2 Year old daughter recently diagnosed with CF

[Mallika]

Hi Kapil,

We are Parents of 2.8 yrs old baby boy with CF Mutation F508delta from Bangalore. Hope your Baby is doing fine.

I guess CF in Indian Scenario is different. My son has frequent infections and problems with Mal absorption. He always had problem gaining weight but not height. It took our doctor more time to zero in on CF as he was otherwise active and healthy. Strangely his sweat chloride also came negative. He had oil in stools till we put him on Creon.

If it is not a problem, can we interact frequently to discuss, the medication, growth, and other options we have in India.

Thank,
Mallika Raghu

 

[kapsy]

Hi Mallika,

Just checked your PM and replied to it. Please check it.

Yes i too agree that CF is a very different disease in Indian scenarios and limited treatment options available and lack of knowledge among medical fraternity make it more complicated.

We can definitely remain in touch and can share our knowledge related to CF. I have provided my email id in the message. Please feel free to ask for any information, anytime

 

[kapsy]

Mallika,

I dont my reply has reached you or not as i m not able to track you so posting it here too

Hi Mallika,

I can totally related with your state of mind.

My daughter is 3.8 yrs old now and she was diagnosed last year in may when she was 2.3 year old. Since 1.5 years we are battling with CF and taking care of her with all the limited option available in India. She is good in height (3.2 ft) with weight around 14kg. She has lungs and pancreases issues.

Thankfully she is under treatment of a very senior Pulmologist and her doctor has vast experience of dealing with CF cases. Few month back, they had an annual CF meet in hospital where several parents participated along with their kids.

She is following her regular CF plan which includes Saline+Levolin nebulization, Creon, Multi vitamins. Since 2 months, her doctors has started her on low dose Azithromycin(Azee - Cipla). Yo ucan find it more about it here http://www.cff.org/treatments/therapies/respiratory/azithromycin/

We never tried any Homeo or Ayurvedic medicine. Some times we use to give her Vasaka (http://www.himalayahealthcare.com/products/pharmaceuticals/vasaka.htm) but still trying to find out its positives on her. Probiotics like yakult also helps.

Please let me know what alternate treatment you are following and how are the results?


thanks

 

[Mallika]

Hi Kapil, I am trying naturopathy and this is certainly better than other pathys. Heard there are good naturopaths in Delhi and that there is a institute in Simla. You should definitely try. Or give lots of fruits and sprouts in your daughters diet.

Working to considerable extent.

 

[Imogene]

We are a global community. I am sure there are brilliant doctors and researchers working on CF in India. At CysticFibrosis.com there are 44 registered members from India! Thoughts and prayers for the best care!

 

[kapsy]

We are a global community. I am sure there are brilliant doctors and researchers working on CF in India. At CysticFibrosis.com there are 44 registered members from India! Thoughts and prayers for the best care!

How to get in touch with these members who are from India. It will be nice to interact with people from same country as we know the limitation of Medical facility available here.

 

[RICKY1986]

Hi kapsy and Mallika
My niece is 4 years old. she is in India and suffering from CF, doctor prescribed a sweat test and her count is coming> 100. Please suggest what all hospitals or medicine you think are good in this case. Please reply soon.

 

[enniob]

It's not often you see LittleLab4CF make a mistake...one for my bookmarks

Thanks to Aleksandra for setting the record straight concerning Kalydeco. When I first ran accross it, I was reviewing the research and Kaly just had a number. Memory is not my strong suit and I will never feel bad being corrected. Western medicine has been shooting blanks at CF. The drugs in trial in genetic formulation, some public, a lot early in the pipeline someday will deliver. Seeing a wholistic practitioner need to be watched for sophistry. This goes for anybody claiming to be able treat CF.

 

[Anand]

Hi Mallika

I am Anand residing in Bangalore.
My son is 2.8 years weighing 11kgs.
I have seen him coughing when he runs. Every time he complains about stomach problem when he eats. We do not know whether it is nausea or stomach pain. He has vomited many a times when eating food. We have tasted the sweat in top of the head and it is very salty. His eyes is not very white as we see for other kids. His height is good and active. He had small lung or viral infections but not hospitalized. We had mentioned this to doctor but he had mentioned since lung infection is not very high he is not suspecting cf. I would want to test him for cf in Bangalore. Do you know which is the center I should go in BLR and what kind of test to be done. Pls help me out

 

[Mallika]

Hi Anand , Since you say your son's Sweat is salty, I can not help but think of CF. I am sorry. It 's good to get him tested for cf to rule it out. Please contact Manipal Hospital Airport road . They have the sweat test facility( It doesn't come out properly through). There in the genetics department, get an appointment with Dr Sridevi Hegde who can send your sons blood sample to Gangarams Delhi who can do genetic screening for some mutations. Genetic screening is a better test. Another option is CMC vellore where they do test for DF508. A visit to a ped pulmonologists like

Dr Ilin Kinimi - Manipal airport road
Dr Anil Sapare (UK return : has dealt with CF enough in past)- Narayana Hrudayalaya
Dr Sneha form CMC Velluru can help
For other info see Private message I sent across
and also check out http://www.cysticfibrosisindia.com/

They also do genetic screening at Hyderabad center of genetics and Manipal hospitals can also send blood sample there.

 

[Mallika]

Hi Ricky , I did not check this message earlier. A private message would have caught my attention straight away.
Anyways how is your niece now. Best place for treatment is with Dr Kabra in Aiims Delhi. He is the one who told the world that CF did not spare India and if properly diagnoised one can find 70,000 CF cases just in India.. I know there are few hospitals in Chandighar.
if you are in South India My earlier post to Anand answers your question. Forgot to mention Sooriya hospital in chennai in it.
I've sent u a personal message pls check it

 

[Sehar]

Hi Kapil.
I was just going through your details about the little girl. I can understand it very well. Because I have cystic fibrosis. But let me tell you that your daughter is lucky that she got diagnosed so soon. I was diagnosed only few years back and till then I led a miserable life. No doctor could diagnose me until I was 21 years and now I am 27 plus. I was given medications for Asthma, bronchitis and so on. But then I got an episode of Heamoptisis and there I met Pulmonologist who asked to get a sweat test done. It was unbelievable because I must have been a oldest Living case in India: surviving it so well. Now I live comparatively a normal life because at least I know what i am suffering from. I may not runa marathon but I can walk. I may not dance like dancers but I can enjoy the music. Dont worry and keep her check ups going. I know its very Difficult to find a good doctor and myself I have been changing alot..but then since I am into medical profession, I manage to get treated well.
For any experiences which you want to share or know anything which you are not able to, I will be happy to help. I already do participate in groups of Cystic Fibrosis Programs in Delhi Ncr.
Let me know If I can be of any help.
Love and blessing to your little Girl.

Regards