Low Carb IHCP - school

[Penfold_Dad]

Hi

It's been a while since I posted on here. Wanted to put the feelers out there to see if anyone's having or combatted the same issue as we are facing.

My daughter Freya is five, about to turn six and has been diagnosed a year. We eat a low carb diet as a family and she has a hba1c of 5.7 on MDI. We have a cgm (self funded) and she is only low 3% of the time.

In school we aren't able to contribute to her IHCP, all health input is from the health board so they won't tailor the IHCP to suit her being low carb. When she is low the health board have provided generic guidance for all children under 35kg based on a high carb diet, so using lots more insulin. (Freya weighs 18kg)We aren't allowed to tailor this to suit her needs so correcting hypos makes her go high and stay high. We would like to aim to correct to the top of target range say 6.5 mmol.

Has anyone faced/combated similar issues? Is our request unreasonable.?Can the school stop us from inputting?

 

[azure]

I find that strange that the school would stop you from inputting @Penfold_Dad

The Plan is supposed to be an individual plan tailored to your daughter's needs.

If you feel it's not doing that, I suggest you write to the school and governors outlining your concerns, and putting in writing how you'd like the plan amended.

 

[Penfold_Dad]

We are way past that, the governors are making a decision this week to tell us whether Freya can continue to attend. They are adamant the law is on their side and that the health board provide the information around the medical aspect of her care and we either accept it or leave

 

[azure]

That sounds shocking @Penfold_Dad What is their issue? Are they simply refusing to step outside guidelines or are they saying your daughter would be at risk or what?

Have you spoken to the LEA? Have you sought advice from, for example, Duabetes UK?

 

[Penfold_Dad]

Exhausted all avenues, they aren't considering anything, health advice comes from the health board not the parent, end of. Closed system

 

[Penfold_Dad]

We cant even have a conversation about her care unless the diabetes nurse is there. It is ridiculous, I advised last week to stop a hypo after lunch to give her half a glucose tablet and instead they let her hypo as it wasn't in the health care plan.

 

[Penfold_Dad]

Been there, done that, the director of diabetes uk has spoken to them personally.

 

[Penfold_Dad]

This will end up in court, it is so sad

 

[azure]

We cant even have a conversation about her care unless the diabetes nurse is there. It is ridiculous, I advised last week to stop a hypo after lunch to give her half a glucose tablet and instead they let her hypo as it wasn't in the health care plan.

That sounds madness : (

 

[Penfold_Dad]

I truly believe there is a possibility of a joint attempt between the health board and school to make low carbing so awkward we would be forced to stop