Difficulty with specialist

[7moreyears]

I have a daughter who has had some physical trials in her life. She was born with a heart defect and a birth defect in one eye (and attempted to enter this world a little too far ahead of time!) She now has tested positive for lupus, her vision has plummeted, (she already wears contacts over glasses and only sees shapes and shadows in one eye unless it's huge letters)  and we're not sure what may or may not be related to that or to her heart or what. The lupus isn't diagnosed, but the bloodwork and urine tests are showing it and she has the typical malar rash and what looks like Renaud's phenomenon, only very bad and she doesn't have pain with it...it flips people out to see it when it kicks in though!

We sure would appreciate prayer for her. (we = hubby and I both use this board, although he doesn't post, but I express both our concerns)

We've had trouble getting her in with pediatric rheumatology, the doctor warned us of this. I'm scared for her. She's such a brilliant kiddo, in all advanced classes and their best flute player on top of that, but I'm also seeing her struggle with memory issues now more than ever. What used to be able to be played off as just being a valley girl is now turning into true concern. She'll work her tail off on something, carry it to the door, then forget to take it out. Or go to a room and forget why, or I'll ask her to do something and she'll go to do it, then turn around and ask for a reminder...sometimes more than once. She doesn't seem to realize the depth of this, and I'm glad. God only knows how many times I've had to go off to my room because of tears springing up when she does this. She was my youngest bio kid, and there was a time when we thought we'd lose her...at one point they put her down as failure to thrive, two times later we had to consider open heart surgery...she was doing so well these last few years that we thought we'd gotten past anything major.

So please pray for miss personality! (her pediatrician commented on this part of her character when she was only a few months old, and she's still a major people person with a personality that attracts people to her no matter where we are.

[MaKettle]

I am so sorry.  I will be praying for all of you.

[justine]

Prayers going up.  I hope you find out soon what is going on.  She sounds like a jewel...

[blessingsindisguise]

Absolutely I will pray!

It is a privilege.

blessings

[momofdag]

Prayers going out,thinking of you and your family

[karleen]

((((((((((((((((((10 and family))))))))))))))))

Prayers going up here.

[Malina]

I have a special sweetpea too, so I know how you feel.  Keep in mind that memory problems can be a result of stress, and there has sure been a lot of stress in your family lately!  Stress can also make autoimmune issues a lot worse.  Something to keep in mind!

I will be praying for healing as well as answers!

[7moreyears]

Thank you so much.

We do try to keep her stress levels down as much as possible, and I'm trying to teach her to be (get this) to have more of an attitude and speak out for herself as far as stuff that stresses her like expectations at school and teachers asking her to take their classes. She feels bad saying no when they ask. I explained that her decisions affect HER life, and those teachers won't even be part of her life next year, and she's doing better with that part of things.
One of her sisters is only 11 months older...and seems to have stolen the attitude out of me and left none for her little sister. LOL Maybe I can convince her to share?

I'm always looking for more ways to reduce stress here, so always feel free to share ideas. Also for ways not to get sick in the first place. We never really had much of a problem with typical colds and flu stuff until we moved and RAD kids came. Now that seems to be toning down, since I realized how nasty DD8 can be and learned what to start bleaching and cleaning on an almost daily basis. We don't keep birds or rodents for pets, but I'm not sure what else to do to avoid things, especially since we live in a city area now for the first time. (ew)

[Malina]

The problem is that stress play havoc with the immune system.  And with an autoimmune issue when the immune system is activated then it attacks healthy organs in the body.

I am not sure what to tell you about it, because a RAD tends to control the atmosphere in the home and keep the drama level high.  Not to mention the fact until recently your girls had you all to themselves and now there are 3 more people competing for your attention, two of whom are high-needs kids.  That is going to be stressful for any teenager.  It would be lots of change even if you had gone into a heavenly situation (if any blended family can ever be described as heavenly, but of course RAD takes it to a whole new level!).

The only thing I can think of is to make sure she has some recreational outlets that she enjoys, preferably outside the home.  Exercise.  Yoga.  Tai Chi.  Some kind of relaxation.  That will help.

Will think about it and if I get any great ideas I will tell you.  I am sure you will get a lot of ideas from the group!  Maybe someone here has had better success than I have in controlling the home atmosphere.  I was never very good at it until a few months before DD18 left. 

[Truebluemom]

So distressing for you all.  Will be praying!

[7moreyears]

She's now scheduled. Yay!

Tonight at church was a mess. Two oldest came running in the main section during church and got me...her hands were changing color and the one was really swollen. Had her lay down to check her heart and every time she laid down she got in tears and very confused and couldn't explain why, then she stood up and just kept walking around fast. I had her try laying down a couple times and each time, same horrid reaction, so called the doc on the way to the ER, she said yeah, get her in, called the Cleveland Clinic on our way there to have them fax records, called the ER to tell them what we needed them to have ready for her, we got there, they pulled her in back, everyone started smelling smoke and we were instructed to get outside.

Seriously now...

So DH comes and picks us up, I'm on the phone with the nurse, she directs us to the children's hospital, we get stuck with fire trucks and such from all directions going to the hospital.

We have to pass home on the way to the children's hospital and I jump out to get her military id card since we didn't have it and they require it as proof of insurance and to grab her MRI's and CT scans to take with us and in the meantime DH realizes we left two kids at church in all the drama (and not even the RAD ones!) so that's very close and he gets them and comes back right as sick child and I are heading out the door,  we get to the car and she clears up and is PERFECTLY FINE.

Which tells me this was her heart, which also tells me there would have been nothing they could have done anyhow. She just hasn't been symptomatic like this for so long.

So we're headed to her pediatrician tomorrow just to make sure of everything and I'm assuming they'll need to do another brain MRI just to rule that stuff out. In the meantime, we're keeping a close eye on her.

But hey, she's got the specialist appointment hooked up now.

[karleen]

((((((((((((((((((((10moreyears))))))))))))))))))

More prayers here for you and your family.

[Truebluemom]

Yikes!  What a scary experience.  What is going on with her heart?  Sounds like something that would make mine skip a beat or two.  Hope they figure this out quickly.

[7moreyears]

She was born with a symptomatic aberrant artery. It is supposed to be on the top, right hand side of her heart.

Instead, she has an arch on the bottom and that subclavian artery is on the bottom and on the wrong side. That artery is what keeps your blood pressure even. To get where it needs to go and do its job, the artery goes up and then across...behind her esophogus. Until she got stronger, she had difficulty swallowing. She has had problems with both tachycardia and bradychardia, but it has been a long time. There is the possibility of something called subclavian steal phenomena with this, and when she was highly symptomatic, they thought this was going on. (she was having drop attacks, etc.) That is a big way of saying she was passing out with no warning and they thought that the artery was stealing blood meant to be going to her brain, but the artery diverted it to keep her blood pressure even, which would explain the drop attacks.  But her heart cath was normal, although her body flipped out afterwards and she ended up being in the hospital a few days instead of going home the same day as planned.
It was a pretty big mess. Two different times they were going to do open heart surgery. I refused the first one after she told me that if that surgery was done, her angels would be taking her home. The second time, she asked to have it done...she was sick of feeling bad. Everything was in place and her team decided against it at the hospital the day it was planned. She's been doing pretty good with things recently as far as that goes until now.

With her being tested for lupus, I don't know how much of that is playing into this, but I don't know that it would be much. Makes no sense, but I'm not a doctor. However, I really suspicious this was heart related. Just a bit ago I talked to her to see if she remembered what she felt when she laid down and after thinking about it, she said it felt like her whole body slowed down, every part of it, everything was heavy and sluggish and even breathing was slow and heavy and it felt scary. It helped her to stand up. So my instinct is to guess a blood flow problem stemming from the heart issue, especially considering her one hand was swollen so bad.

[blessingsindisguise]

How scary!

Many prayers being said for you tonight!

blessings