Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: Sharmin on June 08, 2010, 02:55:15 PM
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Hello friends,
I have a few updates on Lil A. In the fall his antibodies re-emerged and his transfusion requirement began to increase to every 2 weeks. At that time we attempted a homeopathic treatment and we found that after a few weeks on the treatment his transfusion requirement reduced to once every 5 weeks. At the same time, during a vacation he got an infection in his stomach so we stopped the homeopathic medication and all supplements for a while. After a few months his hemoglobin began dropping and his transfusion requirement once again became every 2 weeks. The doctor put him on a large dose of prednisone - causing the same side effects including irritability, facial swelling etc. but his transfusion requirement remained every two weeks. In May we decided to try the homeopathic again - within weeks his transfusion requirement dropped to every 3 weeks - and this time when we went in for a blood test at 3 weeks his hemoglobin was still 109 - therefore he can now be at 4 weeks.
The homeopathic medication is changed slightly every two weeks - the dose and type of medication is varied in order to remain effective. We think that he is responding to it. His prednisone has since been reduced to 1/4 of what it was - to be honest I don't think the prednisone is having any effect as the homeopathic meds worked even when he had no prednisone last fall. I was a little reluctant to put him on these meds - but they are so effective and far less risky than steriods.
He has been on exjade alone since August - and his last ferritin was 452. We may give his stomach a rest by reducing the exjade further for a little while - as he often complains of stomach ache. We then hope to reduce his iron levels further.
Thank you all for your ongoing support and let me know if you have any questions - and if our experience can help you in any way.
Best,
Sharmin
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Sharmin
What kind of homeopathic treatment you were using?? Did Oakland had any comment on your findings??
I am so happy to know that the ferritn has dropped to less than 500
You are doing an excellent job :wink
Manal
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Sharmin,
Its great to hear that homeopathy worked for Lil A,and you are right its less risky then steroids,i was wondering do you know any kids who may have tried this homeopathic meds just to increase transfusion interval,even if they don't have antibody issues? May be it can help in increasing transfusion interval anyway.
Good luck with everything :hugfriend .
Zaini.
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Hi Sharmin,
I am so glad that the homeopathic medicine is helping increase little A's transfusion interval. That is really great news.
Zahra
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Thank you Manal, Zaini and Zahra,
It means everything to have your support. I have been thinking the same thing, that the homeopathic medication may provide protection for red blood cells and therefore it may help all of you. That was my reason for posting this information.
The homeopathic doctor who is seeing Lil A comes from a family that has been working in this field for generations. His father is the best known homeopathic doctor in the area of India my dad comes from. Lil A's doctor consulted with his father to begin making Lil A's medications. He changes the medication every 2 weeks - but I will try to get as much information as I can to post it here. I plan to sit down with him to talk about it.
In the past we have tried chronic steroids, ritixumab, IVIG etc to deal with these antibodies - so far the only thing that has worked is this homeopathic medication. Thankfully, we are now off of the ritux and IVIG completely. He is on a small dose of prednisone for the time being.
I will post more soon,
Love,
Sharmin :hugfriend :hugfriend
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I also wanted to mention that this doctor feels that over time he may be able to reduce Lil A's transfusion requirement even further. I hope that is the case. My hope and prayers are that Lil A continues to have at least 4 week intervals between transfusions. He'll be off of the homeopathic meds while he is away at camp for the next few days.
Three people that we know have been completely taken off of diabetes medications with homeopathic medication. My dad's sister has had diabetes for years and even with medication she used to become very sick due to her diabetes. Currently, she is off of her diabetes meds and has had normal levels for a years using on the homeopathic meds. Doctors are baffled but agree that she does not require meds anymore.
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Sharmin,
That would be so helpful,Homeopathy is so common here too,but we tried it initially when Z was diagnosed but i didn't see any results,so we stopped it,if your doctor can provide names,i'll be able to run them here with any homeopathic doctor.
Take care,
Zaini.
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Sounds good Zaini. I will post the names soon:)
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Dear Sharmin
If you can give us the name of your Doc's ffather in India , then may be we we will consult him .
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Hello Sharmin,
I happy to hear little A's ferritin level! Mine did also drop to 400 but then I stopped with Exjade for a few weeks.
I am glad there is improvement between his transfusion intervals. I wait for you add. information.
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Hi sharmin ,
its nice to read/hear that all... its very nice to know that lil-A's Fe is now within/close to normal range ... and abt homeopathic thing , that s amazing .. wishing and praying for his best health n future ...
best regards
take care
Umair
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ANI - I believe he is located in Punjab - the MOGA area. His name is Dr. Brar. I will ask my dad for more details. Good luck:)
Dore and Umair, thank you for your wishes. I am also glad that Lil A's iron levels and hg intervals are improving. I hope you both are doing very very well :hugfriend :hugfriend
Sharmin
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Wow Sharmin....
I am so glad for Lil A!
Homeopathy is undermined I think....I am glad that it is helping so many people you know and it would indeed be nice if all at the forum can benefit too...
Congratulations once again,I am so happy for you!(Sorry for the delay in checking this post!)
Love always,
Madhavi
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Thanks Madhavi :hugfriend :hugfriend
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Hi sharmin, I've been thinking of u for some time now and I'm so happy to hear about little A. I saw your post a bit ago and called but I know u have been busy. give little A a big hug from us! Please call me when u have a chance so we can catch up.
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Thanks Carisma,
I have been thinking of you and lil Ari as well :hugfriend The children's school year is wrapping up and we are moving to a new home in a few days. I will call you as soon as we get settled. I hope that everything is going well with you :hugfriend :hugfriend.
Sharmin
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Dear friends,
Lil A has been out of his cast for 3 weeks now. We leave for Oakland on Sunday. He will be seen by the group there and then we will drive to LA where he will be seen by Dr. Wood. We have enrolled him in a pancreas and pituitary study. I hope all of the results will be fine.
I will bring back any information Dr. Vichinsky and Dr. Wood have to impart during our visit.
We will miss you all and look forward to getting back to you soon,
Sharmin
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Sharmin,
Bon Voyage my friend,i am glad that Lil A is out of his cast,i hope he is feeling better too,i am sure the results will be fine :hugfriend .Will miss you here :hugfriend .
Zaini.
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Thank you:) I'll miss you too! We're gone 2 1/2 weeks and I start school once we return. It's been a busy time!
I wish you all the best.
Sharmin
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I hope you all are doing well. Lil A's appt went well. His SQUID result was 700. Pretty good considering that we had to take away exjade for two months (due to extreme stomach issues - I would not recommend it under any other circumstances). We hope the next result is closer to 100 or below.
Dr. Vichinsky was very very caring and helpful as always. Lil A's vitamin D is better than before - but Dr. V wants it higher he put us on 50,000 IU a week for 8 weeks. He also wants lil A to have more zinc. Although his bone density is in an acceptable range he wants him to build more bone density right now to avoid problems when he is older.
He was very very optimistic this time around about the future of thals. About them living full lives, having children and being cured in the near future. He was optimistic about gene therapy and told us that a new oral chelator will be available next year. He said that combination chelation will be used a lot more now and that it is most effective and produces the least amount of side effects.
He insisted that all thal patients and families look into consulting counselling services as children grow and the responsibility shifts from the family to the patient. He also insisted that doctors talk to the patient rather than the parents at this age.
I am at a hotel and will write more once I get home.
I hope this is helpful to all of you.
Best,
Sharmin
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Thanks for an update Sharmin,
Good to know everything is fine,regarding Vitamin D ,Few days ago i was talking to my cousin who is a family physician and when i told her that me and my daughter we both take 1000 IU of vitamin D daily,she was like you don't need that much and you shouldn't be taking this much,neither you nor your daughter,i reminded her that me and Z both were deficient according to our blood reports,but she said that body requires only 400 IU daily,not more then that.To be honest,i did become a lil bit concerned when she said this so confidently,but then i remembered how much D Andy takes and has been taking for a long time,so i went on with 1000 IU,and now i am happy that i did,seeing what dose Dr Vichinsky has put Lil A on.
Will wait for your another update :hugfriend
Zaini.
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Dr Vichinsky told me exactly the same thing at the NYC conference. They do not see good results turning around vitamin D deficiency on low dose and doses of 50,000 IU were being used to get some real progress. The research on vitamin D is progressing rapidly and what was considered a proper dose just a few years ago is now considered to be useless. Dr Vichinsky's program will ensure that little A's bones are strong during his developmental years and will prevent many problems in his adult years. As thals are growing older, many new problems have come to light, and preventing osteoporosis has become an important goal. With thals, an ounce of prevention is worth a ton of treatment.
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Hi Sharni,
so nice to hear about LilA doing well & his SQUID number is great. Your post is so encouraging. Thank you. Today I was feeling low and came to this site and already feeling uplifted.
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I want to take this opportunity to remind everyone why I am so convinced that an annual evaluation is necessary. These small steps being taken with little A will have huge rewards over the years. Making any necessary changes to the treatment program are the result of this annual evaluation and this has long reaching importance. An adjustment here or there may seem like simple things with minor meaning, but they are extremely important for the long term. Do we want patients who are constantly trying to correct situations as adults, or do we want patients who are able to avoid so many of these problems as adults, because their treatment has been modified as needed throughout their younger years.
Never hesitate to get those annual evaluations.
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Hi Sharmin and dear friends
I am so happy to hear about the good news of little A, congratulation. Both of you are doing an excellent job and i am happy too that you will be meeting Dr. Wood, he is a wonderful doctor.
I am too very interested in this issue of bone density. On what basis or reference did Dr. Vinchinsky decided that he wanted the the bone density to increase. Is it the DEXA???
Is taking zinc, the way to increase bone density???
Concerning DEXA, in the last conference i attended, a doctor mentioned in his lecture that DEXA is not reliable for children and that even there are ''normal ranges'' for every ethnic group. He mentioned too that most of the comparison references have to do with the diagnosis of osteoprosis in women in the 50s
Actually i can not recall all his point of view, but what i am sure of is that he said that the clinical observation, is more important and if the child has to do the DEXA, it will be compared with the closest ethnic group and then each time you do a DEXA, you will take the previous one as a reference for the new one. Hope you can understand what i mean
manal
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Hi Manal,
Lil A had a Dexa one year ago and he had one during this visit. We don't have his most recent results yet, but the DEXA done one year ago was normal for a normal child of his age. I don't know if they took into account his ethnicity. Dr. Vichinsky felt that it would benefit Lil A to get his bone density higher so that he does not have problems over time.
In order to increase bone density his clinic has done several studies. Zinc on its own has had significant affects on increasing bone density. His clinical nurse told me to put Lil A on 20 to 25mg of Zinc a day.
Another factor in increasing bone density is vitamin D - vitamin D is very helpful for many many aspects of thalassemia. Calcium, magnesium and trace minerals are also very important. They stress milk and milk products a lot in Oakland. We were given many pamphlets on the importance of milk. They suggest to take lactaid with milk if milk upsets your stomach. They find that milk and milk products significantly increase your bone density.
Also, very importantly keeping up with transfusions - keeping a hemoglobin near 10 (at least above 90) in transfused thals is very important as it prevents the marrow from becoming unnecessarily active and making retics. This process weakens the bone from within as the marrow expands.
I hope this information helps, we are still in California. I will write more once we get home.
Best,
Sharmin
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We are still waiting to get results for the pancrease and pituitary study. The purpose of this study is to learn about iron deposit in these organs and the effect on their size and function. Hopefully Lil A's participation in this study will be helpful to others.
As Andy has said many times, getting the iron levels as low as possible is best to prevent impact on the function of these organs and possibly reverse the tissue damage by revoming iron and restoring function. Getting the iron levels as low low low as possible is very important. As Lena has told us - combination chelation is key - iron levels as low and close to normal as possible are best in order to avoid any iron related problems.
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As for this new chelation medcation: This doctor means that this new medicine will enter the lastest phaes of approval? Next year we can expect trials of a new medicine?
This brings me by Novatis newest application for Iphone.It is made for professionals to calculate how much mg Exjade a patient should get. At first I liked it untill I typed '500' as ferritin level. There was no advice because of the low level. A level of 500 was seen as healthy.
I also have heard that Dexa's by children are not reliable. As for vit D, there are more and more voices which are saying that the standards of vit D should be review.
I am glad to hear there is such study because I am very interested in that field of study. Please, share more details when you got them. I am glad to hear little A is doing well. Did you have a nice time there as well? (outside hosp.)
I am sorry, but I do not believe in milk. The most part of our world population is allergic for it.Here in Netherlands it was the industry who paid all the campagnes to let us consume more dairy products.
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Sharmin,
i'm glad to see his latest results ... i wish himm all the best of everything ....
Best Regards
Take Care
Umair
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Thanks Sharmin, this was very helpful. Hope you are all doing great :hugfriend
manal
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hey sharni ....well m replying so ...so late on this i m going to patiala on nov 22nd so if u can give me correct add of this dr braar so that i can take mannat over there and get the same treatment is it that the iron levels and the transfusion levels have reduced .....then i think we can be so positive about this oiutcome and m soi happy for ur lil one...............i know the pain that we go thru sharni .......mani is on transfusions twice a month and that too there seems to be some blocaklage in her left veins as the blood doesnt go thru her left veins ..........m really upset as i dunno is it common or rare case
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Lil A has been sick since Wednesday morning. His fever was 41 that morning so I called paramedics. He was transfused Friday and seemed to be getting better. Since yesterday his temperature has been between 37.9 and 38.5. He is also complaining of stuffed nose, pain in throat up to his ears (due to congestion) and his right eye is swollen, almost shut and he is having discharge from it. He was seen by his doc on Friday during the transfusion, but some of this has developed afterwards. I am not a proponent of antibiotics - but does it seem like it is about time? Andy, what are your thoughts, considering lil A's immune status? His white cells etc are normal, but his antibodies are suppressed.
Sharmin
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Sharmin,
This is always a tough call because you could ask for a test of any discharge from the eyes or lungs, but that takes time and could give an infection more time to get established. Is the eye discharge clear like water or is there some color to it? Are his glands in his neck swollen? I am not one to jump to antibiotics over ear pain, as this is probably the number one cause of needless prescription of antibiotics in children.
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He was seen by a doctor and put on antibiotics this afternoon. The doctor said that the infection in his ear and eye was severe and that it needed to be treated. I hope he is over this stupid cold soon now!! His hemoglobin is going to drop once again because of all of this!!
I have my first law final exam tomorrow - with all of this going on I didn't study as well as I should have but I'll give it my best shot. I have exams all week - and I'll need good vibes from all of my friends here to do well :hugfriend :hugfriend
I'll keep you all posted - I hope everyone is doing well and not getting sick - this is a nasty virus!!
Sharmin :hugfriend
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Best of luck my dearest friend in your exams, i am sure you will do great :hugfriend and i hope that soon little A will be okay, send him a big hug for me :hugfriend
Actually, these days everybody is sick, the weather is awful and ahmad too had a fever for 5 days and then two days later his sister had one too till yesterday so i can imagine how annoying this can be
Sharmin keep us posted and much love to all of you xoxoxo
manal
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Manal,
I hope your kids feel better really soon. Take care of yourself too, it can be really stressful when the kids are sick.
:hugfriend Sharmin
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Andy,
The discharge is not clear - it seems quite infected. I emailed you a picture of what he looks like. Poor kid, I hope he's better soon.
Sharmin
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Sharmin,
Poor kid. He definitely needs the antibiotics. I hope it clears up soon. Good luck on your exam.
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Thanks Andy:)
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Hi Sharni,
Hope little A feels better soon. Best of luck for your exam. you will do fine....
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Thanks Bostonian,
There is improvement today:) The swelling on his eyes has come down and he no longer has fever. I have one last exam to write on Friday. I'm trying to motivate myself to study - but it is so close to Christmas and my concentration is breaking :)
I hope you and your family are doing great:) Hugs to your daughter,
Sharmin
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hey sharmin,
best of luck for all ur exams........i know u will win in every situation neways feel so bad for lil A .....hope he gets well soon i know if ur child is not well it effects the entire family ......as we really cant concentrate on anything else apart from this ...neways u take care
as i was goin thru ur post was feeling so lucky :happydance tht its ok tht we all sail in the same boat but the best thing about this boat is tht we all are there for each other despite of our bsy schedules to login share our problems our hapiness or our discomforts ...so far away from each other but still we all feel for each other from our heart .....as we also havent seen anyone of us as of yet but it feels good
thank u andy,manal and zaini......infact all the members to be there for us thru our trials..... :insomnia :insomnia
hats off to all u guys ...........for being there always :flowers
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Thank you my dear friend, that means a lot :hugfriend :hugfriend :hugfriend
I hope everything is going well in your life :)
:heartpink Sharmin
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Thanks Pleasance so much :hugfriend :hugfriend You are so right, in spite of all our busy lives, there are room in our hearts for each other. Much love to you and everyone here xoxoxo
manal
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I am sorry to read Sharmin. Although I am happy you had your exams before the Christmas break as we have them at the third week of January. I hope those exams went well. What kind of subjects did you have?
Lots of love always, Dori
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Hey Sharmin....
Sorry I missed this post earlier.....
I hope that Lil A is doing much better now and hope your exams were good.....
I can only imagine how tough it must have been to handle it all at once....
Sending you my love and good wishes..... :hugfriend :hugfriend
Madhavi
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Thank you Madhavi :hugfriend
Where would I be without the support of my friends here :)
Sharmin