[rpadma]

Hello Padma & Sajni!

I worry the same about my daughter. I just started Elidel for her. I also worry about her puberty. She is now 6 yrs. Before that I want to be ready with all the arms I can have. So, I am trying to get as much information as possible. Any one out there has the same experience, please post.

thanks,
Padma.

[rpadma]

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[rpadma]

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[rpadma]

hi lina!

Can you please describe me how your spots look like under the lamp? I would greatly appreciate your response. please….

you can send me email to [email protected]

thanks,
Padma R.

[rpadma]

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[rpadma]

Hi!

What confuses me is that, if it is not vit, why the spots are so white and why I see new spots. The spots some times are like white broken lines and some times clusters of real tiny white spots. When they appear as clusters, usually they show up very lightly (I mean very tiny like powder sprinkle) and then slowly they become more prominent. Does any one have this kind of experience? How bright that the vit spots appear under the light. Can u give me an example, please? I appreciate any response.

thanks,
Padma R.

[rpadma]

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[rpadma]

[QUOTED]
from experience i can say topical steroids do work initially on young kids
[/QUOTED]

So Vandana!

After stopping the steroid would the spots come back? We cannot use steroids for a long time. You are right, we have to maintain the pigment after regaining it. So, you think nb uvb can maintain the pigment? How about applying bawachi oil on every new spot that you see depigmenting as soon as you notice it? Would it work? There are some people on this forum trying it, like gurmeet, and I think dipti too. JAI is also trying it. Can any one please post your experiences about it?

thanks,
Padma R.

[rpadma]

Hi Vandana & Gurmeet!

Mentioning about bawachi oil is one of the reasons that I liked Dr.Rizvi’s site. Actually, his treatment is pretty much like PUVA in that case. Even when we use bawachi oil with sun, it’s like our own PUVA. Vandana! did you try bawachi oil? If you want, why don’t you try Dr.Rizvi? What other doctors did you try? I have also heard about Dr.Jobanputra. I posted a reference to him on this forum check for it. I am visiting India in December. I first plan to try a derm in India that my dad talked to and said he can atleast arrest new growth. Right now, my daughter has it on one eye lid and under the other eye. We are using topical steroid for the past three weeks and it is has some effect (I think) and we have follow up appointment tomorrow. But, I also noticed few new pin head size spots here and there on her body, about 10 of them in the past three weeks. She is now 5 years and 8 months. So, I want to put her on some treatment as soon as I can, since they respond better in early stages and also when they are young. I am also trying to contact Dr.Grimes in LA. I really want to try one of these Indian doctor’s treatment, but my daughter cannot take time off from school right now (it is not allowed here) and also I do not want to try without any recommendations. I passed the info to my brother-in-law in Delhi, asking him to enquire about it. When I hear from him, I will post here. Gurmeet! keep us posted about your son’s progress. I am also counting on bawachi oil. How long have you been using it now?

thanks,
Padma R.

[rpadma]

Hi Vandana!

This is the site http://www.rizvis.com/. Let me know if you get any feedback from any one. I would be very interested. What treatment are you giving to your daughter right now?

Padma.

[rpadma]

Hello Padma!

I see a couple of clusters of tiny(pin head size) spots or a white line per week on an average. I also, do not want to try any thing hastily. I am planning to visit a derm in India that my dad suggested. Then, I would try bawachi oil. That’s the plan for the next three to four months for now. How is your daughter doing with Vitamins?

thanks,
Padma R.

[rpadma]

Hello All!

This is my email conversation with one of the references that Dr.Jobanputra passed to me. Thought it might be helpful.

===========================================================================
Hello Padma:

How long more do you think that you need to do this treatment?

We hoped it would have been completed a year or two ago. We don’t know if it may be yet several more months or less?

How much does it cost for you?

We send a cashiers check in US Dollars. Since we have been getting our medication for about 4 years, he has not increased his charges to us at all. It is quite possible that he may have raised the cost for the medication to new patients. The cost is very reasonable in dollars.

Also, how old is your child and how extensive is her vit? My daughter is five and half and I am not sure, if she is too young for the treatment.

Our daughter was also around five and a half when the vitiligo appeared near her left eye as a tiny spot. It grew very rapidly and within a year it had become very widespread – all over her body. We did not find any treatment for her until we came across Dr. Jobanputra’s site. We started Dr. Jobanputra’s treatment when she was around seven. My perception is that if you are going to treat her, the earlier you begin the quicker it will be reversed.

Where do you live and where are you from?

We live near Washington, DC. Our daughter was born in India.

I heard from some other people that when they stopped the treatment with Dr.Jobanputra after couple of years, that their Vitiligo got a lot worse. So, I scared of even giving the treatment. Please advise.

We have found about 90% to 95% cure from the treatment of Dr. Jobanputra. He states that once we treat the vitiligo until the last spot is gone, then it will not come back; unless there is a new cut of some kind in the skin in which case it may try to come back at that area but should be reversible if treated promptly. We do not know the answer to to your question concerning if the vitiligo will come back after the treatment is stopped.

Devin Sareen

>From: “Devin & Vicky Sareen”
>To: “Padma Ramaraju”
>Subject: Re: Vitiligo treatment reference from Dr.Vijay Jobanputra
>Date: Fri, 30 Aug 2002 15:07:52 -0700
>
>Dear Padma Ramaraju:
>
>I apologize for the delay in responding. Since I am getting several requests for a reference re Dr. Jobanputra’s treatment of vitiligo I have put together the following brief description which i am attaching. If you are not able to open the attachment please let me know.
>
>I wish you and your loved ones the best.
>
>Sincerely,
>
>Sareens
>

---

Original Message

---

> From: Padma Ramaraju
> To: [email protected]
> Sent: Monday, August 19, 2002 3:15 PM
> Subject: Vitiligo treatment reference from Dr.Vijay Jobanputra
>
>
> Hi Sareen!
>
> I got your email from Dr.Vijay Jobanputra for Vitiligo treatment. Can you pass me some details please? I have some questions below?
>
> How old were you when you received the treatment?
> When did you start the treatment?
> How much vitiligo did you have (please describe) and for how long?
> How long did it take for you to start showing the signs of improvement?
> How log did it take for complete cure?
> After stopping the medication, did it seem to come back?
> Did you have any side effects?
> Did you try any other medications?
> Which part of the world are you from and where were you when you received the treatment?
> Did you use sun exposure or uv or tanning bed?
> Last, if you do not mind, do you mind sharing any pictures of Vitiligo and medicine effect with me? I will completely keep it confidential.
>
> thanks a lot. I am really worried about it and would greatly appreicate your reply.
>
> thanks,
> Padma Ramaraju.
>
======================================================

thx,
Padma R.

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