Have a Great Trip, Sharmin!

Hi Sharmin
 

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

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

Thank you Kathy - you're a sweetie 

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

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.

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

Please Sharmin, be patient as much as you can. Hope this change would only last for a short time.

take care

manal

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   as soon as possible .. BEST OF LUCK 

sub set hai = everthing is okiey

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

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    I wish you all the best.

Sharmin

Wishing you all the luck Sharmin  .

ZAINI.

Thank you Zaini