Help please for my granddaughter 💜

I am Chapter, from the Lupus Community, and I am hoping that they will see this post as well. My grand-daughter, Madison, will be 14 years old in June. For the last 6 months she has been having days of severe fatigue and nausea that lasts 2 or 3 days and then is fine for 3 or 4 weeks and then happens again. Three months ago her mother took her to emergency because she was worse and had developed rash (petechia) on ankles. The emerg doctor was concerned right away did blood work but then recommended that she see specialist. By the time she saw specialist she had gone through a feeling well stage, been sick sick again and then well for doctor appointment. The rash on legs has moved up higher. Blood results apparently were normal except for low WBC and anaemic. Specialist has referred her to Hematologist - appointment in 3 months. She is sick again now - vomiting a lot and then sleeping for 2 days so far. She is missing school for 3 or 4 days just about every month.

Madison's sister has Type 1 Diabetes, her aunt on her father's side has Type 1 Diabetes, her father has recently been diagnosed with Chrones Disease, and I (maternal grandmother) have Lupus. Madison's mother has asked that an ANA test be done (because of family history) and the doctor's response was that she didn't want to go on a fishing expedition.

I was not diagnosed until I was 57 years old, but from a family of ten children I was always the one going to hospital. When I was Madison's age, whenever I was to active or worked to hard, I would end up in bed for the rest of the day feeling nauseous and very tired. Has happened a lot all my life, have had a lot of other health issues but was never put together until I was 57.

If anyone has any advice I would really appreciate being pointed in the right direction so if there is something going on with Madison she doesn't have to get worse before anyone notices.

Thank You

Chapter

5 Replies

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  • It is very unlikely the Lypus community will see this post unless they are members of the Vasculitis community - you really would be better posting it again there.

  • Thank you PMRpro, is there a fast way to do that or do have to redo and post. You have seen it though and you always have good advice, besides reposting, do you have any opinions?

  • I'll have a read in the morning - it is bedtime here!

    I saw it because I belong to 3 communities! Not many lupies I know do.

    You can just copy and paste it into a post on the Lupus forum - it will only take a minute.

  • Thanks - Good Night 🌜

  • Think I might look for a GP who DOES feel like going on a fishing expedition! That is her job in the first instance, especially given the family history. That or securing an emergency appointment with the haematologist - because whatever is going on it sounds like an autoimmune problem of some sort.

    My husband is waiting for an appointment with a medical specialist - really it needs good cardiology experience so I hope he gets someone reasonable at it. But has the GP done a chest x-ray, a BNP (a check for heart failure) or a few of the other things I think it is very likely the specialist will send him for once she sees him. They could have been done in advance - and reduced the time lag. His attitude? "Not my place to tell the GP her job, she should know". So she should - but while she is a delightful person and for many things very good, in other areas she is a bit doo-lally...

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