newborn screening

supahfasyon

hi! i'd just like to know if any of you has a child who was diagnosed with one of the dreaded diseases that's being screened by the newborn screening?

when i gave birth last august, the nursery in the hospital called me a week after and told me that my son was found to have CAH or congenital adrenal hyperplasia and recommended us to seek a specialist for this. when we found one, the doctor asked us to have our son go through a repeat screening so that we can confirm if he is really positive for CAH.

so far, my son is already 9 months old and hasn't shown any of the symptoms. also, the nursery hasn't contacted us again re: his new results. my parents are telling me that maybe my son got cleared the 2nd time and that i should just forget about it.

at the back of mind, i'm scared that the symptoms might appear again one of these days. i'd just like to know if there's anyone of you who's had a similar experience and if so, what did you do?

thanks!

tina11

I haven't gone through a similar experience but I sympathize. You must be going out of your mind with worry.

How long ago did you do the new tests? I agree with your parents that the results were probably positive and that's why they haven't contacted you. However, it would be better to call the hospital or lab where the tests were conducted, just to make sure that everything's ok... on the very slim chance that they're not *knock on wood* you can start treatment immediately.

Praying for you and your son :(

Kait

my daughter diagnosed with G6PD on her 2nd screening..but her first screening is negative..i dnt know which is correct :(

DaNa8

^^^
I believe there's also one mommy here who has a child with the same condition, just can't remember her nick. You can try and look for the thread she created about G6PD.

cuch

probably a false positive/negative result, the blood sample you submitted got contaminated along the way.

supahfasyon

hi tina11 & cuch,

i finally mustered enough courage to check with the hospital again last saturday and it turns out that my son had a "false negative" result. this usually happens to premature babies daw. the confirmatory test kasi showed he has normal levels na in all of the 5 dreaded diseases being screened. we are just so grateful to God for this. thanks also for your support.

to kait,

hugs to you. i can totally relate to your situation. may i suggest that you go in for a confirmatory testing? as in submit your daughter to another screening? also, i suggest that you consult a specialist so that your daughter can be diagnosed properly and be given proper attention should she be needing it talaga. the screening is really here to prevent the onset of these diseases diba, so it'll be for your daughter's interest that you seek immediate medical attention as soon as possible. will pray for you and your daughter.

thanks!

~ LAdyZaCk~

DaNa8 wrote:

^^^
I believe there's also one mommy here who has a child with the same condition, just can't remember her nick. You can try and look for the thread she created about G6PD.

did i hear someone's calling me??

seriously, i was the one who started a thread about G6PD.
nothing unusual naman about my baby, he is 1year and 1month old already.
i already have it confirmed with Up national institute of health about the
G6PD on his newborn screening. he is positive, but nothing to worry about since it's just that he had a lot of foods that should not be taken like soya and any food with it's content. also, legumes and beans. it's like more of an allergy. kelangan lang talagang iwasan silang pakainin ng ganito. or else, it may trigger their G6PD. pati sa infant milk, NAN HA lang talaga since birth ang recommended for him. after he turned 1 year old, i switched to LACTUM para maiba naman, pero to my surprise, andaming lumabas na rashes all over his body. binalik ko ulit sa NAN HA.

to the thread starter, i suggest to have your baby confirmed. meron sa UP National Institute of Health. You may ask for their schedule of confirmation. Di kc araw araw eh. Mas mabuti na yun, at least malalaman mo kung anong bawal.. remember : prevention is a form of cure. you may call this no. just in case you want to ask for it : 522-4396.

nga pala on the 23rd merong G6PD seminar ang NIH. they send me a letter. nagpa-reserve na rin ako. for those who are interested, you may also call the above no. baka meron pang slot. limited kc yung attendees as per their letter to me. yun lang po.

~ LAdyZaCk~

double post

~ LAdyZaCk~

Kait wrote:

my daughter diagnosed with G6PD on her 2nd screening..but her first screening is negative..i dnt know which is correct :(

hi kait!

anong milk ng baby mo?

mytitagirl

newborn screening is great. hindi pala lahat babies nakakapa-screen kasi separate bayad ito at only upon a signed consent form gagawain ng hospital. ako kasi family friend ang nurse ko sa delivery room kaya nagawa kaagad, pero marami pala bata na hindi ito na-undergo. either hindi nila alam, like yung cousin ko na over a year old na ang daughter niya na ma-diagnose meron congenital disease. pero yung ninong ng anak ko, naikuwento ko at nang manganak misis niya nagpa-newborn screening, ayun 6 pages of allergies ang nakalista, pero medyo na-outgrow na daw ang ibang food no-nos.

avonlea

standard sa hospital namin... 5 days after i gave birth, the hospital called my husband and asked us to have a retest because my son's TSH and T4 are not normal... so punta kami ng hospital and had a retest done... okay na naman yung results... i agree that newborn screening is great, para kung may problema eh masolusyunan agad...

purpleheadd07

i made sure Xan had it, napanood ko lang sa tv about it. medyo kakaawa nga ang bebi kse ipi-***** ( prik ) sa talampakan nya. around P760 yung binayaran ko though yung sabi eh 500 lang pla dapat, pero kanya-kanya na ata ang patong sa mga hosp. ok na din at lesat normal nman yun results, medyo kampante ka that you kid will not have any scary illness.

fatbig

I thought that yung newborn screening is standard operating procedure sa lahat ng hospitals dito sa Pinas hindi pala according to mytitagirl. In that case, I will make sure my baby gets one as soon as he is born

DaNa8

The hospital asked me if I want my baby to get the newborn screening test. I guess di talaga sya standard. Malas lang kung di nainform ng hospital yung parents na may ganung test at di rin alam ng parents.

supahfasyon

supahfasyon wrote:

hi tina11 & cuch,

i finally mustered enough courage to check with the hospital again last saturday and it turns out that my son had a "false negative" result.

sorry i meant "false positive" result. it was during the 2nd nbs test that my son was cleared showing normal levels in all diseases being screened. apparently, there were a lot of cases like this that came up august last year according to one of the pedias we consulted.