Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Manal on March 09, 2009, 12:34:42 AM
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Today, i did the CBC, liver and kidney functions afterone month of taking hydrea 20mg/kilo
The HB is 7 (one gram increase, it was 6.1 last month)
Hematocrit is 22% ( last month was 19.3%)
MCV is 57 (last month it was 53)
Leucocoytic count 6,300 ( last month it was 7,700)
Total Bilirubin 2 (last month 2.4)
Retic count 6.2% (last month 7.8%)
All kidney and liver functions are normal
The spleen is enlarged by 4cm (last month it was 6cm and we never reached 6 before that is why i got the feeling that the spleen will be out of control and that is why i was so encourged to start hydrea)
Generally, he looks better
manal
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That's a really good start, Manal. Everything is positive. I hope this can make enough difference to keep him from needing transfusions.
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Hi Manal ,
i m very glad to hear Ahmed's good Reports , yeah its a good sign that his Hb has increased , i hope to hear super news like this one, in future as well . Wishi You, your Family and especialy to Ahmed All the best . :goodluck
Lots of Good wishes
Best Regards
Take Care
Umair
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Thanks Andy. I hope the same too.
When i used hydrea in 2007, i didn't see any increase in HB ( only MCV were the increasing) except in the fourth month from administration but this time it is different, hope this trend scontinues.
Andy, how long it takes to reach the maxiumum HB, or there is no rule for that???
manal
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Umair, thank you dear for your wishes. They mean the world to me :hugfriend
manal
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:biggrin :biggrin :biggrin
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Manal,
I have read that it can take up to two years to see the maximum effect of hydrea. There is no rule, however. Each patient reacts differently and I think you are seeing that even in the same patient, things can vary. This may be related to something else he is also taking or even to his diet. If he is eating better now, that may make a difference. One thing evident from the article I posted about HQK-1001 is that the effect of hemoglobin inducers can be enhanced by using in combination with other blood promoters, and even iron supplements. I am not suggesting using iron at this point, but what was found was that even in cases where iron stores were high, adding iron resulted in a higher increase in Hb. The stored iron is not released easily and is little use in building blood. By adding iron, they provided the iron necessary for manufacturing new red blood cells. I have also read of another study where iron was given to intermedias and in spite of existing iron load, adding iron raised the Hb. Obviously, this would need much more study before anything is recommended, but it does seem that there has to be some dietary iron to build red blood cells. I would think that this also means that supplying the body with other supplements needed to make blood, like folic acid and magnesium, would also help raise Hb when used along with Hb inducers.
One question. Is Ahmad's diet any different than it used to be? Does he have more appetite for nutritious foods or even possibly, foods high in iron, like meats?
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Manal,
I am so glad to hear that Ahmad's hg has increased. I hope that you see continued improvement with the hydrea. I am also glad that his spleen has decreased in size.
Take good care, I hope to continue hearing good news about Ahmad,
Sharmin :hugfriend
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That's a great news Manal, :hugfriend this increase in hb is good,i hope the trend will continue.
What Andy said about adding iron makes me curious,are Ahmed's iron levels low or high?
Zaini.
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Congrats Manal. I am thrilled to see the increase of Ahmad's Hb.
Love
Puja
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Hi Manal
Glad to hear Ahmeds hb has hit 7hg/dl again. One month previous to using hydrea his hb was in the 7 range. So probably hydrea can do better and his hb next month be even better.
maha
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Thank you everyone for your wishes :hugfriend :hugfriend
Andy
Actually his diet didn't change a lot, he is even very picky and takes a lot of effort to make him eat what i find good for him, but generally he loves meat and many times he asks for another portion. In addition to food and supplemts, he still takes the carao, aloe vera (not daily) and i will start giving him the nigella oil in two days.
Zaini
Two months ago his ferritin was 62
Maha
Yes Maha it was the only time he hit 7 with no inducers, i was going to give him a chance without hydrea but as i said i was afraid the spleen will be out of control and at the same time i remember you had told me once that he needs to grow and that everything that can help him should be given at the same time, your advice had helped me to see the broader point and made a lot of difference, thanks
Thank you all for everything :hugfriend
manal
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Manal,
Are you going to give him nigella oil instead of seeds? Is nigella oil just as good as the seeds? I have seen nigella seed oil capsules, but I assumed that they may not have been as potent as the seeds. Is there a difference?
I hope that Ahmad has good results with all of this. I think that nigella has really helped little A in the short time that he has been taking it. He also has colostrum lozenges which I think are good for him too.
lots of luck,
Sharmin
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Hi Sharmin
Actually i was starting to investigate if there is any difference or not, but couldn't yet findanything straight. All what i can find is the recipes, foe example:
Nigella seeds with honey .....for autominue disease (what little A needs)
Nigella seeds with milk..........for jaundice
Nigella oil on skin..................for psoriasis, nails, baldness
Nigella oil mixed with honey...... for asthma, cold, flu and fatigue
Nigella boiled with vinegar......for teeth and gum pains
Nigella spoon boiled in water..... as a drink
http://www.kitchendoctor.com/articles/blackcumin.html
and so on, i also found a very good study about the difference between the seed, fixed oil, aroma oil.... but it was not available to everyone, sarcasticlly it was done in Egypt as it is assumed we have the best Nigella here for cultivation reasons
http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B6T6R-4846JJH-1M&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=2d3e10db8cc785f08d4b5682ae31f127
So i am still searching if there are any difference and of course i will updateyou if i find anything.
What made me want to try the oil is that it was hard to convience Ahmad taking the seeds and i just didn't want to pressure him cause i am already doing this with carao, but definetly i will try again but later on
Manal
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Thanks Manal,
I didn't know all of the uses of nigella. I will get the oil for my daughter's nails. I am giving it to her orally right now to make sure that she does not develop any (autoimmune) skin related problems - do far her skin is great but because her nails are dry I don't know if her skin could eventually be affected.
Sharmin
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HI Manal
It is good to hear that Ahmed's hb is improving. Hopefully it will keep on increasing.
Take care
Jade
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Thanks Jade :hugfriend, i wish that very much
manal
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Hi Manal,
I am so glad to hear that you son is doing well. I remember how happy and encouraged we were when Liv was on hydroyurea. I am so happy for you! How old is your son? Liv was a little over 2 when she started hydroxyurea. She was on it for about 2 years or so. She tolerated it well all her labs were always normal. I hope your son continues to improve :thumbsup Best of luck! :hugfriend
Just an update on Liv,
She is growing so much so fast! She is over 3 1/2 feet tall! She is still tiny to me she only weighs 37 lbs :rotfl. Last month, right after her tx she got pretty sick with a virus, we all did, she was vomiting and had 103* fever for 2 days so when we returned this month for her tx her hb was 7.9 her md wants to watch this to make sure its not going to a trend but she feels this drop was due to her illness. She began her 4th month of exjade so far so good. No side effects & the rise in her ferritin is not that much each month in comparison to before she was on exjade. I sould be getting her latest ferritin results today I will let you know. We are going back to oakland Aug 6th for her annual appt. I still struggle with my decision to begin tx. Its just so hard to be sure I'm doing the right thing. I will talk to you all soon Kathleen Happy 5th Birtday Olivia :bigparty
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Thanks so much Kathleen :hugfriend i hope the same too. I will keep you updated
I am so happy to know about the development of Olivia, it is worth the world seeing our children growing. I think that Oakland with their expierence in addition to your observation will make the best decision for Olivia, will be waiting for your update.
Wishing our little princess a wonderful birthday
(http://4.bp.blogspot.com/_j6Us4ZuIzQ0/SYZnnqLVQJI/AAAAAAAAAJs/edG460cTSOs/s320/totoro1.JPG)
manal
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Kathleen,
Its really good to hear that Olivia is doing great,you your self said that she is growing well so transfusion must be a right decision.
We did wish princess Olivia on her birthday here
http://www.thalassemiapatientsandfriends.com/index.php?topic=2662.0;highlight=happy+birthday+olivia
Happy birthday once again :wink
Zaini.
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Hi everyone,
Thank you so much for your kind words. It is still kind of a shock at times for me that liv has thal.
Maybe that sounds weird maybe because we didn't expect this. We found out when Liv was around 2 so we have known for 3 years now but it still seems unreal to me. :( I guess that everytime we enter a new phase of her treatment it is like I'm hearing she has Thal for the first time. I guess the unknown is scarey to me :dunno. Most of the time, I don't really think about it, we all go about our lives as if Liv didn't have Thal. even when she goes to the md every month it seems normal no worries, but for example her md was telling us that after a year of tx she will need to start going for more tests it just feels like wow she really does have Thal! In time that will become normal for us too. So I do question myself out of fear of the unknown which is something that I've been praying about. I'm trying to turn my fear into faith :biggrin. I wanted to thank eveyone for Livs birthday wishes she loved them. I didn't get to wish her a happy b-day on the site so I wanted to too. :biggrin Thanks again soo much Kathleen :hugfriend
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Hey all,
I just got good news!!!!Olivia's ferritin went down from 1185 to 1084 I'm so happy this news is so encouraging
:stars :stars :stars :stars :stars :stars :stars :stars :stars :stars :stars :stars :stars :stars :stars :stars
MY LITTLE ANGEL
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Hi Olivia Mary,
Great to hear her S.fe results , :congrats , i m also so glad to hear this news ...
:yahoo :clap :thumbsup :stars :party :happydance :stars :party :yahoo :clapcheerboy :thumbs
:yay :congrats :yay
:yahoo :clap :thumbsup :stars :party :happydance :stars :party :yahoo :clapcheerboy :thumbs
Best Regards
Take Care
Umair
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Way to gooooooo. Congratulations dear, so hapPpPpPpPpPyyyyy for you
keep up the good work
manal
:congrats :yaaaaaay :yaaaaaay :bigparty
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Kathleen, that is great to hear - I hope that her ferritin continues to decrease :)
Best,
Sharmin
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Kathleen.
Thats great news,the lower the ferritin in growing age,the better,it will help her grow normally.
Zaini.
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Hi Everyone,
Does Exjade work by removing iron from the organs first and then from the blood? If so could this be why Olivia's ferritin is dropping? Althought it is dropping slow, could that be? She olny had 6 tx before she was started on Exjade. So I was thinking that maybe she dosen't have much iron stored in her organs and that is why it is coming down. Any information will be appericate.
Kathleen :biggrin
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Hi Kathleen,
I think that must be the reason that Olivia's ferritin is going low,thats why getting started with chelation early on is good. :thumbup
Zaini.
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We are observing a trend towards chelation as early as possible. In the past, it was recommended that chelation should be started after about 20 transfusions, but new research shows that iron caused damage in the organs begins after just a few transfusions. We may eventually get to the point where chelation is begun with the first transfusion, as preventing iron buildup from ever occurring in organs seems most prudent.
By starting Olivia on chelation early, a condition of iron load in the organs can be prevented, so there is likely very little iron to be removed from the organs, so you are seeing the iron being removed before it gets a chance to start building up.
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Keep it up Kathleen. I am really so happy fr Olivia :hugfriend
manall
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:grouphug
Thanks for the information and support.
Knowing that Frank and I can help Olivia by keeping her healthy help us to feel not so helpless!
I can't believe Liv will be starting school in July! where does the time go!!!!!!
talk to you soon, Kathleen :lovethissite
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Hello dear friends
Today i did the CBC for my son after two months of using hydrea and here is the update
The HB is 7.3 (it was 7 last month)
Hematocrit is 23.4%( last month was 22%)
MCV is 60.8 (last month it was 57)
Leucocoytic count 7000 ( last month it was 6,300)
Total Bilirubin 1.8 (last month 2)
Retic count 4.8% (last month 6.2%)
All kidney and liver functions are normal
The spleen is enlarged by 4.5cm and the liver is 2 cm enlarged
From the clinical observation, the heart is stable.
What makes me really happy (thanks God) is that his height increased by 2cm in two months and now he is in the 50th percentile although he used to be in the 25th percentile. When i asked the hematologist about this possibility, she said yes because hydrea boosts growth
Thank you for your continous support :hugfriend
manal
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:biggrin :biggrin :biggrin :biggrin :biggrin
I am very happy to see that Ahmad continues to make progress and really excited about his recent growth.
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Manal,
I am so so so happy to hear this news :hugfriend I am glad that Ahmad's hg is higher and that he has grown. Please give him a big hug for me! I wish him more and more success with hydrea - higher hg and and two more cm in height next month!
Love,
Sharmin
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Manal,
(http://i229.photobucket.com/albums/ee38/hattieu_mf/2fcd.jpg)
I am so happy for you and Ahmed :hugfriend i hope his hb keeps increasing like this,this is all the result of your hard work and determination :hugfriend.
Zaini.
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Thank you so much my dear friends Andy, Sharmin and Zaini :hugfriend :hugfriend, it is all because of your continous support, thanks for all your wishes :hugfriend
manal
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Manal ,
i m soo happy to hear that Hydrea is worknig for Ahmad , i hope Hydrea will bring more benefit for him... its nice that He's growing on a good rate , hope to hear more nnews like this one from him ... i hope that he will contineu growing fast .. Best of Luck and Alots of good wishes for him ..
May ALLAH (G0D) bless him with the best of health and everything that he need ... May God will bless him with succes in all , wat he(ahmed) want to do AMEEN...
Best REgards
Take Care
Umair
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Thank you so much my dear friend Umair, your words means the world to me :hugfriend
manal
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:biggrin
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Alhumdulillah, I am so happy to hear Ahmed`s hb is improving. Inshallah, his hb will touch the 8gm/dl soon.
take care
Maha
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Dear Manal,
m glad to hear that Ahmed is improving MASHAALLAH!
i hope he will show much more improvement in future.
:goodluck :goodluck :goodluck
with best wishes and prayers,
Pareeshay.
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Many thanks Maha and Pareeshay for your wishes, i am so happy too :hugfriend :hugfriend
manal
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Hi Manal,
This is indeed a very good news. Ahmad is growing and Inshallah he will continue to be in good health.
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Thank you so much Canadian Family for your wishes :hugfriend, hope you and Miss A are doing great
Manal
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glad to hear such news about Ahmad.
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Thanks Mohamed :biggrin
manal
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Manal
I am really very happy for Ahmad. :hugfriend I wish His HB to go above 8.
With Lots of Love for Ahmad
Dimple
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Thank you so much Dimple for your wishes :hugfriend
manal
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Hi Manal
I am really praying that Ahmad crosses 8 in the next check up. I am sure he will.
Manal - also can you check with your haemetologist if the child has fever.. should we give hydrea in the same dosage or should we stop for a day or 2. Actually this doubt creeped in my mind last year when Prat had fever, and his wbc's had fallen due to infection.. Dr Marwaha said to stop the hydrea for a week. Even during the spleenectomy time.. when he was operated, hydrea was stopped for more than 10 days.
What could be the reason and how much gap we should give if the child is down with fever or infection.
Thanks
Puja
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Hello Puja
I am just back from my hematologist and i asked her about this, she told me that hydrea is dose dependant and she would lower the dose during infection (half the dose) and not stop it completly
Unfortuatly, i did the CBC today and it was horribal, the Hb dropped from 7.3 to 6.1 and i usually have the RBCs count around 3.5 Today it was the first to see it 2.8
The only thing that was risen is the MCV, it increased from 60 to 66
My doctor said not to worry cause the whole month he got virl infection, fever for 5 days and also bronchitis. Now he is fine only nasal back charge, but thanks God he is still active and the spleen and the liver are moderate. Liver anf Kidney functions are all normal
My hematologist has changed the dose of hydrea from 20mg/kg to 15mg/kilo. Also the L-carnitine is changed from 5 days per week to only 4 days per week and will be seeing her in a month.
As for the growth, it is fine. His weight is in the 25th percentile (he gets full with very little quantities of food) and the height is between the 25th and the 50th percentile
manal
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Manal,
I am sorry to hear that Ahmad's hg has dropped, I hope that it is temporary and that it will increase by your next appointment. I am glad to know that he is active and that he looks well. I guess his lower hg can be attributed to his fever this month. I am also happy to know that his kidney and liver functions are normal. Is there a reason why his hydrea and L-carnitine have been decreased?
Hi height and weight are good, that is a very good sign - he is growing and thriving.
please keep us posted, I wish him the best :hugfriend
Sharmin
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Thank you so much Sharmin :hugfriend
Actually the clinic was so crowded yesterday and couldn't have much time talking to my doctor, but i guess ( i will have to confirm by by next appointment) that lower doses of hydrea were seen to be more effective in inducing fetal Hb as i got to know from listening to Iranian doctors in one of the conferences
But again i will have to confirm
manal
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I am sorry to hear this. I hope the hgb is going to be brave and will climb up the mountain again!
:hugfriend
Best wishes, Dore
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Thanks Door for your wishes :hugfriend I like the analogy you made very much :biggrin i hope too that we can reach the summit of the mountain :wink
manal
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I hope you get good results with the new dose. Ahmad's hg will go up very quickly Manal, I just know it.
Sharmin
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Manal,
We have noticed that lil A's hg is always higher (significantly higher) if we check it first thing in the morning vs the afternoon. Do you always check Ahmad's hg at a specific time of day?
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Thanks Sharmin :hugfriend
We usually check it around 5 pm more or less cause ahmad is so much attached to a certain person who withdraws the blood and usually this person works at the night shift and does not work in the morning.
manal
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Hi Manal
Actually lowering the dose of hydrea makes more sense than skipping it. Personally what i do is that I skip a day when Prat is having high fever that day. I dont know why but I just felt that it should be done this way. Doctors did not have any explaination for it or a confirmed(right or wrong) answer, wether we should skip or not. My logic is that hydrea besides kick starting the foetal hb - makes the wbc's go down as well... so if the child has fever the wbc's will anyways be low, therefore I feel comfortable by not giving hydrea that particular day. Also for stopping a day or 2 should be ok, as the dosage is taken into account is on a weekly basis.
Dont worry about Ahmad's hb, it is due to viral. i know it is frustrating, slowly we see it going up and then one infection and it comes down drastically. It does feel like climbong a mountain.
Another perspective to viral infection's is that for every human being - twice a year such a viral infection is beneficial as it keeps the body's immune sytem working. Also fever is a way to show the body's immunity is working. Anythign more than twice a year is not so good.
1. Another question which comes to my mind is - should we give vitamin c when the children our down with such kind of infection. May be not the normal dose of vitamin c but may be 100mg or something for thal kids. ANy comments on this. Will it help? i know iron absorbtion is an issue.. but then what do we use to ward off such infections.??
2. Also should we increase the dose of vitamins for thal kids as compared to their ususal intake... will that help.
Wishing Lots of heatlh , happiness, abundance and joy to all my dear thal pal here.
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Hi Puja - I have missed you :hugfriend
I don't know the answer to most of your questions - but I do think that small doses of vitamin C between meals is a good idea - ideally from citrus.
Sharmin
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Puja,
If the iron load isn't high, it is safe to take 100 mg daily vitamin C. It would be best taken between meals to avoid added iron absorption. Citrus juices are also good and will also help battle the infection. There are two problems with vitamin C. One is that it helps absorb more iron from food. The other problem is when there is a high iron load, vitamin C can release too much iron from the tissue and organs into the blood where it can gather in the heart, reducing heart function. This is normally only a concern in transfusing patients. You should also consider using echinacea during colds and infections. During infection it is normal to see a rise in serum ferritin level as the body sequesters iron in the serum ferritin in order to lower the availability of iron to the invading virus or bacteria, both of which thrive in a high iron environment. Because of this, it may be beneficial to take IP6 during infections to take advantage of the opportunity to reduce the iron in the blood.
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Thanks Andy prat's iron checked last time about 6 months back was around 200. His next check up is due this month. This IP6 can he continue with his regular vitamins with B complex and mulitivitamins. or will it be an over dose of vitamins.
Also during infections for thal kids do we increase the dosage of vitamins or maintain the same..
Luckily I had adhered to your advice and started fresh wheat grass juice, so the infection was not very sever. I have not checked the hb so don't know what was the affect on the hb.
Thanks
Puja
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Puja,
IP6 can be taken all the time along with other supplements. It will not be found in the B-complex or a daily vitamin so it does need to be taken in addition. It should be taken on an empty stomach with a full glass of water at least 30 minutes before eating for best absorption. If it bothers the stomach, it's OK to have tea after taking IP6, but no milk. If his iron levels rise, you should consider taking IP6 all the time. Even without high iron, IP6 has great value for its antioxidant effect. Iron is not the only cause of oxidative stress in thalassemia. The imbalance of alpha and beta globin also leads to oxidation, which is believed to shorten the lives of red blood cells. Antioxidants play a big role in the health of thalassemics and a diet and supplements high in antioxidants are keys to countering the stresses present in thal. I asked Dr. Rachmilewitz at the Singapore Conference about the possibility of combining Fermented Papaya Preparation (FPP) with antioxidants like vitamin E and IP6 to measure the cumulative effect and he seemed very interested in this idea. In fact, the next time he gave that same presentation at a lunch at the conference, he had added that suggestion to his talk. Because FPP has been shown to increase the effect of other supplements it is quite likely that it will do the same in combination with antioxidants.
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i know it is frustrating, slowly we see it going up and then one infection and it comes down drastically. It does feel like climbong a mountain.
This is exactly what i feel :mad :mad
Thanks Puja for your wishes :hugfriend
manal
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do not worry Manal.
you are doing great with Ahmad. i know it is bad to hear that HB falls but,
in my opinioin; the HB ABILITY TO RISE(even if it falls one or two times) is our goal. even much important than escalator rising.
by other words:
our goal is to be in the safe mountain, may be one day on top, other day in middle but never in the base. cause only the base is harmful. of course top is great, but the goal is the mountain itself at the end. cause we may meet wind or rain while climbing but as we are always able to climb again so no problem
so dec in HB of Ahmed after infection or any other insult is not a problem, cause he is capable to overcome this (in shaa Allah) and continue his brave rising in the future.(as we know that the cause is infection wich is a transient cause)
so cheer up you are great mother with great child. continue fighting.
it will rise again :clap
mohamed
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:agree
:wink Sharmin
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Thanks Andy
I will start IP6 shortly and will update you with the prgoress.
Manal - cheer up my friend.. Ahmad is fine.. remeber...Think positive
Love
Puja
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Puja,
How is Prat doing these days? His hg had reached 10 at one time, and then he had experienced a drop when he was sick. I hope that his hg is high again.
Sharmin
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Hi Sharni
I have not checked his hb since last month, as he had a viral infection. I am giving him some time to get better and then will get the hb tested. Going to India for all his check up's will post soon with all teh results.
Love to lil A.. how is he doing.
Andy - what will be the dosage required for IP6 for prat , he is about 30 kgs.
Thanks
Puja
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Puja,
Twice or thrice a day will be enough,Lil Z is about 27-28 kg and sometimes she takes 2 caps and sometimes three,it depends on when and how i am able to put it in her schedule of meds as it has to be taken on empty stomach.
Zaini.
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Mohamed, Sharmin, Puja thank you all my friends for your care and support :hugfriend
Hope all our kids will be just fine
manal
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Hi Manal
I am really sorry to know about Ahmad infection and drop in HB. But i Hope and I pray that he recovers soon.
Dimple
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Thanks Dimple a lot :hugfriend, I hope you and Priya are doing well
manal
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Hi Zaini
Empty sotmach is like one hour before and after no food or is 30 mins considered ok. Also as i am going to buy it from India, what is the mg I should look for. If it 500 ? then is it ok to give 2 (ie 1000mg) together.
Thanks
Puja
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Puja,
Empty stomach will be two hours after meal,or if you are giving him first thing in the morning then don let him take his breakfast atleast for 30 minutes after IP6.I do actually give Lil Z 2 caps at a time and its been a while and we haven't seen any problem with that.
Zaini.
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Hi ZAini
What is the reason for having such a long gap. With the whole list of vitamins and medicines...2 hours is really difficult to find.. Also is it very strict that the milk cannot be taken with in one hour.
If we give it first thing in the morning, then the milk and breakfast schedule gets affected.. how do u find time to squeeze it in.
Thanks
Puja
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Puja
If IP6 is combined with protein, IP6 loses its efficiency or function. That is why itshould be given on empty stomache. May be you can give it to him one hour before he wakes up, he can swallow it with a glass of water and continue sleeping
manal
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Manal, :hugfriend
I hope you are fine , haven't seen you on the forum for a while,hope everything is ok.
Zaini.
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Hi Manal,
I was thinking the same thing - missing you here,
Sharmin
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Thank you so much Zaini and Sharmin for your concern and wishes, but actually i am suffering from a really awful pustule that is totally closing my right eye and causing a lot of pain and swelling. The doctor gave me an antibiotic (Augmantein 1 gram twice a day whch is very harsh on my stomach and can not tolerate it in addition to continous dizziness),also an anti bacterial cream and drops too. You ought to see me i look like a boxer who has been punched in the eye :rotfl :rotfl
He advised me to avoid TV and computer screens as possible to avoid tiring the other eye. That is why i wasn't able to log in a lot.
I really miss you guys so much and i am sure i have a lot of posts and news to catch.
Lots of love to everyone :hugfriend
manal
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Manal,
Can you try a different antibiotic?
:getwell
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Thank you Andy so much. Actually i asked the doctor to change it but Augmentin is the only one that is available in (2 grams daily).Looks like a tough bacteria.
He suggested taking Augmentin shots instead of the tablets but i am a big coward so i have to endure the nausia and the stomache ache. I try to take it in the middle of the meal
manal
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Manal,
I hope that your eye gets better very soon - that must be so tough not being able to open your eye. Very nice to hear from you my friend :hugfriend
Sharmin
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Thanks dear, you are right it is very annoying especially it is the first time having such a thing
manal
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Awww Manal,
I hope you feel better soon :hugfriend .
Zaini.
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GET WELL SOON MANAL!
You're in my prayers too!
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:getwell :getwell :getwell :getwell :getwell :getwell :getwell
:getwell GET WELL SOON MANAL SIS , :getwell
:getwell :getwell :getwell :getwell :getwell :getwell :getwell
Best Regards
Umair
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Thank you Zaini, AL and Umair so much for your wishes. :hugfriend
It is better today and started opening my eye but the pain is still there, hope it will recover soon
Hope you are all great :hugfriend
manal
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Hi Manal
Glad its getting better. Are you taking any B- complex? If not do start it. 2g of antibiotics can really give very bad and painful mouth ulcers.
get well soon
maha
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Thanks Maha :hugfriend, I am on Centrum only but definetly i will look for the B- complex, thanks dear
manal
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Dear friends,
To remind you of my son's last update, it was
Unfortuatly, i did the CBC today and it was horribal, the Hb dropped from 7.3 to 6.1 and i usually have the RBCs count around 3.5 Today it was the first to see it 2.8
The only thing that was risen is the MCV, it increased from 60 to 66
My doctor said not to worry cause the whole month he got virl infection, fever for 5 days and also bronchitis. Now he is fine only nasal back charge, but thanks God he is still active and the spleen and the liver are moderate. Liver anf Kidney functions are all normal
Today, i did the CBC after one month :yahoo :yahoo
HB is 7.8 ( I am soooo happy, we never reached this before :cheer :cheer :veil :veil)
MCV 68.2
Red cell count 3.48
Haematocrit 23.8%
Only the Leucocytic count has dropped from 7000 to 5,200 and this is really what worries me cause i will be forced to stop hydrea if it reached 3500 (i pray not :pray :pray)
Tomorrow i will receive the liver and kidney functions in addition to the retix count and also will vist the hematologist
Questions:
1- I am wondering is it possible to increase from 6 to 7.8 in one month???
2- Till now i can not set a constant trend for the effect hydrea on HB increase??? But i hope it will offer us a little bit more increase :pray :pray :pray
3- I am wondering, does lowering the dose of the hydrea this month had any significance in this increase or there is no relation???
I will keep updating
manal
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Manal ,
I am really glad to hear that :biggrin its indeed a good news i hope Ahmad will have much more higher hb then that :thumbs keep up the good work .
Zaini.
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Hi Manal
This is great news. So happy for you and Ahmed :hugfriend. The next summit is a close 9. Keep climbing
maha
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Manal Sis,
i m very glad to hear this , :congrats to you and Ahmed .. i hope he will reache 9 and then 10 in soon future , best of luck ...
Best Regards
Umair
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Thank you Zaini and Umair so much for your wishes :hugfriend
manal
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Manal,
That is such wonderful news!!! I am so glad that Ahmad's hg has increased to 7.8 - I hope that the next blood test will reveal that his hg is above 8!! I also hope that his leukocyte count returns to normal for the next test.
Perhaps decreasing the dose did help, and maybe you have been on hydrea longer now and that is what caused his hg to increase. I am just so glad that his hg is higher. Does he also look more pink to you now?
Please give the little cutie a big hug and kiss from me :bighug
love,
Sharmin
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Manal,
What you are seeing is the result of fine tuning the dosage. Hb is up and along with that, a drop in leukocytes is often seen. If it gets too low, then another dosage adjustment would be due. Yes, it can increase that much in one month and lowering the dosage is the cause. Every patient on hydroxyurea responds a bit differently, so this balancing act between bone marrow suppression and HbF induction has to be done. As I said, there could be further fine tuning of the dosage but this latest result is very encouraging. One other thing that should be remembered is that factors outside of the hydroxy can be responsible for fluctuations in white cell counts.
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Thank you Sharmin and Andy for the support :hugfriend
I am back from my visit to the hematologist and she too thinks that lowering the dose, could be a reason for this increase ( remember also we decreased the L-carnitine from 5 days/week to 4 days/week)
The kidney and the liver functions are normal.
The ritex count has decreasedfrom 6% to 3%
But the Total bilirubin was 1.6 last month and increased to 2 :huh :huh though HB increased :huh
The spleen is 6cm long which annoyed me cause his usual range was from 3cm to 5 cm only more, but the doctor comfortd me by saying not to worry because he had a cough ( almost for three weeks... allergy) and she said that the cough can cause more enlargement to the spleen and prescribed me a prepared drug for the allergy which i hope it will go in 10 days
Andy
1-One other thing that should be remembered is that factors outside of the hydroxy can be responsible for fluctuations in white cell counts.
Andy do you mean by this infections or there are other reasons??
2- Andy, do you think giving natural Hb inducers like resvertrol for example in combination with hydrea, could help or this would imbalance the dose that we balanced???
Thanks for everything :hugfriend
manal
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Manal,
Yes, the infection is a factor. But life is also a factor and you will seldom see the same results in these blood counts. The margin of error in the test is another reason. This is why I don't like to get hung up on fluctuations in tests, as long as they are not in alarming ranges. We see with liver tests that the time of day of the test alone is a factor in the results. There will be times when there is no apparent reason for the variation in test results, and we see this with hemoglobin results constantly. We see it with all the components of a complete blood count. I don't think it means anything other than tests are not exact and neither are the bodies of people. The body regulates so many functions and often takes from one area to benefit another area, so it is only when there are long term levels that are significantly out of range, that you can automatically assume there may be a problem.
I do believe that taking various supplements that can help boost hemoglobin levels can help each other and inducers like hydroxyurea in a positive way, so that you have a cumulative effect. I would also say that it should be noted that nigella should be added to the group of known hemoglobin inducers, as this has been shown in studies in addition to what we've seen with Ambareen.
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Thank you so much Andy, things are much clear now :hugfriend
manal
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Hi Manal
When is the next test of Ahmad. I met Dr Marwaha in India and he said the following for Prat, which I think should be applicable to all on hydro oxy:
1. The dosage of Hydro oxy doesnt need to be increased , if the hb is stable and even if there is an increase in the weight.
2. The bilirubin for thal kids is considered normal even if it is on the high side. Normal range for SGPT is 0-40U/L but for thal kids it is ok till 200.
3. Retic count in the bone marrow increase is showing the Bone marrow is working. Prat's retic count has further gone up from 8% to 26 %. He said it is ok and is a good sign.
Another thing which he highly commended us was the usage of supplements. i had printed out some of the posts of yours' and Andy and he read it and has kept it with him. He wants to recommend some supplements as well to some of the patients.
So looks like we are on the right track.
Thanks
Puja
I will post the results in the relevant post.
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Hi Puja
Actually i am out of town now, spending the summer vacation and won't be back before mid of August so probably i will postpone the CBC after i am back because i prefer dealing with a certain lab that has no branches here.
3. Retic count in the bone marrow increase is showing the Bone marrow is working. Prat's retic count has further gone up from 8% to 26 %. He said it is ok and is a good sign.
I never understood this :huh :huh :huh Usually when the retic count is high, this is due to low HB and hemolysis so we should expect that when the HB increases the retic count decreases too. Actually this is what is happening with my son after using hydrea. When his Hb was around 6.5, the retic count was in the range of 8% to 11% and when the Hb increased to 7.5, the retic became in the 3% range. So should i consider this a bad sign according to Dr. Marwaha?????????????????????????
Another concern of having a high retic count is the bone deformity. What is Dr. Marwaha's thoughts about it???
manal
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Hi Manal
if I understood correctly Dr Marwaha said that retic count is the small rbc's in the bone marrow but in thal kids normally it is not there as the bone marrow activity is very minimal. So rectic count in Prat has increased it shows that rbc's are being made but these rbc's were destroyed by spleen as these are the baby rbc's. Now we are seeing an increase in prat it is primarily due to spleenectomy, as spleen is not destroying these rbc's. I only understood this much and am not sure wether I understood correctly but over all Dr Marwaha was satisfied with the reports.
Bone deformity - was not discussed. I dont understand the contradiction. To need a higher hb we need bone marrow to work, but in thal kids this is considered bone marrow over activity. So how do we get a higher hb. It is like a chicken and egg situation.
I think bone deformity is due to overexertion of bone marrows to keep up the HB , but if the hb is sustaining at a certain range then by right bone deformity should not happen as bone marrow work must be the same everymonth but again if the rectic count is increasing it shows in over exertion.( I am just guessing this.. I really dont understand this).
AS for Ahmad.. dont think negative it is a very good sign that hydro oxy urea has worked and his hb is on the rise. Also as Andy rightly said sometimes we dont have all the answers Manal,
Yes, the infection is a factor. But life is also a factor and you will seldom see the same results in these blood counts. The margin of error in the test is another reason. This is why I don't like to get hung up on fluctuations in tests, as long as they are not in alarming ranges. We see with liver tests that the time of day of the test alone is a factor in the results. There will be times when there is no apparent reason for the variation in test results, and we see this with hemoglobin results constantly. We see it with all the components of a complete blood count. I don't think it means anything other than tests are not exact and neither are the bodies of people. The body regulates so many functions and often takes from one area to benefit another area, so it is only when there are long term levels that are significantly out of range, that you can automatically assume there may be a problem.
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HI Manal
Did you carry out the tests for Ahmad?
I hope that you will have even better results this time.
Keep us informed.
Take care
Jade
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Thanks a lot Jade for your concern :hugfriend
Actually i am still out of town and will be back by the end of this week, so i will do the CBC by September first but to tell you the truth i don't have high expectations as he was having a fever a coupe of days ago.
As soon as i get the results, i will let you know my friiend :hugfriend
take care
manal
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Is Hydrea a kind of Epo?
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Dore,
What do you mean by Epo? Its a drug used in Chemotherapy.
Zaini.
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Erythropoietin (EPO) is a protein that naturally occurs in the kidneys and stimulates the production of red blood cells in the bone marrow. It is sometimes used along with hydroxyuea in thal intermedias especially, with varying results.
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Thanks for clarifying Andy :) .
Zaini.