#1
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Hi there,

I'm a new poster to this part of the board, but am finding it harder and harder to cope on my own, so thought I'd come here and see if anyone else is going through this.

My DD1 is 7 years old, she's very clever, she's currently working at a school age of 9-10 years, plus doing some SEN level high school work! I'm a Teaching Assistant, so bring lots of high school resources home.

Anyway, she's always had 'needs'. I was 18 weeks pregnant when we found out she had a dilated kidney. This sorted itself out, but was just the start of things to come. She was born at 33+6, weighing 5lb 8oz. She was sent to special care because her blood sugar levels weren't settled. It was in special care that we found out she had 4 holes in her heart. She needed to be tube fed for a week because she got very tired sucking. We soon sorted that, and found ways to help her feed. She was discharged at 10 days old, but we've had regular consultations with the cardiologist. She now has 2 small holes in her heart. However, she also has 'hypersensitive blood vessels' is what the cardiologist called it, she goes blue/purple for no reason, anything from a few minutes to an hr at a time, but they seem unconcerned.

When she was 6 weeks, she was diagnosed with eczema, and at 3 months was given an inhaler (I've never used it! But apparently the fact she has one makes her asthmatic!?) At 11 months old, was when the huge problems started.

To cut a long story short, we've finally had a diagnosis on her 'hip' problems! She has a twisted pelvis and a curve in her spine, and they are concerned about her brain. We were told by an osteopath that her brain fluid wasn't flowing right and the two sides of her skull don't match and he'd like her sent for a brain scan

Does anyone else have a child who is fine mentally but their body lets them down? How do you deal with it? She's now at the point where if her legs are bad, she struggles to move. The park is a no go anymore because she is in agony all night after playing. How do you explain to a 7 year old that they need to rest?

I feel so bad for her, I'm 26 and have osteoarthritis in my spine, so I can relate to her pain, but at 7 years old, she shouldn't be worrying about getting a bad back
#2
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It's not easy for anyone in this situation, especially the child. My daughter is almost 18 now and concentrates her efforts into her studies, her horses and her friends.
As a younger disabled child she had very few friends because she couldnt go and do the things they found fun, I too can appreciate some fo the pain having been diagnosed with advanced sponylosis but at 44 now I guess I should have a few worn out parts Smile
At your daughter's age and level of understanding maybe giving her extra things she can do better than others is a good thing? with my daughter it was young horses to train as she cant always ride (although she has a lovely boy to take her anywhere willingly once his saddle is on) and she has lots of cats and dogs too so there's never a dull or lonely moment and she's always needed.
Friendships have built up as people around her age matured and found she has a lot to offer, so what if she cant go out dancing......... she is still a great girl!
As with any parenting, it will be trial and error... a big learning curve for you both but there will be fun and laughter as well as pain so it's not all doom and gloom.
#3
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Thank you fatherjack.

She's very intelligent, so we do a lot of work with her. I'm a teaching assistant, I've worked with special needs since I was 16 years old. So it helps, I tend to work with teenagers so I bring a lot of high school SEN work home with me for her to do. I do try and let her go on school trips and things as much as we can.

I think our biggest problem is the lack of support from the Dr's, especially GP's. We had to take her to an osteopath for a diagnosis on her hips, despite the problem starting at 11 months old. We are relocating at the weekend, it's all just got a little too much for us to deal with alone while trying to work full time. I also feel for my younger child because she misses out on a few things when T's legs/back are bad.

They are now querying her brain and her fluid flow or something, it scares the hell out of me to be honest. She's only becoming aware that she's different now, because hospital visits and pain and not moving well sometimes have always been normal to her. It's difficult because she understands so much, but a lot scares her, so at the moment it's a lot of cuddles.
We've always been honest with her about things, I don't see the point in hiding things from her.

She had an op (grommets) last year, the audiologist took them out in Feb this year and already her hearing has dropped. I'm not overly keen on them trying grommets again, but then the idea of a shunt behind her ears is obviously not a pleasant one.

I'm so glad I've found this forum, just be patient with me! I have a lot of questions! haha
Married to my Soulmate since 12.12.09
Together since 30.01.04 Heart

Became a mum of a special child on 03.12.02 Heart Heart
Became a mum to another beautiful daughter on 01.09.2005 Heart Heart
#4
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There is such a wealth of experience here....... I am sure that any questions you have will be answered or researched and discussed, great bunch of parents SmileSmileSmile
#5
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Thank you, I went to a group for babies with heart conditions once, I felt like such a fraud. Their children were on oxygen and T was running around, so we never went back Sad I've struggled to find much support anywhere really, we're just left to ourselves, so finding this forum is fantastic.
Married to my Soulmate since 12.12.09
Together since 30.01.04 Heart

Became a mum of a special child on 03.12.02 Heart Heart
Became a mum to another beautiful daughter on 01.09.2005 Heart Heart


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