Is fatigue a thing symptom
I think so too, I think that's how it must be!
Hi Hun, it seems to be a trait with us. I have EDS type 3 and so does my 5yr old daughter and my 3yr old son has just been diagnosed severely hypermobile. My daughter had intolerances and severe reflux from birth until she was 14 months then the intolerances were more manageable, she is still medicated for severe reflux. She used to sleep all the time as well, severely lethargic and fatigued, fall over, mood swings, head aches, stomach aches, severe constipation (also from birth and medicated from 3 months old). My son has lactose and dairy intolerances and they believe other multiple allergies but we have introduced him (slowly) to everything bit by bit and everything is now much more controlled, he's also medicated for severe reflux. He has started to sleep for a long period of time now too and we've just got back from the hospital to find that he's not gained any weight at all and has grown in height dramatically so there should be a larger weight gain but there's none at all.
We went though hell with my little girl trying to get her to eat, she also suffers with anxiety, textures of foods, smells ect make her go crazy and she won't eat a thing. She will only eat dry foods, she won't even attempt to put any form of sauce near her mouth let alone in it. She loves plain rice cakes, any form of ready salted crisps, dry cereals ect. She would always loose weights even on her medicated build up drinks, until last year she finally started gaining weight and will sometimes try little things (with bribes of course) but will not allow enough in her mouth to actually taste it lol. Your not alone Hun, it's absolutely awful and I can't tell you how many times I've been in tears about no weight gains, loosing weight, not eating at meals ect.
I remember trying to wean my son and we'd just got back from the hospital after just finding out Darcie had lost again and neither of them would even touch there lunch! I went into the kitchen shut the door and ended up throwing the bowl of baby food at the wall and crying. It's awful but it does slowly get easier X X X
Thank you, hope your girls are ok now xx
Thank you Hun. There getting there, we have a knew task to tackle which Darcie being at school with her fatigue and pains, harder when she won't tell anyone that something is up! How ever we do have a couple of things in place like a specialised chair for her to sit in at school. Noah is starting nursery next week in the afternoons so this will be quite testing for him, again we have a couple of bits in place but he's now under the correct people (bloody hard work to get to them mind you, for both of them!). But they're both doing well, unfortunately a different story for myself but that made me push even more to get them seen by the right people at such a young age (nearly got escorted out of the Drs a couple of years back as I refused to leave until they did some tests on Noah
Sorry another essay
It must be hard for kids being at school having to keep up with routines! Sounds like they're doing well and things are being put in place to help which is positive! Xxxx
The best thing is to really break it down for teachers and have all the warning signs written down I think. Darcie Does a half day mid week to rest, it all goes down as medical rather then just absent. Hope your little girl starts to pick up bless her, feel free to message me when ever you want Hun. If there's anything I can help with I will try or even just some one to rant at about not eating ect lol xx. X
Sounds like it's the key really, makes them understand them a bit more I guess. Thank you me too
Thanks Hunni ☺️ X X X
Yes as if their muscles ache or in pain they will get tired easily