Discussion Forums > Working Towards a Cure
situation changes for me...
Canadian_Family:
Micky,
Your son's spleen is enlarged which is a little worrying and you realized why it was enlarged. It is all because the spleen was working hard for quiet some time to destroy low quality RBC produced by your son's bone marrow, the bone marrow was working hard to produce enough RBC to cope with the hb requirement of the body but due to low hb the body requirement was never satisfied, the bone marrow worked hard and keep producing low quality RBC, the spleen keeps destroying it. Can you think how much stress your son's body was taking. Do you realize since spleen worked so hard and since it is enlarged and so its capacity to destroy the RBCs in future. The over working of bone marrow can lead to deformaties in a child and osteoprosis.
Alomost everybody on the forum tried to give you advice to avoid Mr. Mathur but remained on guard with you providing support and advice. You wrote that Mr. Mathur is annoyed. Can you ask Mr. Mathur what plan he has for the enlarged spleen (a major source of destroying the RBC). Obvoiusly, he does not know enough and not realize the implication of his own treatment.
I am so upset right now, your son is dear to us all please take care of him.
Andy Battaglia:
Micky,
You are doing the right thing at this time so please be strong. It won't be as bad as you think. Kids get poked with needles all through childhood. Keep your child occupied during the transfusion. Read to your son, share some special time with him. When I visited the thal center in Dubai and saw the young kids getting transfused, there was no sadness. There was just a bunch of kids playing games, watching tv, and having fun while they transfused. Your approach can make a big difference. Go in with the attitude that you will be spending some quality time with your son and try to make it a fun experience for him. The context that you create can make a big difference in how he reacts to the situation. Don't ever show fear as your son will see it. Be strong and think about the friends you have here who want to see the best for you and your child.
I also want to repeat that a one time transfusion will not make your son transfusion dependent. I am absolutely certain your son is an intermedia and not a single person in this group can tell you yet if your son will become transfusion dependent. Only time will tell. Hb level is not the sole criteria for determining when and if an intermedia should transfuse. Your son needs blood now because of recent illness. This is common among intermedias, but it does not mean that this will be his routine. In addition to Hb level, the whole clinical picture must be observed. Bone development is a key. If your child does not have proper bone development and is showing abnormalities, regular transfusions will be required. If bone development is normal, even if slow, and the rest of his clinical picture is satisfactory, regular transfusions should not begin at this time. Only a competent doctor who understands thalassemia and specifically thal intermedia, can help you make this decision. Thal intermedia is a tricky condition and it takes a trained doctor to advise you correctly. I hope you will have your son throughly examined and that his Hb is tested regularly. As the parent, you have the responsibility of being objective and honest about his health. When you can do this, you will know when your son needs help. If his health is suffering, you must get him transfused. Please talk to a medical doctor who understands thal intermedia. Many intermedias can live without transfusions but at times, a transfusion may be necessary. The fact that your son has maintained an Hb of over 7 when not sick does give hope that he may fall into the category of intermedias who do not transfuse regularly. I would say that at best, Dr Mathur's treatment has resulted in some small Hb increase, but I feel you might get the same effect from much more inexpensive methods like wheatgrass and folic acid.
Do not rush into regular transfusions until you are certain your son cannot maintain an Hb of at least 7 as regular transfusion will make him transfusion dependent. If his Hb has dropped back down below 7 after a few weeks you may have no choice but no one knows if this will happen. The months ahead will be very important in determining your son's future. It is essential that you find a doctor who understands the differences between major and intermedia and which criteria must be used to make this determination about regular transfusions.
None of us have seen your son. We don't know how he looks or what his activity level is like. In this group we have heard how Manal's son is a bundle of energy in spite of low Hb. Hb is one factor but not the only one. It is very important that you are objective when assessing your son's health. If he can keep up with the other kids, and seems normal, then you may be able to avoid regular transfusions. If he is regularly sick and lacks energy, you may have no choice. Please step back and try to make an objective assessment of your son's health, as this will aid the doctor in determining whether regular transfusions should begin. We can give you information and give you examples for comparison but we can't make this decision. Please pursue proper care from this point on. There are many good medical doctors in India. Always seek competent care for your son.
Andy Battaglia:
Transfusion from parent to child is possible if there is a match. However, there is one very important process that must be done to make sure the blood is safe. Some years ago, a child in Australia got the hiv virus from a transfusion in what doctors called "a one in a million" chance. Odds mean nothing when it is your child. In response to parents who wanted to provide their own blood to their child, the hospital established the following criteria. Please take note of this one crucial guideline:
Directed blood donation from first-degree relatives is associated with an increased risk of graft-versus-host disease. To prevent this, all directed donations must be irradiated prior to transfusion.
http://www.rch.org.au/bloodtrans/circumstances.cfm?doc_id=9184
--- Quote ---Directed Blood Donation at RCH
*
Safety Issues
*
Blood Group Compatibility
*
Eligibility for referral
*
Steps for directed blood donation
*
What does a directed donation blood pack look like?
Directed blood donation of red cells, from parents to their child may be available in certain circumstances. The following information is provided as a guide to determine which families may be eligible for referral to the haematologist for further discussion, blood group testing and referral to Australian Red Cross Blood Service (ARCBS).
Safety Issues
Parents may request directed blood donation in the belief that this is a ‘safer’ form of transfusion. Several large studies have shown that the prevalence rate of infectious disease markers is not necessarily lower in directed donors compared with volunteer community donors.
Directed blood donation from first-degree relatives is associated with an increased risk of graft-versus-host disease. To prevent this, all directed donations must be irradiated prior to transfusion.
Blood group compatibility
Being the ‘same’ blood group as the child does not necessarily mean that a parent’s blood is compatible. The haematologist will take into account:
*
the child's blood group
*
the potential donor’s blood group
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if the child is a neonate - the maternal blood group, including presence or absence of atypical antibodies and ABO antibodies
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Kell compatibility - it is the practice of the RCH Blood Bank to issue Kell compatible blood to female transfusion recipients
Eligibility for referral
The following criteria must apply before families are referred to the haematologist for further discussion:
* There must be a reasonable likelihood that the child will require at least one blood transfusion. In most cases this will be elective surgery with a greater than 10% likelihood of requiring transfusion.
* The transfusion episode should be expected to occur within a single episode of care and with the expectation that the likely transfusion volume can be met by a directed donor.
* The alternatives to non-directed (homologous) blood including autologous pre-donation, blood salvage and other techniques are either not appropriate or not available.
* There must be adequate time for collection. ARCBS requires a minimum of five (5) working days between blood collection and likely date of transfusion. More time will be required when more than one unit of blood is requested.
* The parent(s)/guardian must be eligible to donate blood and fulfil all ARCBS donor eligibility criteria.
Referral is not appropriate in the following circumstances:
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Mothers who have had premature rupture of the membranes (PROM) or chorioamnionitis, who are febrile or taking antibiotics are not eligible to donate blood because of the risk of bacterial infection.
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Patients who have an anticipated need for Fresh Frozen Plasma (FFP) and/or platelets are unsuitable for directed donation.
*
Directed Donation for children with malignancy who may require future bone marrow transplantation is not recommended.
Steps for directed blood donation
1. Does the clinical situation fit with the guidelines above?
If yes, a referral may be made:
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for outpatients refer to the Transfusion Clinic - held weekly on Monday afternoons. In general, referral should be made four to six weeks prior to elective surgery.
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for inpatients referral can be made directly to the Haematology Registrar. Please note the minimum time required.
The referral must provide the following information:
*
date of the planned transfusion
*
procedure being performed
*
anticipated likelihood of transfusion
*
number of units required (total anticipated blood requirement)
2. The Transfusion Clinic
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The haematologist will meet with the parents to discuss the issues and arrange for parental blood group testing where appropriate.
*
If parental blood group testing is compatible with the child, the haematologist will refer the parent to ARCBS for blood collection.
3. Provision of directed blood donations
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ARCBS will collect blood from the eligible parent. Once infectious disease screening is complete (and negative), the directed unit will be forwarded to RCH Blood Bank.
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A crossmatch request with recipient blood sample must be received by the hospital blood bank not more than 72 hours before transfusion. The request form must indicate that Directed Units are available in addition to the usual information.
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The RCH Blood Bank will issue the directed unit(s) to the child if required.
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In the event that a patient requires more blood than the directed donor has provided, the directed units should be used first.
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Any unused directed units will be destroyed on expiry. Directed units will not be re-issued for transfusion to any patient other than the intended recipient.
4. Administration of directed blood donations
Blood product administration, investigation of transfusion reactions and all other procedures relating to the transfusion of directed donations must proceed as per established hospital guidelines for the transfusion of non-directed blood.
--- End quote ---
Zaini:
I,ve also heard that a close relative should not be the donor,specially if you wanna go for BMT in future,plz check this out with ur doctor.
Micky,
I know he would cry,ofcourse it's his first time,but plz rest be assured that it's for his safety and health,be strong your self ,try to divert him with new toys or anything he likes,wish you good luck.We are all here for you.
ZAINI.
Sharmin:
my thoughts are that he should be on a hypertransfusion regimine until his spleen and liver return to their normal size.
What are your thoughts andy?
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