Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: kabir_love on December 28, 2007, 07:47:26 AM
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hey everyone, now its been more than 12 months. exactly about 15 months now. till all this time first 1-4 months not good i can say as hb from 7.5 droped to 6.3 but then stable...5-8 months okk as hb was stable and show little up to 6.6 something.. then 8-10 were stasifactory as hb raised to 7.5..... mathur promised after 8 months hb will be 8 above. but never went still we are happy.. then mathur said to do the 8 months course again.. so we started again like before.. now its been 6 months and i can say physical condition, weight, color, activity totaly as a normal boy, so we thanks to him atleast we dont have to see the nightmare of blood transfion ever... and now we dont even do the hb test fro my son for 4 months. no need also as i can see by his condition if hb went below and thanks to god i had not seen that after the 6 months of course..
but there is always a fear inside that awakes us in the night many times. so again i really pray to god best for every1 including me.
regs
micky
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Congrats Mickey :thumbsup
Though i would recommend a regular hb test,just to be on the safe side.
ZAINI.
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Please Micky be very careful. Always get his Hb checked regularly.
Wishing you all the best.
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ya hb is very much in between 7 - 7.7 as per last test. also now mathur told to do another test related to bone marrow function in the body, as i consult with my cousin brother who is a child specialist and he said if this test some good report then it means bone marrow is starting doing its work in the body.
so will do the test in march as doc said. lets hope for the best.
regs
miky
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That's great, Micky! I would also recommend shorter intervals between hgb checks, though. Just to be on the safe side, as the others have said. Best of luck to you guys. My prayers are with you. :hugfriend
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14-feb-2008 today hb report is 7.0, ((10-jan-2008- hb report- 7.0))... today also i had done all test for counts and many other what my peditrition told me to do the complete checkup... reports ill post here on monday(18-2-8).
i hope dr. mathur had done something that hb is stable and i hope rest things are working well atleast this is avoiding BT. also i had consulted here DR. GETA SHEROFF she had done good research on stemp cells.. so we visited her and after these reports that she said we can undergo her therepay aswell, as she said she will inject stempcell she had ready in her laboratory , for which she said will be no side effects if body reacts with her stemp cell then the missing blood chain will be formed and she is hoping that my son is 2 year and after somtime the chain will be permanent. as per her there is no side effect and we can go together with hemopathic treatment. so i hope if dr. mathur has no prblme aswell then we will go under this treatment next week.
regs
micky
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Hi Micky,
Stem cells are not like medicine. You just can't cook them up in a lab and inject to anyone! They have to be harvested from other donors. Like all cells there is a compatibility issue. These cells can react against the patient in form of Graft Vs. Host Disease which is one of the main concerns with BMT.
Please don't put your child's life at a risk for the sake of someones experiment. Make sure that they are correctly matched with all criteria for stem cell matching like HLA.
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Micky,
We just can't be sure of Dr. Mathur's treatment at this time, there are so many if's but looking at your dedication you can decide to continue. However, given your meeting with Dr. Geta Sherrof and her treatment option I think you are entering dangerous waters. Please listen to Sajid and keep us posted.
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What is this stem cell therapy? is it a type of Bone marrow transplant? I have never heard of it.
and Who is Dr. Mathur. I have never heard that Homeopathy can be used for Thal treatment. We use homeopathy for cold and cough and minor cuts. Is he genuine?
Mickey, Please do not use your precious child for someone else's experiment. I pray that your son remain healthy. I can totally understand your desperation to try any claims to cure your son. But, please be very careful. Correct and proven treatment in early years of a child's life is very important for their proper growth and development. so, please be very careful.
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For those wishing to research this, the correct spelling of the doctor's name is Geeta Shroff, of Nu-Tech Mediworld.
DR. GEETA SHROFF
Email: geetashroff@hotmail.com
Mobile Telephone: +91-9810061275
Dialing from the United States: 011-91-9810061275
Partnering Physician and Anesthesiologist: Dr. Ashish Verma
Mobile Telephone for Dr. Ashish Verma: +91-9810156915
Nu Tech Mediworld (New Hospital)
Nursing Home
H-8, Green Park Extension
New Delhi – 110016
Telephone for Green Park Hospital: 64612855
Address for Original Hospital in Gautam Nagar:
Nu Tech Mediworld
487 – Hardev Puri
Near Father Agnel School
Gautam Nagar
New Delhi – 110049
Telephone for Gautam Nagar Nu Tech Mediworld:
Reception (Vandana is the receptionist)
26560089
26565548
http://amandaboxtel.wordpress.com/about-dr-shroff/
Dr Shroff has made many controversial claims and has presented over 100 cases where she claims her therapy has helped many different ills, including spinal injuries. If anyone has more info, please provide.
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thankx sajid.
well wht you said , dr. geeta shroff said same only as she said like blood group should be matched and its same she said she has much of the stemp cell in her lab from many donors. rest as she didnt explain much as she said she need all reports before dicussing furthur so we will meet her on monday i think after getting all reports.
well im not taking her treatment like that only. i will see some of her work on other patients first and report then ill decide. also may be once we show her reports then we will do the matching.
but still is there any side effect after matching?? as per her statment if body adapts them then its good otherwise they would simply be a normal waist and flush away.
rest too much confused myself ...
regs
micky
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please suggest.. like after HLA MATCHING for stemp cells. then should i undergo this geeta sheroff treatment. giving stemp cell daily by injection to my son intially phase1 for 3 months to see the effect.. if ok then phase 2 and phase3 for 3 months each... is there side effects and safe
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I haven't ever heard of STEM CELL THERAPY,i know what is STEM CELL TRANSPLANT,but i think it's done after giving chemo first to the patient and then matched donor's stem cells are entered into the body so they start making new and non defective RBCS. and as far as i know that's a complicated procedure also including the risk of GVHD as in BMT.So i am not sure if this therapy is genuine.
ZAINI.
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hey every1,
my son had a fever and we really suffer a lot when this does as it really kills the growth of my son as his hb is also not much. well now after 2 days finally fever is gone. but now he is little week, little spleen was enlarged but now seems ok. dr mathur has changed the medican. rodex and give us the new rodex now to start the course
its really long time dr. said thing will be ok in 1 yr but now it seems it will go for another year but all this time atleast other things were stable hb is 7.0 for all this time , i had done all the test of my son and reports were not good. i mean hbf is same as before 89.9% till today. rest lever and other blood reports were ok. wbc count ok, rbc little less then normal should be.
but anyway we will do the test again after 15 days from another lab. to reconfirm this all.
and rest all i hope is good.
micky
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bad news. my son had fever and we tried to avoid them so we gave me crocin medican from day 1 of fever and in 3 fever though he was fine but doctor said that fever remains inside and thus gave too much weakness to my son and he cant walk also so we checked his hb and is was 5.9, we were really soo worred and nothing we could think of. but as this happened before also last year but my son recoverd in 7 days to normal that time we didnt checked the hb. so this time we are watching very closely to him as dr. mathur said he will definately recover in 7 days otherwise we can take blood transfusion. im soo worried i never wanted BT ever for my child and look for alternative way. now im going to hosiptal for HLA typing to match my son if with any one in my family as i really will go for BMT then.
im so depressed.
micky
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i am so sorry Micky, hope his Hb will recover soon ,please keep monitering him
Wish you a speedy recovery
manal
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Hi Micky,
I am very sorry to know that your son HB has been dropped so much. I know its very depressing for the parents when they see there liittle one doing well and all of sudden they catch some infection and there nos. go down. But pls. don't lose heart and have faith in GOD.
I hope and wish him speedy recovery.
with best wishes
Dimple
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Hi Micky
Viral infections can really take their toll on children. This is the first time his hb has dropped this low and can understand how depressing it can be. Are you still giving him carao? Although it has not improved Hassan`s hb I have found that it gives him instant energy. Also give him a baby massage with olive oil or sweet almond oil(Roghan badam shirin), it will give his weak legs a little strength. Inshallah his hb will recover soon like before. Wishing him a speedy recovery
MAHA
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Hi,
I wish your son a speedy recovery,viral infections or fever do take their toll on kids,Zainab is also suffering from fever,i wish it will go off soon, or her hb will be lower then usual at the transfusion :(.
ZAINI.
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Micky,
Please don't get upset, I am sure your son will recover soon, our prayers are with you. I read you never wanted a blood transfusion for your child and you were trying alternate ways to avoid the BT. Please be assured blood transfusion is a life line for thal major children and there is absolutely nothing wrong with it. Everytime we take my daughter to BT and we see her happy and energized, it makes us believe that thal major is manageable. If the hb of your son won't improve than please don't hesitate to have a BT, it is perfectly fine. You tried your best and besides you still have a chance to continue trying alternate therapies alongwith regular BT.
Please keep us posted on your son condition and remember we are here to share and help.
Thanks
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I'd like to add that one time or occassional transfusions won't create dependency and are sometimes needed to maintain health during illness. Do not hesitate to take a one time transfusion if it is needed.
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:agree With Canadian Family and Andy.
ZAINI.
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Hey Micky,
We don’t want you to be depressed or loose any hope.
You are a source of inspiration for lot of us, we always look forward to your ever encouraging posts suggesting new treatment or advice.
I expect you would stay calm and take correct decision for your kid, I am not an expert but from what I have read and experienced so far is do not keep him at a low Hb < 7 for very long time.
You can try wheatgrass therapy; this may help as it has in most of the cases and esp. with kids.
I am sure with a never tiring dad like you, your kid has nothing to fear about, your son will recover soon, my family prayers are with you and your lovely kid.
Cheers,
Mudit
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thanx .. thanx a looottt all of your for your support. i think that typing your replies you really prayed for me. and guess what.. my son had recovred.. he is really very much prefrect in last three days i saw 25% imporvment every day. and today really god helps he is fine..
we will test hb on suday and hope its recoverd.. but now i m soo much scared im doing the aftermath. and getting done his hla typing and checking the match for him we hope we find is matched if gods really want to help us. i must have this done so that in future something like this happen i ll do the BLOOD TRANSFUSION that day and next day go for the BMT.
hope the need dosnt arises.
thanks a ton for all of you.
micky
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finally what we not wanted is coming up.
we went to check our son to dr. thal. specialist. she check my son and suggested us for blood transfuse. his spleen is enlarge about 3-4cms. and liver also little bit .. she said if we avoid this then later for future we dont have much chancnes for stem cell or bmt. even if we have matching donor. now just 2 days we have to decide what to do. well i had done booking for blood transfuion and im giving my blood to my son. dr. mathur donsnt want us to do the blood transfusion and is annoyed by us, i m soo much confuse what we have to do. god knows..
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Kabir_love,
You must do what is best for you son - you have entrusted your son's life with Dr. Mathur for this long!
I am sorry to tell you that the blood transfusion, which you are so afraid of is not so bad. Most children who are
transfused (as required) are healthier than your child is right now.
My son will be 10 years old this year - and (thank god) he has NEVER had an enlarged speen or liver. In fact, doctors who don't know of his thalassemia are not able to detect any signs of his thal. These children are happy energetic and capable, because they don't have low hg to struggle with. Have you seen pictures of these beautiful children in the gallery? You don't need Mathur - take care of your son - give him the conventional treatment for now and soon enough there will be easier - more valid forms of treatment - such as Hemaquest - where you don't need to make yourself and your child suffer -hoping that you can attribute some negligeable change in hg to this Rodex business. This is only my opinion - we are on YOUR side Kabir - and on you son's side. Maybe, Andy can give you an opinion as well.
Take care and god bless,
love Sharmin
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My son will be 10 years old this year - and (thank god) he has NEVER had an enlarged speen or liver. In fact, doctors who don't know of his thalassemia are not able to detect any signs of his thal. These children are happy energetic and capable, because they don't have low hg to struggle with. Have you seen pictures of these beautiful children in the gallery? You don't need Mathur - take care of your son - give him the conventional treatment for now and soon enough there will be easier - more valid forms of treatment - such as Hemaquest - where you don't need to make yourself and your child suffer -hoping that you can attribute some negligeable change in hg to this Rodex business. This is only my opinion - we are on YOUR side Kabir - and on you son's side. Maybe, Andy can give you an opinion as well.
Vey well said Sharmin,
I am of the same opinion,micky please stop this treatment and start taking care of your kid your self,once you'll transfuse your kid you'll see the difference,he will be energetic and will eat healthy,transfuse him on time and he will grow properly and will be able to enjoy his life to the fullest,plz think about it, i know you are spendinga big amount on dr mathur's treatment,and you said yourself you are not getting what you wanted,BLOOD IS A SOURCE OF LIFE FOR THESE KIDS this is atleast what i think,but when ever my daughter gets a transfusion i see a clear change in her attitude, she is more happy and joyful,she eats well. I am a thal minor and been a victim of low hb my whole life,i know how cranky and tired i feel when my hb is low,my body starts aching,so when i think about a kid with as low hb as 5,i can understand how they muct feel,these are not only words i really can feel it,PLEASE think about it micky, if you were getting benefited from dr mathur's treatment it was alright,but it's beena long time and you haven't seen any results,you can try wheat grass along with the transfusions,may be it will work and you'll have to give your son less transfusions.As Sharmin said about her son, same is the case with my daughter,physicians normally never detect her condition unless i tell them about it,she never had enlarged spleen or liver, Thanx to ALLAH.
ZAINI.
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Hi Micky
Did they say it was ok for you to be the donor for your son. Here they say it is better if the donor is not a close relative. Maybe Andy will come up with an explanation.
Take care
MAHA
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monday goin for 1st bt. my son will cry a lot but. have to do it now...
regs
micky
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I am sorry..why did you wait so long to transfuse your son? :mad
Sorry but reading this article has made me alittle angry..I have no other comment just what I wrote above..
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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.
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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.
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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
Directed Blood Donation at RCH
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Safety Issues
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Blood Group Compatibility
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Eligibility for referral
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Steps for directed blood donation
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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:
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the child's blood group
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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.
*
Patients who have an anticipated need for Fresh Frozen Plasma (FFP) and/or platelets are unsuitable for directed donation.
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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:
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date of the planned transfusion
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procedure being performed
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anticipated likelihood of transfusion
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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
*
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.
*
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.
*
In the event that a patient requires more blood than the directed donor has provided, the directed units should be used first.
*
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.
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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.
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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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I don't think hypertransfusion will be applied unless it is established that excessive hemolysis is taking place. At this point, it is important to take one transfusion and see what happens to the Hb after that and how quickly it drops. The spleen is commonly enlarged in intermedias and is one of the reasons that splenectomy has traditionally been part of the treatment for intermedia.
Because of the lack of consistent medical intervention in this case, I don't think we really know enough to speculate on what course treatment will now take. It is important for Micky to understand that regular medical treatment is necessary and only after talking with a competent doctor, will he be in a position to know what to expect. I realize this is a trying time for Micky and I don't want to alarm him with speculation. We haven't seen his child so we are not in any position to tell him how his child is doing compared to other non-transfusing intermedias. This is why it is essential that a doctor who understands the difference in the approaches to treatment for intermedia and major is involved in his treatment.
Micky, I hope you take notice of the post I made about blood donation from close relatives and that the blood must be irradiated before given to the child. The risk of host vs graft disease is very real and should not be taken. This cannot be overemphasized and lack of facilities to irradiate the blood is why our fellow members have been told not to donate blood for their own children. Also, if you have paid for further treatment from Dr Mathur, please use it as it may have some small positive effect on Hb levels for your son.
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hi. transfusion is done.. very painfull at starting for 3 hrs. then my son forgot and started playing but cant forgett this day ...
please now advice what to do. at the time of bt my son hb was 5.3, and he was given 200ml + about 250ml of blood, doctor told me spleen and liver is enlarge but with regular blood transfuion it wil get normal, and i should take more of bt in 3 week time for this enlarge spleen and liver untiel they get normal. but as what andy says i should rather check this hb level , how it goes down so then should i wait?
otherwise also at that time my son was very active he was eating and playing though he dosnt walk for long time but for 15-20 min he can walk and dance like normal kids at hb level of 6.
now for slpeen as doctor said its 4-5 cms long he touched the stomach and observe this and for lever also , now we plan to go and o the ultrasound of stomach to see the exact of how much is slpeen and liver was enlarged.
so please how much HB SHOULD I MAINTAIN BEFORE GOIN TO BT incase hb is not falling that fast, also we had done the test for TYPE OF THALASSEMIA MUTATION for my kid to know the exact type,i m aware whatever the result comes out so i need your advice on that also.
is there anything to worry about for enlarged slpeen 4-5 cms and liver- 6 cms?? or with regular blood transufion i can relax on this?
regs
micky
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Hi Micky
250ml?????????I am shocked. Micky the amount of blood transfused should be between 12-15ml/kg. Was he monitored for BP, pulse etc... throughout the transfusion.Was his post transfusion hb checked? Hassan weighs 11.6kg and he was given 170ml. When too much blood is transfused at one time it puts a lot of pressure on the heart.
take care
MAHA
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at the time of bt his hb was 5.3, and weight was 9.2 kg. he was not check for bp or other things at the time of blood tranfusion but various test was done before starting it. doctor said the spleen and liver is enlarge and would take 4-5 months to get back to normal
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Hi Micky
I feel he should have been given a max of 150ml this time and probably followed by 150ml again after 3-4weeks instead of giving 250ml at one go. This is what our hema told us . Are you taking him to a thal center.
Take care
Maha
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Hi Micky,
I think 250ml is excessive, my daughter is 16.5kg and she gets 236ml every four to five weeks. I agree with maha that 150ml should be repeated after 3-4 weeks instead of 250ml at once. There has to be a regular blood pressure and pulse check up every hour during the blood transfusion to monitor the heart activity.
Where did you take your son for transfusion, if it was regular hospital set up and not a thal specialist clinic than the doctors may not know enough about the thal blood transfusion regimen.
I don't think the enlarged spleen and liver will come back to normal size in 4-5 months, it takes years and in some cases you have to wait for your son to grow enough such that the size is okay for him. When my daughter was first diagnosed as thal major at the age of 6 months, her spleen was already enlarged 1cm, we were advised by the doctors then that we have to wait until she grows. However, if your doctors are telling you 4-5 months than stay tuned for that.
I think you are on right track, please continue to see specialised thalassemia doctor and keep us posted.
Thanks.
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Micky,
Because your son's Hb was already so low, he may need another transfusion in three weeks. It might take a couple transfusions to see what Hb level he can maintain on his own. If it continues to drop between transfusions, he will most likely need to stay on regular transfusions. For now, monitor his behavior and observe if there is a significant change in his energy level, his color, and his overall health. If these all improve, you may decide that transfusion is the best for him. I would also suggest starting him on some form of wheatgrass, along with IP6. Both are safe to take at all times.
Of course, we are all here to help guide you through these times.
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All the best Micky,
We hope that your son's health improves quickly. We are all here for you. Hopefully your son will improve after a few transfusions and will be able to maintain his hg on his own. We're all here to support you.
Sharmin
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Micky,
We are praying for your son.
:pray
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hi every1,
doctor suggested for 200ml of blood , but as nurse wasnt paying much attention also we were also not that alreat cauz my son was cryin a lot so by time we stop bt it was about 250ml given , we did called doctro for this and she said it ok and give more of liquids to my son.
also after bt today and yesteardy my son stomach is out and little hard we called doctor she said it happen after bt for 2-3 days.
ip6 i want to start to maitain iron from starting only. so how much dose should i give to my son? as its one blood trasfuion is done yet?
please suggest.
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now its 1 week after 1st blood transfusion. well i had never seen my kid so enerjectic and happy playing around the house im happy but the fever of bt always hinders as in time the iron level will be next problem.
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Hi Micky,
See, this is the reason we were insisting on transfusion.
With better Hb levels his quality of life will improve and you will see improved growth as well.
Just comply to the proper treatment and you will have a healthy, happy strong child.
Best wishes for the future.
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I am very happy for your son Micky,blood transfusions will help him grow normally and strongly,and he'll lead a fairly normal life.I ron over load is definitely a problem but fortunately we are in age og advanced chelators,main point is being compliant.
ZAIN I.
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Hello Kabir
Please talk to your Doctor about hydro oxy urea It is a drug many of us are using with positive results. Also do give him fresh wheat grass juice. AS he is 3 dont worry . Just monitor his hb. Please keep it ABOVE 7.
For my son we hv given first tran when he was 3. After that wheever his hb fell to 6 we had to give him trans. He has 4 transfusion so far, he is 8 years now. We are continuing on hydro oxy urea and giving recormon.
Thanks
Puja
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Hi Mickey,
This is a bit of a sensitive topic for me. Normally my HB levels are maintained above 10 prior to my transfsuions which was okay as my energy levels remained stable. I have seen though as soon as it drops under that now, i feel tired and cranky....I even drop off to sleep in places I would not normally. I know that you are trying to do the best for your son and he may not understand much now but he would have a much happier time once his levels are higher. Of course he would cry for the transfusions part...I did too...actually he is much luckier than me as i started at 5 months of age and am told that I really gave the adults a hrad time-pulling at the line etc...but I am MUCH happier for it now, being able to live with fewer complications....please consider everything everyone is telling you....WE LIVE IT!
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Well said B Thal Girl :thumbs
ZAINI.
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thanx all
my son is being test for hydroxuera.. result will come to us in 1 week. i hope if its goods for my son then we will start that immedeatly as i have very less knowledge for hydroxurea till now, im waiting for the test then i ll do research on thi
also i have start my son phytic acid 500 mg daily.. in the morining after this 1st blood trafusion only. i hope its ok for me to start at this time or do i have to wait.???
regs
micky
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Hi Micky,
I guess that I must say that I dont envy you at all for I am reminded from time to time that the parents have more heartache than the kids especially when the children are young. I know that I might be sounding heartless as well but you will get used to it....we all had to. I think that you will also be amazed to see how easy your child adjust to it once he senses that you are also okay.
My parents spoilt me badly when i was small and always took a new toy along for each transfusion...was expensive but it made me forget what I was actually going through.
I know that there are other inducers which would also support us and help us to have to be transfused less and less but i am sure that you want to see your son exceling in school and sports etc. Look at how happy Zaini was when Zainab did well!!!You have to do what is right first. Even if the inducers work, the cbc's will show his levels and determine exactly how much blood he needs.
Please understand, I know how it feels to have a lower than normal hb and its not something I enjoy at ALL! Give him a fair chance, remember we understand ...we all live it. I know for sure that my mother and father kept praying for a miracle and also wanted to try everything on the market just to get me better. They also went to Italy three times just to beg Dr Lucarelli to consider transplanting with an unrelated donor...I am happy to say that they are much better now... :rotfl
So please he needs to be healthy now or his bone structure will also change .....