I think ive gone crazy over dds health i cant decide if im just imagining things!

[Whyismyskinlikethis]

My dd (14) is autistic really quiet rarely talk about her feelings. A few weeks ago i noticed she was really pale and she started mentioning feeling weak and sge was hiding in her bed even more than normal so i took her to the gp. I did post in chat so apologies for any repeats!

they did blood tests then called us inti the hospital in the middle of the night making it seem like a huge emergency. Wheh we got there they said she was anemic and had low folate. The results i recall were hb 8 ferritin 13 iron 2 mcv 62.

anyway they checked her over pronouced her stable and sent her home with iron tablets . That was 3 weeks ago. She had a celiac test which was negative. She has a varied diet and light periods.

she is still so tired and weak she managed a walk for half an hour but after 5 mins shes lagging ans needing to sit at every opportunuty.

she is always pale (red hair) but after walking her lips look dusky to me. I sent an e consult monday morning first thing to the doctor asking if she should be feeling amy better also does she need to take folate. I mentioned how weak she was.

im startung to doubt myself now maybe im just expecting too much or imagining the dusky lips!

i have 6 children mostly older than her and ive never worried like this about any of them before i feel like im being a crazy person if i call doc again tomorrow.

honestly please be honest am i sounding insane would you call back again or wait fir a response or wait for the iron to have more time!

added a pic of her lips after walking for a sanity check

Definitely blue looking lips 😢

I think you should listen to your instincts and go back. Ask for a referral to a paediatrician.

Yes I can see that too op. I hope she's ok

Yes her lips do have a definite blue tinge. I would go back to the gp.

Those results are SO low. No wonder she is tired after a five minute walk! I’d not be able to get out of bed! You need to take her back asap. Trust your instincts op.

I think they did say she would be reffered 3 weeks ago but i havent heard anything i assume theres a wait . It seems odd to go from omg come to the hospital right now ! To just being left for weeks.

Its her birthday on saturday and shes got her heart set on going to an arcade centre but im in a panic shes going to collapse or something!

Could she be in Autistic burnout?

My dd was weak and pale and exhausted with it. And staying hidden in bedroom is part of it.

14 is peak age for it amongst girls.

What was her haemoglobin in her blood tests?

It was 8

I mean she normally hides in her room tbh but if we do something she is ok with it so she could normally easily for a walk or say even something like carry washung up the stairs but now she just liiks awful if she does.

I don’t know. I just know mine looked terrible in it. She was yellow and her lips were a bit blue.

Is she extra anxious or extra sensitive? Any school refusal? Any change in processing abilities?

What are they doing for her anaemia?? a ferritin of 13 is way way too low (needs to be more like 80-100ug/L optimally) and this can take 6-12 months to raise depending on how she tolerates iron tablets. I’d say earliest she starts feeling better with visible changes is 3 months.

she has iron tablets but shes only been on them around 3 weeks so far.

Are you sure it was 8? Not 80? 8 is not possible I'm pretty sure.

Vitamin C is good for bring up low iron. I would be calling the GP for further bloods and checked again. A&E can do them say you're not happy.

Kale and green veg.

it could have been 80 she was talking to my dD who used to work in heamatology and he was using old measurements so maybe he translated it to 8?

I think my DC was 15 and they recently had iron liquid form. He was getting really bad headaches.

12-16g/dl is normal ref range for haemoglobin so 8 is very low- no wonder she looks blue-ish as she literally doesn’t have enough oxygen in her blood. As I said it will take time- these things don’t change over night but could be worth a call to see about iron infusion- there are risks with this as well but is quickest way to get her better.

she will need to be taking b12 folate and vit d also as these are also needed as the body starts to make more red blood cells and haemoglobin, whatever she does have will get used up pretty quickly if not taking extra and then you would have other deficiencies on your hands.

common for teenagers to have anaemia even with light periods due to levels of growth, and also most people tend not to eat red meat on a daily basis. This isn’t autistic burnout- it is literally her body having not enough oxygen for every cell to produce energy so it is prioritising energy for her vital organs only- no wonder you are so worried about her!!

Hi - my DD, NT as far as we know, had levels worse than this. Iron 1,5, ferritin I think 3 and Hämoglobin 6.1. Took Iron tablets which are a long slow process unfortunately. They won’t do an iron transfusion on the NHS for under 16s from our experience, sadly. Did loads of allergy tests to rule out nastiest. Diagnosed as straight forward teenage anemia and told it is common.
My DD continued with everything, got better very slowly.