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Prat's check up

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Offline poo gill

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Re: Prat's check up
« Reply #45 on: April 28, 2009, 08:02:59 AM »
Andy

One more question could you please check his dosage of b complex is it ok or do I need to increase it. Also there is 30 mg vitamin c here in  his multi vitamin... I am not getting anything without C. What do I do of IP 6 am not getting either.. I will try to get it from India, but what is the dose required.

Will be starting fresh wheat grass soon.

Thanks

Puja
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Offline Zaini

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Re: Prat's check up
« Reply #46 on: April 28, 2009, 08:50:03 AM »
Puja,

Can you order IP6 online? Its a supplement not a med so i don't think it will need a prescription. www.puritan.com is the site.My daughter takes 3 caps daily and she is 8 years old.

Zaini.
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Offline Manal

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Re: Prat's check up
« Reply #47 on: April 28, 2009, 01:59:11 PM »
Puja

I usually give hydrea right before he goes to sleep (usually he has his dinner before sleep too). When i tried the hydrea before a year or more ago, i noticed that it caused him a kind of dizziness and stomache so i prefered now before going to sleep.  Maybe his body got used to it but i just prefer givng it before bed time in case anything happenes.

As forthe L-carnitine, i want you to make sure that you give it 5 days per week (two days off) cause as i told you Dr.El Beshlawy warned me that this is how it is taken as studies showed that it might cause bone marrow depression when taken continously. In intermedias in particular, this could be a really serious side effect. Studies were done on 50mg/kilo though it could be taken up to 100mg.

So to sum up make sure you give Prat 50mgX30kg(his weight)=1500 mg of L-carnitine a day divided to 2 or three doses. GIVING TWO DAYs OFF, Saturdays and Sundays as you suggested will be fine.

manal
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Offline poo gill

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Re: Prat's check up
« Reply #48 on: July 14, 2009, 09:24:55 AM »
Hi All
How are you all?

Sorry, I ve been missing in action. Got back last week and have been really busy in gettting the kids back in routine and office.

Wanted to update you on Prat's reports

Date: 10.06.09

Hb -9.36.
ESR -3
TLC-9800
DLC
Neutrophills- 50
Lymphocytes-48
Monocytes-1
Eosinophills-1
Basophils- 0
Platelet count-2,96,000
Retic count-26.00%

Serum Bilirubin-
Total-3.41
Direct-0.88
Indirect-2.53
SGOT-29.54
SGPT-40.66

According to Dr Marwaha though SGPT and Rectic count are high, it is expected to be so in thal kids.

SGPT can be upto 200 in thal kids.

Thanks

Puja

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Offline poo gill

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Re: Prat's check up
« Reply #49 on: July 14, 2009, 09:32:34 AM »
Quote from: Andy on February 13, 2009, 04:37:00 AM
Hi Puja,

The SGOT and SGPT are only on the high side of normal and almost definitely are the result of the excess bilirubin. They are of no concern at this level. The bilirubin is the result of hemolysis and this also leads to the higher retic count as the bone marrow is more active as it tries to keep the hemoglobin level as high as possible. It's a vicious cycle so sometimes you just accept that it happens and try to optimize the child's health by providing supplements and even meds like hydroxyurea to boost the production of hemoglobin and to build healthier red blood cells. Folic acid, B-complex, vitamins D and E and magnesium are all important for building and protecting red blood cells. Wheatgrass and resveratrol may help boost hemoglobin levels. You may not be able to eliminate high bilirubin levels but I think you can make a positive effect on the situation which will also lead to fewer complications in the gallbladder from high bilirubin.

Can you ask Dr Marwaha at what levels of bilirubin should you be concerned and if the higher retic count is of any concern if it also means the Hb is higher? His experience is vast and I would very much like to know what we should be advising people about when to be concerned about high bilirubin. It is very hard to compare these levels in thals to non-thals and Dr Marwaha has experience with a wide range of patients. I think he can offer some real insight into this.



Hi All
How are you all?

Sorry, I ve been missing in action. Got back last week and have been really busy in gettting the kids back in routine and office.

Wanted to update you on Prat's reports

Date: 10.06.09

Hb -9.36.
ESR -3
TLC-9800
DLC
Neutrophills- 50
Lymphocytes-48
Monocytes-1
Eosinophills-1
Basophils- 0
Platelet count-2,96,000
Retic count-26.00%

Serum Bilirubin-
Total-3.41
Direct-0.88
Indirect-2.53
SGOT-29.54
SGPT-40.66

According to Dr Marwaha though SGPT and Rectic count are high, it is expected to be so in thal kids.

According to Dr Marwaha SGPT upto 200 is ok in thals. Also retic count of 26 % is ok.

SGPT can be upto 200 in thal kids.

Thanks

Puja
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Offline Zaini

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Re: Prat's check up
« Reply #50 on: July 14, 2009, 09:51:32 AM »
Welcome back Puja  :hugfriend

I am glad Prat's hb is maintained,i hope it will continue to be so.

Zaini.
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Offline poo gill

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Re: Prat's check up
« Reply #51 on: July 14, 2009, 09:59:47 AM »
Thanks Zaini

I am also keeping my fingers crossed for the hb to be stable. How is Zainab?.

Love
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Offline Zaini

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Re: Prat's check up
« Reply #52 on: July 14, 2009, 10:02:38 AM »
She is doing fine Alhumdulillah,i'll be posting her results in another thread :) .

Zaini.
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Offline Andy Battaglia

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Re: Prat's check up
« Reply #53 on: July 14, 2009, 02:38:41 PM »
Hi Puja,

It's good to see that Prat's Hb is stabilized. I am very much interested in hearing what Dr Marwaha has to say about supplements and what else he suggests. His experience is real world and significant. I hope what he said about retic count and bilirubin levels can alleviate some concerns that people have about levels that are only slightly above normal. People often fail to realize that thals will have some higher than normal values but this is not anything to worry about. Liver values are included in this and values that are not extremely high are really of no concern other than we should take note of the trend.
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Andy

All we are saying is give thals a chance.
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Offline Sharmin

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Re: Prat's check up
« Reply #54 on: July 14, 2009, 04:28:48 PM »
Hi Puja,

Nice to see you back  :hugfriend.   Prat's results seem good, it is nice to see his hemoglobin:) 
I hope that you continue to see wonderful results for Prat.  XOXO

Sharmin
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Offline Manal

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Re: Prat's check up
« Reply #55 on: July 15, 2009, 02:35:50 AM »
Waaaaaaaaaaay to go Puja, i am so happy for the wonderful news :hugfriend

Missed you  a lot my friend :hugfriend


manal
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Offline poo gill

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Re: Prat's check up
« Reply #56 on: July 15, 2009, 08:21:12 AM »
Hi Andy

Dr Marwaha was really impressed after reading some of our thal pal posts. I had printed the supplement section specifically to show him what we are using for our kids. He took the print outs and will be starting some of his patients on some of supplements. He specifically mentioned that our kids are maintaing the hb better as we are regular with supplements. In his hospital 90 % of patients cannot take the supplements due to financial reasons.

He was not sure about L carnitine though.

Also regarding FPP he had mixed views not for thals though, as none of the thals' have started FPP in India. He used FPP himself as he has parkinsons and his expereince is that his symptoms became worse so he decreased the dose from 2 sachets a day to one sachet alternate days.

I was concerned about the iron in wheat grass juice but Prat's Serum Ferritin was normal. Andy could you advise how many times a year Serum Ferritin should be done.

Thanks

Puja 
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Offline Mompooja

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Re: Prat's check up
« Reply #57 on: September 28, 2012, 06:52:07 PM »
Hi Puja, hope ur son is doing well. My daughter has been diagnosed as thal intermedia and her hb dropping while her spleen is enlarging. I wanted to ask you about wheatgrass. Are you still using it. Does it really work? Coz my doctor said that Dr Marwah had claimed that it works but later he withdrew his papers on the subject. Also what kind is the most effective... Grown at home or shots or tablets or juice.... Any particular brand. I would be really grateful for any help on this subject
Pooja
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