G6PD DEFFICIENCY

[workaholic]

Hi Sis,

I have 3 kids and all have G6PD.  Usually kasi ang carrier niyan is the mother and ang affected lang na kids are the boys.  Pag girls nagkaron usually carrier lang or kung meron din siya must be because her dad has g6pd din.

I understand the fear and frustration you may be going through but don't worry.  What is important is that you know   So now you can help make your child's life better.

Confirmatory test is very important, not just because the first test might be wrong... but because there you will find out how big the deficiency is. 

Like for example my 2nd baby has a bigger deficiency than  my first.  So some foods that my first baby can tolerate my 2nd cannot. 

But so far my first 2 kids can eat adobo and went through cerelac phase and they are fine.  But they really avoid Taho, Tofu and anything Menthol.

This is not something they can be cured of... for life na talaga so better train them early.  Both my sons (new born pa kasi yung 3rd ko) are trained not to eat candy... kasi most of the candies may menthol.  But they know pag Frutos pwede hehe.

They also cant use colgate kasi kahit yung for kids nila may menthol , it doesnt say on the package but I tried it and tasted it meron.  So I made them use Happy Toothpaste for kids yung strawberry gusto nila.  My panganay who is 10, uses oracare for mouthwash kasi di siya pwede ng listerine.

I think when the kid is big enough to understand, have him try to taste menthol so he knows ... that thats what he is not supposed to take.

Plus pala, I tell my kids they are allergic... para la na masyado explain sa other people about genetic deficiency.

Hope I was able to help.

[mommajane]

sis pano malalaman kung gano kalaki deficiency ng baby?

TIA

[mommygracee]

sis pano malalaman kung gano kalaki deficiency ng baby?

TIA

sis, magpa confirmatory test ka sa UP, they will send you the result.

[Len143]

For life na po g6pd basta sakit na inborn halos for life na po.  G6pd din baby ko (2yo).  Super iyak, paranoid, panic,,.. lahat ng sakit parang umipon sa katawan ko nung malaman kong may g6pd baby ko. Pero habang tumatagal naiintindihan ko na tungkol dito.

Base sa experience ko kay Kos. Pinakasafe na antibiotics is cefalexin. Todo iwas ako sa mga high risk na meds, moth balls, menthol at FAVA beans(nabasa ko sa previous quotes wala sa pilipinas or madalang lang).

Kaunting munggo soup at soy sauce ok lang kay Kos.  Taho di ko pa natry takot ako kasi super puro peans ata yun di ko din kasi sure kung malinis ang pagkakagawa. Basta lahat ng pagkain pinapakain ko sa kanya pero pagdating sabeans konti-konti lang.

FAVA beans kala ko yung tinatawag nilang BULE sa kapampangan, hindi pala yun?

[mommajane]

^^
sis hindi kami sa UP pinapunta. sa OLLH po tpos [textspeak!] result 0.3
wala naman nagexplain meaning nun. positive po ba baby ko?

TIA 

[Len143]

^^
sis hindi kami sa UP pinapunta. sa OLLH po tpos [textspeak!] result 0.3
wala naman nagexplain meaning nun. positive po ba baby ko?

TIA 

Sis, heto result gn baby ko
Ref. Range: > 146 U/IT erythrocytes
Result:  43.78
Parang 1/3 lang sa normal ang result

Sana mag-success sila dun sa sinasabi nilang gene theraphy para matreat G6PD.   

[cAeLeBs MoM]

Hi! My 2.5 month-old son is G6PD deficient and I am exclusively breastfeeding him. Should I avoid soy products as well since my baby is nursing from me?

[sette112096]

^ hi sis! ako din, my son is g6pd deficient and he is breastfeeding. i asked his pedia if i have to avoid the foods na bawal sa kanya kasi nga he's nursing on me. pero his pedia said na it's ok for me to eat yung mga bawal sa kanya kasi hindi naman direct. para kasi maka-affect sa bata dapat direct syang na-expose or na-consume yung bawal na food. hth! 

[happyfemme]

Hello.

Its nice to have this kind of thread, malaking tulong sa mga mommies na naghahanap ng support group for their kids na may G6PD.

My son is one month a one week old na. Here is his result:
Result : 1.92 U/g HB
Reference for Newborn : 13.22 U/g HB

Talagang deficient si baby.

At first, talaga magugunaw ang mundo ko nung malaman kong deficient si baby. Iniisip ko talaga halos gabi-gabi kung saan nakuha ng baby ko yun.

Pero napaisip ako that may baby needs me right now. I have to be strong for my baby and ako lang at ang daddy niya ang makakatulong sa kanya. So, talagang research ako ng reasearch about cases ng G6PD and what are the things we have to avoid for our baby.

First, nakipag coordinate ako kay OB on what we should do. Binigyan niya ako ng list ng mga bawal and at the same time tumingin pa ako sa internet baka may na miss pa ang OB ko na mga bawal.

Second, ni-refer ako ni OB sa Hematologist (ewan ko kung tama yung tawag dun). They know about G6PD daw, ngayong saturday palang ako pupunta sa ni-refer ng OB ko.

Sabi ng OB ko, they are hoping na mawala sa listahan ang "soy" sa mga food na bawal sa mga G6PD people. Kasi parang wala naman daw medical studies na it affects deficiency. (fingers crossed)

I have to take one step at a time. Marami naman daw kids na healthy and happy na hindi naman hindrance ang pagiging G6PD. Let not think that its a "disorder", let just look at it na parang allergy nalang ni baby.

BTW mga sisses is Cord Blood Banking can cure G6PD? Curious lang.

TIA!

[sleepless]

hindi pala updated ang topic na ito :-(

My son who is 7months now is confirm with G6PD deficiency, anybody knows about this kind of disorder?, is it Fatal? Serious?

Hayzzz!! Please Help!

[happyfemme]

hindi pala updated ang topic na ito :-(

My son who is 7months now is confirm with G6PD deficiency, anybody knows about this kind of disorder?, is it Fatal? Serious?

Hayzzz!! Please Help!

Hi sis, i read your post. Nope hindi naman siya fatal, as long as you know ang mga bawal na food at medicine kay baby.

Maganda sis if you read (marami sa internet) about the deficiency, mga bawal, things na dapat gawin, ang symptoms kung inaatake na si baby.

My child is three years old na, and he is doing well.

I put sa ref namin ang list ng mga bawal kay baby. Para malaman ng mga tao sa bahay.

Its only me, his dad and yaya ang allowed mag pakain kay baby kasi kami ang may alam ng bawal kay baby. Ayoko naman i-asa sa lolo at lola kasi malabo na mata, one time pinakain ang baby ko ng lola niya ng cake, hindi niya alam na may nuts. Buti hindi like ng baby ko yung taste ng cake kaya he spit it out. Form then on i decided na kami lang tatlo ang allowed magpakain kay baby.

Pag nasa resto naman kami, lagi ko tinitikman muna ang food ni baby bago ibigay sa kanya.

Pansin ko lang, ang G6PD parang may levels. May babies na sensitive talaga sa bawal, mayroon naman na kumakain pakonti-konti. Yung baby ko kasi sis nakakakain ng food na may toyo.

Ang hindi ko pa napapakain sa kanya is taho, and nuts. Natatakot din ako baka may mangyari sa kanya.

If may questions ka sis, post ka lang. 

[sleepless]

^ Thank You so much Sis!

Reference Value for a 6 above months baby is 10
but my son only has 1.44

I think bawal lahat ang bawal kay baby

takot lang ako sis pag lumaki na and mag babarkada 

[happyfemme]

Don't stress too much on the future sis. Your child will be ok.

Gradually I always explain kay baby Kung anong bawal sa kanya.

Are you familiar with bag tags? I put my child's name on it then nakalagay na G6PD patient siya, now that he is in daycare school I attach all the "bawal" kay baby, his medical records and everything.

Just always make sure that your child is taking vitamins, para protection from flu and viruses. Then he will be a happy and healthy baby.

[docs]

don't worry too much mga mommies. may niece ako na G6PD deficiency din. noong una worried kami then inaavoid lang mga bawal. she is now turning 5 yrs old and normal lang lahat sa kanya.

sa food yung may konting toyo like pancit and even bistek napapakain namin sa kanya without any problems. nong baby naman sya nagcerelac din sya and ok lang din naman.

if ever nagkakasakit alam na naman ng pedia nya ang condition nya so yung mga gamot safe sa case nya.

[mich0829]

hi everyone! My 4 y.0 daughter is also a G6pd patient. During her early years we really avoided mga foods na bawal,. then unti unti tina try namin pakain sakanya yung ibang nasa list.. like toyo (adobo), peanuts, kakanin with blue food color etc.  hanggang sa halos lahat na ata maliban sa taho, other soya products and some legumes natikman na ng daughter ko. So far healthy and happy baby naman siya. Minsan halos nakakalimutan na namin na me mga bawal nga pala sakanya na food .. Although medyo cautious kame pag dating sa mga medicines.

However, sa episode ng salamat dok last sept 14, topic was about G6pd. although hinde ko naman napanood lahat and unfortunately hinde ko makita link ng episode sa you tube. na discuss nila dun na they cant take paracetamol & vit C. it got me worried kasi ive been giving my daughter ceelin since baby pa sha and tempra paracetamol everytime she has fever. Both meds were actually prescribed by her pedia. Medyo scared lang ako kasi baka me future effect eto sa daughter ko .. Again naging conscious bigla ako sa mga food intakes niya at napapa search ulit ako ng mga articles re: g6pd and I saw this thread.

@happyfemme, you mentioned that your son is already 3 yo. Ano binibigay mo saknya na vitamins ? my daughter also has allergic rhinitis. kaya madalas me sipon sha.. That's why she needs her vitamin C for protection nga. How about if he has fever? ano po give nyo sa baby nyo ? Sorry dami ko questions.

thanks in advance .

[daveigh]

^ actually sis napanood ko din yan. For me, parang OA yung doctor. kasi sabi naman ng pedia ko kelangan controlled lang ang dosage.

Naka-vitamin C ang baby ko since 1 month sya and G6PD positive sya, as in low level ha. Pero ok naman sya. I also gave him tempra nung nilagnat sya sa paglabas ng ipin nya.

Basta everytime I administer a medicine kay baby, ask ko muna si Pedia & remind him that he has G6PD. Technically fava & monggo lang ang bawal, hindi naman lahat ng nuts.

[mich0829]

thank you sis @daveigh medyo nagpanic kasi talaga ko ng mapanuod ko that episode. Sabe pag me fever punasan na lang daw  kasi nga paracetamol is bawal. kaya nga ask ko kayo kung ano gawa nyo sa mga babies nyo sa mga instances na ganyan.

thanks again. God Bless.

[theshopaholicprincess]

^^ naku same with my baby. Yung meds na iniinom nya for his fever is Tempra and napainom din namin sya ng vitamin C na supplement pero lahat naman yun may go signal sa pedia namin at yung pedia din namin nagbigay ng sample.

Sa mga mommies na may G6PD yung kids, ano yung foods na pinapakain nyo sa mga baby nyo while nag sstart pa lang sya sa solids? Mine kasi ayaw nya mag cerelac kaya di namin pinilit. Medyo kokonti yung list of foods na pwede sa kanya kasi tinitingan ko yung list ng mga ok na fruits and veggies.

Yung napapakain ko palang sa kanya eh lugaw, potatoes (mashed), kamote, bananas and biscuits.

[daveigh]

^ I was able to feed my baby anything. Sabay na namin sya sa ulam, except pag adobo (toyo has soya) at munggo.

[theshopaholicprincess]

^ thanks sis. yun pa pala isang bawal sa kanya yung munggo. Plan ko pa naman noon turuan na kumain ng munggo baby ko pero hindi pala pwede sa kanya yun.