The frustration continues

[charlie]

Hi all,

have finally calmed down enough to turn the computer on. Having sat waiting an hour for our appointment with the paediatrician she said, with a smile, sorry but blood test results haven't come back, she hasn't had the reports of liver tests etc from the other consultant (these were done in November), she can't get hold of him to speak to. Terribly sorry and all that.
I asked the nurse when the bloods were taken if the results would be in for this appointment - oh yes they said.
The dietitian still hasn't analysed the diet sheets I sent in November and no-one has looked into paracetamol products for her as requested in November.
I tried not to get upset as Megs was in the room but the stress levels are hitting the roof. As a mother you want your child well, happy and enjoying life as much as possible and you want advice on how to do that. It seems like I am permanently at the doctors or the hospital and no further forward but making a fuss only stresses you out more.
The diet we are learning to live with and coping better with it but I am very concerned about her glucose problem and need some answers, I wish I could afford to go private but can't.
Because I am not a sufferer myself I find it very hard to translate what she is feeling and how she is reacting.
Thank god for all of you is all I can say, this proboard is the only thing keeping us sane.
Is this a British problem or have you all had diagnostic delays.
Charlie

[meaniejean]

Charlie,

I am so sorry you guys are having such a difficult time with the docs. Unfortunately, I don't think this is just a British problem. We are also having a hard time getting a diagnosis. It is incredibly frustrating and at times, worrisome. We are certainly having a very positive response to the diet, but like Megs, we are also having other issues that make us wonder and worry. I don't want to be wasting time treating the wrong thing. At one time it seemed like a gluten-free diet was working, but it was just a coincidence. I don't want to go through that again.

Yesterday we had an endocrinology appt. Calvin's thyroid levels are normal now, so he will be staying on the replacement. The endo doc recommended we ask to see the metabolic specialist when we meet with the GI doc in 2 weeks. He was surprised that they never checked his blood sugar during the fructose test. He thought maybe the metabolic doc would want to redo it as inpatient with blood draws, etc. - I would be willing to do this, but there is NO WAY I am going to put my little guy through that. Ugggghhhh!

I will keep my fingers crossed that you get some answers soon! Anytime you need to vent, please feel free to message me!
-Sandra

[ljs678]

So sorry to hear you are having such a tough time with the doctors. I remember having some experience with the NHS when I was living in the UK and am thankful to be here in Switzerland now...

However, even here, with compulsory health insurance that costs a lot of money, we are also still waiting on the results of tests taken in late November. I have chased it through our pediatrician, but they said "don't call us, we'll call you..."

One thing that occurred to me is with paracetamol for Megs, have you tried suppositories? Here they are much more widely used than in the UK, I think it is a cultural thing, but they are of course not sweetened so no dangers for HFI. Just a thought.

[charlie]

Yes, someone else suggested suppositories today so will look into it, I don't use it much but when she had bad earache she really struggled so is useful to have something on standby.

Thanks Fred for your advise too, my main concern is that something else may be going on and we haven't got the full picture, we have tried several different types of glucose and dextrose which the chemist says is pure. The what looks like hypoglycemia can be very severe to the point of passing out nearly. will look into lactose. A drink of milk does seem to keep her topped up but they seem to be getting more frequent although I am watching the diet like a hawk.

They are going to refer us to a metabolic specialist in London now so we will wait patiently I suppose for that. In the meantime I will continue to keep her on plain diet with things I know she likes and suits her.

She had an interesting reaction the other day, I made her some semolina with milk and semolina only. As far as I can see that is OK but it sent her manic, it was as though she was drunk 20 mins after eating it for about an hour and a half. It was very funny to watch but a bit worrying too, she was rude, funny, laughing crying and absolutely manic but looked as though no one was at home. I looked it up on Nutrition data and it does have a high glycemic index so maybe her body couldn't cope with sugar surge.

Still, good to hear we aren't the only ones to struggle with the medics. I know it's an unusual condition but it still doesn't mean they should drag their feet.

[irene]

Hi CHarlie

My 3 year old daughter was diagnosed with hfi in December 2007, we are coping quite well with her diet, she has as much energy, height and weight as any other 3 year old. I wasn't keen on using suppositories either and expressed my concern to doctor at hospital, he has now arranged for to Hannah to get paracetamol in liquid form. Thankfully I have not needed to use it yet.

I think its terrible that your result weren't in. Hopefully you won't need to wait too long for them.

Good luck