Discussion Forums => General Chatter => Topic started by: Andy Battaglia on June 27, 2008, 03:43:23 AM
Title: Have a Great Trip, Sharmin!
Post by: Andy Battaglia on June 27, 2008, 03:43:23 AM
Sharmin,
I hope you and your family have a wonderful trip. Have some fun and watch your kids have the time of their life. :stars
I hope Dr Vichinsky has some answers for you about the antibody. I think he'll be pleased to see what good health your son is in. I can't wait to hear what you learn. :happydance
Title: Re: Have a Great Trip, Sharmin!
Post by: §ãJ¡Ð ساجد on June 27, 2008, 05:13:21 AM
Title: Re: Have a Great Trip, Sharmin!
Post by: Manal on June 27, 2008, 11:19:10 AM
Have a safe flight Sharmin and take care :hugfriend :wink
manal
Title: Re: Have a Great Trip, Sharmin!
Post by: jade on June 27, 2008, 12:57:59 PM
Hi Sharmin Have a nice trip and see you back soon.
Take care Jade
Title: Re: Have a Great Trip, Sharmin!
Post by: nice friend on June 27, 2008, 09:28:30 PM
:loveHi sharmin : have a great :party trip ... i hope it will b a safe and joy-full trip....like :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :rotfl :yay :yaaaaaay :clapcheergirl :clapcheerboy :laugh :thumbs :love :wavey :wavey :wavey :wavey bye....bye
best regard Umair
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 03, 2008, 05:13:44 AM
Thanks everyone for your wishes - just logging in from California. The kids have been having a blast. I'll keep you posted on our visit with the doctor. I pray for good news for my son and for all of you my friends. I hope I can get some answers for us all. Take care! Love you all!! :hugfriend :hugfriend Love Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: §ãJ¡Ð ساجد on July 03, 2008, 02:11:16 PM
Welcome Back!:)
I hope you had a great time and your appointment with the doctor goes smooth. :happyyes
Title: Re: Have a Great Trip, Sharmin!
Post by: nice friend on July 03, 2008, 07:56:57 PM
hi sharmin : its nice to hear you again ... when u and zaini anounced that both of u going on trip i thought that te board will b slow down and bcoze two supreme members and also the two super caring mother thals r going offline for a few weeks .... but its nice to see that u r still in touch to the community thanx ...... thanx for spending time to reply on the forum thanx again .... have a nice tripp .
umair
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 06, 2008, 07:44:57 AM
Hi everyone - I'm home! Very tired - off to bed.... Please post questions - I will try to answer them from the information I received.
Thank you all for being so sweet and supportive. Our visit was very informative and gave us a lot to absorb.
love to you all, Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Manal on July 06, 2008, 10:58:04 AM
Welcome back dear Sharmin, we reallly missed you :hugfriend and i hope that you had a wonderful time.
Did Dr. Vichinsky offered any different plan in treating the your son's antibodies?
manal
Title: Re: Have a Great Trip, Sharmin!
Post by: sah on July 07, 2008, 04:17:55 AM
Welcome back home Sharmin.Waiting for all the informations you have gathered from your trip.
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 07, 2008, 05:01:11 AM
Hi friends. Our trip was fun - and we received a whole lot of information to absorb.
First of all, the doctor commended us on the vitamins and supplements. He stressed over and over that it is just as important to take antioxidants to prevent iron damage - as it is to prevent iron overload. He was very happy about the IP6. He did ask us to increase the doses of the other supplements that we are on - we will get a more complete list soon. He asked us to increase the dosage of zinc as well. He suggested that centrum silver as a good multivitamin.
He also told us that with good compliance thalassemia patients can live long and productive lives. I hope this will be the case for everyone here.
For the antibody - he suggested that we go on rituximab and gamma globulin. For those patients who have an auto antibody this is a great option - we hope that it is effective. We hope to start on this treatment ASAP. He also suggested that we immediately get the genotype testing done. We are hoping to take care of it this week. He says that it will prevent the formation of more antibodies and perhaps lessen activity of the autoantibody - also it may lengthen the time between transfusions. Doing this in the first place may have prevented the formation of the antibodies in the first place - so I urge patients to have this done.
On the whole my son is very healthy - and has no physical effects of thalassemia. The increased transfusions over the past few years have caused iron overload however that we did not detect in the ferritin levels - his liver iron levels are 2880. The doctor found this to be far too high and our first task is to reduce this immediately. Our chelation must increase immediately. This coupled with a reduction in transfusions - which will hopefully result from the ritux - should hopefully resolve this issue soon. Again we will need your prayers. I hope everyone has their liver iron concentrations checked - while in the past his ferr levels and liver iron levels have correlated very well - now they do not.
I hope this is helpful, I will post more soon. Please feel free to post questions - i took a lot of notes and I will be happy to answer whatever questions that I can. Until then - keep taking your vitamins!!
Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: §ãJ¡Ð ساجد on July 07, 2008, 05:06:13 AM
I'm so happy that he's doing nice. :)
Now what about the fun part?
Disney Land!!!
:woot can't wait to hear about that
Title: Re: Have a Great Trip, Sharmin!
Post by: Manal on July 07, 2008, 11:50:18 AM
Sharmin , i know that you must be so tired by now but please if you a have time what is exactly meant by rituximab and gamma globulin?? Also what is the plan for the concentrated chelation? Did he mention anything about exjade? How often should you check the liver iron concentration?
From the Cairo conference and from your post it is very clear that ferritin levels are misleading so why we are so concerned about their levels???
manal
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 07, 2008, 05:42:08 PM
Hi Manal,
We will be visiting with our hematologist at home to discuss the treatment plan.
My understanding is that Rituximab is an anti CD20 - which prevents the formation of antibodies. Yes, our new treatment plan will also include exjade - it will be a combination treatment which they plan to monitor very carefully. Usually you can check liver iron once a year - but we will be checking every 6 months until things are under control.
An important thing we noted during our appointment is that the doctor felt that we may have avoided damage due to the overload because of the IP6 and the other vitamin supplements. I therefore encourage everyone to find out about vitamin supplements.
Sajid, Disneyland was a blast - i will post pictures very soon:)
Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Andy Battaglia on July 07, 2008, 05:54:31 PM
Sharmin,
I was elated to hear that Dr Vichinsky commended you on using IP6. I wasn't sure the thal establishment even knew about it. We have been promoting its use for quite some time here and I have always stressed that its antioxidant properties are what may be its best feature. I am happy to see that the Dr concurred.
I really hope people pay serious attention to the advice about supplements. I feel that many people are overlooking this and thinking that they don't really make much difference. The stresses thals are under make supplementation absolutely necessary for good health.
Title: Re: Have a Great Trip, Sharmin!
Post by: Andy Battaglia on July 08, 2008, 03:50:41 AM
Sharmin,
What did Dr Vichinsky recommend for supplement dosages? What did he have to say about vitamin C? Is it safe for thals to take?
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 09, 2008, 03:22:40 PM
Hi Andy,
We had been giving my son 100 IU of vitamin C which we gave him 1/2 hour after we began desferal. In Oakland they asked us to increase it to 250Iu of vitamin C.
From my understanding - thals need vitamin C - but they should not have large doses with meals because it increases iron absorption from the meal - as you have mentioned in the past. Vitamin C also releases iron from the liver - this is the reason we administer it when desferal is on because it frees up iron for desferal to excrete. However, in the absence of desferal - if vitamin C frees up iron it does not have anything to bind to - at this time it can enter other organs such as the heart and cause damage. Small amounts of vitamin C between meals would not be as harmful - but it is best taken with chelation.
The doctor stressed the importance of avoiding free iron - because it is very harmful - and along with chelation he stressed the need for antioxidants to bind it and avoid its oxidative damage.
I am still waiting for a more complete list of supplements - as well as more information regarding vitamin C, calcium and magnesium. Either they will email it to me or I will request it during my next visit in 3 weeks.
I hope this was helpful,
Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Andy Battaglia on July 09, 2008, 09:23:47 PM
Sharmin,
That's good info. 250 mg of vitamin C is some help. 100 mg is such a low dose and won't do much for thals who are generally deficient in C. I wish the dose could be even higher because it is water soluble and disappears from the system within 12 hours and most thals have a great deficiency in C, which is a powerful antioxidant.
I hope everyone pays close attention to he information Sharmin is giving us about supplements. This is crucial info that can help the health of thals in very real ways.
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 10, 2008, 03:17:40 AM
Andy,
I was also told during our visit that antioxidants are so vital in preventing iron damage in thal - that they are currently conducting a study involving the iron induced damage and the role of vitamins in its prevention - in thalassemia.
Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Zaini on July 16, 2008, 05:43:42 PM
Thanx for sharing the information sharmin.
ZAINI.
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 19, 2008, 07:02:31 PM
Since returning from the trip my son has started his new treatment. In preparation for the rituximab he was given IVIG 1 week ago. He was given two 12 hour infusions. This experience proved to be a nightmare, after receiving the 2nd bag he developed a terrible fever, painful headache, stomach ache, nausea and vomiting. He did not eat anything for 4 days and we were very concerned about him. The doctor said that this type of reaction sometimes occurs with the IVIG - but is not common. He said that although it was uncomfortable for our son - he was not in any danger. Most people do not react this way to IVIG.
Yesterday he received his first Rituximab treatment yesterday, and it went very well. He will receive 3 more over the next few weeks and we are currently weaning him off of the steroids. He has shed off most of the 'puffy' cheeks:) We hope that this will take care of the antibody problem thereby reducing transfusion requirement. With increased chelation and combined desferal/exjade therapy we hope that his iron levels will be reduced very quickly. He will also be on maintenance IVIG treatment - small monthly infusions until his own antibody production returns to normal - hopefully without the autoantibodies this time.
I hope that this helps others who have antibody issues. We have heard that in most cases this method eliminates the problem and people return to normal.
In two weeks we will be seeing Dr. Vichinsky again - before beginning our combination chelation therapy. We will also be having an MRI of the heart to ensure that there is no iron his heart. At this time we will also be inquiring about fetal hg inducers - which may be a possibility once the iron issues are dealt with. We will share this information with all of you once we receive it. There are inducers that can at least reduce tx requirement if not eliminate it.
It has been a productive and at times very difficult few weeks - but we hope that what we are going through now will keep our son healthy in the future - and we hope that the information we are able to share, as well as our experience, will help others.
Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Zaini on July 19, 2008, 07:16:02 PM
Best of luck Sharmin, :goodluck
ZAINI.
Title: Re: Have a Great Trip, Sharmin!
Post by: Andy Battaglia on July 19, 2008, 07:21:59 PM
Sharmin,
Best wishes for this treatment. Is your son completely off prednisone now?
Title: Re: Have a Great Trip, Sharmin!
Post by: nice friend on July 19, 2008, 07:42:10 PM
:goodluck Best Of Luck For Your Son Sharmin :goodluck
Hope he will get well soon and he will get helthy wealthy and happy Life .......
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 19, 2008, 09:05:00 PM
Thank you Zaini, Andy and Umair,
Your support means everything to us :grouphug
We have reduced the steroid to 10mg every second day, soon it will be 5mg alternate days and we hope to be off by the end of the month. He was given a stress dose while he was at the hospital during the reaction - and so our wean became a little slower. We are hoping for the best. He has been his normal self for the past few days - a little grumpy at times because he has spent so much time at the hospital and because desferal is 7 days a week 12 hours a day. Mostly good though:)
Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Manal on July 20, 2008, 12:59:19 AM
Hope everything will go the way you want and that our little soldier remains well during the whole treatment. Best of luck my dear friend :hugfriend :hugfriend
manal
Title: Re: Have a Great Trip, Sharmin!
Post by: §ãJ¡Ð ساجد on July 20, 2008, 05:18:34 AM
Best of luck and :getwell
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 20, 2008, 05:19:14 AM
:ty
Thanks Manal and Sajid :hugfriend :hugfriend
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 20, 2008, 05:45:19 AM
Hi guys... we've got a slight problem :huh :huh His moodiness is driving us nuts :wah
We can't seem to do or say the right thing.. :mouthshut. He has always been such a well mannered kid, but the last few days he has been a crab :raspberries He is not getting along with his sister :catfight At first we were trying to be understanding because he has been through a lot - he has never really been sick before this year - but this past little while has put him through the ringer. He is usually such a good natured boy, should we take it easy on him for a while or should we start putting our foot down now that he is doing better?
Andy, could this be a side effect of some of the meds he has taken lately?
Thank you all for your help!
Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Kathy11 on July 20, 2008, 08:18:58 AM
Its hard at times, hang in there. your baby will improve.Be extra patience, he will get better its harder for children than adult. they cant explain themself. Take care because I care for you and your children. Kathy
Title: Re: Have a Great Trip, Sharmin!
Post by: nice friend on July 20, 2008, 08:33:15 AM
hi sharmin .. its happens some time when u tired of to gooing to dr and feeling your self weak ... i also feel like that ... when i tired of the sicknes i prefer to live alone in my room and dont to talk to someone ... the time when it happen my bros n sister feel's the change in my mood ... in hindi or urdu called ( chir chara pan ) if i m right ... soo its not a big problem try to give the enviroment he wants to live in ... take some decisions and let him to take a little bit decisions too ... so that he feel the power in his self ... he need ur encourgment ... ur time .. and give him a little break ... when u want to take him to the dr .. also tell him that wat u r planning after visiting the dr .. ( like going to eat out something or going to play land or giving a little toy...) ( i was a bigg fan of little toys when i was in his age ) .....soo i hope he will fine soon ... umair
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 20, 2008, 03:24:12 PM
Thank you Kathy - you're a sweetie :hugfriend
Thanks Umair - it helps to understand what may be going on from his perspective. We'll try our best to empower him so that he feels a sense of control.
Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Andy Battaglia on July 20, 2008, 04:05:22 PM
Sharmin,
While you should remind him that some of his behavior is not appropriate, please keep in mind that these various medications can have side effects and he may not be in full control of his moods. Even dropping the prednisone dose can have some short term effects, as his body adjusts to the lower dose. The psychological effects of everything he's been through lately may also be partially responsible. Whereas he has felt fairly normal with his regular routines in the past, the trip to California to see a special doctor, the very harsh IVIG treatment, the ritux, the drop in prednisone dosage, and the various physical reactions can all play a part on how he is feeling, and not feeling as he normally has, can all be somewhat overwhelming for anyone. Patience from the parents and reminders to the child about his behavior are important. I would not threaten punishment or restriction in activities to get him to behave at this point, as with what he has been through, it's easy to see why he would be acting up. He may have some fears about his own future right now and reassurance that he will be fine and that his doctors are doing something over a short period so that he can be free of a long term problem, is in order. It must be very hard for a young boy to endure all of this, so intervene when necessary but keep your composure no matter how much he acts up. Seeing that his parents are confident about his future and understanding about his present, can help him achieve the confidence he needs right now.
One thing I think you should also consider right now is special stress on a very nutritious diet and make sure he is drinking plenty of water. A special treat here and there is fine, but try to stick with a diet that can restore his body from the effects of the various drugs.
Title: Re: Have a Great Trip, Sharmin!
Post by: Canadian_Family on July 20, 2008, 06:54:59 PM
Hi Sharmin,
How is your son doing now, I think almost everybody here do understand your stress as they have experienced it themselves. I cannot add to what Andy has already said but important thing for you is to stay calm and remember, you know your child better than us. If you feel this is drug related problem then it shall subside with time but if it is a behavior problem than you may want to address it now. Please keep us posted.
Thanks
Title: Re: Have a Great Trip, Sharmin!
Post by: Manal on July 20, 2008, 08:59:21 PM
Please Sharmin, be patient as much as you can. Hope this change would only last for a short time.
take care
manal
Title: Re: Have a Great Trip, Sharmin!
Post by: nice friend on July 21, 2008, 12:57:56 AM
Hi sharmin : it could be possible that u agree himm to come for online voice session so one of us ( best one ) try encourage him and able say that its a short time period so be humble and calm in it .... mayb he understand wat he didn't understand to you .... its only a sugesstion .. mayb it works .. if some one of us ask him wat he want to do and wat is his probleme.. bcoze if he is tired to going here n there . .. and tired to changing docotr so he will b also angry to you .. in this case some one else ( third person can talk to him as their friend ) so he will able to share their probleme which he can't share to you ... in thal child they also care for their parents .. and sometimes dont want see them tensed .. in the meantime they look's for good care of their own self .... iin these two different thinking they gone confused abt wat to do .. in this kind of situation they could be angry and rude sometime over their bros n sisters .... ( a knid of chir-chara-pan ) ,.... i think u r the best mom ... you encouraged your son to win some medal a few weeks ago ... i didn't forgot that.... u can do it sis ... be strong and brave as you ever been .. i want to see you again in that form ..... dont worry everything will b fine n set.... i want to hear that to you SUB SET HAI :thumbup as soon as possible .. BEST OF LUCK
sub set hai = everthing is okiey :thumbup
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 22, 2008, 06:44:13 AM
Thank you everyone,
We have been trying our best to normalize things for the kids. We try to add something fun into everything - today after transfusion we took the kids to watch a movie (space chimps - they liked it:). We are still having some rough patches with both of them. I think our daughter, regardless of how much we try to balance everything and attend to her, is getting a little irritable as well. We are at the hospital once or twice a week for the next few weeks - also we are returning to Oakland next week so it will be at least a few weeks before we can slow things down a little.
Andy, as you said, there may be some effect from the meds and some from the experience. We have been very open to his questions, I hope we get through this soon. He has asked many questions lately, including questions about thalassemia and life span. He was wondering why people are often 'surprised' to know that 50 year old thal majors are alive, he asked if this was surprising because they were not expected to live so long. I assured him that with proper care and compliance there is no reason for thal patients to have a shorter life span. It has been difficult always finding the right words, he is seeking comfort and understanding at times and other times he is irritated if I ask whether he is still having head aches or nausea (most of these symptoms have settled). I think despite our own fatigue and concern (from sleeping in a hospital cot for days etc etc) we have to be patient for him. We need to stay positive and strong - in the long run I hope that this will all be for the best.
I can not explain how it felt when - before beginning this treatment - he woke up one morning healthy and happy - all ready to visit grandma and his little cousin. He put on his new Disneyland shirt and hat to show off to everyone - instead the hospital called to begin his IVIG - and he lay in the hospital bed sicker than I have ever seen him - fever, chills and vomiting for the next week - wearing his new shirt and his hat by his bedside. I realized that being a parent takes more strength and skill than anything else.
Thanks to your prayers, he is much better now - since then his treatments have been going well - he will have his 2nd ritux this Friday. I hope for the best. Thank you all again for your very helpful advice - I will read it over again carefully. I'm sure he would be very happy to get advice from all of you once he is ready - many of you understand his situation better than I do.
Love, Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 25, 2008, 05:31:01 AM
We will be going in for our second Rituximab treatment tomorrow morning. I hope everything goes well. Today was the first day he ate well and was in a good mood. Thanks for your prayers friends :hugfriend I wish you all the best.
Sharmin
Title: Re: Have a Great Trip, Sharmin!
Post by: Zaini on July 26, 2008, 04:51:38 AM
Wishing you all the luck Sharmin :hugfriend.
ZAINI.
Title: Re: Have a Great Trip, Sharmin!
Post by: Sharmin on July 26, 2008, 02:21:42 PM