives you dysautonomia in simpler terms.

You can get books and videos of a conference on dysautonomia at http://www.ndrf.org/ParoxymalAutonomicSyncope.htm

[lthomas521]

Sorry to hear that your little one is so sick and with such a perplexing illness. Has she been evaluated for a possible mitochondrial disorder? If not, the local Muscular Dystrophy group can probably put you in touch with a local doctor who is knowledgeable about mitochondrial disease. Another good reference is the United Mitochondrial Disease Foundation: http://www.umdf.org/

[janineerrn]

Hi,

My thoughts are with you and your daughter. I can only imagine what you all have gone through. I think once you get her to a good doctors who knows about POTS, life will get better for you both. One of the hard things I found was not having a proper diagnosis for a long time. The routine diagnostics and medications for symptoms were making me sicker and stressing out my body which only made me feel worse.

The nurse in me wants to ask you a zillion questions..........

Good Luck

Janine

[MightyMouse]

Yes, one can have dysautonomia from birth. I am 41 and have been symptomatic since my childhood.

Also, there is a genetic variant called "Familial Dysautonomia", FD for short. If that's what is suspected, then Dr. Axelrod would be the doctor I'd suggest, as I know of family with 3 children with FD (who live in Florida) and that's who they see. FD has some differences from other dysautonomias, and tends to run in families who are Jewish--although not always. http://www.med.nyu.edu/fd/fdcenter.html

Most other dysautonomias are not progressive, and are not considered to be fatal. They can, however, be debilitating and/or limiting with regard to physical activity level, participation in school, family and community acitivities.

My best suggestion to you is to try to get a definitive diagnosis. Autonomic disorders are considered to be relatively rare, that is why there are so few doctors who are knowledgeable. You might want to look at the lists of doctors that we maintain at DINET

http://www.dinet.org/physicians.htm

There are other lists of doctors too--I have them linked in the frequently asked questions-help yourself topic at the top of this forum.

nina

[UnicornIsis]

I pm'd you info already, but I wanted to add something.

It may be that they're talking about Familial Dysautonomia. Which is something very different. Please call Debbie at DYNA Kids. I really really think she will be able to help you, if nothing else she will be able to introduce you and your daughter to others like her.

I hope you find some help for her.

UnicornIsis

[cmtaylor5]

Hi,

So sorry to hear about your daughter's health problems. I have to agree with lthomas. My husband had an employee whose child had a mitochondrial disorder, and I see many, many parallels. They had a very difficult time getting a diagnosis. I think the child's mom did some research and came up with the idea of mitochondrial disorder on her own. I believe the little boy had a confirming biopsy somewhere in Atlanta. His condition is not life threatening.

Wish I had more information for you!

Carolyn

[parkersmom]

I understand your need for knowledge concerning this illness. As an adult with this disease I long for knowledge and could not imagine if it were my child I needed it for instead of myself. I am so sorry for your loss. There is a doctor in Monroe, LA who has treated several children with POTS. He is the doctor of my nephew who was born with 5 holes in his heart and is now a healthy normaly little boy. I will put the address and number below and you can follow-up with this doctor if you wish. He is a world reknowned pediatric caridologist and flies all over the world to give lectures and teach procedures. I hope you can find help somewhere.

Best Wishes,

Jamie Jordan

Dr. Terry King

3510 Magnolia

Monroe, LA 71203

318-323-1100

[Guest Mary from OH]

First of all, HUGS TO YOU, I feel your pain and helplessness. I've been there... Keep reading, keep pushing for a "correct" diagnosis!! I had to do the same thing for my daughter! And really have to continue to do so all the time as her symptoms worsen.

My entire family has Dysautonomia. I have POTS, my husband has vasodepressor syncope and my daughter (6 1/2) has POTS too. My daughter too has a long list of medical problems. It IS very stressful on a family. PLEASE feel free to email me privately. My email is mtmallen@wideopenwest.com.

I'm not sure if you were given this hospital/dr for your daughter:

http://www.childrensheartinstitute.org/

Dr. Hasan Abdallah

Don't feel like you have to do this alone!! We're all here for you!! You have an extended family now!! Welcome!!