Newly diagnosed daughter

[Djbear]

Hi, my daughter is newly diagnosed type 1 age 10. I have an older daughter and 2 older sons, my eldest being 27, we have no diabetes in our families either side. I’m finding dealing with my daughters diabetic team very challenging. I feel we are being discriminated against because we have autism issues within our family. Although high functioning I feel her team are using this reason to disrespect us. They have a very passive aggressive approach towards us, ask very personal questions about our personal lives, then write answers down, police our eating choices, trying to force unwanted food items, other medicines and blood tests for vitamin checks on my daughter that she doesn’t want, and now recently when the my life tester didn‘t link to phone it seemed we were being accused of medical negligence .. and a phone call, text messages and home visits were arranged?? I don’t think this is normal procedure from what I’ve been able to researched, we are feeling very vulnerable …what legally can be done. Are home visits mandatory? Can anyone please advise the best course of action to take. Thanks

 

[Inka]

Welcome @Djbear That sounds very stressful for you. I have Type 1 but none of my children do. Let me tag a few parents of Type 1s for you @Sally71 @Bronco Billy

Can you give examples of the kind of things you’re talking about? Eg what unwanted food items are they forcing on you, what unwanted medical tests?

How’s your daughter finding things? What insulins is she on? Does she have a Libre or Dexcom yet?

 

[Leadinglights]

Hi, my daughter is newly diagnosed type 1 age 10. I have an older daughter and 2 older sons, my eldest being 27, we have no diabetes in our families either side. I’m finding dealing with my daughters diabetic team very challenging. I feel we are being discriminated against because we have autism issues within our family. Although high functioning I feel her team are using this reason to disrespect us. They have a very passive aggressive approach towards us, ask very personal questions about our personal lives, then write answers down, police our eating choices, trying to force unwanted food items, other medicines and blood tests for vitamin checks on my daughter that she doesn’t want, and now recently when the my life tester didn‘t link to phone it seemed we were being accused of medical negligence .. and a phone call, text messages and home visits were arranged?? I don’t think this is normal procedure from what I’ve been able to researched, we are feeling very vulnerable …what legally can be done. Are home visits mandatory? Can anyone please advise the best course of action to take. Thanks

Welcome to the forum, there are quite a few parents on here with children of various ages so hope fully they will be able to offer you some advice.
I suggest you contact the Diabetes uk helpline the number is at the top, tomorrow to discuss your issues and they may be able to tell you what you should expect from your team.

 

[Djbear]

Welcome @Djbear That sounds very stressful for you. I have Type 1 but none of my children do. Let me tag a few parents of Type 1s for you @Sally71 @Bronco Billy

Can you give examples of the kind of things you’re talking about? Eg what unwanted food items are they forcing on you, what unwanted medical tests?

How’s your daughter finding things? What insulins is she on? Does she have a Libre or Dexcom yet?

my daughter has dealt with the diagnosis very well and the deliverance of medications thank you. She is on nova rapid for fast acting and Lantus in the evenings… The diabetic team member is repeatedly telling her she should eat eggs and processed meats for ‘free’ foods… but these make her feel sick... despite agreeing to these foods the subject is always still being brought up.. Also my daughter has had two bloods already taken which she didn’t like, now they want to take more bloods, to check vitamin levels again, despite her having side effects on one of the prescriptions for a bottle of vitamins they said she needed to take which had nothing to do with diabetes. No pump yet as newly diagnosed in answer to your question. But we are feeling policed and afraid of the passive aggressive way we are being treated we feel we are being discriminated against…

 

[Leadinglights]

my daughter has dealt with the diagnosis very well and the deliverance of medications thank you. She is on nova rapid for fast acting and Lantus in the evenings… The diabetic team member is repeatedly telling her she should eat eggs and processed meats for ‘free’ foods… but these make her feel sick... despite agreeing to these foods the subject is always still being brought up.. Also my daughter has had two bloods already taken which she didn’t like, now they want to take more bloods, to check vitamin levels again, despite her having side effects on one of the prescriptions for a bottle of vitamins they said she needed to take which had nothing to do with diabetes. No pump yet as newly diagnosed in answer to your question. But we are feeling policed and afraid of the passive aggressive way we are being treated we feel we are being discriminated against…

I would have thought there was no reason that she should not be able to eat foods she likes as long as the fast acting insulin dose is adjusted accordingly. I suspect as it is early days that the diabetic nurse is working on the basis of a fixed bolus dose and therefore the meal must have a certain amount of carbs. Is she being dealt with by a paediatric team as they must have to take account of the varied food likes and dislikes of children as well as a whole host of other dietary considerations.

Having blood samples taken I guess is something she is going to have to get used to. I assume she is OK with the finger pricking.

 

[Inka]

@Djbear Hopefully a pump will be an option for your daughter in the future. They do make control easier and can make life feel more normal. The Libre is a piece of tech that you scan to check blood sugar (not a pump) and the Dexcom is a continuous glucose monitor. I know a child with it (a bit younger than your daughter) and it provides reassurance for their parents.

Is the diabetic team member you mention a dietician? Could you ask them to write in her notes that she doesn’t like eggs or processed meat? Possibly they’re just forgetting so reeling off the normal things they say to people. I’ve found that sometimes - that I have to repeat myself each visit.

I totally understand why you’re feeling policed, and I get why that’s very unsettling. I echo the suggestion to phone Diabetes U.K. on the number at the top of this page for advice. Could you also speak to your/her GP? Is there anyone on your daughter’s diabetes team that you feel isn’t policing you? Did they say why they wanted to do a home visit?

 

[Djbear]

I would have thought there was no reason that she should not be able to eat foods she likes as long as the fast acting insulin dose is adjusted accordingly. I suspect as it is early days that the diabetic nurse is working on the basis of a fixed bolus dose and therefore the meal must have a certain amount of carbs. Is she being dealt with by a paediatric team as they must have to take account of the varied food likes and dislikes of children as well as a whole host of other dietary considerations.

Having blood samples taken I guess is something she is going to have to get used to. I assume she is OK with the finger pricking.

Yes she is very good with the finger pricking and does her own already thanks. Yes she can still eat the foods she likes.. .but in every meeting she’s being told she needs to eat eggs, and processed meats which she’s agreed to eat despite them making her feel sick but we’re still being policed on this subject along with being told to eat red meats for iron too which my daughter doesn’t like. My point of posting is to find out legally if anyone knows what protection is in place for the family if any… has anyone dealt with the issues I originally mentioned and how did they manage a passive aggressive approach which I believe is being taken because we have autism in our family.

 

[Inka]

@Djbear Regarding ‘free’ foods, these are useful early on to have as snacks because they can be eaten with little or no effect on blood sugar. There’s no reason at all why your daughter has to eat eggs. I don’t eat eggs either, nor meat. The important thing is to find some ‘free’ foods your daughter can have eg cheeses, Babybel, nuts, salad veg, etc etc There are lots of things. If she eats meat, then cold chicken is good, or some tinned tuna, or anything like that.

I do take a multivitamin and mineral every few months, because I don’t eat meat or eggs so want to make sure I’m getting enough vitamins. No-one told me to do that. It’s my choice. Perhaps you could politely point out that many people are vegetarian and don’t eat meat, and some of those don’t eat eggs either.

If it’s you or your partner who has autism and you feel you’re being patronised or almost bossed about, then could you take a family member or friend with you? I know that’s harder with Covid, but they could be a support and a buffer, and also give their opinion about the way you’re being treated.

 

[Djbear]

@Djbear Hopefully a pump will be an option for your daughter in the future. They do make control easier and can make life feel more normal. The Libre is a piece of tech that you scan to check blood sugar (not a pump) and the Dexcom is a continuous glucose monitor. I know a child with it (a bit younger than your daughter) and it provides reassurance for their parents.

Is the diabetic team member you mention a dietician? Could you ask them to write in her notes that she doesn’t like eggs or processed meat? Possibly they’re just forgetting so reeling off the normal things they say to people. I’ve found that sometimes - that I have to repeat myself each visit.

I totally understand why you’re feeling policed, and I get why that’s very unsettling. I echo the suggestion to phone Diabetes U.K. on the number at the top of this page for advice. Could you also speak to your/her GP? Is there anyone on your daughter’s diabetes team that you feel isn’t policing you? Did they say why they wanted to do a home visit?

This is why I’m concerned. We have had two home visits since being home. The first one I strongly felt uneasy as if we were under some scrutiny, because we were being asked highly intrusive questions whilst the dietician wrote in a pad, yes this is mainly the dietitian but her and the lead nurse are very passive aggressive towards myself… but I just dismissed it. Then after the my life didn’t link and they seemed to suspect medical negligence by rushing a home visit, phone call and text…as a family we are becoming increasingly concerned that because we have a autism in our family they are mistaking this with learning difficulties perhaps? And seem to be overstepping their remit… This is why I have come on here this evening to find out what legal help is available and if anyone else is experiencing this..

 

[Inka]

That does sound quite intrusive. As I said, my children don’t have Type 1 but I haven’t heard of anything similar happening. I do know a young child who was diagnosed at 2yrs and they had some home visits, but these were seen as helpful. They talked about nursery, hypos at night, etc. There was no impression of monitoring the parents.

Could you be pro-actively assertive and tell them the autism doesn’t affect understanding and specifically ask them what their problem is? That sounds a bit rude, but I’m sure you could ask politely but clearly. If you knew what their issue was, you could address any concerns and correct any false impressions. I’d also check with your GP and ask if they’ve been told anything. You could ask for a copy of consultants letters, for example.

Personally, I wouldn’t go the legal route yet. I’d try to find out exactly why they were doing this, show your knowledge, correct any misapprehensions, etc, as a start and see if that helps.

 

[Djbear]

That does sound quite intrusive. As I said, my children don’t have Type 1 but I haven’t heard of anything similar happening. I do know a young child who was diagnosed at 2yrs and they had some home visits, but these were seen as helpful. They talked about nursery, hypos at night, etc. There was no impression of monitoring the parents.

Could you be pro-actively assertive and tell them the autism doesn’t affect understanding and specifically ask them what their problem is? That sounds a bit rude, but I’m sure you could ask politely but clearly. If you knew what their issue was, you could address any concerns and correct any false impressions. I’d also check with your GP and ask if they’ve been told anything. You could ask for a copy of consultants letters, for example.

Personally, I wouldn’t go the legal route yet. I’d try to find out exactly why they were doing this, show your knowledge, correct any misapprehensions, etc, as a start and see if that helps.

Ok that sounds like good advice. Thank you for taking the time out to speak with me about this issue. Very much appreciate.