OT: I'm worried
 

My older daughter has not felt well for the past month: fatigue, nausea, weakness, headache, fever for 2-3 days then none for a day then resumed temp. Finally went to her PCP two days ago and had a battery of labs drawn. PCP suspected LYME disease or something similar.

This morning at 8, the doc called her to say liver enzymes were off the chart and she had to get to the hospital for an ultrasound of the liver so I have had my 3 year old grandson since 9. Heather came back here at 11 to say the US had showed blood clots thoughout the liver and they were admitting her to the hospital for 2-4 days for tests.

Right now she's having an MRI of the liver. Her husband got off work early and just picked up their son and headed to the hospital. Apparently they have ruled out gall bladder and hepatitis but have no next line of diagnosis that sounds benign. Husband is really worried. This is the first time in their 5 years of marriage that they will have spent the night apart.

This girl has never taken a drink, never done drugs, won't even take tylenol for a headache and is a strict vegetarian. I cannot imagine what this is but I know my child is not well.

Cherie... you don't ask for prayers, but I'm praying for your daughter right now, that the doctors will quickly find the source of the clots, and that she will be okay, and quickly!

Also praying for your mother's heart... I don't care how old our children get, we are always their mothers, and worry is our middle name! May you find peace and comfort while waiting for the answers to come about.

Dori

Dori,
I gratefully welcome and accept all the prayer support anyone is able to give. Thank you.

I am so sorry to hear this. It sure sounds scary. I will say a prayer for Heather, in hopes that this is a fixable thing and for You and the Family, that you have the strength to get through this awful worry.

Thinking of you and yours,

Thank you so much.

Cherie:
You and I didn't get off to the best start, but I do want you to know that I am thinking of you and your lovely family. How utterly frightening. Do you reside in an area with high rates of Lymes?

I wish all of you well.

Chris

Yes. Per capita there are only two areas in the world with higher incidence of LYME than we have. Heather just called me from the hospital to say they'd put the MRI on hold because the Ultrasound lab had had a second reading of liver hemorrhage today after her test and this is a rare finding so the equipment is being tested. Tomorrow morning they will repeat the ultrasound with different equipment and then do the MRI if still indicated.

However the LFT's that were drawn in the hospital this afternoon are even higher than the one drawn in the outpatient lab yesterday. She said the GI doc thinks it may just be a bad virus. Infections disease doc saw her and was of the same opinion.

I am also praying for her health and your heart. I really know this week how hard it is for an RN to be sitting on the sideline with a sick family member. I feel like I have no control.

Cherie I'm very sorry to hear this. Your daughter will be in my thoughts and prayers.

Let's hope it clears soon and doesn't require anything major.

Cherie, I can understand your worry. I hope your daughter will turn out to be all right or at least easily treatable.

Thanks everyone. I will post as soon as there is news.

Cherie,
Hope your daughter is home
ASAP & she is well.
Sending my thoughts & prayers
your way.

Hi Cherie, I hope your daughter's illness turns out to be something that clears up soon and is not dangerous. It sounds very scary.

I had a scare with my 23-year-old daughter this summer when one foot swelled up for no reason--after all the testing, turns out it is idiopathic lymphedema, which is not fun, but at least my fears of cancer (there IS a downside to the Internet!) were not borne out.

Sending positive thoughts your way and hoping for the best for your daughter,

Nancy

Well...this morning's ultrasound confirms the blood clots in the liver but also picked up a problem with the circulation going to and from the liver which appears to be long-standing. They don't seem to be asking why or what the underlying problem is. Are talking about starting her on heparin to break up the clots but she's telling them she's not spending another night in the hospital. No one is on this weekend who knows her...just covering physicians. And she will not let me ask questions or see her chart at this point.

Cherie, Being the mother of adult children is the hardest job in the world !!!! I'm constantly telling myself " keep your mouth shut, butt out, they have to make their own decisions "

It's just so hard when we want only the best for our families. I find that droplet therapy works best. Just one little suggestion at a time. Anything more sends up a wall from the adult child unless they ask for my help. They only want you to agree with their plan etc. Best of luck and many prayers as you deal with this medical problem. Betty

BLOODY HELL! I was hoping I would come here to read that the equipment was malfunctioning and that yesterday's results were false positives. I don't suppose that she's ever had any problems with Biliary Atresia since you've said she's always been healthy?

Interesting choice with the choice of Heparin. I would think they would want to prevent more clots from forming with something akin to Lovenox rather than Heparin which has the potential for the clots to start dissolving within her liver and thus start internal bleeding within the hepatic region.

I can understand her not wanting you to ask further questions or see her chart. When I was diagnosed, my Father in Law who is a Pulmonologist at the hospital where I was admitted wanted to read my chart and discuss my case with my treating physicians. My husband vehemently objected and told him he wanted him to be "just a family member". I'm glad he did. He's been a great support to us. I know the outcome wouldn't have changed, and it was good for us to see him in "another light" other than being a physician.

I continue to wish you all well.

Chris

So sorry to hear about your daughter, Cherie. I'd much rather personally suffer pain or fear, then to see my kids go through it.

It's odd that they don't seem to be trying to figure out the cause. I guess you've done some research yourself; any ideas yet?

Prayers coming your way.

Cherie

My goodness! I am so sorry your family is going through this. My thoughts and prayers are with you.

Did your daughter end up going home? I'm hoping she can be monitored or something so the doctors can be aware of what's going on with her. You must be so worried. Please keep us updated.
Jean

I am so sorry the way things are panning out. It is so tough being a nurse and have a sick adult child that makes their own decisions. My Mom was in the hospital this week on the same unit that I retired from. Of course there were very few nurses still there. But the ones that were there let me read her chart. I feel bad now that I didn't tell my Mom I was doing it.

Cherie,

I'm sorry to hear about your daughter, and I will be thinking positive thoughts for her and your whole family.

I had a blink of a thought while I was reading through your post... you mention she is a vegaterian, and you mention the docs think it could be an infection ---- did she come into contact with any of the e-coli spinach by any chance? I did a quick google on e-coli and liver and a lot of stuff popped up.

Of course, my blink of a thought is biased by the fact that as I was reading your posts, the news was discussing the spinich/e-coli problem, but I figured I would mention it anyway just in case my blink of a thought is actually helpful.

Many positive thoughts are being thought for your daughter.

Liz

Cherie,

I'm so sorry to hear about your daughter's health scare. I hope it turns out to be something benign. You and your family will be in my prayers.

We are having a bit of a scare with our son too. We should know more on Monday what is going on with him. He has signs of Crohn's (which runs in the family).

Cherie -- I'm so sorry to read about your daughter. As if you don't have enough stress in your life! My prayers will be with her and of course you too as you search for answers and solutions.

My three adult children live just far enough away that I don't 'observe' their daily lives. Really believe it's a good thing since sometimes it's difficult for us Moms to let go no matter what the age!!

Take care......Judy...aka msproperlady

Liz,
The E. Coli scare was the first thing we all thought of but it causes diarrhea and dehydration (neither of which she had). And if it hits weak , at risk individuals, it attacks and shuts down kidney function...not liver. I was so hoping that might be the cause because it's readily treatable.

They saw what appears to be a congenital malformation in the circulation to the liver on yesterday morning's ultrasound. So....I could have had a baby that needed a liver transplant if it were more pronounced. It just remains to be seen whether or not this is serious enough that we have that road to walk in the future. Many of the tests that were done will not give us answers till late next week.

Meanwhile, I have a very slow week with the exception of Wednesday when I have my dexa scan then have to go to Boston for a meeting so I can be on tap for child care.

Thank you all...from the bottom of my heart....for the prayers and emotional and verbal support you are sending our way. It is greatly appreciated. We don't feel so alone or helpless with this kind of ourpouring of concern.

Cherie, I was so sorry to read this. I too will be praying for your daughter, and for a quick, and good, solution to whatever this turns out to be.

It is hard not to be frantic with something like this going on.

Virginia

I just got off the phone with her. She can hardly move today or get out of bed without assistance. If things don't change, she'll either be back in the hospital tomorrow or I'll be at her place. She tells me our pharmacist's 19 year old son has the same symptoms and elevated LFT's but they have not done a liver ultrasound on him.

Today she was more specific by telling me that the portal vein has a large blood clot obstructing it. So...I start my online search.

Cherie, I remember your posts on the old BT as clinical1 and am also sorry to read this. I hope everything resolves favorably. My thoughts and prayers are with you and your family.

Cherie:

Tough time for your daughter and you. Prayers and best wishes to both of you. When I had a rough spot you were right there posting, I never forgot how helpful and kind you were.

Will keep watching to see how you are both doing.

Ewisabeth:

Sorry to hear about your child too - Crohn's is a nasty diagnosis. Will keep in you my thoughts and prayers.

Well , the first of the labs are in and it appears she picked up Giardia while camping this summer. At least that's treatable with antibiotics but she cannot take the one that is recommended so they are researching alternatives. Both her husband and son will now be tested.

And she is on Lovenox rather than heparin. Woke this morning to her 3 year old pretending to give her her shot with a screwdriver to the abdomen! Rude awakening.

Thanks everyone for the prayers and worry and support. We should see some resolution soon if this is the only problem. There are still several labs pending.

Whew! Maybe that screwdriver-wielding son will become a doctor someday? :)

Anyway, glad to hear this is something treatable--I hope things go well from here and she feels better soon and comes out of it without lasting ill effects.

Sending positive thoughts to you,

Nancy

Looks like thing up looking up a little. at least for now. I am praying for a quick and good end to this. It has been very scary for all of you I know.

Virginia

As I educate myself on what Giardia can do, it would appear thate is another culprit causing the blookd clot in the liver and the elevated LFT's. they're still looking.

Oh man, Cherie. I just saw this thread. Tell the Man Upstairs to keep his cotton picking hands off your daughter. We can bear anything as long as its not our kids' health. I'll pray for you and your daughter. Let us know...

She also has parvo-virus (common child-hood problem that generally does not need treating) and a whopping case of mono which is probably the culprit for the elevated liver enzymes. As far as the blood clot in the portal vein: they discovered that her "S" protein level is low. This is a genetic factor that predisposes to clotting disorders so her doc thinks we all need to be tested to see who is at risk.

Anyway, husband is home for the weekend so can help with childcare and laundry and meal prep. He works 12 hour shifts a half hour away as a firefighter and paramedic.

Oh...to top it off...she's 8 weeks pregnant so they have to be very cautious as to how they treat all of this.

This has an unexpected blessing attached. This girl, from the time she was a toddler , was fiercely independent. Now she is finally asking me for information and help. I was with her just before her water broke for the first child and sensed she was in early labor. She denied it. They lived 4 houses away. I found out the next morning that my first grandchild had been born several hours earlier and she was in labor when I saw her the evening before. They wanted to do birth as a couple with no one else involved but the doc and nurse.

For the past week, I've been getting at least a call or two a day to ask questions about meds or lab values or contagion or asking me to look up things on the net or care for my grandson (love that!). Pain sometimes has purpose and we are blest when we can see that purpose. I feel as if I am on the receiving end of some of that blessing.

Cherie, I don't have the right words for your daughter's problems. Our 3 year old grandson has ITP (very low platelets which can cause bleeding ) ITP is also an autoimmune disease. Our daughter is very independent and will barely listen to a word that I or any other medical person has to say. However Ben's illness for over the last 1 1/2 yrs has brought us closer. He's required treatment with IVIG twice in the past two months.

She now asks for advise and support at times. I've finally learned to not offer advise unless requested. I try to help as much as possible, however they live several hours away and that makes it harder. She also has 5 children ranging in ages from 8 - 3 months.

This is going to be a real test of your families strength. We will all be praying for a diagnosis and treatment that is acceptable for a newly pregnant mother.

Take care of yourself. Save all of your wonderful extra energy for your daughter and grandson. They will really need you as this diagnosis develops.

Many prayers and good wishes being sent to you and family. Betty