Latest Update On AQEEL

  • 252 Replies
  • 224518 Views
*

Offline AL

  • ***
  • 147
  • Gender: Male
  • Aqeel with Aleesya
Re: Latest Update On AQEEL
« Reply #150 on: January 25, 2010, 12:20:30 AM »
Thanks everyone for the wishes, prayed to god for a healthy baby girl.

Manal, Yup (yes) i was the one who gave it a try before, but after 1-2 months, i dont see much difference on aqeel. So i've decided to discontinue it. I still have a lot in hand though, perhaps i'll start using it later, but as for now Aqeel is well off with the chlorophyll, folic asid and multivitamins.

Later

*

Offline AL

  • ***
  • 147
  • Gender: Male
  • Aqeel with Aleesya
Re: Latest Update On AQEEL & ALEESYA (G6PD Deficient) :(
« Reply #151 on: March 08, 2010, 03:55:49 PM »
Hi everyone, Been a while

Just wanna let u guys know that Aqeel had his BT last week and he's doing fine.

Recently my wife has delivered a baby girl on 04.03.2010 weighing 3.37 kg. My wife is still at the hospital together with the baby named ALEESYA AL AFFIYA (today 08.03.2010) as Aleesya has detected to be G6PD deficient. Now i have to look further on this as i don't have any idea whatsoever about this. Seems like i need to join another group in forums for G6PD deficient.

May i ask all the Guru's around (Dr Andy :) and the rest of the gang) have you guys ever came across cases like i'm facing? Anything whatsoever? Since Aleesya is only 4 days old, and that normally only after 6 months only then we can find out whether Aleesya is thalassemic or not, wondering what if she has the combination of the 2 (G6PD & HBe Beta Thalassemia)? Is there such cases?

Need gather all the information i can in order for us to be well prepared for all circumstances.

Tq, Later

Overview of G6PD Deficiency

G6PD deficiency is an inherited condition in which the body doesn't have enough of the enzyme glucose-6-phosphate dehydrogenase, or G6PD, which helps red blood cells (RBCs) function normally. This deficiency can cause hemolytic anemia, usually after exposure to certain medications, foods, or even infections. See contraindicated substances for a list of things to avoid.

Most people with G6PD deficiency don't have any symptoms, while others develop symptoms of anemia only after RBCs have been destroyed, a condition called hemolysis. In these cases, the symptoms disappear once the cause, or trigger, is removed. In rare cases, G6PD deficiency leads to chronic anemia.

With the right precautions, a child with G6PD deficiency can lead a healthy and active life.

About G6PD Deficiency

G6PD is one of many enzymes that help the body process carbohydrates and turn them into energy. G6PD also protects red blood cells from potentially harmful byproducts that can accumulate when a person takes certain medications or when the body is fighting an infection.

In people with G6PD deficiency, either the RBCs do not make enough G6PD or what is produced cannot properly function. Without enough G6PD to protect them, RBCs can be damaged or destroyed. Hemolytic anemia occurs when the bone marrow (the soft, spongy part of the bone that produces new blood cells) cannot compensate for this destruction by increasing its production of RBCs.

Causes of G6PD Deficiency

G6PD deficiency is passed along in genes from one or both parents to a child. The gene responsible for this deficiency is on the X chromosome.

G6PD deficiency is most common in African-American males. Many African-American females are carriers of G6PD deficiency, meaning they can pass the gene for the deficiency to their children but do not have symptoms; only a few are actually affected by G6PD deficiency.

People of Mediterranean heritage, including Italians, Greeks, Arabs, and Sephardic Jews, also are commonly affected. The severity of G6PD deficiency varies among these groups — it tends to be milder in African-Americans and more severe in people of Mediterranean descent. For a scientific discussion of the different strains of G6PD Deficiency, go here.

Why does G6PD deficiency occur more often in certain groups of people? It is known that Africa and the Mediterranean basin are high-risk areas for the infectious disease malaria. 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.

G6PD Deficiency Symptom Triggers

Kids with G6PD deficiency typically do not show any symptoms of the disorder until their red blood cells are exposed to certain triggers, which can be:

illness, such as bacterial and viral infections
certain painkillers and fever-reducing drugs
certain antibiotics (especially those that have "sulf" in their names)
certain antimalarial drugs (especially those that have "quine" in their names)
Some kids with G6PD deficiency can tolerate the medications in small amounts; others cannot take them at all. Check with your doctor for more specific instructions, as well as a complete list of medications that could pose a problem for a child with G6PD deficiency.

Other substances can be harmful to kids with this condition when consumed — or even touched — such as fava beans and naphthalene (a chemical found in mothballs and moth crystals). Mothballs can be particularly harmful if a child accidentally swallows one, so ANY contact should be avoided.

Symptoms of G6PD Deficiency

A child with G6PD deficiency who is exposed to a medication or infection that triggers the destruction of RBCs may have no symptoms at all. In more serious cases, a child may exhibit symptoms of anemia (also known as a hemolytic crisis), including:

paleness (in darker-skinned children paleness is sometimes best seen in the mouth, especially on the lips or tongue)
extreme tiredness
rapid heartbeat
rapid breathing or shortness of breath
jaundice, or yellowing of the skin and eyes, particularly in newborns
an enlarged spleen
dark, tea-colored urine
Once the trigger is removed or resolved, the symptoms of G6PD deficiency usually disappear fairly quickly, typically within a few weeks.

If symptoms are mild, no medical treatment is usually needed. As the body naturally makes new red blood cells, the anemia will improve. If symptoms are more severe, a child may need to be hospitalized for supportive medical care.

Diagnosing and Treating G6PD Deficiency

In most cases, cases of G6PD deficiency go undiagnosed until a child develops symptoms. If doctors suspect G6PD deficiency, blood tests usually are done to confirm the diagnosis and to rule out other possible causes of the anemia.

If you feel that your child may be at risk because of either a family history or your ethnic background, talk to your doctor about performing a screening with blood tests to check for G6PD deficiency.

Treating the symptoms associated with G6PD deficiency is usually as simple as removing the trigger — that is, treating the illness or infection or stopping the use of a certain drug. However, a child with severe anemia may require treatment in the hospital to receive oxygen, fluids, and, if needed, a transfusion of healthy blood cells. In rare cases, the deficiency can lead to other more serious health problems.

Caring for Your Child

The best way to care for a child with G6PD deficiency is to limit exposure to the triggers of its symptoms. With the proper precautions, G6PD deficiency should not keep your child from living a healthy, active life.

Reviewed by:
Elana Pearl Ben-Joseph, MD
Nemours Center for Children's Health Media
Alfred I. duPont Hospital for Children
Wilmington, DE
Date reviewed: August 2006

http://g6pddeficiency.org/index.php?cmd=overview


*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: Latest Update On AQEEL
« Reply #152 on: March 08, 2010, 04:47:22 PM »
Hi AL,

Congratulations on your baby girl,i am sorry to hear she has this problem,i am really sorry i don't know wnything about it,but after reading what you posted,i am hopeful that she'll have an active and healthy life since she has really good parents :) best of luck and prayers and wishes for her  :hugfriend convey my regards to your wife  :hugfriend .

Zaini.
^*^Xaini^*^

*

Offline Manal

  • *****
  • 3100
  • Gender: Female
  • mother of thal intermedia child
Re: Latest Update On AQEEL
« Reply #153 on: March 08, 2010, 11:40:09 PM »
AL, congratulations on you baby :biggrin

It is true that usually G6PD is very common in males copared to females who really carry the gene or pass the gene.
I know many friends who have G6PD deficency and doing very fine as long as they keep away from beans (all kinds of beans) and drugs with sulpha which is not a difficult thing to do, it is more of a life style.

The important thing, is that you should test if Aqeel has inherited this because it could be negatively impacting his thal

Manal

*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Latest Update On AQEEL
« Reply #154 on: March 09, 2010, 12:06:26 AM »
Al,

We have had this topic before. Girls are normally carriers with no symptoms. You can read the previous thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=2768.msg26749#msg26749 My answer is quoted below.

Quote
To answer your other question, G6PD deficiency and beta thalassemia have no relation to each other and neither condition would have an effect on the other. Some basics. If you have a child with a thal major, all of your children will be thal minors (carriers). This may or may not cause some symptoms of anemia, depending on how high the hemoglobin level can be maintained. The odds are that 50% of your male children would have G6PD deficiency and 50% of female children would be unaffected carriers. G6PD deficiency. also known as favism, can have no symptoms or there can be hemolytic episodes caused by ingestion of fava beans and certain drugs. A complete overview can be seen at http://drug.pharmacy.psu.ac.th/wbfile/159254520461.pdf
Most people with G6PD deficiency will have no problems as long as the precautions described on that page are followed.

So, your children would be like hundreds of millions of other people on earth who are thalassemia carriers. There would be no added danger if they carried both thal trait and G6PD.
Andy

All we are saying is give thals a chance.

*

Offline Dori

  • *****
  • 1443
Re: Latest Update On AQEEL & ALEESYA (G6PD Deficient) :(
« Reply #155 on: March 29, 2010, 08:03:29 AM »
Hi everyone, Been a while

Just wanna let u guys know that Aqeel had his BT last week and he's doing fine.

Recently my wife has delivered a baby girl on 04.03.2010 weighing 3.37 kg. My wife is still at the hospital together with the baby named ALEESYA AL AFFIYA (today 08.03.2010) as Aleesya has detected to be G6PD deficient. Now i have to look further on this as i don't have any idea whatsoever about this. Seems like i need to join another group in forums for G6PD deficient.

May i ask all the Guru's around (Dr Andy :) and the rest of the gang) have you guys ever came across cases like i'm facing? Anything whatsoever? Since Aleesya is only 4 days old, and that normally only after 6 months only then we can find out whether Aleesya is thalassemic or not, wondering what if she has the combination of the 2 (G6PD & HBe Beta Thalassemia)? Is there such cases?

Need gather all the information i can in order for us to be well prepared for all circumstances.

Tq, Later




Dear Al,

I am very into G6PD deficiency! It's the first enzyme deficiency and mines is the second! I dont know your thalassemia background, but G6PD is often in combination of Thal minor.
G6PD is, for example, a common thing in Italy. It's related to fava beans. When eating that the blood starts to break down and cause hemolysis. There is a whole chapter about G6PD in the book 'Survival of the sickest' written by Sharon  Moalem.

Btw people with G6PD never need blood transfusions. It's interesting that this was detect by your newborn. It's no fun, I know but thal in the family and this.. There is some literature about it.

If there is anything I can do, please let me know.

*

Offline AL

  • ***
  • 147
  • Gender: Male
  • Aqeel with Aleesya
Re: Latest Update On AQEEL
« Reply #156 on: March 30, 2010, 03:44:34 AM »
Thanks Manal, Zaini, Dr. Andy  :biggrin and Dori,

Hi AL,

Congratulations on your baby girl,,i am hopeful that she'll have an active and healthy life .

Zaini.

Zaini, Thank you so much. I too sure hope that she'll have a healthy and active life.  :hugfriend

AL, congratulations on you baby :biggrin

The important thing, is that you should test if Aqeel has inherited this because it could be negatively impacting his thal

Manal

Manal, I will definitely check about this towards Aqeel. Just to play safe  :hugfriend

Al,

We have had this topic before. Girls are normally carriers with no symptoms. You can read the previous thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=2768.msg26749#msg26749 My answer is quoted below.

To answer your other question, G6PD deficiency and beta thalassemia have no relation to each other and neither condition would have an effect on the other. Some basics. If you have a child with a thal major, all of your children will be thal minors (carriers). This may or may not cause some symptoms of anemia, depending on how high the hemoglobin level can be maintained. The odds are that 50% of your male children would have G6PD deficiency and 50% of female children would be unaffected carriers. G6PD deficiency. also known as favism, can have no symptoms or there can be hemolytic episodes caused by ingestion of fava beans and certain drugs. A complete overview can be seen at http://drug.pharmacy.psu.ac.th/wbfile/159254520461.pdf
Most people with G6PD deficiency will have no problems as long as the precautions described on that page are followed.

So, your children would be like hundreds of millions of other people on earth who are thalassemia carriers. There would be no added danger if they carried both thal trait and G6PD.



Dr. Andy, I really appreciate it, its kinda relieve actually knowing that Aleesya might now have added danger should she carried both thal trait and G6PD. Mind my stupidity, Is there by any chance that Aleesya is major(intermediate) cum G6PD deficient? This is what really worrying me actually.

Dear Al,

Btw people with G6PD never need blood transfusions. It's interesting that this was detect by your newborn. It's no fun, I know but thal in the family and this.. There is some literature about it.

If there is anything I can do, please let me know.

Dori, Thanks Dori, should i have anything else, do mind me in asking later. Btw, from some readings i've made seems like severe case, it goes up until doing blood tranfusion. Still updating myself into more knowledge on these

THANK TOU ALL,,, :hugfriend


*

Offline Andy Battaglia

  • *****
  • 8793
  • Gender: Male
  • Will thal rule you or will you rule thal?
Re: Latest Update On AQEEL
« Reply #157 on: March 30, 2010, 03:52:30 AM »
Al,

The G6PD deficiency can't combine with thal minor to be anything more than thal minor. The only way she can be thal major or intermedia is if she carries two beta thal genes.
Andy

All we are saying is give thals a chance.

*

Offline Dori

  • *****
  • 1443
Re: Latest Update On AQEEL
« Reply #158 on: March 30, 2010, 09:47:20 PM »
That's sugar! I've never heard of g6pd and blood transfusions. I will ask a woman from Oscar Nederlands. She is doing research about this deficiency and thal minor (at least that's what I thought).

*

Offline AL

  • ***
  • 147
  • Gender: Male
  • Aqeel with Aleesya
Re: Latest Update On AQEEL
« Reply #159 on: March 31, 2010, 12:17:33 AM »
I will ask a woman from Oscar Nederlands. She is doing research about this deficiency and thal minor (at least that's what I thought).

Thanks Dori, Please update okay!

Thanks again  :hugfriend

*

Offline Dori

  • *****
  • 1443
Re: Latest Update On AQEEL
« Reply #160 on: March 31, 2010, 06:45:57 PM »
Al, could you please send me a message about my offer? It's really important when you do so, because the lady took some time off now. She is extremely busy already and will be back in place around 10th April.

*

Offline AL

  • ***
  • 147
  • Gender: Male
  • Aqeel with Aleesya
Re: Latest Update On AQEEL
« Reply #161 on: April 01, 2010, 12:21:25 AM »
Al, could you please send me a message about my offer? It's really important when you do so, because the lady took some time off now. She is extremely busy already and will be back in place around 10th April.

I've already sent as requested.  :biggrin

Thanks Dori.

*

Offline AL

  • ***
  • 147
  • Gender: Male
  • Aqeel with Aleesya
Re: Latest Update On AQEEL
« Reply #162 on: April 13, 2010, 06:43:49 AM »
Hi everyone,

Latest update,

Aqeel had fever and cough a few days back, that was 2 days before his routine checkup at the hospital. During the check up he still has fever and cough, since his hb was 6.7, the doctor said that they cannot perform BT and told us to come back straight to the ward for transfusion a few days later after the fever subsided.

Yesterday we went back to the hospital and perform the needed BT (got transfused in total 350 instead of the needed 420). The doctor who checked Aqeel notice that his last transfusion Aqeel was in end of February. This time round, it is sooner than what Aqeel normally go for transfusion (normally he had transfusion very 2-3 months). The doctor then told us that she had to schedule Aqeel for routine check up every 30 days and that Aqeel might have to opt for transfusion on monthly basis. She said that Aqeel's spleen and liver is quite large (4cm and 7cm) due to this they wanted him to maintain HB of above 8. They doctor then reminded us about iron overload and that to take desferal later when needed.

Knowing that Aqeel has to go through desferal later got me worried. I mean for a yound child have to endure all those at an early age (later once he has to).  :wah :wah :wah :wah


*

Offline Zaini

  • *****
  • 3448
  • Gender: Female
  • Life is too short to be perfect.
Re: Latest Update On AQEEL
« Reply #163 on: April 14, 2010, 05:29:42 PM »
Hi Al,

I can understand what is worrying you,but you know there are oral chelators available,so hopefully Aqeel won't have to take needle pricks,Good luck :thumbsup .

Zaini.
^*^Xaini^*^

*

Offline AL

  • ***
  • 147
  • Gender: Male
  • Aqeel with Aleesya
Re: Latest Update On AQEEL
« Reply #164 on: April 15, 2010, 12:22:41 AM »
Zaini, Yeah, i know but i'm not sure wheather the hospital has those. Is it possible to buy it? Is it costly?

I wonder

 

SMF spam blocked by CleanTalk