Leighs - feeding requirements

[Guest guest]

Can anyone give me advice on feeding requirements

Lucas is 16 months old & NG tube fed, he is very floppy in his muscle tone and doesn't move much.

The Dietican currently has him down to have 1000ml of pedisure a day, but he doesn't seem to tolerate that much. We give him between 800 and 850 total, about 170 at a time give or take and about 170ml of water. feeds run every 3-4 hours at 40-50 minutes(200-250 rate)

He is getting some reflux at the end of his feeds despite having Domperidone [antirelux medicine] Is this too much food for this kind of child?

Has anyone had similar expieriences and found of ways around this?

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[Guest guest]

Hello , I have an 18 month old baby that suffers from reflux. He is on anti-reflux meds as well as thickening meds to thicken his food which seems to have helped. He has 800mls a day ... 200ml is Pedisure and 600ml is normal formula. So far so good ... he has very very low muscle tone ... can't roll over, sit etc. Cannot determin which Mito he has but its effected his muscles and brain. He is also a dwarf. Would love to hear your history with little one ... sounds like my little Connor.

Rgs Tammy in South Africa

Mother to Connor (18-months - unknown Mito)

Leighs - feeding requirements

Can anyone give me advice on feeding requirements

Lucas is 16 months old & NG tube fed, he is very floppy in his muscle tone and doesn't move much.

The Dietican currently has him down to have 1000ml of pedisure a day, but he doesn't seem to tolerate that much. We give him between 800 and 850 total, about 170 at a time give or take and about 170ml of water. feeds run every 3-4 hours at 40-50 minutes(200-250 rate)

He is getting some reflux at the end of his feeds despite having Domperidone [antirelux medicine] Is this too much food for this kind of child?

Has anyone had similar expieriences and found of ways around this?

Send instant messages to your online friends http://uk.messenger.yahoo.com Please contact mito-owner with any problems or questions.

[Guest guest]

If you are running the pump at 200-250 ml/hr you may want to slow it down to

see if he handles it better. I know it is a pain as it takes much longer,

but many kids need a much slower pace. Zipporrah handles the feedings the

best at a rate of 100 ml/hr. We sometimes get her up to 150 ml/hr but she

starts to reflux much easier so we usually don't try it. You may find by

slowing the rate down that you will be able to increase the amount given at

each feeding. SOME kids actually need 24 hr. feeds at a rate of about 40-50

ml/hr. My daughter is 17 months old and I also have a foster son that is 15

months old and it has been recommended to me to give between 3-4 cans of

Pediasure in a 24 hour period. The docs suggest 3 1/2 cans, but no more

than 4. Another thing to consider is whether your child would benefit from

a nissen. Zipporrah needed one and we have REALLY been happy that we did

it.

See www.caringbridge.org/ia/mitomomof9 and www.heartbeatsformito.org (a

photo look into Mito)

Darla: mommy to

Asenath (5) Mito, CNS Vasculitis, strokes, migraines, seizures, G-tube,

hypotonicity, disautonomia, SID, global delays, cyclic vomiting, bladder

issues, some wheelchair use, eye issues, gastric emptying issues...

Zipporrah (17 months) Mito, strokes, neuro-motor planning, SID, GERD,

dysphasia, G-tube fed, speech delays, extreme fatigue, aberrant subclavian

artery, disautonomia, hypertonicity, migraines, possible seizures, dumping

syndrome, iron deficiency...

Luke (17)migraines, sensory issues, & some evidence of SLE's...

Leah (14), Rachael (13), Isaac (11), Tirzah (8), Kezia (4), Marquis (3)

Joey (15 months) with hydrocephalus, dysgenesis of the corpus callosum,

encephalomalacia & leukomalacia, G-tube, GERD, immobile, severe dev. delays,

left hemiplegia (arm)...

(15 months) SID, dev. delays, right hemiparesis issues...

Leighs - feeding requirements

>

> Can anyone give me advice on feeding requirements

>

> Lucas is 16 months old & NG tube fed, he is very floppy in his muscle tone

> and doesn't move much.

>

> The Dietican currently has him down to have 1000ml of pedisure a day, but

> he doesn't seem to tolerate that much. We give him between 800 and 850

> total, about 170 at a time give or take and about 170ml of water. feeds

> run every 3-4 hours at 40-50 minutes(200-250 rate)

>

> He is getting some reflux at the end of his feeds despite having

> Domperidone [antirelux medicine]

>

> Is this too much food for this kind of child?

>

> Has anyone had similar expieriences and found of ways around this?

>

>

>

>

>

>

>

>

>

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>

>

> Send instant messages to your online friends http://uk.messenger.yahoo.com