Coping with G6PD Deficiency

Back in 2008, Joey’s nephew got a positive result for G6PD Deficiency after he had his newborn screening test. I was still studying then for my Medical Technology course and I already had a brief background about the condition. I was aware that this is common among Filipinos and that we had the “mild” type (Class III) according to World Health Organization’s Classification, based on the magnitude of the enzyme deficiency and the severity of hemolysis. I assured their family that it wasn’t something to worry about just as what the little boy’s Pediatrician had said to them.

Since I knew how this was passed on to the baby boy, which is hereditary, by the way, I knew that if I were to marry Joey and we had our own child, he or she might also be at risk of having the same condition as well. So, I dedicated some time to research more about this through reading books and several studies made here and abroad to further my knowledge in this area.

Years passed and December of 2012, I gave birth to my little girl, Matilda. And just after days of enjoying her presence, the hospital called and asked us to pick up the result of her newborn screening test, immediately. I knew right then and there that Matilda must have had a positive result for G6PD Deficiency and true enough, I was right.

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What is Newborn Screening?

Newborn Screening (NBS) is a simple procedure to find out if your baby has a congenital metabolic disorder that may lead to mental retardation or even death if left untreated. Most babies with metabolic disorders look “normal” at birth. By doing NBS, metabolic disorders may be detected even before clinical signs and symptoms are present. And as a result of this, treatment can be given early to prevent consequences of untreated conditions. This is ideally done immediately, 24 hours after birth. This costs only 550 pesos and the results usually come out within 2-3 weeks, depending on the place it was made.

What Disorders are included in the Screening?

Disorder Screened Effect if NOT SCREENED Effect if SCREENED and managed
CH (Congenital Hypothyroidism) Severe Mental Retardation Normal
CAH (Congenital Adrenal Hyperplasia) Death Alive and normal
GAL (Galactosemia) Death or Cataracts Alive and normal
PKU (Phenylketonuria) Severe Mental Retardation Normal
G6PD Deficiency Severe Anemia, Kernicterus Normal
Maple Syrup Urine Disease Death Alive and normal

 

What is G6PD Deficiency?

Glucose-6-phosphate dehydrogenase deficiency, or G6PD deficiency for short, is the most common “inborn metabolic disorder” in the world. This means that from the time a baby is born, thre is already something wrong with how his body makes and breaks important substances. According to statistics, about 400 million people have G6PD deficiency, and it is most common in Africa, Southeast Asia and the Middle East.

Babies with G6PD deficiency have very little or no enzyme called Glucose-6-Phosphate Dehydrogenase (G6PD). An enzyme is a kind of protein that speeds up chemical reactions in the body. The enzyme G6PD is especially important to red blood cells. If this enzyme is lacking or missing, red blood cells are easily destroyed.

How is it acquired?

There are 2 kinds of sex chromosomes, X and Y. All baby girls have two X chromosomes. All baby boys have one X and one Y. The gene that gives instructions on how G6PD is made is found in the X chromosome only, thus G6PD deficiency is described as X-linked.

If a baby girl gets one defective G6PD gene from either of her parents, she will not have G6PD deficiency because she has another G6PD gene that can do the work (remember: a baby girl has two X chromosomes, thus two G6PD genes). But if she gets two defective G6PD genes from both her parents, she will have G6PD deficiency. On the other hand, a baby boy whose G6PD gene is defective will surely get G6PD deficiency because the Y chromosome has no G6PD gene.

A defective G6PD gene will give wrong instructions on how to make the enzyme G6PD. As a result, too little or none of it is made.

NOTE: Kindly click on this link to view the inheritance chart – http://g6pddeficiency.org/wp/g6pd-deficiency-home/g6pd-deficiency-inheritance-chart/#.U5kwKvmSw1I

What is the potential harm of having G6PD Deficiency?

If a baby does not have enough G6PD, his red blood cells lack protection from the harmful effects of oxidative substances. When these substances accumulate in the body in hight concentrations, it may lead to hemolysis – a process wherein red blood cells are destroyed which usually causes hemolytic anemia.

Destroyed red blood cells are brought to the liver to be broken down to smaller pieces for disposal. One of the end products of this process is bilirubin, a yellowish substance that accumulates in different parts of the body when too much of it is produced. Quite often, bilirubin accumulates in the skin and causes it to appear yellowish (Jaundice). In the worst cases, biliribin accumulates in the brain (Kernicterus) and causes mental retardation or death. 

prevalence-2013

Source: http://www.newbornscreening.ph/

My initial reaction was relief that it was indeed G6PD Deficiency and not something else. Among the 6 conditions included in the test, G6PD Deficiency was the least serious and it had no medical intervention needed afterwards.

After confirming quatitatively the amount of G6PD level Matilda had, we came back to her Neonatologist-Pediatrician, with the result. The doctor explained that this condition is common among Filipinos and there is no need to be alarmed.

Since Matilda is breastfed, I had to ask the doctor if eating food that is found to be harmful for her condition is safe. He said that only very little to none is passed on to breastmilk that may cause harm or reaction on Matilda. A BREASTFEEDING MOM OF A G6PD- DEFICIENT BABY DOESN’T NEED TO RESTRICT HER DIET AT ALL. And since I knew that this was the mild type, I trusted him and did not restrict my diet in any way. He also explained that he advise against diet restrictions when babies already start eating. What he suggested was to introduce one type of food at a time and observe for any reactions if there is any. Common immediate reactions are:

  • paleness (in darker-skinned kids, paleness is sometimes best seen in the mouth, especially on the lips or tongue)
  • jaundice, or yellowing of the skin and eyes, particularly in newborns
  • an enlarged spleen
  • dark, tea-colored urine

So we followed what he said and just took extra care on the medicines and other substances that may pose a potential threat to Matilda’s health. Substances containing high oxidative properties such listed here:

g6pd-brochure_Page_2

As you can see, there are a lot of things to avoid and most of them are food we, Filipinos usually eat. But as I have said, I never restricted Matilda to such foods. In fact, she eats them regularly but in moderation. It’s not that I am not concerned about her well-being but it is more for the fact that I want her to be able to live a normal life just like anybody else. Just like any food we have at home, we rotate them and never eat them every single day, so that saves me from the worry that she might be overly exposed at some point.

Matilda now 1 and a half years old is a healthy breastfed baby and a happy eater, too. We do not let her condition define her life, rather, we look at it as a blessing. A lot of people mistake G6PD Deficiency for a sickness that is incurable and we aim to educate them that this is something you can live with. Something you can control. We pity those who are misinformed and those who are very cautious to the point that the life of the child becomes burdened with the thought that he is suffering physically and that his life is always at risk. Let’s not think this way and inform ourselves instead. Learn to do your research and do not rely on the internet for all the information. Not everything you will find there is true and reliable.

Most studies made about G6PD Deficiency were done abroad. Countries like China and Indonesia where this condition is also prevalent. Another blessing that this condition bring is that people found to be positive with it are living in areas endemic with Malaria. Why? Researchers have found evidence that the parasite that causes this disease does not survive well in G6PD-deficient cells. So they believe that the deficiency may have developed as a protection against malaria. See? G6PD Deficiency isn’t all that bad! Even though these studies are not yet a 100% proven, it gives me hope that God created this for a purpose. Just like here in the Philippines wherein Malaria is considered endemic, in Palawan and Tawi-Tawi specifically, it makes me at ease that she is somehow resistant to something. No, I don’t allow her to be bitten by mosquitoes because there’s still a chance she might have Dengue virus and we don’t want that either. But I’m sure you get my point! Anyway, if you looked at the list I included above, one particular group of medicines contraindicated are Antimalarial drugs – these are medicines to treat or prevent Malaria. Amazing isn’t it? God made the condition in such a way that, yes, you may have G6PD Deficiency but you are protected from Malaria and the harmful effects of the medicines needed to treat it. God is good, indeed!

Newborn screening is really important and I am glad that we have this available at any hospital. Because of this, we found out Matilda’s condition and also learned that Joey and I happen to have it too. At least now we know what (medicines) to avoid and what to do in case of emergency. It only goes to show that this is really common here in our country. And if your son or daughter has it, they got it from you as well. In our time, we don’t have this screening yet but we were able to live a normal life not needing to avoid anything. So please don’t over think the condition. Get yourselves informed and find a way to cope with it just like what I did.

People who have been tested and proven to have G6PD Defiency are not allowed to donate blood so make sure you are aware of this. And based on my research, we are also at risk of developing Gout. This I did not find on the internet before, but I read in our Clinical Chemistry book way back in college. I believe that it’s true since Joey and his brother both have high levels of uric acid in their blood. This affects men more than women and it can be serious especially if you are overweight or if there are underlying medical conditions like Diabetes and Hypertension. Gout affects Joey’s brother more than the G6PD condition itself so it’s best to keep your diet away from food that triggers gout such as the one’s listed here:

Now that you are aware of G6PD Deficiency, what do you need to do as a parent?

1. Make sure to get a newborn screening procedure made for your baby. If you found out he/she is positive for G6PD Deficiency, get a confirmatory test right away and have his Pediatrician informed immediately.

2. Commit 100% to BREASTFEED YOUR CHILD. This will not only protect them from the dangers of feeding formula milk but it will also greatly benefit their health in the long run. Remember that formula milk is processed and it usually contains soy!

3. Make sure always have the list of things to avoid wherever you go. This will come in handy if ever your child needs any medical attention. Post it on the door of your fridge or if your child goes to school, insert it in this bag and inform him about the copy in case of emergency.

4. Inform every person your child interacts with. Let them know he is not sick and what they have is not contagious. Allow them to grow up understanding what it is they have and explain to them why there is a need to avoid certain things. Do not scare them or deprive them. The list only says to avoid but not to entirely eliminate them especially for the list of foods.

5. Allow you child to explore most especially with food. Let them eat those listed above, in moderation and just observe them for possible reactions. That way, you’ll be able to pinpoint which to avoid next time. I would suggest a food diary in the early months (6 months and above) when they start eating. That way you’ll be able to keep track of what they eat and be able to rotate them.

5. Lastly, take comfort in knowing that God is with you and will never forsake you.

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Deuteronomy 31:8
The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged. (NIV)

 

I hope I was able to share the most important things about G6PD. How about you? Is your child positive too? How are you coping with it? If you happen to have questions you may leave a comment and ask me. If I know the answer I will get back to you right away, but if not, I will do my research first then we’ll talk about it!

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75 thoughts on “Coping with G6PD Deficiency

  1. Thanks for sharing. I downloaded your blog to able to read it everytime i worry. It was informative knowing that someone who researched it is a mom of a g6pd positive kid. I will look 4ward to more of your blogs about it. God bless our babies.

    • Thank you for your appreciation, Olga! You can leave me a message on my Facebook Page whenever you find yourself worrying. It’s good to be able to get support from people going through the same ordeal. May God bless you and your family as well! 🙂

  2. Thank you so much for sharing very important information about G6PD through your blog. I really learned a lot from it which I didn’t from websites. God bless you and your family.

    • Hi Guada! That’s the sad fact about G6PD Deficiency, especially in our country. We have too little information about it and even the brochures given to parents are lacking some valuable information. It has been my advocacy to share what I know and experienced as I raise my G6PD-Deficient daughter. I’m really glad I am able to do this through the blog. Thank you so much for your support and appreciation! May God continue to bless you and your family as well. 🙂

  3. your blog really put me at ease… my daughter is also G6PD deficient… i was particularly struck with this ” As you can see, there are a lot of things to avoid and most of them are food we, Filipinos usually eat. But as I have said, I never restricted Matilda to such foods. In fact, she eats them regularly but in moderation. It’s not that I am not concerned about her well-being but it is more for the fact that I want her to be able to live a normal life just like anybody else.”
    thank you very much for such a reassuring write-up…

  4. Hi mommy!

    I read from the website that boys positive with g6pd got it from their mother which mentioned in the website that the mother is a carrier so then mother also should avoid all the foods from the lists. Is it true? And if g6pds eating the foods avoided the effect will be later in their life that it will result to health problems later on..all of this I read from a website so I don’t know how to cope with it.

    • Hi Flor!

      The effect if there is any, is immediate. You will see signs that there is a reaction right after exposure. So technically, if there has been no reaction for you ever since, then it is possible you are not really affected and it is best to have yourself tested just to be sure.

      If ever you are indeed positive for G6PD, I wouldn’t worry much about long term effects because as far as I know, hemolysis happens right away. I would also suggest you get a CBC to know if you are anemic or not.

      • Thank u for your reply..I’m getting CBC even before and I’m thankful that I’m not anemic but anemia is in our family..I will have CBC again just to be sure..and also I’m always eating all the foods even fava beans but there is no reaction..thanks again

  5. Hi mommy,

    I’m glad I came across this article through Breastfeeding Pinays. My son, who’s now 7mos old, is G6PD deficient. Earlier today I fed him taho in small quantity. Like you, I don’t want the condition to limit my son’s lifestyle. It is comforting to know about your success story with Matilda. Thank you for sharing with us your experience! 😀

    • Hi Mommy France,

      I’m glad you found the post helpful! I hope and aim to share more about this as we go along. All I can say is that, Matilda is a living testimony of how this condition should not define the life of our children. May God bless you and your baby! Hoping you’ll find feeding solids really exciting and fun! By the way, you might want to explore Baby-Led Weaning and try joining the group on Facebook as well. This is what we practice at home and feeding is much more enjoyable this way. 🙂

  6. Hi,

    Thank you for the nice blog about G6PD Deficiency. I should introduce myself before continuing. My name is Dale Baker, the creator of http://g6pddeficiency.org/wp/ and author of two books about G6PDD.

    Most of your blog I agree with, but there are a few things I feel I need to comment on.

    1. Women are asymptomatic. In 1962 two different research groups came to the same conclusion, women with one affected X chromosome ARE symptomatic. A woman by the name of Lyon was involved in the research and she used it to espouse a theory, later named Lyonization, or X inactivation. Basically, at a very early stage in an embryo’s life each cell randomly chooses one of the X chromosomes to deactivate and passes this choice on to its progeny. I recently heard from a medical student who is also G6PDD and is very involved with it, that Lyonization was admitted as a law at a medical convention in Europe. I think around 2005 or so. The result of Lyonization is that there are two different populations of cells in a woman’s body. This Dr. Lyon called mozaicism. In regards to a woman with one affected X chromosome, one population is deficient, and the other is normal. Remember the selection is random, so the ratio of affected vs normal cells follows the Bell curve. Some on each end but most women will fall somewhere in the middle. This means that ALL partially deficient women are symptomatic to some degree or another depending on where on the Bell curve their red blood cell ratio falls. Some myths just refuse to die.

    2. It’s okay to consume things on the avoid list “a little”. I recently posted about this on the G6PD Deficiency Facebook group and invite you to read the post as it would take too much space here. See https://www.facebook.com/groups/g6pddsupport/473513622786130/

    3. Knowledge is power. Yes, we do not need to be afraid and the one thing that reduces fear the most is knowledge. But it must be the truth. Incorrect “knowledge” leads to bad choices and consequences.

    Again…thank you for your efforts to help people understand G6PDD and for the links to my website.

    All the best,
    Dale

    • Hi Mr. Dale,

      I am so honored for you to have read my blog! I appreciate all the corrections and most especially the newest information you have shared in the first point. It is something I am familiar with, but just came to understand it better today.

      The main reason I created this entry is to ease the worries of my fellow mothers who have somewhat lost their hope upon learning that their child is G6PD-deficient. Based on the chart I have provided, the percentage rate of G6PDD in the Philippines is high and isn’t being given much awareness here, as of today. Basically, my aim is to be able to reach out to mothers for them to understand this condition, the easiest way possible.

      I agree with you in everything you mentioned, and I will continue with all my best to be able to share my personal experiences and knowledge I have also learned through time. Again, thank you very much for visiting my blog! Hoping to learn from you more and maybe meet you personally someday.

      Best regards,
      Ams Macaraeg

  7. Stumbled upon your blog. Like you, I have a daughter who has G6PD deficiency. At first I got scared when confirmatory tests resulted positive. Because I didn’t know much then, I panicked. Good thing, there’s the Internet. I learned about coping with G6PDD. My OB and my daughter’s pedia also told me that this is the least serious among those checked in the newborn screening, so I shouldn’t worry much. I just have to know which food and medicines to avoid.

    My problem now, though, is not having enough breastmilk supply for her. I really want to breastfeed her as much as I can (I’m also a working mom) and I’m really intent on finding ways to increase my milk supply because I know nothing’s best for my child but my milk.

    Thanks for sharing your story. It inspires moms with G6PDD babies like me. 🙂

    • Hi Michelle!

      Are you already a member of Breastfeeding Pinays? It is a facebook group composed of mothers, lactation peer counselors, doctors and advocates. You can join the group and find out ways to increase your milk supply.

      I also have blog posts on breastfeeding that you can find on the archives. However, the best tip I can give for you to maintain your supply is to increase water intake, eat healthy food and add malunggay to almost anything that you eat. Plus, if you pump, keep it on a schedule of every 3-4hrs max to avoid a dip in your supply. It would also be good to allow your baby to latch whenever you are together. This is their way of making up to the caloric needs they haven’t met for the day. It happens every night during your feeding and that is called reverse cycling. Lastly, trust that your body will produce the amount of breastmilk your baby needs. Stress really affects our supply so positive thinking is the way to go. 🙂 And do keep in mind the 1-1.5oz per hour rule. That’s how much milk they need for the first 6 months of life 🙂

      • Hi! My baby is also positive G6pd, i have low milk supply and i’m working. I decided to eat lactation cookies that contains fenugreek but i found out that it is on avoid list. But my pedia told me that it is still safe because i’m the one who is eating it not my baby. Do you think it is really safe for me to take while im beastfeeding? Hoping for your reply!

      • Yes, fenugreek is safe. But I would suggest you go all natural and eat malunggay leaves instead and drink plenty of water, while keeping your expression of milk on na strict schedule. Your child if below 6 months old, only needs 1-1.5oz of breastmilk per hour. It’s either the caregiver is giving too much milk, or you really are experiencing low milk supply. Please join the facebook group Breastfeeding Pinays to learn more about keeping up with the demand of your baby. Looking into cupfeeding is also sa better alternative to bottlefeeding. Always direct feed when you are together.

  8. Protection from malaria?? Really? That’s great! We live here in Palawan kasi. Thanks for this very informative blog it somehow puts me at ease.

    • You’re welcome Graezy. By the way, join Breastfeeding Pinays so we can help you address your concern on breastfeeding. I also have a number of blog posts regarding the benefits of breastfeeding as well as the risks of formula-feeding. Hope you can find the time to read them as well. Have a nice day!

  9. After reading your blog regarding on G6PD it helps me a lot not to feel so worry. My 3rd baby has G6PD and until now i didn’t happen to take him for a confirmatory test as I am so busy with my work and doesn’t have free time to do this. We had received the screening test result this April 28. He’s now 1month old and 12 days, i just want to know if is it ok to do a confirmatory test after it takes over a month. Hope you can help me. Big Big Thanks!!! Godbless 🙂

    • Hi Karen! Yes, you may still bring your child to a testing center and request for the confirmatory test. There are instances wherein a child is positive in the screening but is negative on the confirmatory. God bless! 🙂

  10. Hi Ms. Ams..do you have facebook page po so I could follow you.. thanks po..First time Mom po ako ng two months old baby boy and he is also Positive in G6pd.. I wonder kung sino ang positive sa amin ni hubby…wala naman po anemic sa aminng family… lahat ng nasa avoid list nakakain namin ng madalas…kaya nagtataka po kami…at first ng nalaman kong positive nadurog puso ko..at panay tanong ko sa sarili ko po ng bakit??narelieved naman po ako na makitang ok si baby mo po..salamat po sa pagshare ng iyong experience thru blog..God bless you richly…😃😃😃

  11. Hi ,
    thanks for the blog as I am really concerned about my boy.just want to know at what age I should wean him and with what things I can start weaning him?my husband is thinking to go with baby rice and can I give him cereal with no soy?please reply
    thanks

    • Hi!

      I would suggest you start with solid-feeding when baby is 6 months and beyond. Check for signs of readiness like being able to sit unsupported and when baby no longer pushes the food out with his tongue. I would also discourage you from giving artificial or processed food, like baby cereal. It would be best to start by giving them fresh fruits like avocado, banana and vegetables such as sweet potato, squash and lean protein as you go along. Stick with indigenous food, these are what grows within your country. 🙂

  12. Thank you so much for the information Ams. You have helped me not to worry so much about the condition of my baby.At first I found it hard to accept the condition of my baby because of so many food which are not allowed for him. I cannot imagine how can he live a happy life if there are more things to be avoided. My husband and I were very worried when we knew the result of NBS. With your blog, I now understand that my son can still live a healthy life and of course with proper care. Thank you and God bless!

  13. hi there.. hows ur baby now? just found out that my baby has g6pd.. and i m realy worried. need to know ifi have nothing to worry thanks. so shes eating eveeythin on d avoid list?

  14. I have two boys 3 and 6 and they are both positive with G6PD,thank you for this information Ams. Please, if you have an updated list of food and products to avoid kindly send them to me. Hope we can preserve this group.

  15. Hi Ma’am Ams. I am Nikki. 23 y/o. I am a registered nurse and I am taking my masters degree. I would like to do a research regarding the lived experience of mothers on raising a child with G6PD Deficiency, or a mother’s perspective on raising a child with G6PD Deficiency. I haven’t done anything yet. I am searching for information about G6PD Deficiency and it led me to your blog. You said that based from your research and experience, this deficiency is not so alarming, would it still be helpful if I conduct a study regarding lived experience of mothers on raising a child with G6PD Deficiency? Your opinion would really help me decide on this because you yourself have experienced raising a child with G6PD Deficiency. Thank you so much and I am really hoping for your response! God bless! :)

    • Hi Nikki,

      Yes, a recorded study would be helpful to raise awareness on this matter. Most mothers are skeptical when it comes to feeding a child with G6PDD. My goal is to give accurate information to them to relieve them of their fears and worries so that their child can live a normal life. 🙂 I think what you are planning to do would is great. Wishing you well and may God bless your study!

  16. Is it okay for my wife to eat Peanut if she’s breastfeeding my son with G6PD? Kindly send me your comments thru my email. Thank you. as well with the list of foods to avoid.. Thanks & GOD bless you all.

  17. Done reading your blog. Thanks to you and to Breastfeeding Pinays kasi nabasa ko to super worried talaga ako about my Baby He’s 1yr. and 2mos now. Actually, iniiwas ko talaga sa kanya yung mga ‘bawal’ na foods and while reading this blog na-enligthen ako na hindi ko naman dapat pala sya iiwas. I guess ako ng ung carrier ng G6PD na yan. Favorite ko pa naman ung mga bawal. Taho,Ampalaya at Adobo. Thank you for this blog Ams, pwede naman pala in moderation lang. Question lang, c Matilda ba nung 1yr old sya pinapakain nyo na dn ng bawal na foods? I hope masagot mo question ko. Thanks! 🙂

    • Hi Rose Ann, yes! We started giving her everything in moderation when she started solids. Part of her firsts was Ampalaya and Sitaw. 🙂

      Just remember that when you introduce something, if there would be a reaction, the effect is immediate. So just watch out for sudden changes in urine color, poop and observe baby at all times. 🙂

      Thanks also for reading the blog! Glad to help!

  18. Hi Ms. Ams! I also have a son with G6PDD and you’re right, I’m very worried about him because of the long list of food to avoid. I’m a working mom so I can’t EBF my baby. He’s currently taking NAN but I make sure to breastfeed him every time I’m at home. I would like to ask if G6PDD babies are okay for vaccination? and how to know the severity of a child’s G6PDD. I’ve been trying to research on the net but I really can’t find answers about it. I really hope you can help me with this. TIA po.

    • Hi Maribel,

      Actually there are ways to continue giving your child pure breastmilk as this is what is safest and this is what will give him maximum protection especially he has this condition. You can join breastfeeding pinays for inspiration on bringin baby back to pure breastmilk.

      With vaccinations, these are all safe. We are giving all the required vaccines to Matilda.

      The severity on the other hand cannot be quantified, if that’s what you mean. All we know is, that it is seen based on the reaction that we see in the naked eye, as well as the hemoglobin count that we find in the blood. If your child is purely Filipino, nothing to worry about. This is common and very mild in our race.

  19. Hi Ms. Ams! I also have a son with G6PDD and it worries me a lot, thank you for your blog, it really helped me. I’am a working mom so I can’t EBF my baby, he’s currently taking NAN but I make sure to breastfeed him whenever I’m at home.

    I would like to ask if vaccinations are approved for G6PDD babies and how to know the severity of a child’s G6PDD. I’ve been searching all over net but I couldn’t find answers to these. I really hope you can help me. TIA po.

  20. Hi ms ams, your blog really help me alot on G6pd as my hubby and my son have it..thank you so much for sharing. I’ve seen the avoid list, my question is, is soya really have to avoid ? i already take soya like soy sauce,tofu and soy-based food but so far there is nothing happen or reaction shows from my baby. is it safe? my hubby also eats soy sauce n soy based food but still ok.

  21. Hi Ms. Ams, my pedia has given ascorbic acid for my baby’s vitamin but it is included in the avoid list. What vitamins did you give your daughter when she was still an infant? TIA po.

  22. Hi po..im so happy I came across ur site..my 1 month old son is positive and so worried..but when I read ur blog I was kind of relieved but still I do have a lot of question on which ill just have my pedia to answer..anyway just want to ask ur experience with regard to ur baby’s immunization..did she had a fever..did u gave any meds or just did sponge bath? And also since im breastfeeding my little one..I wud stil b able to eat those food to avoid pero moderate lng?just asking bec ive been reading articles and some of them say I should really avoid those food.. Thanks

    • Hi Mitch! Congratulations and good job for breastfeeding!

      With regards to immunizations, my eldest never had a fever. With my 2nd, almost every vaccine, she gets a fever and we give her paracetamol for it just to lower it down and to relieve her of the pain due to the injection. Your pedia will prescribe it as needed. With the right dosage, it is perfectly okay.

      With food, yes I do eat anything in moderation. Same goes for my eldest when she started eating solids. I hope I was able to answer you questions. God bless!

  23. Hi…thank you for sharing😀 Very informative and comforting… All moms with babies positive with g6pd should have read this…both my little boy nd baby girl are positive…my boy is now 4 and my baby girl will turn 2 qeeks this wed. We jst got the result of her newborn screening today…thats y i “googled”. I could relate with u…but with my little boy 4 yrs ago i had post partum depression due to my ignornce of the condition…i was crying for 2 weeks becoz i never had any understanding of the condition…its really hard if we do not know anything about it because i had different thoughts running usually scary…it took me a while to accept and look at it as if it is an allergy…thank u for sharing😀

  24. Hello, Ms. Ams! I am very thankful I came accross your blog. I am a mother of a G6PDD baby boy. Learning about my son’s condition broke my heart at first. But when I read your blog, it made me understand G6PDD well. I have a wquestion though. Is it okay for me to take supplements like Natalac even if my son is G6PDD? Thanks a lot!
    -Lora

    • Hi Lora! Thanks for reading through the blog and I am glad it helped you!

      I would assume you are breastfeeding? With galactogogues we always recommend sticking with natural and whole food. Fresh malunggay is always the best option and then you have others like coconut milk (gata), oats, soup, and water that would boost your supply, apart from breastfeeding on demand.

      Natalac in itself is not bad but it can or may result to oversupply and plugged ducts. Best to stick to what’s natural.

      Regards,
      Ams

  25. Hi! Thank God i found this blog. My son is g6pd deficient as well and like you, my pedia told me not to worry. Anyway, just wanted to ask though, aside from the NBD, is there any other test that your daughter took to know her classification (accdg to WHO) and how is she now? Thank you for taking time to read my comment (and hopefully answer! 😊)

    • Hello Jeri,

      We didn’t have any other tests, just the confirmatory testing required after the initial screening.

      My daughter doing great, thank you for asking! She’s 3 and a half years old now living a happy, healthy and normal childhood.😊

      • Thank you for replying. Im happy to know that your daughter is doing great! May i know if she still eats the food that are supposedly not allowed? And which ones has an effect on her?

  26. Hi my son is g6pd and he is 1yr old and 1 month. I start giving him a formula milk when he is 6months. Because I need to go back at work oversea. His milk is enfamil a+ but when turned 1yr old i swith his milk to enfagrow. But sad to say he is not doing goos with. He is eating solid food very well. What milk can i offer to him. Is freshmilk will do. Thank you very much. God bless you and your family 😉

    • Hi! Since your son is 1 year old now, his main nutrition should already come from solid food. Milk can only be as beverage and not part of his diet anymore. You can give plant-based milk like Almond Milk or Fresh Milk will do also if he likes but it is NOT needed. Focus on nutrient rich food. Plenty of vegetables and fruits are great sources of calcium and vitamins.

  27. Hi! I just got the result of the confirmatory test of my son today. I’m so worried and anxious due to the long list of the foods that needs to be avoided. But reading through your blog, I’m glad that my son can still possibly live a normal life. May I know if Matilda also had jaundice when she was a new born? if yes, how long did it last and what did you do to eliminate jaundice from her body? My son is turning a month old on Thursday and he still has jaundice but he’s not that yellowish unlike before. Hoping for your reply. Thank you.

    • Hi Trish!

      Yes, Matilda has jaundice too when she was a newborn. It slowly went away at around 3 weeks if I remember correctly.

      The best thing you can do is to sun bathe baby every morning and late afternoon. Breastmilk also will eventually flush out that excess bilirubin, and the natural color of your baby’s skin will already appear in no time. 🙂

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