My little one's health

[bp]

About 5 weeks ago, my little girl was taken into hospital we were in there for 3 days and with all the health scares i've had since my two kids were borne, this was the scariest time ever! my little one is only 17months.

 

Anyway, She had been unwell for a few days with a tummy bug and was finally starting to play a bit and eat so i thought after 3 days of being unwell, things were on the up. However i was wrong. i had to call the ambulance because she had a fit. We got to the hospital around 11:30 and the 1st fit lasted for about 2mins. After waiting for nearly 2 hours in A&E, i was told by the Dr that they weren't worried as my daughter was now up and about and seemed much better but they'd do some tests anyway. They told me that she could have had a fit because of her temp. I told the Drs that that, was incorrect because the previous day, her temp was 38 but when she had the fit, it had gone down to 36. i also remembered that when she was about 2 weeks old, she had a fit and the Drs told me then that i had overfed her!

 

we were finally given a bed at midnight but by that point she'd had another 2 fits which were lasting longer each time. They did all the tests they could think of; brain fluid, scans injections to cover just about anything cause they just couldn't work out why she was ill. We were there for 3 days and on the day of leaving, one of the Drs suggested that i was wrong that these weren't fits at all again and again he kept asking me to describe how she was when she was fitting. in the end i got so angry i told him to go speak to the other 2 Drs and 3 Nurses who were witnesses to her fits! When i was leaving, i asked the Dr who discharged us if there was any medication/advice she could give and she told me (wait for this!) that if it happens again, i am to film my daughter while she is fitting on my mobile so that they can have a look! I was so angry i walked off. 5 weeks later, no word from the hospital, no follow up appointments nothing. Are they right to this? is the NHS so stretched that they would allow a child who obviously has a medical problem to just go home without further investigation? just because her condition didn't fit whatever was on their usual list?

 

Do i have grounds for a complaint?

 

Any advice would be appreciated.

[rory32]

bp,

Sorry to hear about you and your daughters awful treatment (or lack of treatment). I would certainly make a complaint - while they obviously don't know what is wrong with your daughter their attitude is simply not good enough.

[bally35]

Yes you can complain.I would actually agree that these may have been febrile convulsions brought on by raise in temerature.

However, that is only a thought nd does not help you right now.

Go and see your Gp, but if they are as uselessas mine, I would get on to the patient liason dept at hospital.

The other thing that you could do is ring her consultants secretary and ask what follow up there will be (the named consultant when she was in hospital)

Unfortunately , you will have to make a pest of yourself.

Im a beliver that "mothers instinct" is the best medical diagnosis in the world (unfortunately I have been proven right in this too often)

[bp]

Thanks for your replies I'll start drafting a letter tonight I've also got an appointment with my GP on Thurs. I have to be honest that i am lucky in that i have a brilliant GP so iknow that he'll help. My instinct tells me that this is not due to her temp. When she had these fits in hospital, they were at aloss theu kept double checking her temp and it was normal so they just pumped her with all sorts of drugs to cover all possibilities. In the end, she spent the 3 days sedated in order to stop the fits.

[mazzab]

Hi BP, you sound very frightened about your young 'un, and I can see why.

 

Fits seem to scare parents more than just about anything else - I know this from working as an SHO in paediatrics during my GP training. Unfortunately not all paediatric doctors seem to take on board how scared parents are.

 

Most fits in young children are NOT due to underlying damage to or disease of the brain and nervous system. They almost never cause any damage to the child as long as they are short (less than 10 minutes!). It does NOT mean your daughter is epileptic, or even that it will happen again in the future (although it might- 30% or so of children who have one febrile fit will have another, but only a few will have several)

 

Anyone can have a fit if conditions are right. We have what is called a "seizure threshold" and may have fits if the electrical activity in our brain rises above this level. This may occur as a result of imbalances in our body chemistry - too much or too little water/ sodium / calcium/ acid/ sugar etc in the blood. It may occur due to drugs and toxins - including toxins due to bacteria and viruses.

 

In children the seizure threshold is much lower than in adults, so less imbalance will cause them to fit. This is why children often have so called febrile fits. This is a misleading name as it is not the fever or temperature that causes the fits but the toxins from infection (which also cause the fever, hence the apparent link) and also the deranged body chemistry from sweating too much, not feeding / drinking enough, losing salts through diarrhoea or vomiting etc. This is why the temperature may be normal at the time the child has a fit. Febrile fits are common and not serious or life threatening. They are NOT associated with epilepsy or other brain diseases, although children who do have these get more febrile fits because they have a lower seizure threshold.

 

The doctors may suspect this is what happened to your daughter, but may not have explained it very well. The other possibility is that your daughter is having something other than a seizure. Many other things can seem like a fit, such as some faints ("syncopal pseudoseizures"), the rigors of a fever (very severe shivering), and some other similar things. These can be difficult to tell to even experienced eyes. All the textbooks and teaching tells doctors to concentrate on the history taken from a witness, which is why you were asked again and again about what you saw - they wanted to be extra clear as this is far more important than tests in making the diagnosis. A video of a fit is incredibly useful to neurologists - they were not trying to make fun of you or doubting your word.

 

I suspect that the problem you have is that the explanations were not clear, and not sympathetic to your concerns, and that they did not respond to or test your understanding of their explanation as they went along. This can lead to misunderstanding and unhappiness all round. You may find it best to get an appointment with a good communicator like your GP to have it all explained in normal english in a way that makes sense, rather than by a jargon spouting junior doctor or consultant at the hospital.

 

I think your daughter is likely to be OK, but you need to hear this from someone with all the details and facts, not from me over the internet. I am glad to hear you have a good GP as your GP ist the doctor you most need to trust and get on with - they can deal with other doctors for you if need be!

 

Doctors are people - some are good at communicating, others are insensitive, or clumsy at talking to people just like anyone else. We get training on it, but some are better than others just like real life. It's not your fault if you talked to one of the less skilled, and it doesn't mean they don't know what they are doing, but it can make it seem that way!

 

Hope this helps, and I hope all goes well for you and your daughter!

[bp]

Thank you so much for taking the time to respond so thouroughly. I decided that since it was my daughter was sick, i guess it was up to me to try and understand what was wrong. I did a bit of research and came up with some of the points you mentioned. I still complained but based my complaint more on the lack of communication which then caused what i know see as undue distress. The sad thing is, when i complained to my GP, he got in touch with the hospital who promised to write to me with a follow up appointment. to this day, i still haven't heard anything. I know that NHS staff are overstretched but you would think that if someone has already made an official complaint about the lack of communication, the least you could do is respond! To me, you have spent more time replying then the hospital has. having said that i suppose i shouldn't be surprised, i gave birth to both of my kids at that hospital and the 2nd time was the worst. They knew i had complications and that my baby was at risk, which is why i was admitted at 34weeks but somehow, i still ended up giving birth on the ward with no painkillers and the midwives panicking when my baby stopped breathing. This was after I'd told one of the midwives that i was in labour and she told me to just get back to my bed!

[Jhawc24]

You could go back to your GP and ask him to refer you to a different peadiatric consultant maybe at a different hospital if you are not happy with the current situation.

 

I am not a GP as Mazzab but I thoroughly back up what he's saying. I am an Amb Technician still in training. Should your little one start fitting again please call 999 straight away, you could then maybe video the event it maybe a useful tool.

 

When my little boy gets a tummy upset his blood sugars drop very low, although he does not fit, he gets very pale, clammy and lethargic - it can be quite scary. Children are very good at compensating for a while when they are unwell so you don't realise. Then symptons will start suddenly and they become quite poorly rapidly.

 

Regards Joan.