14mth old daughter diagnosed a week ago. Help....

Sandra_Azucar

Member
Messages
7
Type of diabetes
Type 1
Oh, I forgot to mention that I totally agree with the commenters who suggested an insulin pump and a CGM. Both of those will allow you much more control over her Sophia's blood sugars, letting you get to a very precise dosage that matches her needs more perfectly and alerting you to when she's out of range. The reason why injections can be so tough for kids (besides the ouch) is that the smallest dose may be too large for her needs, and may force you to keep feeding her to bring her sugars up. Though it may be "off-label" as a prescription, an insulin pump (and perhaps a CGM) may be prescribed at your daughter's age by a kindly doctor. I recommend Animas for the pump and Dexcom for the CGM. Both are just excellent. For more guidance, check the social website Children with Diabetes to find families who can guide you on how they got the devices they needed. Also there is a Facebook group I'd recommend called Type 1 Grit, composed of parents of children with Type 1 who are working to get their kids to a normal blood sugar full time.
 
Messages
14
Type of diabetes
Type 1
Hi @sophia's Daddy, please be comforted that your daughter will be OK, with your support. I've been Type 1 for 30 years and have no complications whatsoever, thanks to tight glucose control. You can help her achieve those great numbers and normal glucose if you choose a lower carb, or very low carbohydrate diet. In addition to helping lower her blood sugars, a low carb diet tends to be very good for anyone with autoimmune disease, along with avoidance of gluten and other allergens and the addition of probiotics to restore her gut microbiome. For Type I diabetes in children and adults, the best resource is Dr. Richard Bernstein, who wrote the book "The Diabetes Solution". He recommends a very low carbohydrate diet, which will greatly help you in getting her blood sugars to normal. The other thing he suggests is sparing her insulin producing cells as much as possible at this early stage. She most likely still has some beta cells left....and they may survive long term, giving her a "honeymoon" of little required insulin. But to get this honeymoon, you'll need to normalize her glucose levels very soon to give her remaining beta cells some rest from the high blood sugars. Yes, the beta cells are under autoimmune attack, but the immune system typically backs off the attack after the initial assault, leaving some behind. Check out Dr. Richard Bernstein and the Children with Diabetes website, for very targeted support. God bless you and your family as you find your pathway to good health for her. It will happen!

Thanks for your advice. I think that the low carb idea is certainly something to look into. I think over the next however many years we will be doing lots of research and info gathering to make this as easy and as less stressful for our daughter as we can. It's nice to hear that it hasn't effected your health in any other way after 30 years. That's a big worry for us at the moment. Worrying about what might happen to her but hopefully we can control this to give her the best life we can. I will look into the book as well. Lots of reading coming up.
Thank you.
 

ConejitoAzul

Member
Messages
5
Hi @Sophia's_Daddy

We were in a similar situation to you late last year and have come a long way with the management of our child's T1D in that short space of time. Whilst it is not what any parent wants for their child, T1D is manageable! It is how you manage it that will make all the difference in Sophia's life.

You will very likely be told to manage her Diabetes through a normal diet and insulin injections to cover the carbohydrate intake. We followed that advice blindly for a month, but have since moved to Dr. Bernstein's approach of a Low Carbohydrate High Fat diet (high Protein for growing children) as mentioned by @Sandra_Azucar. The benefit of starting this method of management now is that Sophia won't miss carbohydrates.

The following is real data from our child's Blood Glucose Monitor and evidence for the LCHF/P way forward. Our child is still in the honeymoon period where the pancreas has some function left, but will ultimately need to move back to insulin when this period ends. If we can get anywhere near the 3 year honeymoon the kid in the article I linked below had, we will be very happy.

For reference, the charts below show a 24 hour period and each dot is a BGL reading, with the red ones representing lows. The line shows the average reading at the time of day and the grey box is the target range.

Normal Carbohydrate Diet and Insulin (1 month after diagnosis).
Untitled1_zps32084c7e.png


Low Carbohydrate High Fat/Protein Diet, No Insulin (4 months after diagnosis).
Untitled_zpsfb02cf6e.png


Good sources of information on LCHF/P:
  1. Type1Grit (Facebook)
  2. Dr. Bernstein's Diabetes University (YouTube)
  3. The Three Year Diabetes Honeymoon
Happy to answer any questions.
 
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azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
@ConejitoAzul That isn't necessary to,get good control and I've yet to see any evidence that LCHF is safe longterm for young children. There's a reason why it's not recommended by paediatric DSNs and its not because they're silly or blind or malicious or there's some dresdful conspiracy of cereal manufacturers hiding the evil truth about killer carbs. It's because they know that carbs are important for,growing children and also because they've had access to results from children on Keto diets for epilepsy and the possible long term effects of those. The choice isn't between LCHF or raging high sugars. It's perfectly possible to,eat a moderate amount of carbs and get very good control - and by very good control, I mean as good as your child's.

While an excess of carbs makes control hard, it is quite simply not necessary to reduce carbs to,such a low level if you use insulin appropriately, and, in the case of young children, in my opinion it is very unwise.

It's your choice what you feed your child, but there are other options that are equally as good, as regards blood sugar control, and LCHF is not an option I'd choose if any of my children developed Type 1. A pump is.

I would never recommend LCHF for a baby, nor closed FB groups that merely serve as echo chambers and amplify parents' fears.

@Sophia's_Daddy My advice is to follow the guidance of your daughter's DSN...
 

Janet_rabbit

Active Member
Messages
36
Type of diabetes
Type 1
Treatment type
Pump
Dislikes
intolerance, hatred, fighting
I was diagnosed at age 8, so quite a bit older, but I remember my mum being very upset about having to give me injections and know it must be really hard for parents of such young children. You are giving the wee one such great support and care that it will work out fine. I have had T1 for 40 years now and have a healthy daughter of my own and enjoy lots of sport and have no complications so, although it can be difficult at times living with T1, I hope you can be reassured a little. Meeting up with other families with young children with T1 is probably the best advice I can give. All the best.
 
Messages
14
Type of diabetes
Type 1
Thank you all for your advice. It's really good for us to get so much in-depth information to be able to hopefully make an educated decision on how to look after our daughter and her diabetes. We will certainly consider everything. We saw the DSN today and we are hoping to get Sophia on a pump in the next 6-8 weeks. We will see how that goes and go from there. I think lots of research will continue to be done by us in the coming months and probably years (two books already en route to us) For now we are thinking we will stick with the DSN advice and with the aid of a pump we will hopefully manage to control her levels. Lots to learn!!!!!
 
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therower

Well-Known Member
Messages
3,922
Type of diabetes
Type 1
Treatment type
Insulin
Wholeheartedly agree with @azure. LCHF is only an option and not a requisite for diabetes control, especially in T1 diabetes.
From personal experience I would advocate great caution in following such a diet.
Go with DSN advice, research, ask questions and learn a little and often.
You may and will make mistakes along the way but they need to be your mistakes.
Good luck and a high five for Sophia.:)
 

ConejitoAzul

Member
Messages
5
@ConejitoAzul That isn't necessary to,get good control and I've yet to see any evidence that LCHF is safe longterm for young children. There's a reason why it's not recommended by paediatric DSNs and its not because they're silly or blind or malicious or there's some dresdful conspiracy of cereal manufacturers hiding the evil truth about killer carbs. It's because they know that carbs are important for,growing children and also because they've had access to results from children on Keto diets for epilepsy and the possible long term effects of those. The choice isn't between LCHF or raging high sugars. It's perfectly possible to,eat a moderate amount of carbs and get very good control - and by very good control, I mean as good as your child's.

While an excess of carbs makes control hard, it is quite simply not necessary to reduce carbs to,such a low level if you use insulin appropriately, and, in the case of young children, in my opinion it is very unwise.

It's your choice what you feed your child, but there are other options that are equally as good, as regards blood sugar control, and LCHF is not an option I'd choose if any of my children developed Type 1. A pump is.

I would never recommend LCHF for a baby, nor closed FB groups that merely serve as echo chambers and amplify parents' fears.

@Sophia's_Daddy My advice is to follow the guidance of your daughter's DSN...

@azure I disagree with some of your points, but I'm not here to argue. I merely posted to provide insight for others to form their own opinion on how to treat T1D, so thank you for approving my post even though you disagree with its sentiments.

@Sophia's_Daddy Do listen to your DSN and do look into insulin pumps, we are attending a pump introduction course next month for when our child's honeymoon is over. You will find your own path on this journey and I posted purely to highlight that there is another way to control T1D other than what your DSN will tell you. Most Doctor's have no idea about diet and that is why they refer you to a Dietitian. Our Dietitian actually worked on the Keto diet for epilepsy study and is on board with what we are doing. In simple terms, you wouldn't give and Alcoholic alcohol, so why would you give a Diabetic carbohydrates. If you are still curious, this video is a good introduction to LCHF: Justin Hansen and Julie Reid - 'Low Carb for Type 1 Diabetes' Good luck with Sophia's treatment and I'm sure I'll see you around the forum.
 

azure

Expert
Messages
9,780
Type of diabetes
Type 1
Treatment type
Pump
Thank you for your friendly response @ConejitoAzul :)

However, I take issue with the analogy with alcoholism. Type 1 isn't an addiction to,carbs or an allergy to,carbs, it's caused by the loss of endogenous insulin production due to an auto immune attack. Carbs are NOT evil and it's wrong to suggest that eating carbs when you Type 1 is bad or stupid.

There are members here who've had Type 1 for more than 50 years, eaten carbs and are free of complications.

Yes, LCHF is another way of treating Type 1, but so is black coffee and whisky - an early treatment before the discovery of insulin.

Yes, some videos really 'sell' LCHF for Type 1 a "Look at this dreadful spiky graph...now look at this lovely smooth one.." but that's just what it is - selling with no basis in fact. I can produce two graphs like that too - one spiky, one smooth. What secret diet change did I make to get the smooth graph? Answer - none. I learnt to time my insulin and get my doses right. Every single 'bad before graph' I've seen has been from someone doing something wrong - every single one.

The key to controlling Type 1 isn't an extreme diet - of any kind. That is, neither too many carbs, nor too few. Eating too few carbs messes up insulin sensitivity, it can make control harder, and it can cause other health issues, as well as affect a child's life. Lower carb is sensible (and each person will find their own level) but eliminating carbs down to a minimal level is unnecessary and potentially harmful. This is doubly true for growing children.

Keto/LCHF might be trendy and a moneymaker but it's not a natural,way of eating and it's definitely not suitable for children - duabetic or not, in my opinion. Even my friend who is strict paleo and also low carbs because she has weight issues, makes sure to,give her children more carbs.

The bottom line is if you can't cntrol your blood sugar on a moderate amount of carbs, you're probably doing something wrong. Therefore the answer is to,remedy that - not to swap to an extreme diet and then wrongly think that's some magic solution.
 

Jamesuk9

Well-Known Member
Messages
504
Type of diabetes
Prediabetes
Treatment type
Diet only
On the other hand, T2 is often very much triggered by an addiction to sugar and carbs....

If an element of addiction wasn't possible, cravings wouldn't happen.

Ultimately, whatever works for each and every individual is the sensible approach.
 

ConejitoAzul

Member
Messages
5
@azure Maybe I should have used the Coeliac and Gluten analogy instead of the Alcoholic, although I think most people can relate better to the latter even if its not quite the same as T1D. Regardless I agree you have a valid point in saying that control is the key, whichever way you manage to achieve it!

I would also add that finding and following a Keto diet has not cost us any money, I doubt it is quite the moneymaker in comparison to big Pharmaceutical where there are a lots of companies making big money from insulin production and all the associated equipment.

Lets agree that we are both hoping there will be a cure and that in the meantime a closed loop artificial pancreas would be welcomed.