Does anyone have a LO with physical needs?

[susanneb1984]

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

 

[gde78]

Oh honey. I'm sorry I can't help, but I didn't want to read and run. Is the osteopathy helping her at all?

 

[susanneb1984]

Yes it seems to help stretch her out, makes her quite achy after. Problem we have is that by the time she's had an hr session, and we've then walked to the bus, and got home, it's snapped back to how it was.

When she was 11 months old, she was asleep in her pram, when she woke up, I put her on the floor and we played. When she tried to stand up, she held one leg off the floor like a flamingo! I thought maybe she had pins and needles and we made tea etc. 4 hours later, she still wouldn't put weight on her leg, and if you tried to make her, her leg just gave out. So I took her to A&E, they did a scan, x ray and blood tests. The scan and x ray of her HIPS were fine, and the bloods were normal. They said to give her calpol and take her home.
We ended up in A&E everyday for 13 days, each time, they repeated the scan and xray of her hips and took bloods and was all normal. Eventually after 2 weeks, I refused to leave without knowing what was wrong with her. They said they thought she had an infection in her hip bones (bloods were normal!) and ended up admitting her to hospital for 4 days. She made a full recovery and was sent home.

Then we moved to Liverpool in 2004, and it happened again. I took her to Alder Hey (I HATE THAT PLACE!) and they did a scan, xray of her hips and took blood. They came back with normal results, so said she had an infection again. I argued that an infection in her bones would surely show in her blood results. They said 'oh yes, it's an infection' just not showing in her blood!?

Over the last 6 years, we've had her to Alder Hey 18 times with this problem, each time they scan/xray her hips and take blood. Then come up with some cr@p about infection!

So about a year ago, she started complaining of pains in her lower back, so I took her to the Dr. He did some tests on her balance and flexibility and agreed she needed seeing properly (HURRAY!), he wanted to see her in 2 weeks, to see how the flexibility was doing. He gave us painkillers and we came out feeling positive that she'd finally be seen. 2 weeks later, I took her back to the Dr's, it was a different Dr but I assumed that one had said she needed to be refered to hospital, so another would agree. He said she was putting it on! I was so upset! He hadn't seen my daughter screaming in pain from just sitting still.

Since then, the pain is now in her hips, lower and middle back. The attacks are a lot more frequent and go on for a lot longer, and the pain is a lot more severe. When she's really bad, she can't move anything lower than her arms. Hence the reason we decided to see what an osteopath said.

We're moving this weekend, I've been speaking to a private ortho surgeon who has been very open with our options. I have a younger child who is missing out on some attention because of all the help that DD1 needs, so we made the decision to move back up to my family for more support, and hopefully better Dr's!

 

[susanneb1984]

Sorry for the long post! hahaha would you believe I cut out a lot of the story! hahaha

 

[CandJ]

Hi,

I'm really sorry to hear about the tough time you and your daughter are having.

I'm in a sort of similar situation.... I have a 2 year old daughter who has quadraplegic cerebral palsy. It's affecting her legs more than her arms. She can't walk, sit unaided and we've not really got a clue what the futer holds for her, though we know it'll include walking frames and wheelchairs.

I'm not really sure what I can say. I just wanted to offer some support as I sort of know how you feel. The NHS is appaling, they kept telling me that my daughter was fine and "normal" up until about 3 months ago. Having been trying to get answers for the previous 18 months.

 

[Tegans Mama]

Hiya hun

My daughter Tegan has Spina Bifida and Hydrocephalus. She is absolutely fine mentally, but her legs don't work at all. She is only 21 months old, but we are encountering some obstacles already. Tegan can't play with other children her age really because they are all running around and doing things on high surfaces and Tegan can't even stand. She needs to be catheterised twice a day and had medication every eight hours.

Her hydrocephalus (which is where the fluid from her brain doesn't drain properly, so she has a shunt - a thin plastic tube that drains the fluid from her brain into her abdomen - which we have to be careful with, as it can get blocked or knocked out of place) means her brain is also uneven, she has non-communicating hydrocephalus meaning the fluid levels are not equal on either side.

Having a child with a lot of physical needs who is intelligent is hard. Tegan's cognitive abilities and fine motor skills are far advanced for her age, and we are finding life a challenge at the moment because her body just won't do what she wants it to. She's been measured for a wheelchair a couple of days ago - hopefully that will help!