Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: poo gill on February 10, 2009, 09:24:50 AM
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Hi Friends
You guys will be happy to hear that Prat's hb is 10.17, his hb has been around 9 after spleenectomy in july 2008. however it did drop in Dec because of viral. For a change and for the first time ever i did not panic, and just waited for the infection to pass off. Fortunately the infection passed off and his hb is ok.
We are awaiting his Liver function test reports and Kidney function test reports. Will post the results, i think by tomm. As of now his bilirubin is on the higher side it is about 4. I need to consult with the Dr Marwaha on this aspect.
AS for his stomach ache, he does have gastric pains once in a while and they are really bad sometimes. However over all i am happy with his progress.
Take care and God Bless.
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Hi Puja,
I am really glad to hear that Prat's hb is going so well,i am sure he''l be with you soon in Singapore :hugfriend.
Zaini.
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Puja,
I am very happy to hear how well Prat is doing. I wish him continued progress and good health.
All the best,
Sharmin
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Puja,
It's good to hear that Prat is doing well with his Hb. Is he taking anything to induce HB, like wheatgrass? Please give my regards to Dr Marwaha.
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Me too Puja, send my greetings to Dr. Marwaha :wink
As for the stomache pains, Dr. Ali Taher has once said that after splenctomy, some patients develop very small tiny clot :hugfriends in the intestine that could cause severe pain . So it will be a good idea if you eliminate this option through an ultra sound or any other accurate test .
As for Prat's progress, i am really soooooooo happy. congratulations my friend :hugfriend
manal
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Hi Manal, Andy, sharni and Zaini
Thanks for your wishes.
I need your advice on something:
Prat's Serum Bilirubin is :
Total 4.57 (Normal range - .2-1.2 mg/dL)
Direct.51(0.0-0.3 mg/dL)
Indirect4.06(0.1-1.0mg/dL)
SGOT -43.95U/L
SGPT-41.960-40U/L
The above are abnormal. Is it a cause for concern.
Rest all the Parameters like Alkaline Phosphates. Serum Proteins and Albumin and Globulin is in the normal range. Actually I was trying to upload the reports but am not able to attach.
His Kidney Function Test also seems to be ok as Blood urea, Serum Creatinine and Uric Acis is within the normal range.
Only abnormal result is rectic count. which is 8%(0.2 to 2% is the normal range).
Awaiting your advice
Thanks
Puja
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Does high retic count suggests that bone marrow is over working? If so then i think it won't be strange in intermedias? As their bodies try to keep up with low hb,even if 10 is high for Prat,but still it's low,am i right? Just wanted to learn .
Zaini.
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Hi Andy, Manal
Did you get a chance to review Prat's reports. i had emailed you last night.
Awaiting your feedback.
Thanks
Puja
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Dear Puja
I didn't receive anything on my email till this moment and i am sorry i don't know why i missed reading this post yesterday. Sometimes when i shut my laptop before reading the unread posts, they don't appear again when i re-open.
Anyways, i have the same problem with Ahmad but he is on a low HB. I really don't know why is the retic of Prat is high though he is having a HB of 10 which i consider very good and the most important thing is that he is on hydrea which is supposed to suppress the activity of the bone marrow.
I think Andy will be more able to answer this.
Were you able to reach Dr. Marwaha for Prat's stomach pains or not yet??
If i find anything else, i will definetly let you know
manal
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Hi Manal
I will email again. I dont know how come you did not receive. i have sent it from my official id.
AS for Rectic count Dr marwaha said the same as Zaini, the bone marrow is producing the rbc's tht is why rectic count is higher. i checked his last year reports when hb was 5.91 then rectic count was 2 %.
What is Ahmad's bilirubin - Dr Marwaha said it will be ok on its own. When I compared last year's reports again the total bilirubin was lesser(2.2) but still above the normal range. I know it is due to haemolysis but my question is how do we know that it is something worry about in these kids. in normal children if the bilirubin is slightly raised is a cause for alarm as it is jaundice. My question is that for our kids what is the level which is acceptable?
His Platelet count was also raised to 5,86,000.
Do tell me what you think.
Puja
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Hi Puja
AS for Rectic count Dr marwaha said the same as Zaini, the bone marrow is producing the rbc's tht is why rectic count is higher. i checked his last year reports when hb was 5.91 then rectic count was 2 %.
But the relation between HB and the retic count (which reflects the activity of the bone marrow) in addition to bilirubin should be inversely propotional, meaning as long as the total HB is in a higher level, the retic count should decrease. Usually the retic increases when there is severe anemia because the bone marrow tries to work more hard to compansate for this low HB
As for Ahmad's bilirubin, it used to be around 1.7 for the past two years, but few months ago it started to be round 2 to 2.4 with the same HB level and with increased retic count. The only logical explaination was that (as Maha had told me ) his body is growing so it is working more harder to keep up with the same HB
But what i don't understand is that in Prat's case, a big percentage of his total HB is the fetal one because of hydrea, so why does his bone marrow needs to work so hard?????????????????????????
As for the bilirubin i don't think that you should get annoyed as it's increase is due to a metaboilic reason, but from my expierence, taking magnesium plays an important role in avoiding the formation of gall bladder stones
One important thing that Sharmin has mentioned from Oakland is the importance of taking baby asprin or coumadine to work as a blood thinner after splenctomy.
As for Prat's platlets, don't worry cause a fear of thrombophilia starts when plateles reach a million and at the same time as Andy had said before, lab technicians usually mistaken the small immature red cells for platles. It happened to me several times, check them again next month to make sure they are okay
manal
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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.
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Manal
if the retic count should be inversely propotional then last year prat's hb was lower and so was retic count.
Can Vitamin E be considered a blood thinner. He is on Hydro, FPP, L carnitine, folic acid and antibiotic(Kaypan) , Vitamin E, Calcium(with magnesium and Vit D) every day .
What is the amount of Magnesium should be given.
I will keep a watch on the platelets.
Did you receive my mail on his reports.
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Hi Andy
I did ask Dr Marwaha and he said for the retic, bone marrow is trying to produce more RBC's that is why it is higher. Also for Bilirubin, he said it will come down on its own, nothing is to be done. As for platelets he said 5,86,000 is also ok.
Also I have noticed you guys are taking abt Haematocrite - there is no mention of haemocrit in any of the reports of Prat's which have been done in India. I came across this word Haematocrite in Prat's old reports which were done in S'pore.
AS for Retic count there is no mention in S'pore reports, it seems they dont test this. All his reports done in India(recent ones and last years), have retic count. When his hb is low his retic count is low, when his hb is high his retic count is high.
Andy - Can I just let Prat be on Vitamin E and not start Asprin for blood thinner... what is your view?
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Puja, retic count is the reflection of bone marrow activity so the higher it is the more active the bone marrow which is usually the case with the low anemia......... Andy please correct me if i am wrong At the same time i know what you are talking about because i have the same situation right now,but the thing that i still do not get, is why should this happen while you are giving hydrea which is supposed to be a bone marrow suppresent
Sorry Puja for confusing you but either Andy or Dr, Marwaha will be able to answer this
Vitamin E is mainly an antioxidant, but i know it has little blood thinning properties. As for magnesium it should be half the dose of calcium.
Puja, i didn't receive the email. Are you sure you are sending the correct address
To Andy:
Is it okay that Prat is taking three antioxidants, FPP- Vitamin E- and L-carnitine(one of it's properties is being an antioxidant)
manal
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Puja, children shouldn't take aspirin. It is recommended that children under age 19 don't take aspirin unless prescribed by a doctor for a specific condition where it is considered the benefit outweighs the risk. In addition to vitamin E, you can include foods like ginger, garlic and fish oil to provide anticoagulant properties. However, if any blood thinning drugs are taken, the dose may have to be modified because of the dietary sources of blood thinners. Once he is older, he may try a daily aspirin if it seems necessary. I do think diet can play a very positive role. Prat's blood counts are really good. I'm thrilled with his HB. The platelet count is moderated by the note that they are adequate and normal in size. This report could very easily be from a minor rather than an intermedia.
Manal, antioxidants are safe to take and a healthy diet will provide many different antioxidants on a daily basis. These supplements are all food products. A fruit salad and a whole grain muffin would provide an even wider variety of antioxidants, but the supplements are more concentrated and we always need to remember that these are supplements and not replacements for a good diet. Thals do have to supplement no matter how good their diet is because of the incredible demand for vitamins and minerals that the stresses of thalassemia cause.
I am very interested in what is observed using FPP.
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By the way Manal, you have stated the seeming paradox with hydroxyurea. It works as a chemo drug by suppressing bone marrow activity, but when used in smaller doses with thals it does have some suppressing effect but at the same time, it increases the amount of fetal hemoglobin being produced. You might say it's pulling in both directions at once. Because in a way hydroxy partly negates itself, there has been much research into other drugs that only induce hemoglobin and don't suppress the bone marrow. If the Hb can be raised enough, this in itself will regulate bone marrow activity.
And hematocrit is used more in the US while hemoglobin level is used more in the rest of the world. Hematocrit will be roughly triple the Hb level. A complete blood count will often include both values, but they can be used equally to determine if the patient should transfuse. Hematocrit tells the percentage of red blood cells in the blood.
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Hi Andy
You dont have any idea, how thrilled I am to read your reply. I cannot thank you enough for your continuous support and advice.
On a lighter note, I guess Andy if you sit for the medical exam you will straight away pass as a Doctor or a Super specialist.
Thank you.
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Andy you have mentioned that kids should not take Aspirin. Just for curiousity I want to know if kids fall down or hurt themselves badly, what kind of pain killer should be given to them which is not too harsh on their system. I have heard contradicting things abt ibruofen.
Manal what do you give Ahmad. Sharni/Zaini any advice.
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Andy
If the Hb can be raised enough, this in itself will regulate bone marrow activity.
1- So do we expect Prat retic count to decrease when HB stablises for a while at 10??
much research into other drugs that only induce hemoglobin and don't suppress the bone marrow
2- Isn't suppressing the bone marrow activity a target in itself in thals to avoid bone deformity
3- Do the long term use of hydrea cause depression in bone marrow activity or this is not the case since it is used in small quantities with thal ''hydroxy partly negates itself''
4- Why we sometimes we have intermedia patients on hydrea with same Hb range and with big difference in retic ?? Does the mutation play a role here??
5- With many children taking hydrea and with the confirmation of Oakland that it is safe drug why do they still write in the leaflet of the drug ..''Safety & effectivness in pediatric patients have not been established''
manal
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Puja
I wasn't faced by a situation where i wanted to give a pain killer but when Ahmad has a fever the ped prescribe Brufen (antipyretic- analgesic- anti inflammatory) alternating with voltaren and both are gernerally pain killers
manal
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Puja,
Doctors here usually prescribe Paracetamol for kids,for fever and pain.But it's not a blood thinner ofcourse.I think you should ask your doctor first if Prat needs blood thinner.I know he has had splenectomy.But did dr Marwaha or any other doctor prescribed him Aspirin or any other blood thinner?
Zaini.
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The reticulocyte count is tied more to the rate of hemolysis than to Hb levels. so a higher Hb won't necessarily lead to a drop in reticulocyte count. Hemolysis is fairly normal in thalassemia and the rate can be affected by other factors sch as recent illness. Also, the normal reticulocyte count for children can be higher than that for adults with a range up to 4, so 8 doesn't seem quite as bad as it sounds. Why hemolysis takes place is a big question and research has shown that much of this actually takes place in the bone marrow and may be related to the extra alpha globin chains that exist in beta thal. It may in fact have little to do with functions of the liver and spleen in this case. The thing to remember in this case is that the Hb has gone up, which means it is effective erythropoiesis and not the ineffective type which leads to more and more expansion of the bone marrow. I don't think these reported counts are anything of alarm and may well be temporary. And yes, the genes do play some role in this alpha/beta imbalance, but more research is needed and is taking place to explain why hemolysis takes place in the bone marrow, killing the young erythrocytes.
In Prat's case, the higher HB will somewhat regulate the bone marrow activity. Even if it is high, it is not being stimulated by low hemoglobin levels, but by hemolysis, which is seen with the higher bilirubin level. While suppressing the bone marrow through transfusions is the goal with thal major, it is not the goal with non-transfusing intermedias, who need this activity to maintain an Hb high enough to live without transfusion. Hydroxyurea will cause some mild suppression of bone marrow at the levels used with thal but this is countered by its induction of fetal hemoglobin. This is actually why there is no clear cut protocol for determining whether transfusions are necessary in intermedia. A judgment is made weighing the amount of expansion against the hazards of transfusion (mainly iron overload) and why it becomes so necessary to accurately measure the iron load in the organs of non-transfusing intermedias. If it is shown that there is significant iron overload even without transfusions, then the reason to not transfuse vanishes even without other factors being present. Intermedias should pay special attention to avoiding iron rich foods because of this.
I also want to mention this very enlightening page, which really modifies how liver function tests should be seen. Higher SGPT can be expected in non-whites, so the "normal" levels we are told may not really be accurate for people of non-western lineage.
http://www.aafp.org/afp/990415ap/2223.html
Special Considerations in Interpreting Liver Function Tests
Mildly elevated ALT level (less than 1.5 times normal) ALT value could be normal for gender, ethnicity or body mass index.
When we see rates around or slightly higher than the high end of normal, it is no cause for concern as many factors play a role. Something else of real note in this fantastic article is that it is the gallbladder that is often responsible for high LFTs and misdiagnosis of hepatitis may result. So, considering what our dear Umair has been through lately, I would suggest a gallbladder exam to see if this may be the reason for the ongoing stomach problems.
This article has great info and explains why we see certain levels in liver function tests. I highly recommend reading and keeping this article.
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Acetaminophen products are considered safe for children and our doctors have often prescribed ibuprofen also to combat fever. Because of the connection between aspirin and reyes syndrome, aspirin is strongly discouraged in children.
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Thanks Andy, the relation between the HB, retic and bilirubin is finally clear now
manal
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Andy
Just wanted to bring to your notice, as i missed out telling you earlier.
In July 2008 Prat's ferritin was 202, now in Feb 2009 it is 140.
I plan to do his liver scan done once he is in S'pore. For Gall bladder..what is the recommended test. A normal ultra sound, will that suffice.
Thanks
Puja
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Puja,
I think an ultra sound can detect gall bladder stones,Please check this link.
http://www.umm.edu/patiented/articles/how_gallstones_gallbladder_disease_diagnosed_000010_6.htm
Zaini.
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Puja,
I think that an abdominal ultrasound is all that you need to check the gall bladder. I think that our little Prat is doing great - god bless!
I read earlier in the thread - about pain relief - I use Tylenol (acetaminophen) or children's Advil (ibuprofen) for both of my children when they are sick or hurt.
Best of luck with Prat's remaining tests dear,
Sharmin
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Thanks Sharni.
Will get the ultra sound done.. then will update.
How is Armaan and how was your trip.
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Hi All
I am sorry I have been missing in action lately. kids are really keeping me on toes.
Anyways just to update you Prat's hb has gone down from 10 to 8.5. I had got a finger prick check. Overall he is looking ok and doing well but yes I could see the difference in his lip and tounge colour, there are not as pink as before. As of now he doesnt have any infection, no cold cough.
I am planning on giving it a month to see. He continues to be on his normal doses of hydrea, vit e, fpp, l carnitine folic acid and calcium.
Please advise shall i give him another multivitamin.. which has the other vitamins as well besides the above.
He has been wheat grass for almost 8-9 months now.
Any suggestions will be highly appreciated.
Thanks
Puja
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Hi Puja,
Are you giving Prat Magnesium? It helps in maintaining RBC's health and strengthen the walls of RBC's.And a B-complex also might help as it helps building new cells.
Hope kids are fine :hugfriend .
Zaini.
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Hi Puja,
I would suggest both a multivitamin and a B complex supplement be added to his daily routine.
By the way, I stopped taking wheatgrass for a couple months and recently started up again. The difference is quite noticeable.
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I did not see IP6 either. Is there a reason why that is not in the list?
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Hi Puja,
I hope that Prat's hg increases to 10 again soon,
Best of luck,
Sharmin
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Hi Puja
I also suggest that you give him Osteocare chewable, It has the magnesium as Zaini mentioned in addition to Zinc (very essential for growth), it has also some trace elemets that are important in the formation of blood
Calcium 800mg (100%RDA), Magnesium 300mg (100%RDA), Zinc 10mg (67%RDA), Copper 1mg, Manganese 0.5mg, Selenium 50ug, Vitamin D (as D3 200IU) 5ug (100%RDA), Boron 0.6mg
[/b][/size]
http://www.worldwideshoppingmall.co.uk/body-soul/osteocare-chewable.asp
Did you ask the doctor for an explaination concerning this decrease?? Was this increase in HB a temprory one as a result of splenectomy???
I hope he really gets back to his levels again
Please keep updating
manal
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Hi
Andy I will try to put him back on a multivitamin, the thing is the one he was using was a syrup based and i was seeing that his teeth are turning yellowish, so i was relying on the other supplements and i have not found any multivitamin so far which has everything except iron so far for kids. Also Andy if he takes a plain b complex and a mutlivitamin which also has b complex .. wont it to too much of B.
Zaini - Magnesium he is taking with his daily dose of calcium( it has 1000mg, 400 mg of magnesium, 15mg ofzinc oxide and 1 mg copper) , but i think ill switch to osteocare now.
Narendra - no the reason I P6 is mentioned becasue I have not tried yet. There are so many supplements and 24 hours.. sometimes I get skeptical about over dose and so many medicines and their effects on kidneys that is why I want to go slow.
Andy - what wheatgrass you started on. What do you think shall i try
Manal - in Dec also Prat's hb had gone down and Dr Marwaha had just said to wait. so I am waiting for another month to see.
Lots of love and thanks to all for your support.. really cant imagine doing all this alone.
Puja
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There are so many supplements and 24 hours.. sometimes I get skeptical about over dose and so many medicines and their effects on kidneys that is why I want to go slow.
Really should we be worried about that ??? I never ave it much thought but my husband is always skeptical about so many supplements :( Andy what do you think?
Zaini.
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No Zaini
I dint mean to get you worried by right thal needs more supplements than the rest cos their body is working doubly hard, so they need more supplements. There are no two ways abt it.
But my first concern is that there are so many supplements like FPP and wheat grass which are best to be given empty stomach.There is no time in their schedule full of schooling and other activities. IP 6 also needs empty stomach. I give calcium with his milk and then post breakfast he is given hydrea, anti biotic( is given twice a day once in the morning post breakfast) , vitamin e and L carnitine(is it safe to combine e with carnitine or hydrea or antibiotic. What is the best combination cos I dont think there is any time of the day when we can give them only one medication.
So it is always a challenge to find time and squeeze in a supplement. I wonder sometimes wheter combining these so quickly one after another is it safe.
Second concern is - we have heard that there have been so many cases of Kidney issues with long drawn medication schedule. So I am thinking whether we can help this medication issue by giving them more water, so that all the extra stuff gets flushed out.
Thanks
puja
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I was more worried about stomach ulcers, but having supplements as we said before is a main pillar in the thal management. So all what we need to do is to:
1- Give the vitamins after meals (not on an empty stomach)
2- Select good brands of vitamins that are known of using good qualities in order to minimize any problms resulting from using low quality compounds
3- Give a lot of water to help get rid of toxins or follow detox programes (a bit difficult for children)
But finally the importance of supplements to thals out weighs any other concerns
manal
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Thanks Manal :hugfriend
Zaini.
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Hi Puja,
Most multi vitamins do not contain very high doses of B complex, but this needs to be checked. Amounts similar to what Sharni gives little A are a good choice (B complex 50). If you are looking for an alternative to wheatgrass tabs in order to cut down the amount of swallowing pills, try Dr Reynold's wheatgrass supershots. It's a sweet liquid that is swished around in the mouth for a minute before swallowing. The Singapore source for this is
THE WELLSPRING OF LIFE
301 Upper Thomson Road
#01-83 Thomson Plaza
Singapore 574408
Tel: (65) 6465 7005
Fax: (65) 6836 1192
http://www.wellspring.com.sg/
Email: enquire@wellspring.com.sg
For others interested, check http://drwheatgrass.com/wheretobuy/Default.htm
As far as too many supplements and kidneys etc, remember that things like wheatgrass and FPP are foods and should not be thought of as more vitamins. Also, it is safe to take wheatgrass, FPP and IP6 within the same empty stomach time period each day. Don't go overboard on vitamins by trying to take everything. A good multivitamin, a calcium supplement that also contains the other minerals, B complex, folic acid, and vitamins D & E are all good choices. All of these should be taken after meals to minimize any chance for stomach upset, and aside from the calcium, they should all be taken no more than once per day.
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I also want to agree with Puja about the value of water. It is often overlooked but getting plenty of fluids is very important for everyone's health. It does help to detoxify the body, keeps the kidneys cleaned out and is necessary for so many functions. The body is mostly water and this should be acknowledged and respected and addressed. Many times when one gets that vague not feeling well condition, it is a simple matter of re-hydrating that will correct this. In warm weather, it may also be necessary to eat something a bit salty to replace salts lost through sweating. If you are dehydrated and feel foggy, you almost definitely need both water and salt. Sea salt is preferred. For those using desferal, drinking plenty of water is essential because iron is excreted in urine when using desferal and this will help eliminate the iron that desferal is chelating.
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Thanks Friends
But i have another question.
manal - if you are saying not to give vitamins empty stomach then when do you give hydrea.
Actuall my regimen is like this.
7.30 am
When he wakes up I give him Calcium 1000(with D, Magnesium 400and Zinc oxide 15mg and copper 1mg) with milk,
8.00 after that they get ready to school I have started the
1.chewy multivitamin (which contains vitamin a-1333iu , D3 100iu,e-7.45iu, B3 9mg , B6 1mg, Foic Acid 100msg, , 2.B12 .5mcg, biotin 75mcg, wihtout iron but it has alittle bit of C - 30mg)
2.folic acid - 5mg,
3.L carnitine(the bottle is 30 ml and says 5 ml contains Levocarnitine USP 500mg) - i am giving 1 ml dropper once a day(normally i used to give 7 days a week, but Manal said give it 5 days so this week onwards I ahve reduced it).This is a very confusing supplement and I have been giving him less, as per manal's advise, and i think I should be giving him 3 times a day 5 ml. So I need to incorporate this also in the schedule.L carnitine - if the dose is less like 3 ml - that is 3 times a day and is given 7 days a week will it still have adverse affects. Why do we need to break in and give a gap of 2 days. So is it right to do it Monday to Friday and give a break on Sat and Sunday.
8.20 am- I give hydro oxy urea( 5 days 1 capsules - 500 mg and 2 days - 2 capsules of 500mg) and kay pan (anti biotic for spleen to be given twice a day). AS these are strong medicines i feel that giving after food is good, but please advise if i need to change.
Then they are in school for 3.30pm.
At 3.35 pm - i give FPP (empty stomach).
4 pm After lunch another Kay pan 125.
6.30 pm- vitamin e(400 iu daily).
9pm after dinner - B complex 1 tablet which has B1-50mg, B2-50mg,B3-50mg, B6-50mg,folic acid -100mcg,B12-50mcg, Biotin-50mcg, Panthenic acid 50mg, Choline bitatrate- 50mg, Inositol-50mg, Paba(para amino benzoic acid)- 50 mg.
Please advise how should I tweek this regimen for better results. Which are the vitamins i can combine.
I am planning to start the wheat grass again and L carnitine has to be made 3 times a day instead of 1 time.
Thanks
Puja
PS; i could not find IP-6 in the pharmacy. does it need a doctor's prescriotion or is it Over the counter supplement.
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Puja,
B complex is the one you should always take with meals and you're already giving it to him after dinner. Hydroxyurea can be taken with or without food, so that is flexible, but if it's working there's no reason to change it. The antibiotic should have instructions as to when to take it. I don't think the timing of anything else needs changing. I would suggest that you make sure he gets some daily sun to supplement his vitamin D.
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Thanks Andy
Sun he is getting plenty cos he is an outdoor person and there is no dirth of sun is Singapore. Some times too much of it.
Giving hydro oxy urea and Anti biotic together should be ok i guess...?
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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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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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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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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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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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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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Thanks Zaini
I am also keeping my fingers crossed for the hb to be stable. How is Zainab?.
Love
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She is doing fine Alhumdulillah,i'll be posting her results in another thread :) .
Zaini.
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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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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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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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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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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