Annual check up

Thank you so much Sharmin for your support and understanding. You always talk my heart and knows how to express what i really feel and can not say in words. It is exactly what you are saying.

I hope our little A will have all his results more than excellent and i am sure that all the your stress will just vanish when hearing the good news. Waiting for you and always praying

manal

Hey hey guys,

What's happening here,you both are one of those moms to whom moms like me look up to,Manal my dear,i really can not imagine how well you are maintaining everything with Ahmed,he is an intermedia,never transfused but still he is doing reall well,he is growing well,almost everything is going perfect with him,it's really hard to imagine with the hb he has,so please rest be assured that you are doing your best,you want best fo him and you get what you struggle for,that's what God said,so Ahmed will be fine always inshallah,i am just sure.

Sharmin,

I know there is so much going on with you and Little A,But i am happy that everything is coming back to normal,believe it or not you are the luckiest person,Little A did so well although he was being hyper transfused and had to go through so many therapies like ritixumb and IVIG,he was chelating 5 nights a week,but look at him he is our ice hockey champion,i know it's hard but it's good to know,his LIC is down,his ferritin is down,i am sure his antibodies will be asleep forever.Please be happy that after all this ordeal he is a happy and very healthy child.Let me tell you he is a very brave one,please don't feel so down,i know it's overwhelming but believe me good new is just round the corner.

Take care both of you,And lots of kisses for both Littls As  .

Zaini.

You know Zaini, you are totally right.I should look at the bright side of the story. Usually when we are waitng for all the test results,one is under big pressure and when everything is over,you start realising that your nerves are being consumed.But again seeing the good things gives us the motive to continue, thanks for being there and pulling me out of all this

manal

I agree with Zaini. The efforts of the parents show in the health of their children and you moms and dads are doing a fantastic job.

Sharmin,

Regardless of the results of the dexa scan, and I hope they are good, please don't worry. The only thing missing from little A's regimen has been high doses of vitamin D and that is easily corrected. With his activity level, I do expect decent results and I think with the addition of D to his program, that he will do even better. He is getting plenty of exercise so I do expect that his bones are in good condition. Hockey is a strenuous, demanding sport and little A excels. I do not think this could be possible if he had weak bones.

Zaini,
Thank you for the encouragement 
To be honest my friend, the antibody is still present and raising concern.  He received 960cc of blood last week and I can only hope that he can get through 3 or 4 weeks without needing another transfusion.  We are very happy that his LIC is lower, but now that the antibody is resurfacing, we hope that we are not chasing the iron levels again.  The docs are hopeful that a second round of ritux will take care of the problem, otherwise other stronger drugs are available that can suppress the immune system more.  These drugs however make him more vulnerable to infections.   So far, the docs want us to repeat the rituximab this summer and I hope and pray that it is easier on our family this time.  I also hope that it solves the problem because I don't want to use harsher drugs on him. 

The blood bank just began using the genotype matched blood in November, for this reason we are still hoping that in the long term better matched blood will prevent the antibody from being too aggressive.  In recent blood tests I have noticed that the anti CD20(ritux) is still present in his  blood - but the normal antibodies (IgM and IgA which the ritux suppresses are in normal ranges now) and the warm complex autoantibody is present.  This coupled with the drop in hg scares me. 

Because one round of ritux has made some difference, I am hoping that a second round will take care of it for good - however putting him through that is very difficult.  I think that with time I will be able to accept all of this - but right now I feel so scattered and confused.  I am scared about what this means for the future.  It is good to see that the docs feel that he will grow up normal and healthy - so I am trying to hold on to that.  I also take comfort in the fact that I have all of you to help us get through another cycle of ritux.  Zaini, your message helped me realize that I have to get over this rut and get ready to make my son better - thank you for this 

Andy,

I hope that you are right and that the tests tell us that little A is doing very well.  I am eager to begin the mega doses of vitamin D when we get home. 

I agree with Zaini. The efforts of the parents show in the health of their children and you moms and dads are doing a fantastic job.

This was mentioned by many docs and techs at the hospital - they feel that strict compliance with the desferal and exjade reduced the iron inspite of the high transfusion requirement.  They felt that, considering transfusion volume little A had better results than most others in 6 months.  They feel that it is because of compliance.  We did not miss a single day of chelation in 6 months, when he received extra blood we would put desferal on 7X rather than 5X a week.  Apparently, this type of compliance is rare.  Also, they were surprised to see all of the supplements.   

These are attributes that may be rare in the general patient population - but not amongst our members.  This is something that we can all be proud of.  We are all very compliant with chelation and knowledgeable about supplements.  We are making good decisions for our children and for this reason our children should do very well. 

I am grateful that we are doing better than we were last year - his LIC is much lower, we are seeing the best docs in the world and we have plans to keep things under control in the future.  What upsets me is also that when I begin to feel safe something else happens.  In September/October is hg was lasting forever and I felt a sense of relief - and the next month it began to drop faster.  This makes me reluctant to breath a sigh of relief.  I guess I have to realize that it is not my reaction or sense of relief that is causing things to go wrong....

I pray that both of our little As and our little Z are cured very soon,  along with all of our other members,

Sharmin

Sharmin,

Non-compliance with chelation is probably the biggest problem facing thalassemics. You take your chelation routine as a given and don't even think about not doing it, but in reality, you are in the minority. This is the single most important thing, and for me, one of the most frustrating things about being involved with thals. I think I have heard almost every excuse in the book for not chelating but the fact is, if you don't comply, you die. It seems so simple but the amount of thals that ignore it or are in denial about it, is staggering. When I first was getting involved with Lisa's group, this fact really struck me. For me, it seemed so simple. If you don't comply, you die, so why wouldn't people comply. One of my first posts was an interview I did with Shilpa about chelation compliance. It was a real eye opener and it gave me some good insight into the minds of people who choose death over thal. This is far more common in some populations where either treatment is too costly and low quality and in cultures where thals are not accepted by the general public. One blessing about thal in America is that most people have no idea what it is so no stigma was ever developed here concerning thal. Finally something positive about lack of awareness. My trip to Maldives was all about compliance and we did have a positive effect there but it faded as time has passed and I am very sad that most adult males there chelate little if at all. I wish I was in a position to go there for a few months to work with the kids, but I still haven't won the lottery so that's still on hold. But even in the west with well cared for patients, we see many who slack and get themselves in trouble. Compliance with their treatment programs should be instilled in children from an early age. It has to be a no excuses approach and it has to be constant.

We talk about compliance in terms of chelation but we should also think of it in terms of all aspects of treatment. Compliance with a good diet and a sound program of supplements can lead to much healthier patients who protect themselves from the effects of iron with antioxidants and provide their bodies with the nutrients essential to the highly stressed body of a thal. Again, I have been amazed to hear people complain about taking a handful of supplements. I don't even think about it when I take vitamins etc but many patients make excuses. Come on now. It has to be worth it. Do you really choose bad health because taking some vitamins and minerals is so hard? I find it very frustrating, as does 50 year old Chris who hates to hear thals make excuses about compliance. This group is doing a lot to encourage compliance and many members have taken it to heart. The mutual support makes everything a little easier and the information we provide is really priceless for those who pay attention. I hope all members can embrace the importance of chelation and compliance and help not only themselves, but others also.

Andy,

I agree with each and every word of yours,thalassemia can be made easier with compliance,compliance with chelation to avoid iron overload,compliance with supplements to be in better health and compliance with transfusions by maintaining pre transfusing hb above 9 so that your child grows normally and with out any extra stress on his/her body.

Manal,

You are welcome dear,i'll always be there for you,because i know you'll do the same for me  .

Sharmin,

I can understand what you are going through,this antibody buisness is getting a bit nasty,i hope the second round of ritux will take care of it,I am praying for you and Little A,please be strong,as a mom i can understand what it feels like to put your baby through all this ordeal,but you are in best hands,and my prayers are with you,i am sure God will help you make a way out of it.

What happened and what's happening in Little A's situation is saddening and scary,i really sometimes have to shake that fear off my head,other wise i couldn't sleep,on my last visit,when i asked her hemo about genotyping,she said it's expensive for lab to do extended matching every time so it's not possible,yes if some one starts having any reaction we do the extended matching for them,i was shocked ,why wait for reactions to get started,what if the situation gets out of control once it starts.I didn't know what to say.

Zaini.

Well said Andy  

Sharmin  

I am just reassuring that we all back  and support you and i am sure that the second round of  ritux will be much easier.

.....anti CD20(ritux) is still present in his  blood - but the normal antibodies (IgM and IgA which the ritux suppresses are in normal ranges now) and the warm complex autoantibody is present

One more thing i want to point to, from my expierence with my mum as having an autoimuune disease too (rhumatoid). She was suffering from rhumatoid with all its symptoms for 30 years, but last year she received the biological treatment (it is hard to explain how it works ) and the result now that she is  free of all symptoms of rhumatoid and free of immunosuppresent medecine (methotrexate) which she has been on for 5 years.

But with all this, she has her her rhumatoid factor higher than the normal range. It has decreased than before but it is still higher than the normal range.

My point is that in auto immune diseases, the antibodies don't completly vanish, but the important thing is that they don't cause any symptoms.

I am sorry if i cause any confusion but what i want to say, does the antibodies that are still in the system endanger little A to hemolysis again or they are in the acceptable range???

manal

Best Of Luck Sharmin sis , he is always in my prayers , i hope and pray that his all the reports are  super fine and show's the good trends , sorry but i didn't understand wat's on in this thread bcoze concentrate on ...  Best wishes and best regards for Lil-A , i wish better than the best of the health for him ....

Always Praying
Best regards
Take Care
Umair

Andy, Zaini, Manal and Umair,

Thank you kindly for your support.   Luckily, his antibodies have always been in very low titers, and now they are even lower.  The presence of the anti CD20 is still interfering.  We are hopeful that the genotype matched blood in the long run will settle the situation.  He will be reassessed in June or July to see if further treatment is required.  Let's hope for the best.  I will know the rest of his results in about 2 weeks - so far the docs were very impressed with his health and the drop in his iron levels.  Before all of this, his iron levels were 900, I hope to get down there again - maybe even lower. 

Thank you so very much for your support, it means everything to me. 

Love,

Sharmin

Sharmin,

The way you are compliant with the chelation,i am sure he'll be soon below 1000,good luck for rest of the results  .

Zaini.

Very well said, Andy. Indeed.
 
However,being a thal makes me understand non-compliance a little easier than non-thals.
Even I, being a fan of compliance as I am,sometimes find myself  a little tired of needles and things.
This is a point where every thal reacts according to his/her values.
For me it has been 30 years of dealing with needles and pumps and one has the right to get bored and tired at times. It is there,in this turning point, that you have to find the strength to carry on.Because if you do not, you committ suicide and betray yourself,your dreams,your wishes.

Yes, compliance is the only solution.

Lena. 

@ Andy & Lena
  as well ,

@ Sharmin ,
eagerly waiting to hear that his S.Fe dropped  and comes below 1000 , and i know that, i will hear this realy soon ,  bcoze you are very much compliant with chelation with Lil-A , and Lil-A blessed has with a realy caring mom ... soo dont worry , as Lil-A is improving and impressing doctors i wish and pray that he will continue doing this all ....

Best Regards
Take Care
Umair

You might not know it, but thank you for your explanation about this nasty problem. I do understand it better nwo.
I think we all may know it. All this hospital visits gives us a lot of stress. Six years long we had only here my grandmother as family. She was the one who cooked for us at friday eve when my parents and I did falll more dead than alive at her couch. My grandmother died 2 years ago and since then we are only with the three (plus cat) of us. I dont know of you meant that, but it is sometimes very hard to care about everything in your life: family, hospital, house and work (maybe friends too). At the moment I am a bit out of the balance, but my mother has a week holidays at the moment so we wont sunk during this two hard weeks (4 hospital visit; 2 wednesday mornings alone, 2 fridays with one of my parents).

Take care Dore
p.s. are you still in Cal? (i dunno how you spell it at the moment )