HELP is my daughter really ok?

[flutterfly]

Hi my 8 year old daughter has Autism. Which if anyone knows, an Autistic person will not tell you if they feel well or not. What im trying to say is im really worried about her.

My Husband took our daughter to the doctors on 14-09-06 and the doctor said she was ok but may be getting over a sore throat?

Over the last 4 weeks she has lost alot of weight, maybe about a stone or two? all her clothes hang on her now instead of being skin tight. she isnt eating alot! whereas she would eat lots. she looks drowsy all the time but she says shes not tired.

The only thing we have done different is stop buying crisps and chocolate bars and biscuits.

Any mother will know what i mean when i say "i know theres something wrong but im not sure what"?

The doctor has said if she the same in a weeks time bring her back. What then so he can say no shes ok still.

Am i being silly????

All the family has noticed how much weight she has lost.

Is there anyone who can tell me anything?????

thanks A worried mum

[oracle]

I can tell you to go with your gut and if your gut is telling you that there is something wrong then don't be fobbed off by anyone. There are lots of reasons why she could be losing weight not all are sinister but they need to be looked into. Are there any other symptoms eg drinking more than she used to. This happened with my cousins daughter and she is diabetic. We have loads of diabetics in our family and weight lose and drowsiness can be symptoms. I am however not a doctor but I just wanted you to be aware that you can lose weight for many reasons.

 

The only other things that jumped out at me was this

 

The only thing we have done different is stop buying crisps and chocolate bars and biscuits.

 

Is there a reason for this? Could it be the change that has brought this about? Have you thought to put them back into her diet and see what happens. If it were me I would - but you probably already have.

 

My son lives on Crisps and Kit Kats but because he is not over weight and is otherwise fit and healthy I leave well alone - because I do have parents in our group who have removed these foods and ended up with children who stop eating.

 

You know your daughter best so you go with what you feel needs to be done here.

 

Oracle

Edited September 15, 2006 by oracle

[bramblebrae]

I would go back to the gp now and ask him to do what ever he would do in a weeks time as you have already waited 4 and if you wanted to wait another you would have. I would be looking for him to do blood and urine tests immediately and a phsyical examine. or did they do these already? Personally your post flies alerts up at me and although it maybe because the food has changed it may even be like sugar withdrawl or something and nothing serious at all but something happened to our family where we were told to wait a week or 2 by a doctor and although even if the doctor hadn't been blind and stupid and negligent the outcome wouldv'e been the same in the end it might make a difference to someone else.

I don't want to scare anyone and things usually turn out to be fine in the end but IMHO it really is far better to be safe than sorry.

If the GP refuses and your still as worried I would just walk into A&E the have the facilities to get results quicker too.

 

take care

Lorraine

[oracle]

Lorraine I did wonder if this little girl could be going cold turkey because I do know when parents begin the GCF diet this can often happen. If you take away the foods that are giving them a high all at once then the withdrawl can be very distressing and It's very difficult when I child can not tell you how they are feeling.

 

Oracle

[loulou]

Hi,

 

If she has lost that much weight, you should definately go back to your GP asap. A stone or two could be up to a third of an 8 year old's body weight and that's a huge amount.

 

Go with your gut instinct too, i have done that in the past and i was right (GP was wrong). You may have to be insistant with your GP but it's better to be safe. There was another thread on here about children with ASD's not showing that they are not well (my son is the same).

 

All the best <'> ,

 

Loulou xx

[DaisyFulkirk]

If she has really lost two stone in four weeks she needs to be in hospital. Two stone is a LOT, for an 8 year old, really a lot. Even one stone is a lot. One stone is 14 pounds or a bit under 6 and a half kilos.

 

If you definitely think she has lost that huge amount of weight then it sounds like something is not right, even if she's lost a bit less than you think, a big enough difference to show in clothes fitting and things is quite a big loss.

 

I agree with what Oracle said, if she was previously being OK on 'unhealthy' food then let her have them, leaving them out seems to be swapping one nutrition problem (junk food) for another one (not eating) and it sounds like she is going to get quite poorly.

 

Another option from going back to the GP is to ring up and talk to one of the nurses at NHS direct, they're not always really good but they might have some suggestions about what to do.

 

I hope your daughter feels better really soon.

[flutterfly]

Hi me again. We did take our daughter back to GP he still said theres nothing wrong. We asked to take her to hospital to just make sure.

Well she has been in hospital since Monday 18th sep. They found out within the hour she has Type 1 Diabetes. she is now on 4 lots of insulin a day.

I have email my GP to have a right moan, still waiting for a reply. and boy it had better be good.

I cant remember your name but thanks whoever it was that said she may be Diabetic. That info helped us alot.

[jb1964]

Hi flutterfly,

 

Thank god you insisted on taking her to the hospital and that they found out so quickly. Hopefully now she'll start to pick up and feel more like herself - although it's going to be a whole new learning curve with the treatment etc.

 

Absolutely disgraceful behaviour by your gp - no matter what he says it is not normal to lose 1-2 stones within a few weeks even if you were aggressively dieting!!! Can't believe he missed this as really it should have been one of the first things to rule out.

 

Take care,

Jb

[Karen A]

Hi.If the Gp saw your daughter again and did not pick up that she could be diabetic this is a very serious error.I would consider complaining officially to your local primary care trust if you are not happy with the answer you get from the Gp.Karen

[oracle]

A simple urine test should have been enough to ring alarms bells here. I would be furious if I were you. As I said we have lots of families members with Type 1 Diabetes and your posts rang bells in my head because your daughters symptoms were so similar to theirs before their dx.

 

I really hope that they have this under control soon. My Cousin still plays rugby and does everything he always did. His daughter is now a forensic experts. So it has not stopped them from living their lives in any way.

 

<'> for both of you.

 

Carole

[barefoot wend]

Fluuterfly

 

Am appalled by your GP's behaviour.

 

How's your daughter dealing with it all? It must be very confusing. Wishing you all well.

 

Barefoot

[Bagpuss]

Flutterfly....thank god you stuck with your instincts! Take care

Edited September 22, 2006 by Bagpuss

[Kathryn]

Thank goodness you persisted, Flutterfly. I hope now your daughter will get the right treatment.

 

K x

[bid]

Well done for trusting your instincts!

 

Bid <'>

[smallworld]

Thank God you insisted on a visit to the hospital, what happened to the GP's instincts, nevermind their medical dx skills ?

we are in a similar situation albeit with something much minor, my son hurt his hand almost two weeks ago (karate chop to his LSA )I took him to A&E after a few days when his knuckle was still misshapen after the bruising had gone, they didn't want to 'expose him to an unnecessary dose of radiation' so no x-ray, told to go back in week if still concerned(did tell them that he has high pain threshold, and floppy joints)

It still looks odd, he only complains about it when I wash his hands,why couldn't they just have x-rayed it last week ?

Sorry for going off at a tangent, this is just one of many concerns I could rant on about tonight

 

wac

[board]

Thank God you insisted on a visit to the hospital, what happened to the GP's instincts, nevermind their medical dx skills ?

we are in a similar situation albeit with something much minor, my son hurt his hand almost two weeks ago (karate chop to his LSA )I took him to A&E after a few days when his knuckle was still misshapen after the bruising had gone, they didn't want to 'expose him to an unnecessary dose of radiation' so no x-ray, told to go back in week if still concerned(did tell them that he has high pain threshold, and floppy joints)

It still looks odd, he only complains about it when I wash his hands,why couldn't they just have x-rayed it last week ?

Sorry for going off at a tangent, this is just one of many concerns I could rant on about tonight

 

wac hello my son was like that only conplaned now and again so 2 days after he done it toke him to the hospital they did do xray he had broken it in 2 places he was 5 then hes 10 now all the best jill

[lil_me]

Thank god you took her to the hospital, pleased for all your sakes you stuck with it and got listened to.

 

I am sure you will make an official complaint to the GP and the manager of the surgery.

 

Hope they get her sorted and back to her usual self soon, best wishes <'>

[smallworld]

thanks Jill,

makes me feel less neurotic about taking him back

 

wac

 

incidentally, the staff at the hospital were great with him, kept coming out to the waiting area to check he was still ok with the wait, and told me that if i ever had to bring him in again to ring first and we could wait at home rather than have him sat in the waiting room for a couple of hours. And he got a lolly afterwards !!

yeh !!!! for a great service this time

[flutterfly]

Hi all. Im gunna update you now.

I had to go to the dr on monday (yesterday) for my daughter percription for her diabetes stuff.

The dr that told us she was ok went into the secretarys office where i was stood. We had a real ding dong. i didnt care who heard me ( there was 3 secretarys there) he asked why i needed needles for my daughter? I went mad at him. I had a real moan at him. He said there wasnt a problem and he still believes he was right in sayin there was nothing wrong? She wasnt dehydrated for him to think of testing for diabetes.

He said he wasnt in the wrong and he doesnt know why im mad and sayin the things i did?????

I sent an email to the main dr there. He rang and said he has spoken to this dr and next time he will listen to parents more?? Yeah right..

Where does that leave us?? Without a sorry thats where.

Im in the process of looking for a new dr. Just not sure if one exists????

Im still mad but just have to get on with things.

Daughter doin well now. Although she dont like me doin jabs. Thats another thing to sort out but nicely this time. I hate needles just to let u all know

[Karen A]

Hi all. Im gunna update you now.

I had to go to the dr on monday (yesterday) for my daughter percription for her diabetes stuff.

The dr that told us she was ok went into the secretarys office where i was stood. We had a real ding dong. i didnt care who heard me ( there was 3 secretarys there) he asked why i needed needles for my daughter? I went mad at him. I had a real moan at him. He said there wasnt a problem and he still believes he was right in sayin there was nothing wrong? She wasnt dehydrated for him to think of testing for diabetes.

He said he wasnt in the wrong and he doesnt know why im mad and sayin the things i did?????

I sent an email to the main dr there. He rang and said he has spoken to this dr and next time he will listen to parents more?? Yeah right..

Where does that leave us?? Without a sorry thats where.

Im in the process of looking for a new dr. Just not sure if one exists????

Im still mad but just have to get on with things.

Daughter doin well now. Although she dont like me doin jabs. Thats another thing to sort out but nicely this time. I hate needles just to let u all know

Hi.If the GP was so unhelpful yesterday.I would consider contacting the local primary care trust.Find out who you should write to to complain officially.Also ask who can provide you with support to find another GP.If your child was ill enough to be in hospital for several days any GP should be able to accept that they made a mistake in not even checking for Diabetes.It is not a complex thing to pick up.Karen

[oracle]

Have to agree with Karen I would not let this drop. It would not wash with me that they will 'now listen more to parents' He is a GP for goodness sake and he missed something so obvious that I - who am not even medically trained in any way - picked up on it straight away.

 

Heads needs to role for this. It could have ended oh so differently if you had kept accepting what he was saying to you

 

Oracle

[loulou]

Hi,

 

Glad your daughter is ok now, bless her.

 

I definately agree that you should take your complaint higher (PCT or GMC). It is not acceptable that something so serious was missed. Something similar happened with my son when he was 2. If i had listened to the GP, Kai would not be here today. Thankfully WE both followed our instincts, but some parents may not (doctor knows best and all that) and that's putting children at risk.

 

All the best,

 

Loulou xx