More Doctors, More Worries....very long

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April777's picture
Joined: 10/01/08
Posts: 579
More Doctors, More Worries....very long

Zoey developed a rash 3-4 weeks ago in one armpit. I assumed it was irritation. A week later it was in both armpits. Again, logic suggested we didn't rinse the soap off well, or that she was damp when we dressed her, etc. So I've been keeping an eye on it, rinsing her better, drying her better, dressing her in looser clothing, and so forth. She isn't bothered at all by it.

Fast forward to this weekend. It spread to her chest, back and neck. So this morning I knew she needed to see the doc. We went in and the nurse practitioner said it's petechiae, which is indicative of blood accumulating beneath the surface of the skin. It can be a sign of something very serious, and she wants us to have a ton of blood work drawn to look for clues as to what is going on inside of her body. Once her doctor is back from vacation in 2 days she'll be calling me and ordering the blood work. The nurse practitioner did not want to order the tests until then because she isn't as familiar with Zoey's overall health issues, and feels the doctor will be more thorough. So we'll get the orders on Thursday and go to the hospital that day for the blood work. It will be a lot of blood so she said we'll be sent up to the pediatric floor where they're better at this sort of thing than the basic lab.

She also said that the doctor will most definitely be exploring the possibility that Zoey does not have vertigo, that she isn't fussy all the time from teething, and that her lack of sleeping isn't related to dizzy spells. The nurse practitioner said that our current course of action needs to be seeing how these all go together as one complete syndrome.

I prodded and prodded until she gave me worst case scenarios. We're talking blood clotting disorders, organ failure, leukemia. Major things. Don't get me wrong, the "best" scenarios are things like anemia or various non-life threatening blood issues. But she said at this point, seeing the petechiae rash and Zoey's overall health picture, something tells her that there's something big going on here.

I feel like my heart has been ripped out. 6 months and no real answers. 6 months of knowing something is wrong. What am I going to do if I come to find out that my baby girl has leukemia or something major like that? Google is evil in and of itself but if I Google "dizziness, irritability, sleeplessness, petechiae" and a few other things, I'm coming up with tons of cancer websites. I'm smart enough not to diagnose her myself and freak out about this unnecessarily but really, I'm just at a point where I don't know how much more of this not knowing I can take.

I know she's not right. My gut tells me something is wrong. It's been telling me this for months. Little things about her just don't add up. I'm just so afraid. And mad. But more afraid than anything.:(

bassicmama's picture
Joined: 06/05/06
Posts: 230

*tearing up* April - sending the biggest hugs your way. I can imagine how all the not knowing can get to you and create even more stress than the actual problem! :comfort: :bigarmhug: I am glad that there are finally enough clues to get the doctors looking in a different direction, and I am hoping and praying that it turns out to be something minor and completely curable or manageable. But even if it isn't - April, I don't know of many stronger, more dedicated, more vigilant mamas than you. Zoey is in the best of hands, and with you fighting her battles, she is going to be ok! Sending all the love, hugs, prayers and support in the world, hon. I wish I could do more!

marymoonu's picture
Joined: 03/15/08
Posts: 2183

Sending tons of hugs your way. I can't even imagine the level of stress you must be under with this. The feeling in your gut that something is wrong and not getting any answers must be gut-wrenching. And then to be pregnant on top of it all... You need and very much deserve some GOOD news soon. I really hope your doctor can put all these puzzle pieces together quickly. Six months with no answers is just not acceptable.

babyJtime's picture
Joined: 05/23/05
Posts: 682

We messaged back and forth a bit on FB but wanted to let you know here too that I am thinking about you and hoping for the best for Zoey!

I had tears in my eyes when I read the update on FB and then again on here. I wish I could do more to help you April.

Hugs Mama! Please know we're here for you!

harmonybear's picture
Joined: 06/06/07
Posts: 639

Oh, April. Sad

We'll be praying. :bigarmhug:

LittleMama07's picture
Joined: 03/09/08
Posts: 165

:bigarmhug: I can't even imagine how frustrated you are. I hope that she tolerates the blood work well & that you finally will get a concrete answer. Will keep you & your family in my prayers - actually, I'll have my mom put y'all on the prayer chain at her church too. Will be watching for updates.

Minx_Kristi's picture
Joined: 01/02/09
Posts: 1261

April, I have been following Zoey's progress and just wanted to let you know I am hear if you need someone to rant to. I can't even imagine what you must be going through not knowing what is wrong with your gorgeous girl, but I'm here whenever ok?

I hope the blood work brings back something for you guys so the healing process can start.

xx

DunyaWolf's picture
Joined: 07/25/08
Posts: 223

April just reading that makes me want to cry, I cannot imagine how scared you must feel. I'm not normally the praying type but I will be hoping/wishing/praying that everything is ok with Zoey and they can figure out what's going on and get a plan in motion to fix it. :bigarmhug:

ekcanada's picture
Joined: 05/06/09
Posts: 1707

My heart goes out to you, Mark and Zoey.

I can't understand why they were not doing all these tests right from the beginning?

Good for you to stick to your guns about knowing something is wrong with her! We are thinking of you constantly!!!

Girlandi's picture
Joined: 10/29/07
Posts: 49

Many, many hugs to you. :bigarmhug: The diagnostic stage is horrible, because there are so many things that need to be checked, eliminated, and then rechecked as new symptoms appear. Hopefully they can start to find some answers and it turns out to be something fairly minor. Whether it is or not, we will be here for you, with lots of support and hugs. You've been doing awesome, pushing to get her seen and arguing when you don't agree with what the doctor has said. Keep up the great work, and know you've got one huge support group here. As always, I'm available for PM/Facebook if you need it. :comfort:

April777's picture
Joined: 10/01/08
Posts: 579

"ekcanada" wrote:

My heart goes out to you, Mark and Zoey.

I can't understand why they were not doing all these tests right from the beginning?

Good for you to stick to your guns about knowing something is wrong with her! We are thinking of you constantly!!!

I think the lack of running certain tests is entirely because of how things presented. It was completely logical and reasonable to explore this as though it was a neurological condition when her eyes started rolling back in her head. And from what I understand (from what 2 different doctors told me), she got a very complete neurological work up. When that came back clear, we then went onto the next 2 logical specialties--vestibular disorders and eye disorders.

The tentative diagnosis of positional vertigo, we knew, was tentative because it's so rare in a kid Zoey's age that the doctor had never even seen it in person before. He set us up with an appt. with the only doctor in New England that he could find with any practical experience with the disease. We just haven't seen him yet.

I didn't really push the doctors about her other symptoms. When they tell me that vertigo causes issues with sleeping, laying down, and so forth it was totally logical for Mark and I to assume the vertigo kept her up all night. It can cause nausea so we assumed that's why her appetite is small (plus she's petite like me). She's been working on molars and then eye teeth constantly without a break since 13 months old, so her chronic fussiness was only mentioned to our pediatrician in the context of her being a terrible teether. So because I wasnt really considering that these issues were all related, I never really mentioned them to her pediatrician. I focused on the scary, obvious symptom of her eyes rolling back in her head. As a result, so did everyone else. The second they saw her rash though, they decided to act and try to figure out of its related to dizziness.

I think she's gotten decent care thus far. I really do. If the bloodwork comes back negative, my guess is that it will only help to confirm the tentative diagnosis of BPPV. If the blood work comes back negative, that diagnosis will be tossed out the window.

Oh and where that BPPV diagnosis is concerned--it's largely based upon a patient's description of how it feels, and also the doctor's ability to manipulate the patient to trigger an attack of it. We were unable to get Zoey's description or to trigger an attack that we know of, because it scared the crap out of her and she squeezed her eyes shut and cried. Were her eyes open we could have seen if her eyes rolled back in her head or what have you, or if she were older we could have gotten her description of whether it made her dizzy. But she's too young just yet.

This is all frustrating for me.

lilahstar's picture
Joined: 12/03/07
Posts: 324

Hugs and prays for you guys. My heart broke for you this morning. I'll be praying you and little Zoey. Hopefully you'll get some good news and Zoey will be a 100% soon.

marymoonu's picture
Joined: 03/15/08
Posts: 2183

"April777" wrote:

I think she's gotten decent care thus far. I really do. If the bloodwork comes back negative, my guess is that it will only help to confirm the tentative diagnosis of BPPV.

I hope this is the case!

Joined: 03/16/15
Posts: 53852

:bigarmhug: I can understand that you would be so scared! Not knowing is especially hard! I pray that you will have an answer soon, and that it's not serious. My thoughts and prayers are with you, Mark and little Zoey. :bigarmhug:

Joined: 09/08/05
Posts: 206

Oh hon, I can only imagine how stressful and frustrating this all must be. My heart goes out to you all, I really hope you get some answers to all this soon, and that it turns out to be not as serious as suspected. ((((((((((((((((((((HUGS)))))))))))))))))))))))

AimeeLynne's picture
Joined: 09/29/08
Posts: 572

I'm sorry April! :bigarmhug: That poor little girl, and you all stressed/worried/pg. I couldn't imagine going through all of this. I hope they can find some reason for all of this soon! Please keep your head up, you are doing a great job with her. I know its probably so hard sometimes, but you are a strong person, and I know you guys will be okay! You'll all be in my T&P!

PeppermintPatty's picture
Joined: 08/21/07
Posts: 426

So sorry you all are going through this. :bighug: Praying that Zoey's blood tests come back normal and all clear.

isisgoddess_1's picture
Joined: 03/29/08
Posts: 1220

I am praying that the bloodwork comes back negative. This is so much for one person, but you are strong and you and your family will get through this. We are all here for you too.

JackieJ1's picture
Joined: 02/18/09
Posts: 24

Well you just don't deserve this! My goodness you must feel defeated. Everytime you think you are on your way to a diagnosis, something else pops up.

I am praying and praying for you and Zoey. You are all in my thoughts and I wish I could do more for you but for now :bigarmhug: is all I can do.