Pls. Advice

Hi Everyone

I am really very confused; I don’t know what I should do for my daughter. Yesterday I had an appointment with new hemo she is registered in American hematologist society and she asked me that we should go for bone marrow transplantation for my daughter.
Let me tell you my daughter had never received any BT. SO, it was really socking for me when her new Hemo asked me for BMT. She even told me that I should go to Dr. Neena Kapoor in Los Angels for second opinion.
Write now priya is taking hydrea and Recormon and she is maintaining her hb between 7.5 to 8 , but one thing which I am really worried about is that she is not gaining height and weight. From last 5 month she has just gain 1 cm of height and 2.5 kg of weight.
She is 7 yrs. old with 21.5 Kg and 120 cm.

I really need your guidance.

Thanks A Lot

Dimple

Hi i sugest to go to another Dr for consultant and take many opinion before you go ahead for BMT ..I stay with my wife thinking a bout BMT almost two years and after i got many consultant from many Dr even i went to prof. Lucaralli before i take my son for the first BMT..
                     any way good luck for you and your doughter
                                                       khalifa
                                               state of kuwait
                                         one for all and all for one

I have never heard of a non-transfusing patient undergoing a BMT. You can contact Dr Kapoor and ask. Most doctors will say it isn't worth the risk if the patient is not transfusing. Treatment would be considered a better option by most.

Contact and Additional Language(s) Information:
Address:       Childrens Hospital Los Angeles
Division of Research Immunology/Bone Marrow Transplantation
4650 Sunset Blvd., MS #62
Los Angeles, CA 90027
Email:       nkapoor@chla.usc.edu

Language(s) spoken, in addition to English: Hindi, Urdu

Children's Hospital also has an excellent thalassemia center.

Thomas Coates, MD
http://www.childrenshospitalla.org/body.cfm?xyzpdqabc=0&id=52&action=detail&ref=93
Children’s Hospital of Los Angeles
Los Angeles, CA
Ph: (323) 669-2352
Fax: (323) 660-9321

Hi Dimple,

It is quite surprising. Sorry to say it seems to me more of a suggestion from commerce point of view. Based on the information I have on the subject two things needs to be evaluated “explicit compulsion” or availability of 100% matched donor: First thing is ruled out in your case as child is not even on regular BMT. Even if second possibility is there, it has its own associated risk factor. Success rate at CMC, Vellore (Best in India) is 70 - 80%. I would not have taken the risk personally, therefore, nor shall I suggest. Enjoying and serving the gift of God is more worthwhile, I believe!

It is better to go for second opinion as Andy has suggested.

Best Regards.

Amrit

Hello,

Andy is right, your daughter is not transfusion dependent and treatment is the best option for your child. From what I know BMT is an option for patients who are transfusion dependent and are increasingly failing to maintain the required Hemoglobin. BMT option is regarded as last resort in many hospital settings. There are many risks involved in BMT and should be considered extensively.

Please get an opinion from Dr. Kapoor and put forward these your questions as to why your child is a candidate for BMT.

Thanks

Thanks A Lot Mr. Andy, Khalifa, Amrit and Canadian_Family for your support and prompt reply.

The same thing i asked to the Dr. that Priya is not being transfused even once and as i know BMT is option for regular transfused thal.
I will definitely write to Dr. Neena Kapoor to check what she has to say and I will update you accordingly.
As you all said I should look for treatment and I am really waiting for the results of biomolecular treatment which Manal is giving to her son. I hope this treatment should give good results.
But one thing really worried me is her height & weight. Can anybody pls. suggest me if I can give her some thing for this.

With Love & Regards

Dimple

Hello Dimple,

I don't think I can advise as I am neither a doctor nor a thal myself (so can't talk by experience) but I will try to give my view on your question.

BMT sure is a tough option. As many of the member has suggested, it would be a bad option for BMT. When I met Dr. Chandy in India even for those who are on regular Blood Transfusion are NOT recommended BMT with an unrelated donor. His reason, Thalassemia is manageable and it is NOT as severe as something like Cancer, where we can take a risk with BMT.

For Priya's height and weight, I think it is her Hemoglobin levels. I really don't want to scare you but Thal(Intermedia) is pretty complex and due to her low Hb levels, she might be having low weight and height. I think meeting or taking an opinion from a Thalassemia Specialist would be a good option. A visit to US where you can meet some of the best thal doctor's also would help, but with the insurance issues I am not sure how it works. If you go to India, I think getting an opinion from someone else like Dr. M. B. Agrawal can also shed some light on what can be done.

Hi Narendra


You are very true; it’s quite difficult to manage thal intermediate. Can you pls. tell me more details about Dr. M.B. Agarwal his e-mail, phone no. etc.

Thanks A lot.

Regards

Dimple

Dear Dimple

I suggest you evaluate priya at an endocrinologist as i did with my son. The endocriniologist also relates her height to the parents and this was very important to me as here in Egypt we have the tables of the height and weight according to the American standards which is not an actual measurement compared to Egyptians in general as we are generally a bit shorter. There is a known equation known for doctors where they put the height of the parents to see how genetically this goes with the height of their kids. Considering ''zero'' is the average, therefore + or more than zero is above average and lower than zero is below average. I was said that until ( -2 ) will be still acceptable. Also i was told that in bone age, untill two years less than the actual child's  age is still acceptable in chronic diseases

Also what is very imprtant is the rate of the growth which should be at least constant. You will know her rate when you compare her readings every three months to know her own rate of growth


Concerning the the BMT, usually all transplant specialist won't go for a transplant unless there is a risk factor. But almost most hematologist would agree to do a BMT for a non transfused patient as they regard transfusion independent to be a point of reassurance to the sucess of the surgery as ther are no different kinds of antibodies, no iron overload,......But all provided that you have a 100% match which is not the case in Priya's situation.

Please keep us updated and i will too regarding Ahmad's treatment

take care
Manall
Good luck

Hi Dimple,

The details of Dr. MBA is as under:

Dr M B Agarwal, MD,
Programme director, Haematology Centre,
Vijay Sadan, 168B,
Dr B Ambedkar Road,
Dadar TT, Mumbai - 400014
Phone : 91-22-24153790, 24142272
Cell : +91-98200-24850
Fax : 91-22 - 24140058
E-mail: mbagarwal@hotmail.com

I don’t know him personally. I had attended one of his lecture in New Delhi in conference two years back. He is very warm and knowledgeable.

I will also talk to my Hematologist in Chandigarh Dr. R.K Marwaha- a great selfless soul- if he can give you advice on net, I believe he certainly will once the reports are shown to him.

Best Regards.

Amrit

Dear Manal :Thank you very much for your advice. I always look foward to your post.
I am Looking for pediatric endocrinologist to get priya evaluated. And as you said  about her rate of growth which is actually bothering me cuase she had gain just 1 cm from last 6 month.
Regarding HLA mapping we have nerver checked priya with her little sister as i use to think that BMT is for regular transfused thal.

Thanks you very much  Amrit: I will try to write Dr. M B Agarwal and i will also scan her reports to see what he has to say about Priya. And pls can you give me mail of Dr. Marwah so that i can write to him also.

With Love & Rergards

Dimple:

 

Hi Dimple
120cm for a seven year old is a good enough height for an average Indian. I checked her height and weight in the growth chart and she was in the 50th percentile.You are probably more worried as her rate of growth is not constant. But I suppose certain children are different. My daughter shoots up in height  between june- sept, then the rest of the year she is relatively the same.Last May her height was 136cm and in aug it was 142cm and today I checked and she is 144cm( 9 years old ). So keep tracking and stop worrying. Priya will just be fine. Wishing her loads of health
Regards
MAHA

Hi Dimple,

The details of Dr. RKM is as under:

Dr Ram Kumar Marwaha, MD(Pedietrics),
Postgraduate Institute of Medical Education and Research,
Chandigarh 160011
Phone : 91-172-2755303,
Cell : +91-98154-6662
E-mail: rammarwaha1@rediffmail.com

Best Regards.

Amrit

Hi Dimple,

I forgot  to add  the Dr. RKM's addresss which is as below:

H.No. 120, First Floor,
Sector 11A,
Chandigarh -160 011.

Best Regards.

Amrit

Thanks a Lot Maha for your concern. 
Actually you are right her rate of growth is not constant. I am planning to see pediatric endocrinologist to check what the Dr. has to say. Thanks again.

Thank you very much Amrit.
 I will write to Dr.RKM and see what he has to say. And i will update you.

With Love & Regards

Dimple