Milk Formula for G6PD Babies

[andrej]

hi mga mommies, I'm new here, I have a 1 month old son who is g6pd deficient. Nag susuka sya last Oct 31, then i brought him sa pedia nya, sabi overfeeding daw, so nag lessen kame ng milk intake nya, tumigil naman pag susuka nya kinabukasan.

Then this Nov 5 nagsuka ulit sya, almost every after feeding, as in bulwak at madami, i brought him to different pedia to seek 2nd opinion, i was advised to changed milk, my son's milk is NAN H.A, then pinalitan ng DG infant formula, kaso nagsusuka pa din sya eh.

meron po bang almost same experience like mine? sobrang nag wo wori kase ako sa pagsusuka ni baby, bulwak, madami pati sa ilong may lumalabas.

same thing happened with my son... pburp mo

[theshopaholicprincess]

^ I think normal yung nagsusuka or nag ooverfeeding yung baby. Ganyan din baby ko. This week namin malalaman yung confirmatory testing ni baby regarding G6PD and ang tine-take nya na gatas eh S26.

For mommies na may babies na G6PD, is it hard to deal ba? Nag wworry kasi kami ng husband ko kasi pag tinitingnan ko yung list nung mga bawal na food and drugs napakarami. Parang limited yung pwede ipakain kay baby.

[hann-hann]

^hi sis. 4yo na yung anak ko pero okay naman. Sa mga gamot, from the start pa lang alam na ng pedia nya na g6pd deficient sya kaya yung nga nirereseta sa kanya safe naman. Sinusunod din namin lahat ng bawal, lalo na yung madali lang makuha like yung dingdong(beans), tsaka taho. Pero yung toyo, hmm, di talaga maiiwasan pero mga once a month lang to. Thank God di pa naman sya nagkakasakit ng may connect sa pagiging g6pd deficient nya. Wag naman sana.

[theshopaholicprincess]

^thanks sis. Tinitingnan ko nga yung gatas na iniinom ni baby kung safe sa kanya. This week palang namin makukuha yung confirmatory testing nya regarding sa g6pd. nakakalungkot lang nung una kasi parang andami dami ng bawal na foods. Pero blessing na rin as early as possible eh nalaman namin yung situation ni baby. Me and my husband are still hoping na sana negative pa rin yung test.

[daveigh]

Nagpositive din ang baby ko fo G6PD. S26 ang milk nya.

Kung mother ang carrier nito, nawi-weird-uhan lang ako kung saan galing ito? Kasi may kapatid akong lalaki wala naman syang G6PD...

[PRINCESS_ZELDA]

I'm a newbie here and my 3 year old tested positive.  Her infant formula was NAN, and right now, she's drinking NIDO. OK naman.  She's been eating pancit, adobo, and taho (with 3 day interval sa taho kasi ngayon pa lang namin na introduce sa kanya) and wala naman negative effect sa kanya.  From the seminar we attended 3 years ago, sabi naman, hindi naman daw talaga nakaka affect ang soy beans per se..but fava beans.  May nag advise din sa amin na usually, they outgrow yung deficiency, so by age 7, kailangan daw ma-test ulet. 

Hope I was able to provide useful input.   

[daveigh]

^ wow thanks for that info sis! tanong din namin yan sa pedia nya...

[nikki]

Sis daveigh, na-curious ako dito. Was the test part of new born screening? Or did your baby have other symptoms and undergo a separate lab test?

[daveigh]

^ Yes sis part sya ng newborn screening. So far wala kaming symptoms na nakikita. It's a genetic disorder. Sex-linked, so it came from me.

[theshopaholicprincess]

sis, san kayo napag confirmatory testing? Samin di na explain kung sino yung carrier kasi me and my husband wala kami allergies even sa both sides namin na super alarming.

[daveigh]

^ sis sa MCU kami nagpaconfirmatory testing.

Sis chances are, ikaw ang carrier. Carriers do not necessarily should show allergies from soya et al. Carrier ka lang. Tsaka hindi sya allergy.

[theshopaholicprincess]

^ so meaning to say mommies talaga yung carrier ng g6pd? We tried asking the pedia nung last visit namin and hindi masyado na explain samin sino yung carrier. Though she told me that lots of babies daw na ni-ttreat nya may condition ng g6pd and that's because may newborn screening na nga.

[daveigh]

^ Yup, pero pwede din si Daddy, kung girl ang anak mo. It's kinda hard to explain, better search it sa net. I got the paper kasi that explained it then si hubby ang nagexplain sa akin, he understands it better than I do. 

It's enzyme deficiency and genetically linked, so walang treatment, unless gene repair, if i am not mistaken. Kids just have to avoid the foods/meds na makakadagdag sa deficiency, I think you already have the list. Pero may iba na naga-adapt eventually eh. Pero mas mabuti nang makasiguro at iwasan na lang.

[nikki]

Thanks sis daveigh! I just realized we have not received the results of my baby's new born screening. Will inquire at TMC tomorrow. Take care!

[PRINCESS_ZELDA]

Thanks sis daveigh! I just realized we have not received the results of my baby's new born screening. Will inquire at TMC tomorrow. Take care!

Hi nikki/daveigh,

Yung sa daughter ko dati, we were referred sa UP Manila for confirmatory testing, around 10 days after her birth.  Sa Las Pinas City Medical Center pala ako nanganak nun. Makikita nyo dun ang haba ng pila para sa mga nagpapa test.  Tapos nakaka awa pag babies, kasi di na sa paa kumukuha ng sample ng blood, CBC na talaga.  After namin nakuha ulet yung result, nag text ang UP Manila inviting us for a seminar to provide awareness sa mga parents ng mga kids na positive sa G6PD.  It made us aware really and to worry less.  From there, parang makikita nyo na usual pala sha 

[achara07]

^ sis sa MCU kami nagpaconfirmatory testing.

Sis chances are, ikaw ang carrier. Carriers do not necessarily should show allergies from soya et al. Carrier ka lang. Tsaka hindi sya allergy.

sis magkano po ba mag pa confirmatory testing sa MCU?
hindi ko pa siya napapa conformatory test kasi nag wowork ako and mama ko lang nag aalaga kay baby.. baka next week punta kami ng MCU..
pwede pa ba i- newborn screening kahit 4 months na? thanks

[daveigh]

sis nasa 400 something yung price, sorry limot ko na exact price. dala ka na lag 500 to be sure.

ang alam ko,pwede pa panewborn screening kahit tapos na. nakita ko kasi dun sa mcu meron eh. inquire ka na lang dun...

[Shiloh Nigel]

I'm a newbie here and my 3 year old tested positive.  Her infant formula was NAN, and right now, she's drinking NIDO. OK naman.  She's been eating pancit, adobo, and taho (with 3 day interval sa taho kasi ngayon pa lang namin na introduce sa kanya) and wala naman negative effect sa kanya.  From the seminar we attended 3 years ago, sabi naman, hindi naman daw talaga nakaka affect ang soy beans per se..but fava beans.  May nag advise din sa amin na usually, they outgrow yung deficiency, so by age 7, kailangan daw ma-test ulet. 

Hope I was able to provide useful input.   

[JhaeynL]

Mine's taking enfapro a+,  nung 0-6mos sya enfalac a+.. Ok Nman sa knya [textspeak!] milk.  I have cousins na may g6pd pero kumakain pa sila ng taho

[clouie_gurl]

i just want to share this link to guys....

http://g6pd.org/en/G6PDDeficiency/FAQ.aspx

you learned alot from that website...


I'm a mom of a 3months old baby with G6PD also... his pedia give him enfalac as his formula milk.. [textspeak!] ng pedia nya di nmna daw kelangan mag worry kasi di nman daw life threatening ang G6PD kasi madami daw ang may G6PD pero di nila alam n meron sila nun.. kasi wala nman new born screening before... at dahil ito ay inherited  ibig sbihin taung mga magulang ng mga babies n to eh may G6PD n hindi [textspeak!] aware..... basta iwasan lang ang mga bawal, at twing nag kakasakit si baby dalhin kaagad sa doctor...




A) If the father is unaffected (healthy) and the mother is a carrier (no clinical symptoms):
One daughter out of two will be a carrier
One son out of two will be G6PD deficient

B) If the father is G6PD deficient and the mother is unaffected:
All daughters will be carriers
All sons will be unaffected

C) If the father is G6PD deficient and the mother is a carrier:
One daughter out of two will be G6PD deficient
One daughter out of two will be a carrier
One son out of two will be G6PD deficient
One son out of two will be unaffected

D) If the father is unaffected and the mother is G6PD deficient:
All daughters will be carriers
All sons will be G6PD deficient

E) If both father and mother are G6PD deficient:
All daughters will be G6PD deficient
All sons will be G6PD deficient

SOURCE:
http://g6pd.org/en/G6PDDeficiency/FAQ.aspx