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malpal
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My daughter is 16. Her health has been going downhill now for several years. This past week, she developed pain in her left side of her abdomen that spreads to her back.... She has been nauseated, and several times now I have seen her turn pale and break out in a cold sweat. The pains come and go and get severe at times. We had an appointment with her endocrynologist, so we talked to her... She thought it was pancreatitis and ordered blood work... But, the blood work showed her pancreas okay. Her white and red bloodcell counts were high and there was a small amount more than usual of bacteria in her urine.
When I looked up the high red and white cells online, it brought me to VHL. This is what bothers me:
My daughter already has a history of cysts forming in her armpits. And, just recently, her Grandmother was found to have a tumor in her Kidney.
I wonder if anyone will give me your opinion. Does it sound like I may be onto something, or barking up the wrong tree?
She is scheduled for a CT scan on Monday, so if the doctor is thinking this, she isn't telling.
I appreciate any advice.
Thanks!
PJ

Explore topics in this discussion:

Pain Peptic ulcer

12 replies

live

Do the CT scan ASAP to see if anything is wrong with her PAncreas and kidneys.

live

Does you or your husband's family have any history of brain, kidney, pancreatic, endocrine, retinal and spinal tumours? The grandmother having it as an isolated case does not mean VHL. Normally it is genetic so is passed from a parent. Very rarely it develops withoutit being passed down genetically.

malpal

Yes, she is scheduled for the CT. And, I am not sure about my husband's family.... But I will look into it more. But, neither me or my husband has ever had it and I just read about it for the first time last night when looking up information on her symptoms and the high count of red and white cells. I was pointed in this direction.
Thank you so much for your help!

live

Good luck and I hope she's okay.
FYI, I or anyone else I know with VHL have never had high RBC and WBC count (it's always been normal) - so that is'nt a good indicator as well. The CAT scans would be more conclusive.

joyceg98

Polycythemia (high red blood cell count) can be a sign of VHL. The pain she is experiencing might indicate a kidney problem. It is worth asking the doctors to rule it out.

Best wishes,
Joyce

malpal

Thanks so much for all your help. Yes, I am going to make sure they CT the pancreas and the kidney area, especially, and I am praying that it is not VHL.... but I do hope they figure it out.
I have another daughter that has had pain in her abdomen for about 8 years; which the doctors cannot figure out..only say it is IBS when all else fails.
This is different for this daughter; but I have always tried help the other one...now I have another to deal with too.
I really appreciate the time you all have taken for me.
PJ

joyceg98

Have they done a CT scan of the abdomen? In both cases, it sounds like this would go a long way to telling the tale.

Pain in the abdomen can be numerous different things, many of which would be exposed by a CT scan. If this has been going on for so long without a diagnosis, I would push for a CT.

Best wishes,
Joyce

malpal

Well, we ended up in the ER last night with my daughter. The doctors believe they found a hairline fracture in her rib.... so postponed the CT scan until we see if it goes away. I do hope that this is all that is wrong. But, if the pain and other symptoms continue, we will have to go back to the CT again.
Thank you for helping me. I have learned so much about VHL now through all of this...and never knew it existed. I will be praying for all who suffer from this disease. And, I will be investigating my mother-in-law's problems to see if this is what she is dealing with.
God Bless You,
PJ

joyceg98

Hmmm -- Pain in her abdomen for eight years due to a hairline fracture in a rib? Doesn't sound right to me.

How did they find the hairline fracture? X-ray? perhaps they would be willing to at least do an ultrasound? If anything suspicious shows up on the ultrasound it will make a strong case for a CT.

Best wishes,
Joyce

malpal

I'm sorry. I caused a misunderstanding.... The pain for 8 years is an older daughter of mine that they say has IBS.
My 16 year old is the one that they at first thought pancreatitis..... but the xray showed a hairline fracture.... unless it doesn't heal.
She has had a lot of nausea yesterday and this morning, but by this afternoon, has started feeling better. So, I hope and pray they are right and we will get passed all of this.
Thank you so much for your help!
PJ

FridayThe13th

I'm not an expert about much of anything but thought I'd share my experience. I too began having extreme pain in my side with the nausea as a teen. They told me for years and years that I had a peptic ulcer. You're doing the best thing for her by getting her scanned. I hope it's not VHL and I honestly don't know many of the VHL warning signs as far as pain goes. Just think positively and know that you've got friends here pulling for you.

malpal

Thank you so much! I am so glad to have come across this website. You all have been so helpful and kind and helping me push on to answers.
Yes, I am thinking positive and will keep you all posted as to what they do find out.
PJ

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