Baby girl, dilated miocardyopathy from Argentina, need help

[Aleta]

ok, let´s see tomorrow. finger crossed!!!

[Corrij (therapeut)]

Hello aleta,

I can imagine that your a little bit scared for that apointment. Does the cardiologist know about her faster breathing during sleep? Tell him, maybe its nothing, maybe she has a little bit of fluid in her lungs.



I. Sleep and The Heart

The process of sleep is made up of the following two primary stages:

Rapid-eye-movement (REM) sleep
Non-REM sleep
When you first fall asleep you are in the non-REM stage. The non-REM stage of sleep is a time when your heart does not have to work so hard. About 80% of a full night's sleep is spent in this stage. During non-REM sleep, your heart rate, breathing and blood pressure all drop to levels below those that occur while you are awake.

REM is the stage of sleep when you have most of your dreams. It is only about 20% of your total sleep time. Your blood pressure and heart rate can go up and down during this stage. If you have a nightmare that wakes you up, you may find that your heart is racing.

When you wake up in the morning, your blood pressure and heart rate both go back up. It is time for you to be active again, and your heart has to get ready for a long day of work.

Good luck tomorrow,

greetings,
Corrij

[Aleta]

Thank Corrij, I noticed that she breath faster when she just fall sleep and when she is about to wake. When she is deep spleeping she breath very quiete, I believe tha´t the REM stage. But anyway I´ll tell the cardiologist about it, she asume that Lara is agitated all the time and she is surprise when I tell that is never agitated, even when she walks. She is really active and get upset when we don´t let her move as she wants.

Thanks for this info, I´ll call the pediatrician in a while.

hugs.

Aleta.

[Aleta]

Hi Willy and Corrij! I hope you are doing well. Today we did the CRP, vitamin D and BNP tests, the results will be ready Dec 11! I though that those was fast results, but it seems that they are faster in hopitalizations. The lab will send the results via email, so maybe -maybe- could be earlier.

About the faster breathing I´ve call the pediatrician and sayd that could be the heat, that I keep an eye on her. today she was breathing normal except when they took the blood sample. Even so, I´ll tell the cardiologist next week (if we see her doing it again will see the pediatrician).

Well, that´s the news!

Thank you for be there for us

[Corrij (therapeut)]

Hi Aleta,

Oke we must wait a few days for the results

You write that her faster breathing has something to do with the heat? Do you mean the temperature outside? Here in the Netherlands its freezing
Does she sweat a lot?

greetings,
Corrij

[Aleta]

Yes, the temperature is high, we are finishing spring ant today is 32°, but the last few days was 22-24, and before 30°, it´s been a crazy weather. I don´t think was that...

she was a little bit sweaty at time of diagnosis almost 6 month ago, only when she was drinking her bottle, but not anymore since a long time ago. The only parts of her body that we noticed sweat are the feets and hands when she is moving a lot trying to walk. And at the time she never get tired, just upset when she can´t get were she wants by her own. She really looks like a normal child of 10 months... she is a little tiny but she was born premature with 1,930 gr, so she grew a lot... so anything weird gets me worried like this few days when we noticed the fast breathing, and she didn´t eat to much.

Now she is eating normal again. there are two tooths almost coming out, so maybe she was upset and not hungry because of that.

We reach a point when we can´t tell what is because of cardiomyopathy and what is normal baby stuff. Until now, since diagnosis everything turned out normal baby stuff, but before the no eating, no growing and dry diapers turned out CM.

Now she is growing, wets a lot the diapers and eat, but when she don´t eat I get real scared. The next day she eats, so... maybe the eating part is just her personality.

This is scary.

[Corrij (therapeut)]

hello Aleta,

As a parent, the nutritional needs of your baby or toddler are obviously a priority, and it’s easy to feel overwhelmed by the amount of differing information out there. The food a child eats in their early years can influence their dietary habits later in life, so it’s important to instil good habits and a healthy relationship with food from an early age. Once your child is eating solid foods, you’re likely to find that some of the meals you so lovingly created are rejected. Don’t worry, this is perfectly normal, but it is wise to try to get into a good routine as soon as possible.

Amounts vary depending on the age and activity level of
a child. Each day, offer young children 3 meals and 2 or
3 snacks. Since their stomachs are small, they need to
eat more often.

Offer young children small portions, especially of new
foods or previously rejected foods. They can always ask
for more, if there is extra. A child may need many
times of seeing, smelling, and tasting a food before her
or she learns to like it. Allow children to refuse food
politely, and eat as much or as little as they want of
foods offered.

Provide meals and snacks at regular intervals.
● Provide a variety of healthy choices.
● Eat with children and model healthy habits and
polite manners.
● Let children eat as much or as little as they want of
foods offered.
● Encourage; don’t bribe or bargain.
● Repeatedly offer previously rejected foods.
● Accept that a child may not like some foods.
● Remain calm at mealtimes.

She`s doing great so be happy

greetings,
Corrij

[Aleta]

Thank you Corrij!

I believe she is doing great, but as my oldes child didn´t had any health problem, I wasen´t worried when he didn´t finish food or solid, and he was very tiny at birth but he had no problem gaining weigh.

With Lara I´m always alert, and most of the times for normal stuff. The last time we went to see our ped she gained 400gr in a month, I guess for her age it´s fine, but with CM I have my doubs.

At the end, I know I have to do the thing Willy always says to me: Look at her. I do, and she looks amaizing.

Thank you thank you thank you.

[Aleta]

Hi Corrij and Willy!

I went to the pharmacy today and saw omega 3 fish oil, and I remebered some kids are having that besides all the other supplements. I found out on internet that reduces anormal heart rythim an heart attack.

It would be good for Lara? or we are ok with what she having already? Not exatcly entusiastic for giving her more stuff, but if can help more, we´ll do it!

Chrismas tree time

Hugs

Aleta

[Corrij (therapeut)]

Hi Aleta,

Can you give me a list of supplements and the amount she`s taking?
I could read al these pages but.....

Wait with the fishoil,

greetings,
Corrij

[Aleta]

Hi Corrij!

D_ribose 1,35 grams per day in 3 times
Magnesium 50mg per day in 2 times
L-Carnitine 500mg in 2 times
Qo10 150mg per day, one take
Also 1mg of Supradyn
Vitamin D one capsule per day 1000 UI
Iron

[Willy]

Based on the fact that Lara is 8 kg

[Corrij (therapeut)]

Hi Aleta,

How much iron and why iron?

greetings,
Corrij

[Aleta]

She is havein 15mg of iron. In argentina we all give iron to babies until they get one year at least, depending on the pediatrician, sometimes they advice until two.
In the last blood test she was in the limit of RBC, but still ok, but was a tiem when we´ve started with all the medication and in order to not botter her so much we skip several days at week. Since the blood test we are given her averyday. Also, we are adding meet to her diet.

[Corrij (therapeut)]

Hi Aleta,

Infants ages 7-12 months need 11 milligrams of iron a day. Babies younger than 1 year should be given iron-fortified cereal in addition to breast milk or an infant formula supplemented with iron.

Toddlers need 7 milligrams of iron each day. Kids ages 4-8 years need 10 milligrams while older kids ages 9-13 years need 8 milligrams of iron each day.

The best way to ensure your toddler has enough iron is to include a mixture of iron-rich foods in her meals. Aim to include at least one of the following foods in each of her daily meals:

Lean red meat, such as beef, lamb or pork.
Dark poultry meat, such as chicken thighs or legs.
Liver or liver pate. Only include liver or liver products once a week, as they have high levels of vitamin A.
Oily fish, such as tuna, sardines, mackerel, trout or salmon. Include oily fish in your toddler's meals once or twice a week.
Dark green vegetables, such as broccoli or watercress.
Eggs.
Pulses, such as baked beans, lentils and kidney beans.
Dried fruit, such as dried apricots, figs, sultanas and prunes.
Bread.

Fortified breakfast cereals.
Ground or chopped nuts. Not whole nuts, as these are a choking hazard.


Helping your toddler's body to absorb iron is particularly important if the iron does not come from meat (this is called non-haem iron). Non-haem iron is not absorbed as easily as the iron in meat (haem iron).

You can help your toddler to absorb iron by giving her something containing vitamin C at the same time as the iron-rich food. Vitamin C increases the absorption of iron.

greetings,
Corrij