8 year old - possible anemia with joint pain, chest pain and other niggles

[Scootingthebreeze]

Hi I'd be grateful for oversight on whether it sounds like everything is being looked into at appropriate speed and depth.

DD has been complaining for approx 1 year of sporadic chest pain. Severe, comes on when sitting doing nothing then goes within about 5 mins. Doctor listened to her chest and did some other basic checks (can't recall specifics) but concluded they couldn't find a cause and didn't feel it was serious.

Over this time frame DD has had sudden stabbing stomach pains that make her double over but which seem to pass fairly swiftly (after ten mins or so) and we had assumed trapped wind or similar.

Then approx 6 weeks ago DD began saying she felt light headed and had spots in vision and balance problems when standing or stretching.

She has been more tired and emotional than usual over the past couple of months.

Also in the summer before school broke up she came home with a red pin prick rash in inner elbow which seemed to be from itching her skin with a pencil. No further rashes until about a month ago when the same happened again and a few days before she got red pinprick rash in perfect circles on her stomach where she'd lent on a bath toy.

2 weeks ago she came home from school saying her wrist hurt a lot. We thought over what she'd done that day and couldn't think of anything that caused a jolt. I gave pain killers the next day when it didn't seem better and then the following day took her to minor injuries unit. They suspected ligament damage and gave her a splint. This seemed to help while wearing it. They said to remove splint for a few hours on and off after 4 days.

Meanwhile I take her to doc regarding lightheadness and the random pin prick rashes. GP orders blood test within a week and stomach scan. I did blood test following day (still waiting on scan appointment).

GP letter arrives a day or two after blood test asking me to book a telephone appointment to discuss with GP why they want to do another blood test within 2 weeks. Discussion is booked for Fri and blood test booked for next Thur.

By Thur/Fri last week (so 1 and a half weeks after injury) she was struggling with removing the splint and was in pain with it. Took her to minor injuries yesterday (they don't do x-ray at weekend and I suspected she may need this). They checked her over, did x-ray (all clear) and told me she must now only wear splint when doing PE and to see GP in 2 weeks if still no better.

Well we've taken the splint off and she's in pain (even with ibuprofen) and barely used her hand. She's right handed but was eating breakfast and playing tablet with left one whilst her right just lay immobile on table. She's always unable to carry things in that hand or put coat on properly as it hurts

This week she's been getting random stabbing pains around body, headaches which come and go and today said when she lays down she sometimes has to breathe quite heavily to take breaths.

She's had no viruses or other bugs. Is normally got and well.

Google points strongly to anemia so I'm just on way to get iron supplements as I noticed it's not in the daily vitamins I try to give regularly.

Google also points to other scarier possibilities but I'm not going too far down those rabbit holes.

I've asked her to get teacher to call me today if her wrist gets worse but I feel helpless as she's in pain and unwell and all I can do is give supplements and wait endlessly for appointments and tests.

Should I be doing more at this stage? Any particular questions to ask of the doctor on Fri?

Thanks in advance for any help

Bloody hell...not seen it written in one go before. Makes me feel even sadder for her

Do you know what the blood tests were for? If they didn't include B12 and vit D, I would ask for them to be included in the next lot, and I would also request copies of all results, as the NHS ranges are low and deficiencies can easily be missed

Is your DD hypermobile ('double jointed')?

Thanks for the reply. No unfortunately I don't know what they were testing for (my preschooler began playing up as we got to the end of doc appointment so it hindered my thinking). I will make sure those are included next time and will ring surgery and request results given to us.

She's bendier than my eldest with joints, but I don't think she'd be classed as hypermobile as not significantly noticable

If she's bendier then I think it's worth reading up on Hypermobility Syndromes as you don't need to be really obviously hypermobile to have one and vitamin/mineral deficiencies are quite common in people with them. Hopefully you'll get some answers on Friday

I didn't know that...thank you, will now read up

Push for blood tests (full ones). My little ones signs of acute myeloid leukaemia were joint pain, pitichia (pinpoint) rash, lethargy, perhaps other symptoms but he was too young to tell me. It took nearly 5 months from first signs to diagnosis.

Is there any possibility she has inherited a red blood cell trait like thalessemia or sickle cell? Even mild anemia with one of those traits can present with all of the same scary symptoms as leukemia.

Jemima - thanks for your reply. I hope your little one is well now. I'm sorry you've gone through that. I am concerned as her symptoms fit many of those for leukemia but I'm trying to remain hopeful. What tests led to the diagnosis? I'm guessing if the doc mentions reduced red blood cells and increased white ones when I speak to them then I should request referral to hematologist or some form of consultant? Everything I've read says kids can get unwell quickly if it's that and if they fit the symptoms they should be referred as a precaution so unless the doc says it's something else entirely then it seems she should be referred (I just don't know where to)

Grumpy - thanks. She was screened for sickle cell as a baby in the heel prick test and was clear. Plus she's Caucasian so doesn't fit the likely profile for either of those so I'm guessing this won't apply?

My little boy is doing brilliantly now, 3 years in remission. With AML the platelets are very low. He had dozens of blood tests and they thought it was ITP (a post viral form). It was only when he had a bone marrow aspirate that it was discovered his bone marrow was failing. I don’t want to scare you just raise awareness and make you feel comfortable being that pushy/awkward parent asking questions and pushing for extra tests. It was a very common discussion point on the oncology ward about how long our children were misdiagnosed for.

Thanks no you're not scaring me and I appreciate the heads up. I just want to have my eyes open and get to the bottom of whatever is going on asap. She's not well and it's heartbreaking isn't it to see your child suffering. She loves trick or treating but is already planning to stay home and just share her siblings sweets as she hasn't got the strength or internal warmth to walk around

I'm really really pleased for you and your little boy

Well things remain a mystery. Phone from doctor as follows:

• Vitamin D is hard to check and lab doesn't do this routinely
• B12 doesn't need checking as cell size fine so doesn't indicate an issue
• inflammatory markers fine, no sign of infection and liver fine
• hemoglobin normal, iron fine
• only query is that her platelets are very slightly low. The doctor said they're very slightly out of the normal range and she has requested repeat blood test as then the platelets should have improved

I'm ringing the surgery when it reopens this afternoon to check on progress of stomach scan referral and to get ensure copy of blood test result sent

Has she had her folate levels checked? I had all those symptoms for 3 years and got told my folate levels were low 6 months ago.

Vitamin D is just a blood test but it is expensive so they are reluctant to test it

B12 doesn't need checking as cell size fine so doesn't indicate an issue

This is wrong, and a mistake a lot of doctors make. I would definitely be pushing for this to be tested, especially as her platelets are low. Folate is usually automatically tested alongside B12

another idea would be crmo. it's a chronic inflammation of the bone and can occur in more than one bone at the same time.
it doesn't always show up on blood tests and needs referral to orthopaedic specialists for a mri scan and biopsy