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~CJ~
09-30-2013, 10:51 PM
In searches for help with my daughter I’ve come upon potential underlying causes such as connective tissue, lupus etc…and thought what better place to go than here. I’m struggling to get medical professionals to take things seriously and often find my own research leads to better results. So with no idea where to start I thought maybe if I type her situation out… someone might have some idea of what I should be doing?? Long shot I know.

She’s only just turned 8. With hypermobility (most joints, daily pain – lives with a pain level of 4/10 as her normal) and progressive scoliosis. (Curve currently at 25degrees – 11degree progression in the last 6 months). She has a moderate hearing loss (ENT surgeries to date – tonsils, adenoids, 3 lots of grommets, adenoids again, nasal cauterisation) Nasal cauterisation made a difference for maybe 2weeks, if that.

She’s permanently congested, run down, tires easily.

I have this feeling that there’s something we’re missing. That there are too many little things going on for it all to just be coincidence? She has also just been fitted for a dental plate (doesn’t need braces yet) and she wears orthotics for flat feet. Moderate Asthma (was chronic lung issues but since ENT surgeries much better).

The first Dr I took her to said her spine, everything is fine and come back in a year to review! The second opinion referred to a Paediatrician, who has referred to a Paediatric Rheumatologist as she feels it’s all related to severe Hypermobility. She will be seen end of November, so it’s a huge wait to then potentially just be referred to yet another specialist. I also want her reviewed by a Spinal Surgeon, but this all seems like we’re tackling one part of a potentially bigger problem? Who manages the care or is there nobody essentially overseeing everything in these situations? I feel like a project manager... a very very bad one.

I would love to hear peoples experiences with children, how you’ve tackled the medical system… and I’m also wondering how you tackle the disability support system, as I’ve been made aware my daughter needs special equipment at school to help her cope. (Lumbar support chair, writing aides etc)

I'm just so tired. Physically, emotionally, I don't have time to even think about my own health issues any more.

steve.b
10-01-2013, 05:10 AM
sorry i cannot help your daughter.

but i do want to offer my support.
( ( ( H U G S ) ) )

~CJ~
10-02-2013, 12:30 AM
Thank you Steve

Jaynie
10-02-2013, 04:47 AM
Again, nothing I can say, but hoping things improve soon.

I was 17 when I first became ill and it was dreadfully hard on my mum. Years and years of wondering why and what. Keep searching, you are your daughter's best advocate.

Hugs
Jx

Sammy
10-08-2013, 09:30 PM
Hi CJ,

I have sent you a private message with my email address on it if you would like to contact me. I may be able to help you.

Regards

Sammy xx