ITP: Hi, I'm Sridhar from Bangalore... - ITP Support Assoc...

ITP Support Association

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ITP

SRJEER
SRJEER

Hi, I'm Sridhar from Bangalore India. I have a 11year old son having ITP since last 11 months. His platelet count is 4000 as of now. I'm worried.

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SRJEER,

Sorry to hear that your son has been struggling with ITP.

The most reliable sources of information for all of us ITP sufferers is at the following links ...

1. ITP in Children ....itpsupport.org.uk/index.php...

2. ITP Current Treatments .... itpsupport.org.uk/index.php...

3. The PDSA ... pdsa.org

4. ITP Support in India .... globalitp.org/index.php/ind...

Hope all this helps.

SRJEER
SRJEER in reply to Anthonyh7

Thank you ,that was helpful.

SRJEER
SRJEER in reply to Anthonyh7

Hi Antony, My son is doing better, platalet count is now 23000. Hoping to increase.

1st line of treatment is Steroids (for a period). If Doctor says so, start it straight away in accordance to the prescription. This will lower his immune system by making the WBCs kind of inactive (sedated). Along with the Doctor may prescribe supportive medicines or may be infusion of Platelets. Infusion of Platelets is a very temporary relief. Till date no confirmed therapy for reversal has been found. This is not to scare you, he will live a normal life but with medication. My wife was also diagnosed. Except that she is on non steroidal medications, She is fine in terms of energy. She is a working professional and her job is a high demanding one. Even if removal of spleen is suggested, that should be the last resort. You may come across people who may suggest Ayurvedic, Homeopathic. Try them too. But. don't stop what your Doctor has prescribed. 1st target is 30 K of Platelets. 2nd should be 60. 3rd should be 80. for an ITP patient, anything above 60K is OK. To share with you, my wife's platelet count hovers around 80+K and she now gets the symptoms sporadically (which are ok) or no symptoms at all. This is all I know and hope that this may help you in understanding the Line of Treatment. Its all about living healthy with a condition. Best wishes.

SRJEER
SRJEER in reply to sunilleo

Thank you si much sunil. He was given ivig 40mg an the count today morning was 10k. Hoping to increase . Thank you so much.

Traciek
Traciek in reply to sunilleo

My 19 year old daughter has had ITP for three years with platelets between 4 and 30k. The doctors at Stanford Children's Hospital do not treat the Platelet number...they treat if there are symptoms that are dangerous. My daughter has only taken prednisone when she had to have a surgery and when she pulled a muscle in her leg and had to stop the bleeding. Other than that the doctors believe that her body can produce big healthy platelets and is ok on its own. Other doctors get very nervous when they hear that platelets are so low...but sometimes treatment is not necessary.

Hello

Pls spk to Homeopath Dr Phanindranath 09341063838

Hessarghatta and Malleshwaram Bangalore.

He is treating me very successfully for my ITP and other health issues.

SRJEER
SRJEER in reply to Asimkumar

Thank you, I'll get in touch. I was consulting with Kottakkal ayurveda shala. Was not able to judge big it worked. Thanks once again.

4000 is indeed very low. I hope your doctor has prescribed a treatment. There is a known phenomena where boys get ITP type counts during puberty and then grow out of it.

SRJEER
SRJEER in reply to RobertSp

Yes, he was administered ivig 40 mg since last 24hrs. His platelet count was 10000 ,15hrs ago , waiting for another 6hrs for a blood test to check the count. There after will go with the rest of the ivig course, another 30mg. The phenomenab part is new to me , thank you . I ll check on that.

It sounds like your son is in good hands. I have had Ivig treatments several times. For me they are done in conjunction with prednisone. It takes about 4 days of treatments for my count to come up.

SRJEER
SRJEER in reply to RobertSp

Yes Robert,Dr Satish K , is one of the best doctors in around here. My son's platalet count is now increased to 23000 . A little comfort. No bleeding , he was on 250mg Pause tablet every six hours. Hoping to go home soon. Thank you Robert

SRJEER
SRJEER in reply to SRJEER

Hi Robort, My son has been discharged from hospital. His platalet count was 43000, 48 hrs ago,the trend seems to be increasing. Thank you.

When I was diagnosed about a year ago, my platelet count was at 3000. My doctor was worried. He said he had never had a patient with a count that low. He said the best treatment was to give me very high doses of prednisone for several weeks and then taper me off. He said it would shock my immune systen and was the only way he could try to keep it from returning. So, first in the ER I was given platelets and steroids and then started the following day on 100mg of predisone daily for a few weeks and then tapered. My therapy lasted 4 months. I am now at normal level of 250,000 and I am thankful for my doctor knowing what to do. He is a hemotologist. Hopefully you are seeing a hemotologist too. Your son will be fine but he needs a shock to his system too to get him well. Lots of luck and prayers your way.

SRJEER
SRJEER in reply to vernmary

Thank you so much for the advise and concern. My son seems to be fine now. When he was discharged from Hospital 48hrs ago his count was 43000 and it was increasing. I opted for ivig and he is responding good. He is in with good hands , I am seeing a Hematologist Dr Satish k , at Columbia Asia Hospital. A renowned hospital. Thank you for all your inputs .

Hang in there! My count has been 30,000 for the past 15 years. I am 41. But it’s scary when it’s your child! I don’t take any medications at all, but the only time I got it to 100,00 is when I took a liquid vitamin called Vibe. It’s suppose to have x amount of fruits and vegetables..that was years ago but I wonder if it would help

SRJEER
SRJEER in reply to Jhurt

Thank you so much for the concern and information. My son is doing better now, need to check on his platalet on Monday. I will checkout on that medicine.

Has he been tested for H pylori?

SRJEER
SRJEER in reply to Nickie25

No known, will check on it. Can you give some more information on it . Thank you

How's it son now !

SRJEER
SRJEER in reply to Justforyuu

Thank you for asking, he is doing fine, have an appointment with doctor in Monday.

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