Hi all! :biggrin
I was really up beat when i got to know that my son HB was 9.4 a few weeks back! Infact, instead of our normal monthly check up, the doctor told us to come and see her again in 2 months time! Should i stick to once a month basis or as suggested by the doctor to have it once in 2 months?
His recent HB level made me wonder, is it possible that his hb increased further? Coz all the while i thought that his HB would be within the range of 7 - 8.
Maybe its the wheatgrass! Sure hope so! but am not sure for certain!
I'm trying to determine how and why his HB increased! Any Opinion on this!
My son is now 20 months old and his weight is 12.5 kg!
Thanks u all
What are leukocytes?
Leukocytes are white blood cells, one of the types of cells in human blood. The body produces leukocytes to help fight off foreign substances in the body such as bacteria, viruses and abnormal cells in an effort to avoid sickness or disease. However, when leukocytes are transfused into another person, with red blood cells, platelets or plasma, they are not well tolerated and have been associated with some types of transfusion reactions.
What is leukocyte reduction?
Leukoreduction is the removal of contaminating white blood cells from blood products. The most common method of leukocyte reduction is filtration. In this process, blood is passed through a filter that separates leukocytes from other blood components, based on their size and stickiness.
There are three types of filtration that may occur:
* Prestorage leukocyte reduction:
o In this preferred process, filtration occurs at the blood center soon after the blood is collected and is performed using standardized, quality controlled processing methods designed to produce a consistent level of leukocyte reduction.
* In-lab post-storage leukocyte reduction:
o Filtration occurs after the blood has been delivered to the hospital.
* Bedside leukocyte reduction:
o Filtration occurs at the patient's bedside as the transfusion is being given.
What are the benefits of leukocyte reduction?
Leukocytes contained in whole blood can act as a contaminant when transfused into a recipient, causing reactions that range from mild to potentially harmful. Leukocytes in transfused blood have also been associated with more serious problems, such as transmission of certain viruses, including cytomegalovirus (CMV), a common virus affecting more than half of all North Americans, and human T-cell lymphotropic virus (HTLV-I/II) which may cause blood or neurological diseases. Leukocytes have been known to cause the formation of antibodies that make future transfusions less likely to be effective and more likely to cause an adverse reaction.
By removing leukocytes from whole blood, the incidence rates for febrile (fever) transfusion reactions are significantly reduced for patients susceptible to this reaction, and may result in improved patient outcomes, shorter hospital stays and reduced health care costs.
ACUPUNCTURE: WHAT IS IT?Hi Manal Sis,
Acupuncture is a method of encouraging the body to promote natural healing and to improve functioning. This is done by inserting needles and applying heat or electrical stimulation at very precise acupuncture points.
Definition
Acupressure is a form of touch therapy that utilizes the principles of acupuncture and Chinese medicine. In acupressure, the same points on the body are used as in acupuncture, but are stimulated with finger pressure
instead of with the insertion of needles. Acupressure is used to relieve a variety of symptoms and pain.
Self-treatment
Acupressure is easy to learn, and there are many good books that illustrate the position of acupoints and meridians on the body. It is also very versatile, as it can be done anywhere, and it's a good form of treatment for spouses and partners to give to each other and for parents to perform on children for minor conditions.
While giving self-treatment or performing acupressure on another, a mental attitude of calmness and attention is important, as one person's energy can be used to help another's. Loose, thin clothing is recommended. There are three general techniques for stimulating a pressure point.
Tonifying is meant to strengthen weak chi, and is done by pressing the thumb or finger into an acupoint with a firm, steady pressure, holding it for up to two minutes.
Dispersing is meant to move stagnant or blocked chi, and the finger or thumb is moved in a circular motion or slightly in and out of the point for two minutes.
Calming the chi in a pressure point utilizes the palm to cover the point and gently stroke the area for about two minutes.
There are many pressure points that are easily found and memorized to treat common ailments from headaches to colds.
For headaches, toothaches, sinus problems, and pain in the upper body, the "LI4" point is recommended. It is located in the web between the thumb and index finger, on the back of the hand. Using the thumb and index finger of the other hand, apply a pinching pressure until the point is felt, and hold it for two minutes. Pregnant women should never press this point.
To calm the nerves and stimulate digestion, find the "CV12" point that is four thumb widths above the navel in the center of the abdomen. Calm the point with the palm, using gentle stroking for several minutes.
To stimulate the immune system, find the "TH5" point on the back of the forearm two thumb widths above the wrist. Use a dispersing technique, or circular pressure with the thumb or finger, for two minutes on each arm.
For headaches, sinus congestion, and tension, locate the "GB20" points at the base of the skull in the back of the head, just behind the bones in back of the ears. Disperse these points for two minutes with the fingers or thumbs. Also find the "yintang" point, which is in the middle of the forehead between the eyebrows. Disperse it with gentle pressure for two minutes to clear the mind and to relieve headaches.
— Douglas Dupler
Precautions
Acupressure is a safe technique, but it is not meant to replace professional health care. A physician should always be consulted when there are doubts about medical conditions. If a condition is chronic, a professional should be consulted; purely symptomatic treatment can exacerbate chronic conditions. Acupressure should not be applied to open wounds, or where there is swelling and inflammation. Areas of scar tissue, blisters, boils, rashes, or varicose veins should be avoided. Finally, certain acupressure points should not be stimulated on people with high or low blood pressure and on pregnant women.
Research & General Acceptance
In general, Chinese medicine has been slow to gain acceptance in the West, mainly because it rests on ideas very foreign to the scientific model. For instance, Western scientists have trouble with the idea of chi, the invisible energy of the body, and the idea that pressing on certain points can alleviate certain conditions seems sometimes too simple for scientists to believe.
Western scientists, in trying to account for the action of acupressure, have theorized that chi is actually part of the neuroendocrine system of the body. Celebrated orthopedic surgeon Robert O. Becker, who was twice nominated for the Nobel Prize, wrote a book on the subject called Cross Currents: The Promise of Electromedicine; The Perils of Electropollution. By using precise electrical measuring devices, Becker and his colleagues showed that the body has a complex web of electromagnetic energy, and that traditional acupressure meridians and points contained amounts of energy that non-acupressure points did not.
The mechanisms of acupuncture and acupressure remain difficult to document in terms of the biochemical processes involved; numerous testimonials are the primary evidence backing up the effectiveness of acupressure and acupuncture. However, a body of research is growing that verifies the effectiveness in acupressure and acupuncture techniques in treating many problems and in controlling pain.
Hi AL ,
i m sorry to hear abt the condition of cute little boy "Aqeel" .. i hope that he'll recover soon and wish that he recover ASAP ... May God bless him with health (AMEEN) .... Always Praying for him and other thals :) ..
Best Regards
Umair
AL,
Is he still coughing and having difficulty breathing?
Antibiotics may have cleared up the lung infection some time ago. I don't understand why they were not given earlier. Hopefully, this will now clear out.
AL, i think that this is what the wheatgrass is used for. Anyway hope for the best, please update us on the fresh chlorophyl :wink
manal
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.
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
Hi AL,
Congratulations on your baby girl,,i am hopeful that she'll have an active and healthy life .
Zaini.
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
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.
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.
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).
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.
Hi AL,
I don't think folic acid has something to do with his weight,but folic acid is a B vitamin and B vitamin can sometimes give you stomach ache or loose stools if taken on an empty stomach,was Aqeel having any of those problems when he was taking Folic acid?as this can make a child loose weight.If he is in normal weight range,you shouldn't be worried.
Good luck for the next checkup :goodluck .
Zaini.
I am glad to hear it went well. What was his pre transf. hgb?
His pre transf. hb was 6.6
In gl/dl or mmol/l ?, I'm afraid i dont know its in gl/dl or mmol/l? ???
Best of luck,with Aqeel and with Aleesya :goodluck .
Zaini.
Resveratrol is a natural supplement made from red grapes. It is also a hemoglobin inducer that can be used with wheatgrass. Hydroxyurea is a drug that is also a hemoglobin inducer and it can be taken with the other supplements. However, it is a drug, and must be taken under a doctor's supervision. I am certain the spots were a reaction to the unfiltered blood. Often, an antihistamine like benadryl, is taken along with the transfusion to minimize this type of reaction. |
hv you started the iron cheator on aqeel?
Does we hve oral iron cheltor here in m'sia? what say the doc on this recently?
joyce
Best of lick AL, keep updating :biggrin
manal
Hi everyone, :hugfriend
Wish us luck, this coming Friday we're gonna bring Aleesya to the hospital during Aqeels monthly check up. The doctor told us to bring her along in order to see if she's a match for Aqeel.
:hugfriend :hugfriend
LAter
L
:( Unfortunately she's NO Match with Aqeel. Only 2/6.
Btw, Aqeel just had his transfusion yesterday, His HB was then 7.4.
I am very sorry to hear his sister is not a HLA match.
Do you feel comfortable by 7.4 gl/dl?
Hi zaini and maha
try to look here.http://www.sureco.com.my/madulina.html
this is the exact product i gve to my Joey and Jovy.
it's cost wisely and it is pure honey and live spiruliina.
Is it possible that the red urine was related to something he ate like beets?
Could you please -if possible- send my a contact of the Agent or a reliable good company that can ship it to me, as you know I live in Egypt .
Or even I can send you the money and the shippment fees and you send it to me
Please let me know
Manal
HI AL.
i just read that u had started a treatment for Aqeel at the TOLE. what happened? r u still going on with it or did u stop? pls i would really like to know the result. bcoz 2 years ago we also got to know abt the TOLE and went to them. but they said that it is a long procedure and have to stay there for some time if we r doing the treatment. since we were not able to stay there for so many days we did not try the treatment.
we also saw so many people getting the acupuncture treatment done. and according to the master there he sd he has done it on thals. i would really appreciate it if u could tell me.
thanks
shaziya
AL
Many many thanks for your kind reply, I really appreciate that sooooo much :hugfriend. I will be waiting for their reply.
Congratulations for the wedding, hope your brother all the best :biggrin
Manal
Hi Al,
It's good to hear that Aqeel is doing well. You seem much more relaxed these days. :biggrin I would suggest that he take a vitamin C supplement of 50-100 mg daily. He can't take a lot of C but he can take small doses like this and this may help with the gum problems, which are often a sign of vitamin C deficiency, one of the most common deficiencies in thals.
Salam AL,
I'm in touch with your wife thru FB.
Which hospital do you plan to go?PPUM or HUKM?
My son currently received his treatment at PPUM and feel free to asked me if you need to know more about PPUM Thalas Clinic.
salam and thank you
We have also found that if the dose is split into two and taken half in the morning and half later in the day, that it is more effective at reducing the iron load, as this gives a true 24 hour chelation period, that can't be had through once per day dosing. The world famous thal center at Oakland Children's Hospital is now also recommending this split dose method that was developed at thalpal. It works.I very much second that. My speedy reduction in FE couldn't be possible without split dose! Am taking Asunra too and taking the proper increased dosage and splitting the dose definitely helps. It may also have happened in reports that the iron shown to be high was because of the free iron that has to be chelated was in blood steam, might be a good sign eventually, but we can't say. The dose is low which should definitely be increased to as to what Andy recommended.
Update,Congratulations!
Aqeel's iron level dropped from 4+++ to 2+++. Dosage has been increased to 5 tablets per day, instead of 4.
Later :hugfriend
Al,
in my opinion, one reaading of 4+++ may not be the true ferritin result if Aqeel's ferritin was hovering around 1700 ish before. if you get 2 or more consecutive reading of similar values then it is probably real. Many times fever, infection etc shot up ferritin values which will come down to previous level after the infection/fever has subsided.
We also do split dose for our 6 Year old. This works very well and has much much lower side effects like nausea, stomach pain etc. Good Luck !
Hello
May I know after how many transfusions , spleen increases. If one starts transfusing for a year or so , will the bone marrow stop producing hb and get transfusion dependent?