samyuktha' BMT

Dear Andy Brother and Friends,

                          Thank you all for your sincere prayers and positive words of encouragement.Without support from you guys we would not have come this far.

                            Samyuktha still has issues with her calf muscle pain.We were asked to consult a Paediatric orthopaedic Doctor yesterday.They took X-Ray of her leg and ankle joints and said that everything is fine.The ortho Doctor concluded that while Steroids do the good thing for the Host by fighting the Donor T-cells,it also causes significant issues to the Bones or muscles.Samyuktha has loss of calf muscle and weakness in legs.She walks like a toddler and that really pains me.But I am encouraging her to walk and making her do simple leg exercises to strengthen her muscles.She had issues with Heart burn and swallowing issues.KALONJI came to my rescue.I boiled few kalonji seeds,Yellow Mustard and Cumin seeds in water and allowed it to warm.Since she can take only boiled and cooked food I did this.I drained the spices and made her drink half cup water.Thank God,her swallowing improved and her heartburn lessened.She feels hungry because of the steroid MEDROL(20mg/day) but is hardly able to eat much because of tummy issue.

                           As you all said,even this will pass.God is Great.You guys are the best gift that God showed me when I had felt devasted after Samyuktha was diagnosed with Thalassemia 8 yrs back and I didnt know what the heck was that and how to cope with it.All your timely advises brought us this far.Please continue to keep Samyuktha in your prayers.
   
                            Tomorrow we have appointment with her BMT Doctor.Hope she will either reduce the Steroid dose or prescribe some medication to ease her tummy issues and leg weakness and pain.

Take care all of you.Love you all for always being there as a guiding light.

Regards,
Viji

I would imagine that magnesium deficiency is part of the problem. If the doctors agree that it can be done at this point in time. a magnesium supplement should be given, along with vitamin D.

Dear Viji,

I can imagine how difficult this stage is for you as a parent.  It's hard enough for parents when children have a cold or fever - thalassemia and a bone marrow transplant are very frightening for a parent.  These situations take so much for us to get through - you and your child have been through a lot - and at present you are still braving this difficult time.  I have no doubt that things will be good soon - but in the meantime we are all here for you.  I hope your child will be strong and healthy very soon. 

Best wishes and sending your family strength and prayers,

Sharmin

 

Thank you for the kind words Sharmin.

Dear Andy brother,

                        We had appointment with Samyuktha's BMT Doctor today.She said clearly that she is not at all worried about Samyu's  leg pain
 as it is anticipated with the use of Medrol.She said she is more focused on controlling her GVHD.She said Samyuktha can have all normal diet.No restrictions.Regarding her BP issue, 2 times ENVAS 2.5 mg is prescribed and we are asked to monitor her BP 3 times preferably.If BP is > 100 then medicine will be upgraded.For children SYS BP in the range  90-100 is fine.

                         The doctor also mentioned that since samyuktha was a Thalassemia patient before,leg bones will be weak.Natural calcium food is the best solution.Samyu is already taking Calcimax syrup 5ml that includes Magnesium and Zinc for 3 times and Z&D tablet once everyday.Already magnesium correction was given for 2 days last week.So  her doctor didn't emphasize on Magnesium correction.

Samyu has Tremors (shaky hands),leg pain,lack of sleep because of BP all because of Steroids.With the blessings of the almighty and good wishes of kind people like you,samyu will come out in flying colours in her BMT Exam.Please keep her in your prayers and thoughts.

Thank you all,

Regards,
Viji

BMT greatly depletes all nutrients. Once a normal diet is allowed, replacement of nutrients is very important.

Hello Viji,

Any updates on Samyuktha's recovery?  I hope she is recovering in leaps and bounds. 

Best,

Sharmin

Viji,
My prayers for Samyuktha's speedy recovery.

May god bless her and wish for her speedy recovery !!

I hope things are going well for Samyuktha.

Dear Friends,

                   Sorry for the late reply.Samyu had couple of admissions into hospital due to GUT GVHD in the month of December.Samyuktha is getting better day by day.In January,She had calf muscle wastage and was unable to walk more than a few steps and cried of pain.She also had High BP because of which she had lost sensorium(Memory) and was in a confused state of mind-All because of heavy dosage of Steroid medications that got accumulated in her body.With sheer will power she is fighting all odds and getting back to health.

                    She is on Immunosuppressant and Steroids with a few antibacterial and vitamin supplements.Steroids keep her hungry most of the time due to which she keeps asking for food.She has a moon face with big chubby cheeks which are temporary side effects of Steroids.She has mild UTI which is caused by Enterococcus faecalis.Doctor said we will try with oral medicine SEPTRAN P to bring it under control and if she still feels uncomfortable they will plan an alternative.Last month she had issue with E.COLI bacteria and was admitted for fever issues .Antibiotics by IV line was administered for a week and we got discharged.Praying the almighty that she should not have further health reasons for admission into hospital since she is hating the hospital atmosphere.Poor kid,she has fought bravely during BMT and post BMT issues and deserves a healthy and happy long life hereon.

                   Her Doctor has given the green signal that she can eat all cooked foods from vegetarian to meat.Can you suggest healthy foods recommended for post BMT kids that are healthy and wont add extra weight?

                  Please keep Samyuktha in your prayers.She has undergone so much physical pain and mental trauma.She deserves a quality life after her battle against THALASSEMIA with BMT.

Regards,
VIJI

Dear Viji,

Samyu has overcome so much. As always, I will continue to keep her in my prayers.  Thank you for sharing, as you have been in our thoughts.  I hope that her recovery is smooth now.  I'm sure that the long and healthy life you all have fought hard for is ahead.

Sharmin

I pray for a long, healthy, happy life for her.  Please wrap your Angel with big hugs and kisses from all members.

 

Dear Friends,


                 Especially Sharmin and Emby,It brought tears of happiness and gratitude in my eyes when you mentioned about Samyuktha having a healthy and happy long life ahead.My heartfelt thanks for such a kind blessing for my daughter from you guys.All of you are in my thoughts and prayers.Her 6 Donor Chemirism result was 100% Donor cells by God's grace.
Her recent POST BMT VIRAL MONITORING TESTS showed no signs of VIRAL INFECTIONS.
She is presently having issues with Bacterial infection in Urinary Tract and Doctor said we will give oral Antibiotic and then see if she needs another antibiotic course.

Her CBC values 3 days back were;

platelets  :  222000

Lymphocytes : 10

PCV  :39

Neutrophils  :80

Hemoglobin  : 12.9

WBC  :12600


CYCLOSPORINE LEVEL :  118.7

CREATININE  : 0.3mg/dL


REGARDS,

VIJI

Thank you for that update, I am so glad that the bmt is successful. God bless her with good health.

 

Sharmin

Overall, she has done very well. What remains is typical after a BMT. Her white cells will slowly recover, as will her immune system.

I am very happy for you. Her bone marrow is working very well and she should fully recover as time passes.