Peads with my daughter.

[mum2three]

Hey everyone first time in posting.

My daughter was diagnosed with serve hyper mobility when she was 18months old she is now 3 will be 4 in august.

We have had to start all over again as the physio said she was within normal limits of hms when she was younger. And docs dismissed her. It's now at the point I don't think it is just hms. I'm wondering if she has eds.

She has pains most nights, she loses control over her bladder, she struggles to poo (she pushes very hard) mostly constipated. She bloats when she eats to the point it looks uncomfortable. She has a potato allergy but it always changing. She is very flat footed, poor muscle tone. She is very tired most of the time. I wonder some days how she is still awake as you can just see she is knackered. She does swimming classes to help with muscle tone. She has had scans on her eyes and heart looking out for martham syndrome. Which she will be scanned again when she is 5. She has no insoles or support.

She has a peads appointment on the 26th and I would like to get her tested for other possibilities. Just asking how would I go about it. As I'm afraid they are just going to tell me making everything up. She starts school in September and I'm so anxious for her to go..... the nursery have noticed she doesn't like to write or draw very much. And at a certain time in the day she is very tired.

Thank you for reading!!!

[cyberbarn]

The best thing to do is make a list of the symptoms, including times, both when they started or were noticed, and time of day if it is variable. Try to do it chronologically from when she was born forward, and back it up with written evidence such as a diary entry or a letter from one of the other doctors or health professionals or nursery staff you saw at the time. That way you have contemporaneous notes to show that you are not making it up. I use emails that I sent to friends at the time to pinpoint things just to make sure that my memory isn't playing me up.

Don't go in telling them what you think it is in the first instance, let them do their job. If there are things that you are worried about, like Marfan, and they don't address those worries, then you can ask to have those things eliminated. But present the paed with all the information first.

You can still have in mind what referrals you want to ask for. Dietician and podiatry spring to mind. And if she is already showing signs of not wanting to write, possibly an OT but that might be best to wait until she is at school and have the school arrange that. 3 turning 4 is early to be worried about writing; lots of kids are eager to write and draw at that age, but not all kids are ready for activities like that, as their brains have to be ready to do that. If you have no interest in reading yet, why would you want to write. My son refused to do colouring in at all ages.

Good luck!

[mum2three in reply to cyberbarn]

Thank you for your reply I will be writing the pead that diagnosed her when she was 18months said that he would keep scanning her as he is worried that she could get Marfan.

What's is podiatry?? She literally got diagnosed and then has had nothing no help with anything. And is getting worse bless her.

She is turning 4 in august and will be starting reception in September which is why I said about the writing. As she will be expected to home learning and writing in school. So just want to make sure she goes in with what she needs to help her and not let her suffer so much.

Xx

[cyberbarn in reply to mum2three]

Podiatrists are the experts in everything from the knee down. They can assess her feet and prescribe insoles and shoes or boots if necessary. As she is flat footed it would be worth having a paediatric podiatrist look at her feet to make sure that they are developing well and to advise on anything that would make her feet and therefore the rest of her more comfortable.

As for school, if you think that she isn't ready next September, it is work remembering that they don't have to legally start school until the term after their 5th birthday. Some LAs are more flexible than others about this.

The other possibility if she isn't ready or if she goes but it doesn't work out, is that you could home educate her. There are many children with EDS who are home educated because school is too much for them. The half way house is flexie-schooling where they just go part time. that is also an option and is not uncommon in the first year of school.

[mum2three in reply to cyberbarn]

Her feet are like pancakes bless her. She walks and they are so flat. She has peads tomorrow so will ask about her seeing someone.

She is ready for school. It's just whether she will be able to survive 5 whole days or not. She does 2 whole days at nursery and they notice she gets tired around 2pm. An hour before pick up. So maybe I will let her trial school and if it too long ask for her to do half days or 2 days a week if that's allowed. I would be up to home schooling her..... she gets so tired bless her. I guess it's just trial and error :/ thank you for replying again. Means a lot.