Some Advice please for my Granddaughter

[Chapter]

I am Chapter, I have also posted this on the Vasculitis Page. 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 anemic. 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

[Hidden]

Hi Chapter. So sorry for what you and your poor granddaughter are going through. I wonder if it would be helpful if you went to see Madison's GP with or without Madison's mum? This way you could explain your own and your family's history of autoimmunity to them and cite your own story in brief to try and convey your concerns about her wellbeing. She may not want to take further blood tests from a child but you could impress on her that you want her ANA to be tested for a good reason, given your own history of late diagnosis?

Sorry that's all I can suggest. Like you I was only diagnosed with Sjogren's last year at 53 - after a lifetime of classic autoimmune symptoms and conditions and a misdiagnoses of RA. One year when I was 11 I missed 4 months of school altogether because of sickness, including total alopecia and terrible dental problems and eye and throat infections and whooping cough that lasted far longer than was usual. No one joined up the dots with me either.

Twitchy

[EOLHPC]

🙋🏼 Hello chapter

Am v sorry your lovely granddaughter is having this very rough time....this can only be very tough on you all. And I think twitchy's idea is brilliant!

As you know, my lupus was infant onset, but my mother & doctors didn't tell me that lupus was underlying all my illness & reactivity growing up. My feeling is that using our common sense & discretion to openly communicate in a loving, supportive, informed way about health issues is a much better way to go than the way my mother & doctors went in my case

Wishing you and your whole family every best wish

🍀😘🍀😘🍀😘 coco

[misty14]

Hi chapter

So sorrY to read what a tough time your daughter and you are going thru worrying about your grand daughter's health!. Poor kid she's going thru it and shouldn't be missing so much school! My piece of advice would be keep pushing the doctors for answers!. With her strong family history of situ- immune that's what they should be doing and be willing to go ' fishing ' for answers, that's there job!. How are you with the stress of it all?. Do hope you get a breakthrough soon. Keep us posted. X

[PMRpro]

I'll repeat what I posted over on VasculitisUK here and then add a bit:

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...

I meant to say before - tell them to keep photos and a very detailed diary of how she is, missed school, symptoms etc. And be accurate - as I said, my husband has been breathless and the GP hasn't really reacted adequately IMHO. But that COULD be because he didn't tell her just HOW short of breath he has been - like even the slightest slope is too much and he was short of breath lying in bed! A few days of a higher diuretic dose has achieved a minor miracle - the GP had only reacted to very low BP by REDUCING the dose. Totally the wrong thing to do with him! When I was breathless last year and told her the local bit of road I couldn't walk up she jumped and got an emergency appointment for me - but did nothing to rule out acute heart failure so that took another few days after seeing the big boss. What you can rule out is as important as what you can rule in.

[Hidden]

I totally agree with all of the above replies. This is a child and looking for causes for symptoms is not a "fishing expedition" it is good medical practice. It is taking a full medical history, of family history and your grand daughters symptoms, not matter how small or when they reoccur. I agree take pictures, keep a diary, ask for second opinions. Good luck and keep us posted.

[Chapter]

Thank you all for support, I will push my daughter. She has no problem with pushing doctors, dealing with Madison's sister with Type 1 Diabetes for 12 years has made her very strong and assertive. To many trips to hospital with paramedics that tried to feed Des cheese to get her sugars up while all she can do is puke. One particular time she was trying to just get them to Take Des to hospital because they couldn't do IV which she needed, she ended up telling them to get their truck (ambulance) out of the driveway so she could drive Des to hospital herself. Needless to say they loaded Des up in their "truck" pretty fast and got her to hospital with no time to spare.

I will get her to send picture of Madison's rash and try and post here. Have to see how she is today. Thank you 💐

[pixiewixie]

Madison's health is most important & her Dr by this time should have all her fishing completed & sent her young patient to the appropriate area for assessment & diagnosis. Chapter, I am so sorry to hear of poor Madison's health issues, the poor wee girl must be feeling very lost indeed! I realise how hard it is for the family & I understand how worried you are as her dear granny. You have received many thoughts & excellent advice here & I do hope that this will help with ideas to push things forward. I look forward to hearing that there is some progress & that Madisons's quality of life has much improved! I think that any DR who does not want to carry out important fishing expeditions for a sick young girl must be as slippery as an EEL!!

Very best thoughts & wishes X Pixiewixie