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Babies/kids with G6PD Deficiency?

Discussion in 'Year 2013 Mums' started by Cozel, Jan 28, 2014.

  1. Cozel

    Cozel New Member

    Hi mommies!

    I was surfing the internet for more info (has always been doing so) & chanced upon this forum! My little girl just turned 1 yr old this month & is g6pd deficient. Makes me keep wondering how come she is g6pd deficient when my hubby (he said he did test during NS so should be clear) & I (I had no idea I may be a carrier, my parents didn't even know what g6pd was too before my little girl popped) don't have it... So I guess I must be a carrier. I have a couple of issues to share/seek your opinions on actually. In fact, I know people with g6pd deficiency can still lead normal lives (thankful she is all healthy & normal otherwise) but I can't help but feel stressed (esp over food restrictions) and yes, upset too, like I brought it upon her. Initially, when the pd came to inform me, I blamed myself hard.

    Anyway, I'm breastfeeding still, so I am avoiding many foods in fear of affecting her. The 'lucky' thing so far is, she is diagnosed with supposedly mild deficiency, but also makes me also wonder if that means it would be even harder to know if any foods/drugs did affect her in any way? And that people around me might take this even more for granted?

    1) I understand that mothballs and fava beans are a big no no. But what abt the rest? I got a pamphlet (from my pd) under HPB which is quite general stating that certain beans, nuts and Chinese medications are to be avoided too. But what/which? Not mentioned. So I'm really clueless & unsure as to which foods are entirely safe or not. From what I read online (sites like http://g6pddeficiency.org/wp/living...-deficiency-foods-to-avoid-list/#.UuazJHjXfCR), it seems a huge long list (due to soy which is so commonly found in many foods). Does any mommies have a more detailed list from doctors/pds/hospitals? Also, what are your opinions on soy-related foods e.g. soy sauce, beancurd etc? Safe/unsafe to consume?

    2) I have been told (by pd) that I should be a carrier, hence my baby girl got it from me. But when I do research abt this "inheritance thingy" online, it seems that carrier also means "partially deficient", unlike the usual common understanding by most people that carriers are not affected at all (otherwise pd would have told me to avoid too). Here is a link to share: http://www.rddiagnostics.com/g6pd_faq.htm#11. Not only this site, I read alot of sites saying the same thing. So I am actually hoping now that I am also "partially deficient" & mild case like hers so it would mean I don't exactly have too much to worry abt since I ate so much of the contradicted foods/drugs already...

    3) In relation to issue 2), do you know where we can test for g6pd deficiency & the quantitative test? Is it only in hospitals? & does anyone know what is the cost like?

    4) Just wondering, is there any g6pd specialists out there in sg?

    5) Formula milk - I am intending to feed my little girl fm now that she has turned 1 yr old... But I realized that most (or all?) formulas have soy in them. Another would be Vitamin K1, which I found in this list: http://g6pddeficiency.org/wp/living-with-g6pd-deficiency/drugs-to-avoid-list/#.Uua2XXjXfCR, which is of low risk.
    Are there formulas without soy in them? & what do you mommies recommend/give to your babies/toddlers? My pd recommended S-26 Gold & Pediasure because she is a little on the smaller side. & then I noticed Pediasure has "Colour" under its ingredients and so it makes me wonder if it's any artificial coloring which is again, to be avoided. I really don't wish to be feeding my girl something daily for a long period of time which affects her in any way (causes hemolysis).

    6) What do you think about the long term hemolysis that is said to be harmful to health in the long run? What I read was, even though if it looks like normal on the outside, but eating contradicted foods can still cause hemolysis and may not be serious enough to show symptoms... Here's a link to share: http://g6pddeficiency.org/wp/g6pd-deficiency-home/hemolytic-anemia/#.Uua5TXjXfCQ. & I somehow also have this impression that most pds/doctors will dismiss this low level hemolysis thingy because 'nothing' really happened.

    I may sound super kiasi to some of you but I'm just a concerned mommy who really just wants to play it safe since now I'm breastfeeding so I have that strong responsibility feeling to be careful enough not to be 'feeding' her with any contraindicated foods...

    Would love to hear any advice/opinions/comments to share from other mommies... Thanks in advance! & was thinking whether we might want to have a group where we could gather all mommies with g6pd deficient babies/kins to share info/ask questions with each other? I realized there isn't much info/support on g6pd...
     


  2. Coralroseallen

    Coralroseallen New Member

    Hi,
    I am not in Singapore but Australia so I joined this site just so I could reply to you.
    I feel very alone in my G6PDD journey, I do not know anyone with the defiency personally & my doctors all seem to be quite nonchalant about the problem. I think it is a lack of knowledge in the general issue.
    My son was diagnosed at birth- & only because he was very ill at birth & had to be taken to a specialist hospital
    In the city where the tests are routine.
    The overload of general information is exhausting, because it has this list of maybes!!
    I have pushed & pushed & now have a little understanding of the deficeny.
    Basically you have 2 X's as a woman. You partner as a man has one. By random you gave your daughter the X with the defiency- your partners X is fine. You are both affected & a carrier- as your daughter will be for her children.
    In my case my son only gets his X from me so he had a 50/50 chance & because its his only X he is completely deficient- your GP can test you for this as mine did for me- its a simple blood test.
    My son is higher risk from all these triggers, while we have some protection because we have a healthy back up X.
    At random we could become Ill from a trigger. You and myself also are lucky to have gone through life eating & being exposed to these triggers-
    However, when I look back my life has had a lot of low energy periods. That is a mild effect from the triggers-
    Now, this is something I'm totally guilt ridden & confused about also- I have given my son; products that contain soy in a form- everything has soy!! I have also given him peas/beans- & for the first few months he was on formula that contained soy! I have brought this up with numerous doctors & they don't think soy is a problem.
    But to be safe he now is on a formula called Karicare aptimal allerpro- it is for soy allergy babies & cows milk allergy babies-
    But he's also been exposed to- blue food dye, paracetamol, ascorbic acid, etc,
    We have not been hospitalized, no transfusion, no side effects that I've noticed.
    The big question! Am I slowly damaging him & myself by exposing us to these low risk triggers- will my liver fail, will We have hypertension diabetes in the future??
    I don't no, & it scares me, my doctors say no, but I emailed the site owner of the website above and he disagrees, is he right because he loves with it? Are the medical professionals wrong-
    Maybe they are not concerned because these things have no immediate death threat!
    If you can do it-
    Give your baby girl homemade everything- make
    Ur breads without soya flour, no soy sauce- blackbean sauce nothing, avoid everything! It's really difficult, especially with others interfering.
    Get your self tested & see where you stand on the scale of "protection" if you are the same as your daughter (half) which unless both your parents are G6PD deficient, you will be. Use that as a good monitor. Did u get ill as child a lot?
    Also find positives in this- you can be so healthy with only giving her & yourself homemade foods- & you both are immune to malaria.
    I'm sorry if this is a big ramble but I was basically googling the deficiency & found this. I'm also on my phone so sorry about the grammar- if u would like to talk more let me
    Know and I can give u my
    Email .
    Coral.
     
  3. Cozel

    Cozel New Member

    Hi Coral,

    Great to see your reply! First of all, a big "Thank You" for even making the effort to register & reply to my thread... & of course, share all these info!

    Yes, I do feel 'alone' too (since my immediate family & friends all do not seem to have this deficiency hence know too much about it). & it's quite tiring especially even when my husband also has the "It should be fine." mentality telling me not to be over stressed/paranoid with restricting myself on SO MANY foods, like I am the only one who is making such a big hoo-hah over this g6pd deficiency. But eventually (now) he does try to respect my wishes & makes it a point to help check with the restaurants outside whether the foods I intend to eat contains the main trigger ingredients e.g. nuts, beans etc (simply because I am still breastfeeding) I really have no idea if I am reading too much, but I only know as a mother, I only want to play safe for my little girl, & since it is no big deal not eating those stuffs, I will try my best to, wherever possible. But it is really hard especially in Asian countries, because SOY is almost available/in many, many foods. In Chinese foods, soy sauce is heavily used & it is extremely hard to avoid. Even many supermarket products, eg chocolates, milo etc, they all contain soy (somehow or rather, most commonly as soy lecithin), so I am basically avoiding many, many foods, so to speak. But I have also taken foods with soy, somehow or rather, eg milo during my confinement period, certain Chinese dishes in restaurants, as it is also only a little later I started to be MORE careful & avoid even soy as I did more research (sadly, only online since doctors weren't able to give me much info). & yes, I do feel they seem to be more nonchalant since there is no immediate death threat/major symptoms.

    I believe in Australia, g6pd deficiency should be less common as compared to Singapore? I can imagine how 'alone' you're feeling but I wish for nothing but the best for you & your son. Stay strong & positive too, mommy, & perhaps, try not to worry too much over what has already been given to him (I know it can be hard).

    & yes, I intend to get myself tested soon to find out how 'affected' I am (I truly believe I am a carrier (partially deficient) & I hope I am on the same 'scale' as her). I don't really remember myself having jaundice (turning yellow) perhaps because I never ever noticed/bothered, but I do remember I am always giddy & feeling faint at times when I was younger, but now that I think back, I (& my mum) always blame it on low blood pressure, & I don't recall eating any so called main trigger foods. I've always pretty much loved soy foods eg soybean drink, beancurd etc & I seem fine taking all those. So, it's really a huge big question if it ends up I am partially deficient too. & I may reconsider the intake of the trigger foods too just to be more healthy, I hope? But it also means, it "should not be too serious" if she takes those trigger foods too, & I'll have to slowly introduce certain ingredients when she is slighter older. At least, that's what the general public thinks. & honestly, it is extremely hard to convince people that taking in the list of trigger foods may mean doing harm to our health in overall long run, especially since we (my husband) also have friends (& they are males) who are g6pd deficient & are only known to avoid certain beans, mothballs, certain drugs (advised us that we must tell doc about the deficiency), but not soy. Soy is never an issue for them (they were never instructed to avoid soy). & older people eg my mother-in-law may not be able to read the list of ingredients all the time since they do not know too much about this deficiency & all along babies/kids have pretty much been fed 'everything' during our older generation's time (g6pd wasn't that 'known' too I believe). So perhaps even if they do have g6pd deficiency, they may not be aware & have been eating everything so far, without not too big a problem. Not only the older generation, it seems in general, the younger generation (like me), also do not seem to feel it's too much of a problem (g6pd deficiency) & many also advises/shares that soy is fine.

    I will try to research more on the formula milk to give my little girl (I still feel somewhat skeptical giving soy based formula milk) before I actually start her on any. But if I am tested partially deficient too, it would be even harder to convince people (including my husband & family) that it is unsafe for my baby girl to take any soy based formula milk (& foods), because I myself have been fed with it, & see, I am all fine (so far, thankfully). They probably would have the same attitude as my husband, claiming I have been eating the trigger foods so far & I have not had any big issues. So I'd have to say, it'll be hard too later when she starts eating more solids, because there are so much food out there that contains soy (& maybe other trigger ingredients), & I'll probably be questioned a lot of times why I'm depriving her of so many common (& seemingly no harm) foods. & I can't expect eg her grandmother to be asking the hawker stall whether they contain ANY trigger ingredients (which is a long list eg nuts, beans, soy etc). But we'll see about that as we go (trying to take things at a step)...

    Once again, thanks & pardon me for all my rambling too. :)

    It'll be cool if we can share info with one another & give support to each other so if you don't mind, you can share with me your email & we can keep in touch anytime.

    Cheers.
     
  4. hi everyone
     
  5. what is G6PD
     
  6. 9nehak

    9nehak New Member

    Dear Coral and Cozel, thank you for your informative post on G6PD. My son is deficient too and he is 100% deficient since he has only one X. Like Coral pointed out, we have a spare X, but our sons have only one X.

    When I was told about this deficiency I also felt very 'alone' and blamed myself for harming my child.

    I contacted a few paed in my home country, India. They told me not to worry at all. These tests are not even done in India, so we are lucky we could detect it so early. They told me to not avoid any food other than Fava beans (which is anyways found only in mediterranean food). I have been told to only be careful about medicines he takes and napthalene balls.

    My son is a healthy 10 month old right now and I have been breast feeding him along with formula too. I give him Nan Pro 2 which I believe has Soy. I have also eaten a lot of soy but not seen him be uncomfortable due to that. So I dont think Soy causes any problems.

    Dont stress over it :) Our babies are healthy. Its like being born with a 6th finger. Its not normal but definitely not something to be worried about :)

    But yes, we have to be careful all our lives... Would be good if you can recommend a specialist in Singapore.

    Take care.
     
  7. morningstarz

    morningstarz Member

    Hi Cozel,

    I think our kids are about the same age? My son turned 1 on 27 Jan 2014. He is also g6pd deficient. Like the other 2 mummies with sons, our sons got the deficiency from us. I was very very upset when he was diagnosed cos I was the carrier and "gave" him the x chromosome. Initially, I blamed my self a lot. No one in my family has this genetic disorder and I have traced it back 3 generations on both side of my families. This is my 1st child so I was very traumatised and depressed when KK kept him hospitalised to monitor his jaundice level for 2 weeks. It didnt help that my mil questioned my family's health history when she found out bb's condition.

    1. I have given my son soy. Isomil to be precise and he has to issues with it. I have not avoided soy with him in daily care for him. The main things I avoid are fava beans, moth balls and medication. I have also taken fava beans (accidentally) when I was breastfeeding and he is fine. Doctors said to avoid all chinese medicine but I have taken them while breastfeeding and he is fine too. The main chinese medicine to avoid is pearl powder (but I know of a g6pd girl baby who had no issues with this), huang lian and a few others which I cant remember off hand now. Some of these are not allowed in Singapore.

    2. I'm not sure how she is a mild case for g6pd deficiency. G6pd is a genetic disorder. If your hubby is not g6pd deficient, then your girl should be a carrier as a worse case scenario as she would have gotten your g6pd x gene and your hub's healthy x gene. I am a carrier (by genetic deducing since my son is g6pd deficient) but I didn't know it all my life and have eaten all the g6pd no-nos on the list. The first symptom of g6pd trigger is tiredness and then jaundice. But due to our crappy eating habits and lifestyle, it is very hard to conclude that we had a g6pd mild trigger cos of the no-nos food items.

    3. A blood test will be able to diagnose this. I wanted to do it at first but decided that it was pointless as my son's condition is already determined and no point making myself more depressed. And if we have another son, he is a 50-50 chance of g6pd. If we have a girl, her worse csee scenario will be a g6pd carrier. I decided to conserve my energy to look after my son instead.

    4. Not that I know of. G6pd is considered the most common genetic disorder in the world. In fact after my son was diagnosed, I found out quite a number of people around us are g6pf deficient.

    5. I feed my son isomil. He has no problems. The main things to avoid for g6pd like mentioned are fava beans, mothballs, sulphate medications and chinese herbs. To be honest, I think different people have different threshold and you will need to test it. I know this sounds very strange. Pls dont get me wrong. I love and care for my son deeply. In fact, he is on a 90% organic diet. I'm not undermining his condition but I know of g6pd kids who have taken fava beans by accident and pearl powder regularly. We need to deal with the condition all their lives and teach them to deal with it too. it is important that we learn to deal with it so that we are able to teach them to deal with it.

    I think it is easier to diagnoise "hemolysis" in babies and toddlers than in adults. My son has food allergies and other allergic issues so we have to be very careful what we feed him and expose him to. He has had several hives/urticaria attacks since birth.

    Pm me if you want to chat on whatsapp. We can be a support to each other!
     
  8. cherboomgray

    cherboomgray New Member

    Good day, everyone. Currently, me and my co-researchers are looking for loopholes about G6PD deficiency among children or even adults. Our adviser told us if we can get information about incidence of mismedication, since we might not know if there are some med components that may harm G6PD deficient individuals. Maybe through this study we could help emphasize the need of putting a label stating "contraindicated for g6pd deficient individuals" on the med pamphlets. And that we may help prevent such alarming situations esp. to the parents and patients, as well.
     
  9. jadebunny

    jadebunny New Member

    Hi,

    I just gave birth on 29 May this year. My son has G6PDD too. And I am feeling 'alone' too. I have been googling more information and they are the same links as Cozel has posted. Now my questions are same with Cozel.

    As I am doing confinement now, in taking all those Chinese tonic, I dare not breastfeed my son till next month. Now he is on formula - Enfalac. Not sure if this formula is okay for him.
     
  10. morningstarz

    morningstarz Member

    congrats jadebunny. my son took Enfalac while in hospital. so we continued w that as a supplement to bm when I didnt have enough in the 1st month. so should be quite safe
     
  11. jadebunny

    jadebunny New Member

    Thanks for the reply, morningstarz. :) I am on low supply of bm too, only express to ease engorgement. Hopefully second month will be better.

    Dear all, I have more questions:

    - Anyone knows what will be the reaction if accidentally taken those foods that should be avoided.
    - Any PD to recommend in the west? Baby's current PD is Dr Keoy & Novena Medical Centre.

    Thanks!
     
  12. Cozel

    Cozel New Member

    Hi all!

    Thanks for all the sharing! Yes, and we can all 'support'
    one another, so we don't feel too 'alone' in this.

    --- Coral,
    I actually did do a test (like, finally! In sg, they don't really want to do the test for adults at all. We kind of pestered our gynae that we want to do it and he agreed in the end ).

    And..... I also am deficient! Actually, I'm more relieved to know that I have it. So I'm 'together' with my girl and like you mentioned, I can really use it as a gauge. The next question I have would probably be how severe I am?

    I am not sure if the regular doctors can interpret my result for me because many don't even want to do the testing in the first place. But after some research, I concluded myself that I should belong to the mild case too, since I think I am a carrier (& like the site says, I think carriers mean being mild case of deficiency).

    --- morningstarZ,
    Yes, our kids are almost the same age! My girl turned one 14jan 2014. So only slightly older. :)

    1. I am currently still breastfeeding (since I'm a SAHM & she loves from the tap) so I haven't touched on any formula yet. But previously when I checked on the ingredients, yup, most have soy in them some way or another. I did ask my pd if she might be aware about intake of soy causing any problem but she mentioned not that she know of. But I think as a parent, I would be more careful compared to the pds because I think it may be true when they dismiss this case more as long as they don't get a severe attack.

    So whenever I have medicine from my pd, I'll check on my part the medicine if it's safe to take and make it a point to remind my pd.

    But I'm thinking later on when I stop bf, I might shift her to drink cows fresh milk instead of formula. Since I'm intending to stop around 2year of age, which I think she might not really require formula.

    Just to share, I took s-26 when I was young & I don't think there is big problems my mum faced though.

    2. Now that I know I am deficient, it might just mean my mom is too, or otherwise my dad. But they have both been eating without restrictions. Soy, nuts and all. I used to take all these too until I had my girl.

    Actually, I am not very sure if carrier means to be mildly deficient, which is why perhaps despite we take in some no-nos, we seem ok? I'm thinking maybe the symptoms are just not obvious at all (since eg tiredness is very hard to conclude that it's due to our food) and that I'm on mild case, so the impact is not big at all. Unless we get hospitalized or really turn yellow, that would most probably be too serious by then to really see any symptoms.

    Now that I know I am deficient too, I'll think about what I eat in future. But I'm more concerned for now because I'm breastfeeding so I avoid any possible foods on the list actually. My plan is when she is bigger, I may let her try certain nuts, beans and soy I guess. Since soy is very, very hard to avoid.

    3. Did the test... Now am wondering if any one can help me interpret the results? Concluded I am mild case by myself due to research online.
     
  13. Cozel

    Cozel New Member

    Cherboomgray,

    That sounds great. But so far I don't think I have had any misincidence (serious enough) to share, and I hope I won't have any too! :)

    Congrats jade bunny!!!
    My girl also took enfa whilst in hospital, so should be fine.

    - The mild symptoms can be fatigue, shortness of breath, giddyness, headache... But otherwise may have no obvious symptoms too...
    But all these I also researched online. Anyway, here is a link to share, just google and normally there will be many results. But you'll have to decide how much you want to believe/factor.

    http://www.nhlbi.nih.gov/health//dci/Diseases/ha/ha_signsandsymptoms.html

    More severe and obvious will be jaundice.

    - sorry, but I stay in northeast so I don't know any from the west to recommend too. My current pd is from Kidslink sengkang compassvale, Vanessa. But usually I don't 'consult' her much on g6pd. She usually gives more generic and practical answers too, which I believe most people too. She shared before fava beans, Chinese herbs (just avoid all) and mothballs. Big no nos. Then medications which you have to be careful of. That's about it.

    My pd used to be Dr Koey too!! But personally my hubby and I don't really like him (oops) so we switched and also his clinic location is pretty inconvenient for us.

    I think I remember he also advised unless you eat ALOT of the no foods, otherwise should be fine (not sure and can't remember if he meant it for my girls condition since she is considered mild).
     
  14. Cozel

    Cozel New Member

    But yes, I do agree life still goes on (in that sense) and we just have to be more careful.

    But I am the kiasu type so at this stage I am avoiding as much as possible because I breastfeed. I might introduce her to certain common foods like nuts, beans and soy (heavily available everywhere) when she is bigger.

    All mommies Jia you ok!!

    P.s: I also used to take a lot of peanuts and soy before I turned a mom. And nothing really serious happened to me (I hope internally too).

    But for males, they are g6pd deficient (not mild) so perhaps mommies will have to be even more careful.
    To share, we have a few friends (male) who are g6pd deficient and they shared they don't take peas, anyhow take medication, fava beans, Chinese herbs... And mothballs they avoid. Other than that they eat pretty normally. A friend also takes wine (known to know sulphites)... But I think like you guys shared, each individual has different reactions to certain foods.

    Cheers and let's keep supporting each other! :)
     
  15. jadebunny

    jadebunny New Member

    Hi all,

    I am so grateful for this thread. We have each other to comfort and share information too. Thanks for the link Cozel!

    Dr Keoy's clinic just called and the result for G6PD quantitation was 1.1. While I was still in hospital another PD suggest I let my boy do the metabolic screening since he is G6PDD, the test results are normal.

    When I ask if I need to review all these results with Dr Keoy, the clinic assistance said no need.

    I am feeling so lost! Beside googling for more information, I wish there is a pd who can explain more about it. I need assurance. I take peanut butter spread on bread every morning, and I ldrink soy bean milk (almost everyday in 2nd & 3rd trim) during pregnancy too..

    I do noticed my boy likes to drink his milk very fast then end up he seems to have shortness of breathe. He got to stop sucking the milk, breathe for a while then continue sucking the milk. Most of the time, end up he is so gassy! Burped him 3 times each feed to bring out the gas.

    Cheers on! Jiayou all mummies!
     
  16. Cozel

    Cozel New Member

    Hi jadebunny,

    Hmm... Sorry but I'm not really familiar with metabolic test? What is it tested for?

    Anyway I just brought my girl to clinic today for her routine jab and I asked the doctor to interpret her g6pd quantitative result but she told me as parents, we do not need to know whether it's mild or not, as in, deficient means deficient regardless and so avoid whatever needs to be avoid. (Bummer... I actually wanted to know how severe her condition is just for my own reference, not to 'play' with testing of no-no foods for her... Maybe the pd thought we would give her those foods if she interpreted mild for us. Duh...)

    I do wish there is specialist on this too that I can ask more in details...
     
  17. jadebunny

    jadebunny New Member

    I am not too sure too. I was given a brochure but didn't look into details until the PD in the hospital recommend us to let baby do the screening since he is G6PDD, together with hearing test. We paid for the screenings! And now the result is back but no one is here to review with me. :(
     
  18. jadebunny

    jadebunny New Member

    Went to see PD at CCK. The metabolic test tested for are
    - Amino acid profile
    - Acylcarnitine profile

    Doctor didn't mention if the test will relate to G6PDD, only say don't worry so much about G6PDD, as long as we avoid the triggers like Fava Beans, mothballs.. Etc.

    I think both me & hubs have come to acceptance that our son has G6PDD, and hope he will be okay. Let's us all be positive.

    Doctor also say soy in formula is okay for baby, even vitamin K (the amount is not much to trigger).
     
  19. wend

    wend Member

    Hi mummies! Glad to have found this thread, and though I'm usually a silent reader on forum, decided to join in here as I can totally relate to how u are feeling.

    My son is abt 2.5 mths and was also diagnosed with g6pd at birth. When we first heard of it, we were like "what's that man?!?!" Googled it and there were many conflicting info. The pamphlet given by the hospital is very vague.

    ImageUploadedByForum1404196800.191847.jpg

    I guess it's similar to what u all have too. We did our own research and have compiled a list of commonly mentioned food/Chinese herbs/medication to avoid, which we store in our hp for quick access. Here it is if you are interested:

    G6PD deficiency to avoid:

    * Food / Household stuff *
    - Mothballs / Camphor
    - Fava beans / broad beans / Bian dou / kacang parang
    - San Zhi Zi 栀 子/ Gardenia Fruit or pod / Fructus Gardeniae / Cape jasmine fruit


    * Medicine and Herbs *
    Antipyretics (treating fever):
    - Aspirin (acetylsalicylic acid)
    - Phenacetin (acetophenetidin)
    - Acetanilid
    - Antipyrine
    - Aminopyrine

    Antibiotics (treating infection):
    - Nitrofurantoin (Furadantin)
    - Furazolidone
    - Nitro furazone
    - Sulfisoxazole (Gantrisin)
    - Sulphamethoxazole (Bactrim)
    - Sulphamethoxy pyridine
    - Sulphanilamide

    Antimalarials (preventing malaria):
    - Primaquine
    - Pamaquine
    - Pentaquine
    - Quinine
    - Chloroquine

    Others:
    - Nalidixic acid
    - Phenylhydrazine
    - Probenecid
    - Vitamin K3
    - Rhizome coptidis
    - Cortex phellodendri

    Chinese Herbs:

    1) 黄连/川连; Huang Lian / HuangLian / Chuan Lian; Rhizoma Coptidis; Coptis Root / Golden Thread / Fructus Toosenden / Sichuan chinaberry

    2) 牛黄; Niu Huang / NiuHuang; Calculus Bovis; Bezoar / Cattle Gallstone Bezoar (Bos Taurus Domesticus)

    3) 金银花; Jin Yin Hua / JinYinHua; Flos Lonicerae; Honeysuckle Flower /
    Lonicera Japonica

    4) 腊梅花; La Mei Hua / LaMeiHua; Flos Chimonanthi Praecocis (Chimonanthus Praecox) Wintersweet Flower

    5) 珍珠末; Zhen Zhu / ZhenZhu; Margarita; 100% Pearl Powder

    6) 熊胆; Xiong Dan; XiongDan; Fel Ursi; Bear Gall



    > included the list given by the hospital.

    Asked around and found out that this is quite a common deficiency and couple of our friends and cousins have it, who seem to have led normal lives. Our PD also assured us that it's very common and nothing to worry abt, just to be sure to avoid above triggers and inform the doctor abt his condition each time he visits a clinic.

    Wanted to also find out abt how severe his condition is, but his PD says there's no % level, deficient means deficient.

    I'm also currently breastfeeding him, still taking my chocs, nuts, soy products. Just those in the list I will avoid. Had also fed him enfalac stage 1, 1st few weeks of his birth cos milk supply not established yet.

    Keen to follow this thread so we can help support one another and share our knowledge to keep our babies healthy!
     
    jadebunny likes this.
  20. jadebunny

    jadebunny New Member

    Hi wend, thank you for the informations. :)
     
  21. wend

    wend Member

    Wanna check if any mummies have used Vicks in the presence of your babies? Cos we noticed there's camphor in there, which some websites state to avoid cos it's also an ingredient in mothballs. When we asked our PD, she said camphor is mothball. But traditionally mothball was made up of naphthalene, which is the trigger. Only recent years mothballs are now made from camphor.

    So I'm confused if camphor is actually a trigger or not. It's present in quite a lot of products and alarmingly Vicks is one of it which is a very common household item. There's also Vicks for babies, but no camphor in it.

    What I'm afraid is when he go to school, other kids might be using it and would that trigger it?
     
  22. wend

    wend Member

    Btw not only Vicks, Tiger Balm also contains camphor. Seems like menthol related products are a no-no. These smells are also very strong. How to avoid? Esp in enclosed areas with strangers who might be using them?

    Mothballs are my worse fears! How would you know who has them in their cupboards? And next time when he's bigger, strangers or schoolmates if they do use it at home, their clothes might have the smell too. That will also trigger right?

    For his 1st mth party, we actually have to ask each and every guest who's coming if they uses mothball at home. For those who uses it, to wash the clothes they are planning to wear and not put bk in the cupboard. For close friends and family still ok right, but can't expect to do that each time.

    Haven't brought him to see his grandma cos she uses mothball at home and tend to use a lot of medicated oils that has a strong smell. Hai..
     
  23. sixeggs

    sixeggs Member

    Hi mommies,

    My boy is G6PD deficient also. He is a healthy and active 19mths old toddler. Just sharing some info that I was given by my PD.
    Basically, kids with this deficiency is lacking of a certain type of enzyme that protects the red blood cell. When they come into contact with certain food or moth balls, the red blood cells get destroyed and hence causing them to have jaundice and anemia.
    Nevertheless these kids can led a normal life like any other kids.

    I was told to avoid giving him chinese herbs or meds as the ingredients printed on these meds might not be accurate also.
    Even the common 如意油 that we always apply on babies.

    I was told that G6PD deficient babies have a natural immunity against Malaria and hence they do not need the jab while serving NS. (anyone can verify?)

    My boy has sensitive airway and eczema since birth and we have been feeding him Nan HA formula milk since he was 7 mths old. He has 3 episodes of bronchitis with the last one lasting for almost 3 weeks. It was mainly due to his sensitive airway and not the deficiency that he has. Lately, i started using essential oils on him as the meds were causing him to break into cold sweat and damaging his small liver and kidney. Just a word of caution to mommies using essential oils, please avoid peppermint as it can cause severe jaundice.
     
  24. wend

    wend Member

    Oops I have been using Ru Yi You on his tummy occasionally leh.

    For NS, heard they will automatically go to Pas-C. They will have another type of anti-malaria jab, from what I heard from my Guy friends. Damm.. Can't be commando le.. Sad! Haha!
     
  25. sixeggs

    sixeggs Member

    I only apply Baby Vicks on his chest when he has phlegmy cough. But i stopped doing that a couple of months ago.
     
  26. jadebunny

    jadebunny New Member

    Went to the polyclinic earlier, doctor say it's passed down from mummy ( to son ). He will pass down to his daughters (his sons will not get it).

    I am using 如意油 too. Anyone's babies have side effects so far?
     
  27. wend

    wend Member

    I use it occasionally. No side effects. Was told certain brands of 如意油 has different ingredients, best to check. The one I'm currently has menthol, my son seems fine though, but I dun use it regularly.
     
  28. jadebunny

    jadebunny New Member

    My concern was menthol too in the first place. My son seems fine too. :)
     
  29. mel_chf

    mel_chf Member

    Hi everyone, I'm in my mid 40s, mother to 2 girls 9years old and 14month old. I'm a G6PD positive since birth. Probably the more serious one, course I needed a blood transfusion right after born to save my life.
    My 2 girls are negative but I'm not sure if they are carriers.

    At age 20, a GP I saw strongly believe only male has G6PD and female is carrier. So he took my blood for test at some lab the result came back I'm a G6PD positive. How can KKH be wrong right?

    Anyway, my mother being illiterate obviously know nothing about it accept thinking I gotten jaundice at birth. During my growing years, I was not given any special attention like special diet because of G6PD and everything went OK.

    When young, I was often given Aspirin during fever. Amazingly, I didn't developed any allergic to it. BUT, when I'm in my 20s, I developed serious allergic towards Aspirin and most oral pain killers. Not sure if it's G6PD or just my body. Even excess monosodium courses a allergic to me with big swollen eyes. You get that often with outside food, therefore there are times that I develop a bad allergic even before I finished my meal. Panadol is ok if I stick to max of 2 tablet each time. However, many years back, I do read somewhere that the chances of a person with G6PD developing jaundice is many times higher than normal people so it's best (not avoid) to eat orange and yellow colour food example tomato, papaya etc moderately.

    Yes, I do carry the list of medicine, including my name, IC etc all the time in my wallet. I think that is important during any emergency. And yes, I do avoid most Chinese medicine and herbs but I do take 'boh chye' for tummy ache. Btw, the Chinese 'sinseh' I visited do know about G6PD so I guess it's really not unheard off.

    It definitely get less threatening as the body becomes more mature. Take care.
     
  30. mel_chf

    mel_chf Member

    Oh yes, please mention that you have G6PD whenever you visit a new doctor or dentist or even hospital. They would usually treat it as allergic to drugs.
     
  31. pinkamoon

    pinkamoon Member

    Hi! My husband is G6PDD and has thalassemia minor. My daughter has G6PDD too. Life is still the same and we are careful abt fava beans although my husband snacks on it once a while. Just make sure you tell the doctors that you are G6PDD when they ask abt drug allergies.
     
  32. fairabe

    fairabe Member

    My boy is G6PD too and he is 26mths already.he has been coughing and med doesn't seem to work and I'm intending to try essential oils.other than peppermint which is a no no, anything else to avoid? Any mum can share experience on using essential oil on G6PD babies?
     
  33. morningstarz

    morningstarz Member

    Sorry mummies. Been away from this thread for a while. My son uses ru yi oil from birth too and he is fine with it.

    He also uses both Vicks and baby vicks and again no issues. I only use vicks when I have no access to baby Vicks.

    I know some g6pd kids who can't touch mint. But it's not that common. I think it depends on different individuals.

    On a separate note, I believe that it is quite hard for mummies to check in here all the time. I'm keen to set up a g6pd whatsapp group just for us to support one another. Any mummies interested, pls pm me your mobile numbers.
     
    Allisa and fairabe like this.
  34. pinkamoon

    pinkamoon Member

    Hi mummies, moth balls are out, just for your info.
     
  35. Lovingyoumummy

    Lovingyoumummy New Member

    Morningstarz , i wanna join the whatapp group gor g6 mummy
     
  36. luckystar269

    luckystar269 New Member

  37. Allisa

    Allisa New Member

    I would like to join the whatsapp group for g6pdd
     
  38. deedeecee

    deedeecee New Member

    hi pls add me into whatsapp chat group

    my soon turning 3 boy who is G6PD deficient had 2 seizures last year and I'm not sure if it was because he was exposed to Ruyiyou (we found out later one of his classmate had that on her in class). The second time he had the seizure in the middle of the night (thank god our helper was vigilant), we had no idea and couldn't
    trace how/why that happened...
     
  39. drmisha

    drmisha New Member

    hi mummies
    i have a 3 mths old baby who's G6PDD. i would like to join the whatsapp group! my mobile 98805560
     
  40. minnx80

    minnx80 New Member

    Hi mummies please add me in WhatsApp too 60124826278.

    Just given birth last week with g6pd boy, was dumbfounded when the pd told me.
     
  41. Winispinning

    Winispinning New Member

    Dear mummies, my baby is 10 mths old and also g6pd deficient. Can someone kindly add me to the what's app group please. My mobile is 93686083. Thanks
     
  42. dolphin48

    dolphin48 Member

    I'd like to be added too as my boy who is coming to 18 months also g6pdd..
    My number 98453631. Thanks.
     
  43. Numx

    Numx New Member

    Please add me on watsapp group 00447438129580...my son is 4month old and has g6pd .i am about to start weaning in few days and don't know what to give him.pleaae help
     
  44. Christine Choo

    Christine Choo New Member

    My son born 25th Feb 2015 and was detected g6pd. Unaware of this deficient makes me panic after seeing tons of avoid food on g6pd.org.
    However, I was assured by pd that only certain food to avoid moth balls (naphthalene/champor) fava beans (broad beans/kacang parang) all Chinese medicine, mosquito repellent. Just recently discover pipagao枇杷膏 and doubanjiang豆瓣酱 also in the avoid list。
    I ever read an article about vicks apply on g6pd baby for 5 years and causing brain damage. I can't recall where I read it but it's happen at US. Mummy please careful on using ointment or cream which has menthol.
    G6pd will be their lifetime battle to sustain as well as us as a mum. Let's support one another
     
  45. Kopi lim

    Kopi lim Member

    Hi jade bunny, nice to know someone who's child has g6pdd and also seeing Dr keoy. My son is born in October 2015, I supposed your kid is much older now. I hope to stay in contact with all mummies here for sharing of information. I m low supple breastmilk mummy and using enfamil a plus as supplement, hope everything will be fine for my boy:(
     
  46. Kopi lim

    Kopi lim Member

    Hi hi please add me too 91056116 thank you
     
  47. lavlyn78

    lavlyn78 New Member

    Hi, my daughter is also has g6pd, she is 3months now. Want to learn more from you mummies. Please add me 96803390 in the group. Thanks.
     
  48. auddie

    auddie New Member

    Hello my newborn is g6pd deficient, am freaking out on e info im getting online. Pls add me to the whatsapp group? 91475988 Audrey thank you!
     
  49. Yummymummy1

    Yummymummy1 New Member

    Hi
     
  50. Yummymummy1

    Yummymummy1 New Member

    Hi Cozel and other ladies,
    I have 2 boys. One is 3 years and the other is 5 months. When my second son was born we found out he had g6pdd cuz he had jaundice. I was very shocked cuz I had never heard anyone to have it my family. It was then that we tested our elder son and Lo and behold he turned out to be g6pdd too... He never had jaundice as a baby. I gave him all things having soy and all legumes including formula milk. I have stopped legumes and try to avoid soy... Docs didn't have much knowledge about the condition.. But to our relief my kids paediatrician is himself g6pdd.. So we get first hand information about wat to avoid. He says that he drinks soy milk and it's very healthy. So now I don't really stop my son from eating things that have soy from time to time like cheese and biscuits.. I know it's a hard decision cuz our kids depend on us to make this choice and we don't want to harm them by making the wrong choice.
    But if it's a very common condition and thousands of people don't even know they have it esp in countries where these tests r not performed like Pakistan where I'm from and they eat soy and legumes, then it's alright to take it easy and give things in moderation.
    Also I believe no real studies have been performed and it's not proven that all legumes are harmful.. Just a few things I remind myself when I think too much about this and get very restless...
    Babies can take pasteurised fresh goats milk instead of formula which is wat I'm going to start my baby on from 6 months..
     
    Fatyma likes this.

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