Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: Cari on November 13, 2009, 02:18:33 AM

Title: Little Ari
Post by: Cari on November 13, 2009, 02:18:33 AM
Hello All,

Just wanted to give you an update on our little one.  As I mentioned before, the doctors confirmed Beta Thal Major.  THey are monitoring him now every 2 weeks and have told e to watch for signs like paleness, quick breathing and fatigue...i'm scared to death to miss these signs.  I mean, he's a baby...he sleeps all the time! 

Anyhow, on Oct 22 his hemo was 8.2 and on Nov. 5 it was 8.1.  Anyone know of anything else to look for? 

I did a lot of research on this site on genotyping and have sent it to my doctor and asked to have it done.  Hopefully they will listen.  When i asked initially they said they were just waiting for his levels to drop to do anything.  Genotyping should be done prior to the drop right? 

Can anyone share stories of how and when they noticed drop in their babies? 

Thanks and lots of love
Title: Re: Little Ari
Post by: Andy Battaglia on November 13, 2009, 02:41:41 AM
Hi Carisma,

Genotyping should be done before the baby is ever transfused. If genotyping is used to match the blood, antibody reactions from the transfused blood can be avoided.
Title: Re: Little Ari
Post by: Narendra on November 13, 2009, 04:08:55 PM
Hello Carisma,

I agree with Andy and as you are thinking - Genotype typing should be done prior to the blood transfusion.

We evaluated the usefulness of blood group genotyping as a supplement to hemagglutination to determine the red blood cell (RBC) antigen profile of polytransfused patients with -thalassemia. We selected 10 alloimmunized patients who were receiving antigen-matched RBCs based on phenotype, and had clinical evidence of delayed hemolytic transfusion reaction. DNA was prepared from blood samples and RH E/e, K1/K2, FY A/FY B, and JK A/JK B alleles were determined by PCR-RFLP. RH D/non-D was determined according to the PCR product size associated with the RHD gene sequence in intron 4 and exon 10/3UTR. RH C/c was tested by multiplex PCR. The phenotypes and genotypes of nine of the 10 samples were discrepant. Five of the discrepancies occurred in the Rh system. One sample was phenotyped as Rhcc and genotyped as RH C/C, and two samples were phenotyped as RhCc and genotyped as RH C/C. Two other samples were phenotyped as RhEe and genotyped as RH e/e. Three samples had discrepancies in the Kidd system with phenotype Jk(a+b+) and were genotyped as homozygous for JK B. One sample had a discrepancy in the Duffy system: it was phenotyped as Fy(a+b-) and homozygous for FY B. Genotyping was very important in determining the true blood groups of many polytransfused patients with -thalassemia, and it assisted in the identification of suspected alloantibodies and the selection of antigen-negative RBCs for transfusion

Also, you can look at the post from our members talking about genotyping prior to transfusion at

and where - our member's experience with antibodies and how it could be avoided

Please push through with the doctor's to get the genotyping done. Most doctor's don't think it is needed but it seems a good option if genotyped blood is transfused
Title: Re: Little Ari
Post by: Bostonian_04 on November 13, 2009, 08:09:57 PM
Hi Carisma,

As Andy and Narendra mentioned, please get the genotype testing done before the blood transfusion is started. Our daughter (who is 3 now) started transfusion when she was 2 months old and her Hgb was 7.3. We did not see any difference in her behavior or breathing or sleeping except her lips were pale.

Good luck with everything...
Title: Re: Little Ari
Post by: Sharmin on November 17, 2009, 06:42:32 PM
Hi Carisma,

I hope that Ari is doing well.  I am sure that he is keeping your busy :) 

Lil A is also a beta zero.  He was first transfused at 3 months of age when his hg suddenly dropped to 44.  We did not notice much of a change in him other than some paleness.  On a routine blood test it was found that his hg was very low and his transfusion was given that night. 

I think that it is a good idea to test him regularly and to have the doctor feel his spleen at each visit.  Lil A was born Sept 11th and he received his first blood transfusion December 11th - ideally, he should have received it earlier.   Ari was born two days after Lil A's bday so perhaps you can have him tested bi weekly now - or if you notice a change in his lip color. 

Genotype testing can be done before or after your son has been transfused as this test requires dna (red blood cells contain no dna) - which does not change after a transfusion.  Phenotype testing should be done before transfusion because it looks at the actual markers on the red cells - this test is impossible to do after one has been transfused because it is nearly impossible to distinguish the donor vs host cells. 

Having both tests done is helpful because it gives them two sets of data - and the best cross match will always be found.  This will prevent formation of allo antibodies - and will eventually help the blood bank as well.  If they know all of the antigens they will not need to perform needless tests during the crossmatching process. 

Genotype results take a long time to come back, in the meantime have the phenotype testing done right away so that lil Ari is not given mismatched blood from the beginning.  Hg can drop rapidly between the 2nd and 3rd month (as we experienced) so it may be a good idea to do it right away before a transfusion is given.

I hope that this helps, 

All the best to lil Ari - please give him a big hug from Lil A and myself,  :hugfriend :hugfriend


Title: Re: Little Ari
Post by: Cari on November 17, 2009, 10:21:57 PM
Thanks everyone! I was really confused about genotype and phenotyping.  Some of the info i pulled from our site mentioned to do genotyping first.  I spoke to my doctor in Atlanta and she has conversed with the doctor here and reccommended extensive rbc phenotyping be done first as sharmin mentioned. 

I have another apptment on thursday - we are going bi-weekly.

Title: Re: Little Ari
Post by: Cari on November 19, 2009, 06:24:16 PM
Ari has dropped to 5.9. We r waiting for another lab to confirm. They r saying they do not want to transfuse?????
Title: Re: Little Ari
Post by: Sharmin on November 19, 2009, 06:31:56 PM
Hi Carisma,

I wonder why they do not want to transfuse him yet  ???  Have they drawn the sample for the phenotype testing yet?  What I noticed with lil A and his growth during this time was as follows:

birth weight 8lb
1 month 10lb
2 months 12lb
3 months 12lb

As you can see his growth was great for the 1st 2 months - but he did not gain weight between the second and third month.  Once he was transfused his growth resumed immediately - he began to feed better and gain weight.  For this reason, I had always wished that we transfused lil A earlier.  Also, lil A's spleen was slightly enlarged at 3 months - but it became normal immediately after his transfusion and has remained normal since. 

Please know that we are all here for you,

take care,

Title: Re: Little Ari
Post by: Andy Battaglia on November 20, 2009, 05:06:08 AM
Hi Carisma,

With thal beta zero, once the fetal hemoglobin supply wanes, the child needs to be transfused, because there won't be any normal hemoglobin at all. This is why the sudden drop in Hb is seen. By age six months, there may be very little fetal hemoglobin left, so transfusions will be necessary before then. Putting off the first transfusion in beta zero has no value and as Sharmin has said, the baby's growth will be slowed. Does your doctor in Atlanta agree about not transfusing yet?
Title: Re: Little Ari
Post by: Cari on November 20, 2009, 05:44:20 AM
The doctor in Atlanta told me he could be going through something called Physiological Nadar??  She suggested to watch his vitals and test him again on Monday.  (Sharni - she called after I spoke with you)

The doctor here is going to check him again tomorrow.  They did 3 tests today and the 3rd one was not read because the lab said they did not have enough blood.  I made an appt to come back monday initially but the doctor called and asked me to bring him in earlier.

The RBC Phenotyping blood was drawn today as well.  It looks like he may need a transfusion prior to the test results coming back!!!  That worries me but when I spoke to Sharni she said it should be okay for him to take the blood this time without these results as long as they do the genotyping.  THe Doctor in Atlanta also mentioned the same thing although she said it would be better to have the RBC results. 

My doctors, husband and family didn't really expect his hg to go down so doctor here refuses to believe that he was that low and that is why they tried to test 3 times.  i think i was the most prepared thanks to this site.  I have been reading back on posts from the child of Bostonian & Lauryn. 

My husband feels that it is bad to transfuse Ari so early because Chelation would start earlier.  I'm explaining all angles to him and also explaining that they may not have many or any BETA 0 patients.

I will update on this post via my phone tomorrow after our appt at 1:30pm.  Please keep Arii in your prayers.

love, C
Title: Re: Little Ari
Post by: Zaini on November 20, 2009, 09:25:58 AM

Little Ari is in our prayers :hugfriend .

Title: Re: Little Ari
Post by: Sharmin on November 20, 2009, 05:02:09 PM
Dear Carisma,

I understand your husband's concern about chelation, but the good news is that your son will most likely be started on exjade rather than desferal.  At the conference the doctors agreed that for young children exjade is the best option for many reasons, such as the effects on bones and growth that desferal can have and the quality of life (it is best not to poke very young children if you don't have to). 

In thalassemia, it is very important to remember the balance between hemoglobin and chelation.  For optimal growth it is best for a child's hg to be kept above 10 and for the iron levels to remain as low as possible.  With exjade, these days it is possible to keep iron levels near normal. 

I hope that the doctor decides to transfuse little Ari soon.  Please keep us posted and give our love to the little guy  :hugfriend :hugfriend

Ari is always in our prayers,

Title: Re: Little Ari
Post by: Andy Battaglia on November 20, 2009, 06:05:03 PM
Hi Carisma,

The Physiological Nadir is a phenomenon that happens in all newborns and occurs in the 8-12 week period. This is a low point in hemoglobin levels as the transition from fetal to adult hemoglobin takes place. In normal babies, this will be a temporary drop, as the Hb is lower but the percentage of HbA is increasing. With beta zero, the percentage of hemoglobin that is HbA will remain zero, so the only hemoglobin will be the fetal hemoglobin. Again, I see no reason to wait, as there will not be any HbA and the child will develop at a more normal rate if the Hb can be increased. I don't think transfusion would be put off at any of the Comprehensive Centers, once the Hb has dropped this low. A big advantage of having the treatment program designed at a Comprehensive Center, is that they will always be at the forefront of advances in understanding of how best to treat thalassemia, and won't be relying on outdated practices and information. The current thinking is to never allow a child's Hb to drop, as it slows growth and development, and with modern chelation, putting off transfusion because it delays when chelation is needed, has become somewhat outdated. We have heard about current trials using Exjade at meal time and also using it twice per day in half doses, and I think this will quickly lead to new recommendations that will make the oral chelator even easier to administer. Avoiding chelation as long as possible is no longer part of the strategy in thalassemia treatment.

And as I should advise all parents in the US, make sure you are registered with the Cooley's Anemia Foundation.

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
Title: Re: Little Ari
Post by: Cari on November 20, 2009, 07:38:06 PM
 Ari is at 6 but they do not want to transfuse. They want me to come back on the 30th!
Title: Re: Little Ari
Post by: Andy Battaglia on November 21, 2009, 12:55:22 AM
Hi Carisma,

For now, watch Ari and look for any signs that he's becoming listless or lethargic, has poor appetite or begins to look noticeably paler, with pale lips being a sign that blood is needed. Meanwhile make sure you have read about the transfusion process, so you know what to expect. All medical procedures are a bit less scary when you understand what will be done. Also, at this age, the Hb is lower than normal so 6 is not as low as it would be once the nadir period has passed, so the actual physical condition is a big factor in deciding when to begin transfusions. Your own observations about his condition can be very important. Try to be as objective as possible and if you feel there has been a significant change in his behavior, call the doctor.
Title: Re: Little Ari
Post by: Cari on November 22, 2009, 02:37:38 PM
Thanks Andy,  so far Ari looks fine. He is a little pale but he's eating, smiling and awake all day.  He wont even nap!!! :) always wants to look aroundl.   I want to take him back this week regardless. I was thinking on u think I should even attempt to if he is still okay?
Title: Re: Little Ari
Post by: Dori on November 22, 2009, 03:10:15 PM
What is beta zero?  :huh
Title: Re: Little Ari
Post by: Andy Battaglia on November 22, 2009, 05:44:44 PM

I feel that unless there is a noticeable change in Ari's looks or behavior, that they will not transfuse until a second blood test at least two weeks after the first, confirms the low Hb, because he is at the age when Hb level may not be totally accurate because of the nadir period. What remains to be seen is how much HbF he will still be making. He looks good in his FB pics.


Beta zero is when both beta globin genes are deleted and no normal adult hemoglobin (HbA) will be made at all. The only hemoglobin will be fetal hemoglobin, which normally disappears for the most part by six months of age.
Title: Re: Little Ari
Post by: Cari on November 25, 2009, 04:40:34 AM
Just an update...Ari seems to be doing okay these past few days.  He is definitely very pale but he is overall very alert so it is so confusing!  Yesterday he was so alert and awake all day (God bless him) :) playing and smiling.  THe only thing is that today he was a little more tired and did not eat as well.  I get confused because i would think he WOULD be tired after being so active the day before...right? 

I don't know...i am going to watch him tomorrow and see how he does. 
Title: Re: Little Ari
Post by: Cari on November 25, 2009, 04:56:40 AM
One more question just to clarify something.  I'm sorry if this is repetative info but i am so confused.

I've been reading back on posts on genotyping.  I requested to have this testing done before the transfusion started and the doctor told me this was called the RBC phenotype test.  THe other links i've been reading here keep referring to genotyping to get the most accurate match and prevent antibodies in the future.  I believe some areas state that it is genotyping that cannot be done after the first transfusion. I know Sharni mentioned that the RBC phenotype is the correct test but what is genotyping then?  Do they automatically do this before every transfusion?  I want to make sure I am asking for the right things before the first transfusion if there is something else I need to ask for. 

I don't think i mentioned that my doctor here did not have much information on RBC phenotyping!!!??  They were actually looking through a book to see what they needed to get from Ari.  THe blood bank was also not aware of the testing!!!  Luckily my hemotologist in Orlando contacted the one from Atlanta and they contacted our blood bank and sent them anonymous results of the tests so that the blood bank was aware of what to look for.

This has scared me and now i know i just have to be on top of my game in order to get the best treatment from Ari. 

Also, are there any links to the transfusion process for babies on the thalpal site?  I have been searching but haven't found it. 

Thank so much - love, C
Title: Re: Little Ari
Post by: Sharmin on November 25, 2009, 06:13:50 AM
Dear Carisma,

I am glad to hear that little Ari is doing well.  I have been meaning to communicate with you all week, but it has been the busiest week ever!  Lil A just finished a late hockey game tonight and I finally got the little monkey to go to bed. 

The best type of testing to have done is genotype testing - so be sure that it is done soon.  The reason that phenotype testing should be done right away is that it becomes impossible to do it once the patient is transfused.  It is useful to have the results of both tests so that the best crossmatch is always found.   Of the tests - genotype testing is the most sophisticated and best test to prevent formation of antibodies. 

Even though the hg is dropping - babies seem to adjust to the drop in hg.  Lil A was very active even at a hg of 4.4 when he was a baby.  He played and played at the doctors office the day that he was diagnosed - even with such a low hg.  I think that the hg drops slow enough for their bodies to accommodate. 

You may notice a decrease in appetite and a tendency to spit up more milk when the hg is very low.  For these reasons, I hope that the hospital will decide to transfuse him soon.  I know that they are hoping for his hg to recover - as it does in non thal babies - but that is not the case with beta zero babies.  I just hope that Ari's hg does not drop too low.  Having really low hg will cause his spleen to grow and interfere with his growth during the next month.  I don't like the idea of a baby having so little oxygen and blood.  Please let me know what the hospital says.

You are right in that you have to stay on top of everything, we had to learn so much on our own to have lil A treated.  There wasn't enough information here so we accumulated our information at comprehensive thal centers.  Dr. Vichinsky and the Oakland hospital have done wonders for us.  I hope that lil Ari will also be followed by one of the larger centers who can guide your local doctors with Ari's care.  If you are followed by the large centers everything will go very smoothly for you - and you will always have the best information. 

I will give you a call as soon as things slow down for us here.  Perhaps tomorrow morning. 

Take good care:)  Hugs to little Ari ((hug))

Title: Re: Little Ari
Post by: Andy Battaglia on November 25, 2009, 06:16:36 AM
Hi Carisma,

When you refer to Atlanta are you referring to Children’s Healthcare of Atlanta? That is the Center of Excellence in Atlanta. If you are, you should have them guide your local hospital in this process. They can tell them exactly what should be tested in the phenotype testing. I hate to confuse matters even further, but I would like to see all children genotype tested before the first transfusion and the transfused blood be genotype matched, especially when the blood being given is from a different ethnic group than the recipient. If both phenotype and genotype are done from the beginning, it does minimize the chances of antibody reactions. However, not all hospitals are willing to follow the genotype matching (including some of the Centers of Excellence). This is frustrating but because you are Indian and your child is likely to receive blood from a non-Indian, the genotype does become more important and if at all possible. It has been shown that there are antibodies more unique to specific ethnic groups and these are not always caught by phenotyping alone. Regardless if this can be done, thorough phenotyping must be done before the first transfusion, so only the baby's own antibodies are present. With each transfusion, new foreign antibodies can be introduced that cannot be told apart from the native antibodies, so knowing exactly what the child's antibodies are is essential.

There is some information about transfusions in our Documents section and also within the Standard of Care Guidelines for Thalassemia which are attached as a pdf file to the post at
All parents and patients should familiarize themselves with these guidelines, and make sure your local center is also aware of them. It makes a huge difference in quality of life when these guidelines are followed.
Title: Re: Little Ari
Post by: Cari on November 25, 2009, 04:44:01 PM
Goodness....I called them to ask about the genotype  but they r closed. What if they don't do the genotype before the first transfusion...I am going to go on Friday 
Title: Re: Little Ari First transfusion
Post by: Sharmin on November 25, 2009, 05:42:41 PM

I hope that they can do the genotype testing soon - but it takes several weeks to get the results.  Ideally, they would have drawn the blood for genotype and phenotype matching at birth so that they had a enough time to get results.  

Although it is best to have the genotype information before any blood is given, even extensive phenotype matching will provide a good match until the genotype information is available.  It took Lil A two years to produce antibodies against foreign blood, and it is usually multiple transfusions that cause the problem.  Try to get the matching done before the transfusion, but if you cannot then just try to get it as soon as possible.  Sometimes it can take up to a month to get the results of genotype matching - see if they will do it for you quicker.  

This must seem very overwhelming to you - I hope that things get ironed out soon.

Here are a few things to expect during the first transfusion.  Baby will not like getting the IV at all - babies veins are tiny and it may take several attempts to find a vein.  Babies become very distressed, scream and sometimes hold their breath when they are upset.  Just try to remain calm, the baby will feed off of you and learn to be calm.  Once the IV is in and he is taped up you can hold him and get him busy doing something else - so he can quickly forget the poke.  Try to smile and be playful so that he is not scared that something bad is happening - even as he grows this will be important in order to keep a positive attitude about thalassemia for him and for you.  

IV's sometimes don't work in the hands, at times they need to poke feet (which babies hate!) - and I have seen some babies get it in the head (Lil A has never had a poke on his head but another little girl at our hospital does get it in her head).  

If he is well hydrated and is playing a lot before the poke his blood vessels will open up and the poke will go easier than if is dry or sleeping.

The nurses will start the IV, and probably give him saline before starting the blood very slowly.  Ari will have a bracelet (lil A likes to wear it on his ankle rather than his wrist because it causes less attention if he has to wear it to school).  Blood is tested the day before the transfusion, Ari will be given the bracelet with his cross match number on it - when you go in for a transfusion the nurses will check the unit against the number on his braclet.  Two nurses should be there to check the number and sign - at this time you can also compare that the blood type on the bag matches his blood type and number on his bracelet.  

His vitals - blood pressure, temperature, heart rate etc will be checked before the transfusion, and then every 15 minutes during the first half hour - then every hour until the transfusion is complete.  If you notice any hives, temperature change or sudden change in behavior you should let the nurses know.  

It is a good idea to use Ari's own clothing and blankets because hospital blankets and PJs sometimes give babies rashes - so it is hard to know if the rash is due to the linens or the blood.  Lil A's skin would get irritated due to the linens so I started using his own and the irritation stopped.  

Ari won't like the blood pressure cough on his thigh tightening up, the poking and prodding and perhaps the cold fluid going into his vein - but by holding him and playing with him a lot you can keep him distracted.  Soon he will forget about the transfusion and get busy playing.  Lil A actually liked transfusion day a lot as a child - by the time he was 18 months he learned to drag his IV machine around and play with all the toys.  He enjoyed having a special day with mom and dad at the hospital watching movies and having treats that he couldn't have other days. The nurses spoiled him too because he was a repeat patient that they got to know well.   Be sure to bring your favorite coffee and a good book for yourself so that you can enjoy your time there as well - it will help you to form a more positive attitude about the experience which will then trickle down to Ari.  He may nap for some of the time that he is there so you'll need something to do during that time.  

It is nice to have visitors - grandparents - uncles & aunts - however - no one should look sad or act as they feel sorry for him.  The should act like there's a party going on in his room and play with him.  

Once the transfusion is done, the IV will be removed - vitals will be checked.  They may keep him in for another hour to watch for reactions or fever.  Some centers do a post transfusion hg (our center does not do it because they think that the extra poke is not worth upsetting the child) but other centers do.  For the first few transfusions it may be a good idea to do the post transfusion blood test so that they can determine a good pattern for Ari's transfusions.  

I hope that this gives you an idea about what transfusions are like and how to deal with them,  I will keep posting more as things occur to me:).


Title: Re: Little Ari
Post by: Lena on November 25, 2009, 06:59:57 PM

Wow, Sharmin I am amazed with your instructions and all the little things you seem to care for when Lil A gets transfused. You are a role model for all parents, if I may say so! It's very important to lay down the lines like that and I am sure Carisma will benefit from everything you have written.

Title: Re: Little Ari
Post by: Sharmin on November 26, 2009, 04:57:46 AM
Thank you for your kind words Lena.  We received some very good guidance when our son first started transfusing and it proved to be very helpful.  Since the antibody and the treatments he has had related to the antibody - we have not been able to manage the emotional part as well.  I hope that we can get things back on track soon.  I appreciate your encouragement and all of the advise that you have given me - it will make a big difference. 

Charishma,  I hope that things are going well with little Ari.  I have been thinking of you and hoping that all is well.  Please let us know if we can help with anything at all. 

Title: Re: Little Ari
Post by: Cari on November 28, 2009, 03:47:50 AM
Hope everyone had a great thanksgiving :)  Little Ari had a lot of family madness these past two days...I don't think anyone can get enough of him.  Poor boy is exhausted but he is doing good.  I spoke with his doctor on Wednesday and he told me to bring him in to the emergency room if I thought i needed to.  He said he would transfuse if his level had dropped but it was best to wait until monday.  Not much help for me...

While i had him on the phone I asked about genotyping...he said that there is no such thing as an RBC Genotype test and that we had done the phenotyping and that was all we needed.  

Now, I dont know what more to do.  I sent him all the info about both tests that I gathered from this site 2 weeks ago...

Andy, the center is the one referred to me by Eileen while I was pregnant.  I had actually visited dr. boudreaux there in June.  When I spoke with her last week RBC Phenotyping was the only test she mentioned that I need to have done and she did guide my doctor through this.  Luckily my doctor responded to her.  How do you think I should go about getting the genotype testing done?  

I am afraid at this point that the transfusion will be done before the genotyping will be done.  

Sharmin, I am sorry i missed your call!  We celebrate thanksgiving on wed with one fam and on thursday with the other so it's been a busy few days.

Also, regarding lena's comment - I am blessed to have such great support from everyone on this site - especially sharmin.  My son has the same type of thalessemia as Little A.  Her guidance has kept me stronger than I would have been through all of this if I was by myself and for this I am so greatful.  Seeing Sharmin and her family has kept my husband and I so positive about Little Ari's future.  

I know that Sharmin went through the beginning with Little A alone - I CANNOT imagine that.  I am so so so blessed.  
Title: Re: Little Ari
Post by: Andy Battaglia on November 29, 2009, 09:06:10 PM
Hi Carsima,

The purpose of DNA genotype is to supplement what the phenotype matching can do. With genotype matching, you can make sure the blood is closer to your own racial or ethnic group, as these groups have characteristics more unique to that group. When the donated blood does not come from the same racial group as the recipient, it does increase the possibility of picking up one of the more rare alloantibodies that are not elimintaed with phenotype matching. However, because this happens when the recipient is living where there own racial group is not native, it becomes harder to find blood that is from your own racial group, so it is often not practical to try to find genotype matched blood. When there is a case like little A where the alloantibody has resulted in an autoantibody reaction, it is extremely helpful if genotype matching can be done to avoid introducing anymore of the more rare alloantibodies to the blood.

The general consensus now is that genotype matching, although an important part of the blood matching process, is not completely practical because of the difficulty in finding blood that totally matches the genotype. There is some hope that in the future, those at risk for alloantibody reactions will be able to be identified so that genotype matching is also done, but this is still just in theory.

If your doctors are interested in learning more about genotype matching, please show them the link to this article, which was published this year.   I'll print the conclusion here.

DNA-based blood group typing provides a valuable adjunct not an alternative to traditional methods of pretransfusion testing. Traditional methods for ABO and D typing are likely to continue, and methods for antibody detection and identification will still be required. Theoretically, it is possible to match patient and donor blood group genotypes electronically with the use of gene chip technology. However, this assumes DNA-based methods are totally robust, which they are not because novel mutations arise continually. It also assumes the blood available for transfusion at any given time will match all patients' blood group phenotypes for all possible polymorphic antigens capable of stimulating clinically significant antibodies, which is unrealistic. Tandem application of DNA-based methodology and existing methods will however provide improvements in the provision of extensively blood group–phenotyped red cells for patients with alloantibodies.

And thank you. Your words about how much difference this group can make to new parents means a tremendous amount to me. As a parent, I can really appreciate what that means and it tells me that we are really fulfilling one of the major goals of this group, and that is to help parents get through that period when they first learn of their child's thalassemia. One reason I have chosen parents as moderators is because they have lived through it and are in good position to help new parents go through the same experience. I am very happy with the ongoing efforts of our moderators and our members, who all do so much to help others, even though there is no reason they have to help anyone. But to me, it's all part of being good humans.
Title: Re: Little Ari
Post by: Sharmin on November 30, 2009, 06:06:26 AM

I hope that Ari is doing well.  Please keep us posted on his hg and what the doctors are deciding to do. 

Little A had his genotype testing done November 2008.  If you contact the Oakland clinic (I have sent you their phone number) - they can send you the information needed for genotype testing. 

Please let me know how it goes,

Title: Re: Little Ari
Post by: Cari on December 01, 2009, 04:32:39 AM
Hello All,

Ari's hg is still at 6.  They still do not want to transfuse and have the hope that he is going through the nadir.  I have told them that is unlikely as he is a beta 0 and explained the info sharmin gave me but the doctor says that his vitals are fine so it should be fine.  I don't really know how to handle the situation and make them change their minds on this issue.  I will continue to watch Ari and I am schedueled to go back in a week and a half.

As far as genotyping, I have somewhat good news.  My doctor will review the information Andy has sent.  He also knows dr. V from the oakland center and has told me he will contact him to get info.  I will also contact him tomorrow. 

Title: Re: Little Ari
Post by: Zaini on December 01, 2009, 06:19:50 AM
Good luck with everything Carisma :goodluck Sending prayers for you and Littel Ari .:hugfriend

Title: Re: Little Ari
Post by: Sharmin on December 01, 2009, 04:14:38 PM
Good luck Carisma, I am glad to hear that his hg is holding still.  I still believe that he will need to be transfused soon.  Has the doctor mentioned what hg level he would be willing to transfuse at? 

Take care  :hugfriend

Title: Re: Little Ari
Post by: Bostonian_04 on December 02, 2009, 09:02:21 PM

Did Ari's hemo mention when they will start transfusion? Hb of 6 is low for a growing infant when you know he is beta 0. In Boston, they started transfusion when our daughter's Hgb went below 7.0.

I am glad to know that Little Ari is doing well and he is keeping you busy. Good luck with every thing.
Title: Re: Little Ari
Post by: Cari on December 11, 2009, 04:19:04 AM
Just wanted to give an update as we went to the doctors today. Ari's hg is still at 6.  The doctor does not want to transfuse him as he still believes that the hg will go up.  He wants me to come back in 2 weeks.  I scheduled to come again next week. 

Ari is doing well.  He seems to be eating well and he is now 12lbs.  He was 11.5lbs the week prior to thanksgiving. 

I contacted Dr. V. in Oakland and spoke to his nurse.  She said that they are doing the right things and i shoudn't worry.  She also mentioned that I genotyping was not neccessary since he was not a polytransfused patient.  I had her read all of your posts on this discussion. 

One question on my part to all - does genotyping tell you what TYPE of deletion the child has?  When I spoke to Dr. V's nurse I mentioned that my husband and i had tests done prior to conception that confirmed that we both had the 619 deletion and the amnio confirmed  the 619 deletion for Ari. 

The only test she said we should do is the Alpha Globin mutation.

I am so confused once again.  I just want to make sure Ari gets the best treatment early on and right now I just feel like i'm not sure what I can to do help move things along.  He is definitely pale and I am waiting for the day i can see some rosy lips and cheeks. 

Love to all.
Title: Re: Little Ari
Post by: Keep Smiling on December 11, 2009, 04:56:59 AM
Insha Allah, that day will come very soon..
wishing u Luck!

Title: Re: Little Ari
Post by: Cari on December 12, 2009, 02:51:46 PM
We r on our way to get Ari transfused today. Keep us in your prayers.
Title: Re: Little Ari
Post by: Sharmin on December 12, 2009, 06:38:58 PM
Wishing you the best Carisma.  Little Ari is always in my prayers.

Title: Re: Little Ari
Post by: Cari on December 12, 2009, 07:18:05 PM
Thanks sharmin :)  we are at the hospital now waiting for blood.  they said they found antibodies and are now looking for the best match. 
Title: Re: Little Ari
Post by: jade on December 13, 2009, 02:30:17 PM
Hi Carisma
Hope everything goes well for little Ari and for you too. 
Take care
Title: Re: Little Ari
Post by: Sharmin on December 13, 2009, 07:06:37 PM

How did everything go?  Did they keep Ari in over night?  How was the IV?  I hope things went smoothly for you.


Title: Re: Little Ari
Post by: Cari on December 18, 2009, 07:44:02 PM
Hello all,

Ari is doing well thank God.  He finally has color in his face and more energy than before.  He was not eating well but he is building back up now.  Thank you for all your good wishes and prayers. 

His HG is at 9.7 now and we will go back next week to recheck and make sure it is not dropping. 

Ari did so well during the transfusion.  He is truly wonderful and I love him more and more every day.  I couldn't have asked for anything more and I know that I made the right choice a few months back. I wish there was a more positive outlook in the internet on thal....maybe then parents wouldn't be so scared when faced with a decision like that.   

Thank you to all of you who got us to this point.  I get stronger every day by reading your stories.

I'll keep you posted as we go along.  Thanks!!
Title: Re: Little Ari
Post by: Andy Battaglia on December 18, 2009, 09:41:46 PM
Hi Carisma,

I am happy to hear that Ari handled the transfusion well. It's often the parents who have a harder time dealing with this than the kids.

I am very much conscious of what most of the internet will tell new parents bout thalassemia and have mad great efforts to show parents what the current outlook for thals is, so they do not feel so desperate upon learning their child has thal.  I think this is one of our most important roles as a group, and something I took greatly into consideration when doing the posts "What is Thalassemia and How is it Treated?" I hope we can be that island of hope on the internet that parents can find and get an accurate view of the prospects for a newborn thal. Your words tell me we are doing a good job at that.

Title: Re: Little Ari
Post by: Zaini on December 19, 2009, 03:10:38 AM

I am so happy to hear Ari did well in transfusion and you are seeing positive changes in him :hugfriend i agree with you about outdated info about thal on internet,but i am glad that you found out whats the truth :yes.

Good luck :goodluck

Title: Re: Little Ari
Post by: Lena on December 19, 2009, 09:05:38 AM
Hi Carisma,

young thals are so lucky nowadays with new med treatments and so many well-informed thal experts! I really feel a little jealous that I was born 48 years ago! Have no fear! As long as you maintain Ari's hb above 10 and his ferritin near 100 you have nothing to worry about. Your son will have a normal  lifespan and outlive many people considered "healthy".

Best wishes,

Title: Re: Little Ari
Post by: Keep Smiling on December 19, 2009, 03:49:07 PM
Good news........
Title: Re: Little Ari
Post by: Dori on December 29, 2009, 09:25:21 AM
I am glad to hear Ari (and parents) is doing well.  :hugfriend
Title: Re: Little Ari
Post by: Cari on January 18, 2010, 03:28:52 AM
Ari had his 2nd transfusion last thursday.  His hg went from 9.7 to 6.9 within 3 weeks. This time, it took a less time to find blood and more time to find a vein!  They poked him 11 times!  Poor boy was so upset...i think we were even more upset! 

Anyhow, he is doing better although i find him to be VERY red at times....he looks like a little lobster :) I've also noticed he's sweating more and that he has a rash consisting of small red bumps that do not seem to be irritating him but we can see them all over his body.  It did not happen right away - he was transfused thursday evening and we really noticed the bumps today..sun.  He had a similiar rash last month only it came about a few days after the transfusion.  It may or may not be related...i cannot really tell yet. 

Anyhow, just wanted to update...Hope everyone is well :) 
Title: Re: Little Ari
Post by: Zaini on January 18, 2010, 04:30:44 AM

Glad to hear little Ari is doing well  :hugfriend finding vain will take some getting used to,and with that small kid,its hard for us parents too,but kids are amazingly resilient and they fall into a routine more easily then us,so it will get easier :yes .

Title: Re: Little Ari
Post by: Sharmin on January 18, 2010, 06:28:55 AM

I am glad that Ari received his transfusion, and I understand the difficulty of finding a vein for transfusion.  Remember, that is the most difficult part of thalassemia - those moments that are spent finding the vein.  After that he gets in blood and he is healthy for weeks. 

I don't think that the drop is too rapid for a 3 week period.  Once they begin transfusing him at a pre-transfusion hg of > 90 he will not drop so low anymore. 

Wishing you, Ari and your entire family the best.  Ari will get better with this over time - and it will become much easier on you as well. 


Title: Re: Little Ari
Post by: Madhavi on January 18, 2010, 08:24:37 AM
My love and wishes are with Ari and you all....sorry I hadnt seen this post earlier....
I envy that you have someone like Sharmin to help and guide you the way she does....! :hugfriend
And I am surprised at how little the doctors know and do for patients of thal back home in India-even when it is a private set up. They are way too casual about it all....I wish that could change.....
Title: Re: Little Ari
Post by: Bostonian_04 on January 18, 2010, 06:50:45 PM

This is the hardest part for a parent...when the nurses poke multiple times to get a vain. Few things that helped when our daughter was 2 to 3 months old were - keeping her hydrated, making her drink milk before leaving the house, keeping her hand wrapped with gloves or cloth to keep it warm and veins easily visible. After she turned one, getting a single poke got easier and I believe you will also see that. For the rashes, it could be Tx reaction. Here in Boston, little E always gets a dose of benadryl before TX starts to reduce Tx reaction. You could ask your hemo about it too. Best of luck and believe me , it will get easier as little Ari grows up.
Title: Re: Little Ari
Post by: Cari on January 22, 2010, 08:16:29 PM
Thanks for all your support guys!  Just wanted to update and let you know that Ari's HG was at 13.8 today. (a week after the transfusion)  I'm so happy that it got to that level.  Does this mean it will stay up longer? 

My only concern is that they aren't going to transfuse him again until it drops back to 6...i hope they don't do that again....
Title: Re: Little Ari
Post by: Canadian_Family on January 23, 2010, 12:20:14 AM

The Hg of 6 is not acceptable by any means. For a thal major patient, the Hg should always be above 100 mark. Specially, little Ari is in growing years and should be kept at high level of Hg for normal growth. I don't understand why would doctors not transfuse him until his Hg is 6. You should push for Hg of atleast 100. Talk to your doctor and have Ari tested again in a week or so; to see where is Hg level is.

To answer your question the Hg of 13.8 is good but it will gradually drop over the period of two or three weeks, so keep an eye on him.

Best of luck.
Title: Re: Little Ari
Post by: Sharmin on January 23, 2010, 06:02:28 AM

I am so glad to hear that Ari's hg is so nice and high.  You must notice the color change in him - especially inside his mouth.  Looking inside his mouth, at his lips and inside his eyelids will tell you if his hg is good or if it is low.  Now that his hg is high you have a good reference point. 

As Canadian Family said over the next few weeks his hg will gradually drop.  You may wish to discuss with your doctor what the plan is for his next transfusion.  There is little reason to believe at this time that he will produce his own hg and letting him drop to 6 again is futile and may affect his growth. 

Best of luck - I'm sure we will talk again before then,

Title: Re: Little Ari
Post by: Dori on February 28, 2010, 12:08:16 PM
To avoid scarring in the veins: push on the poke place untill the bleeding stopped completely. That's what the anaesthesia specialist of my hospital told the lady next to me she usually get every week 20 pokes before it is succesfully - even with him. Without him it would be never succesfull.
Title: Re: Little Ari
Post by: Sharmin on December 15, 2010, 03:50:36 PM

I hope that things are going well with Ari.  It was nice catching up with you on the phone the other day, it had been a while.  I had wanted to call you back but lil A got really sick after.  I hope everything is going well:)  

Lots of hugs to the little guy,

Love Sharmin
Title: Ritusmax therpy for thal major patients
Post by: gayatri on January 26, 2011, 04:29:31 AM

My daughter Ms gayaytri m bajaj is thal maor 15 yrs old ,we had gvn rituxmax treatmnt two years back to controll antibodies , her requirmnt fr blood is increased once in week again ,pls suggest ,


Manish s bajaj
Title: Re: Little Ari
Post by: Dori on February 02, 2011, 11:08:15 AM
Hey Gayatri.
Your daughter gets 1 unit of blood every week? I did not know antibodies were treated with antibodies. Did it work? What do you want to know from us exactly?
Warm wishes, D
Title: Re: Little Ari
Post by: Sharmin on February 23, 2011, 11:13:10 PM

The best treatment for your daughter is to give her ritux again - this time one dose instead of the usual 4 should suffice.  This process may need to be repeated once or twice over the next year or two.  From there you can see how things are going. 

How are Gayatri's ferritin levels?

Title: Re: Little Ari
Post by: aus on March 25, 2011, 05:03:32 AM
My son has picked up the Kell group antibody sometime in the last year. Now he is in more trouble. He has to have that type of antibody in the blood. This has limited his donours greatly. I am carrying his antibody card. Because of my lack of understanding, I assume that he will have to have blood with this type of antibody for the rest of his life. There are currently a couple of donours with this type of antibody which match his blood type. Not a comforting thought at all.
Title: Re: Little Ari
Post by: Dori on March 26, 2011, 07:03:33 PM
Hey AUS,
Sharmin is the right person to ask about. Her son and she has been through the same, if I recall that correct.
Stay strong and keep in touch with us. We are going to explain this do you.Where are you from?
Title: Re: Little Ari
Post by: Cari on June 09, 2011, 06:12:07 PM
Hello all,

Just wanted to update because we were really excited today.  For the first time since transfusions began, Ari's interval for this month is going to be at 5 weeks. We checked today at week 4 and his hg was at 10.7. 

I'm not sure why as he did have a cold earlier this month and was on antibiotics.  They didn't give him more blood than usual at the the last transfusion either. He was at 9 at the time and that transfusion had taken place.

We were thrilled because the last one (where he was at 9) took place within a 13 day interval as he was really sick.    He has been getting  177ml per transfusion. 

Transfusions usually occur every 4 weeks lately but it has always been in the low 9's or high 8's when we have him checked.  There was also a month where he was completely fine - no colds nothing and his hg had gone down to 8.5. 

OF course, that is always discouraging as we would love to prolong the intervals but I started to think that maybe we need to get to a 3 week intervals rather than 4.    I hope he can keep this up for a while.  We will be doing his FerraScan in August and I believe they will start exjade when he turns 2. 
Title: Re: Little Ari
Post by: Sharmin on June 10, 2011, 05:40:32 AM

I am glad that Ari's transfusion lasted longer this time.  It is very common for changes to take place over time - especially in that age group.  I think the vitamin supplements will help his transfusions last longer too.  Ari looks like he's grown quite and bit in the last little while, which can increase transfusion requirement.  Also, when the immune system is more active transfused blood is broken down faster.  You should see him settle down into a routine of roughly 4 weeks soon. 

Title: Re: Little Ari
Post by: Supergirl on June 11, 2011, 04:36:34 AM
Our little SG(Supergirl) has also been going through the same phase....last month it fell to 7.5 and this time it was 8.5.  Well, so it seems that Little Ari and SG being the same age are following a similar pattern, which somewhere is a little comforting, not that we would  want them to go through any of this.

Anyways, so I wanted to share with you what Dr. Vichinsky recommended for SG. We are following his suggestion and are comfortable with it, as it gives us a routine.

Our SG has gone through 15 transfusions so far. First 6 months we were adjusting the transfusion interval, but since then have been adjusting the amount of blood. Today I have dates for the next 4 transfusion schedules, and that just takes away a bit of uncertainity from our lives and helps me plan better.

Hope all this makes sense.

Title: Re: Little Ari
Post by: Andy Battaglia on June 11, 2011, 07:07:37 PM
I really like this transfusion regimen that Dr Vichinsky is recommending. It makes total sense and will result in a relatively stable Hb level.
Title: Re: Little Ari
Post by: Zaini on June 13, 2011, 04:16:23 PM
Thats interesting,we should see how it works in the long run.
Title: Re: Little Ari
Post by: Dori on June 15, 2011, 01:58:08 PM
Thank you for sharing :)
Title: Re: Little Ari
Post by: Sharmin on June 17, 2011, 04:08:25 PM
We have done this with little A in the past - increasing his transfusion volume from 15cc/kg to 20cc/kg - this works well in most cases.  In our case eventually, because of the antibody, we came to a limit where giving him more blood volume would put a load on his heart but in most cases it is a great idea. 

Title: Re: Little Ari
Post by: Dori on October 16, 2011, 12:09:14 PM
How's little Ari doing?
Title: Re: Little Ari
Post by: van on October 26, 2011, 04:23:54 PM
how is Ari doing? It looks like Ari turned into 2. Any plans doing stem cell transplant?
Title: Re: Little Ari
Post by: Cari on November 04, 2011, 08:19:17 AM
Little ari is doing good, we just had another little one last week and he is adjusting to his new baby brother beautifully! ari is growing up fast and currently transfused every 3 to 4.weeks. We have not discussed treatment for him at this time as we would like the options out to mature   to putting him through any. Things are not always smooth but he is as normal as any child and makes me proud every day. how old is your tdaughter van?
Title: Re: Little Ari
Post by: van on November 04, 2011, 06:40:07 PM
My daughter is 18 months older.
Title: Re: Little Ari
Post by: Dori on December 03, 2011, 08:57:00 AM
Congratiulations with your new son and Ari's little brother. <3
Title: Re: Little Ari
Post by: Cari on December 28, 2011, 01:02:21 AM
Hi everyone, hope you have had a very happy holiday and that you are all doing well!

I wanted to touch base and see if you could help me with some issues we r having. Ari has been on exjade since september and they informed us in october that his liver enzymes were elevated. They took him off exjade for a month in november and after two weeks of being on it his levels were back up...

 Alkaline phosphate 242

Alaline amino trans..620.

Asperate amino trans. 97

I think the last two are ALT / AST

They have him in exjade until thursday and they will check again. Any one experience something like this where exjade wasn't fitting? I am concerned because the doctor hadn't heard of any other oral chelator.
Title: Re: Little Ari
Post by: Dori on December 28, 2011, 10:51:13 PM
Yes İ have had this too. as long as it is not like 5x higher you should not worry too much. i would advise an other try out and maybe with a lower dose. one's body need to adjust to it. Also it is recommend to drink a lot of water. whrn that happend to me İ stopped for three weeks. Maybe this helps?
Title: Re: Little Ari
Post by: Andy Battaglia on December 29, 2011, 02:58:35 AM

The ALT is 10 times normal. The other levels are double. If Ari is taking it once per day, try splitting the dose and taking half in morning and half later in the day. Keep him well hydrated and if at all possible, get the tests done early in the morning, as the results won't be affected by activity. Tests run later in the day tend to have higher levels and may not be as accurate. I would also suggest delaying taking Exjade that day until after the tests are run. If he continues to have high readings, he may not be able to tolerate Exjade at this time. The other oral chelator is Ferriprox and has only become available to patients in the US at the beginning of this year. I don't know if there are age restrictions on the drug's use here. Desferal can be the last resort, but it is tried and true as a chelator.
Title: Re: Little Ari
Post by: Cari on December 29, 2011, 04:59:32 AM
Thanks for your responses!. Initially, the doctor didn't recommend us to split the dose and we were having a hard time splitting the dose because ari was going to daycare, we were both working and we were nervous to send the exjade to school. However, I was finally able to convince the doctor to prescribe the 150 mg tablets so I could easily do this.

I will try your methods andy, hopefully, it works. I am hoping they reduce the dosage before going straight to desferal. The worst thing for me is that we are so compliant:-(  there are so many parents that don't even care she miss doses!. I make it a point to hydrate and ensure he has all of it and here we go with another dilemma.

I hope he ....WE can adjust to desferal if we need to.
Title: Re: Little Ari
Post by: Sharmin on December 29, 2011, 05:21:16 AM
Dear Cari,

I hope that Ari will do well with the reduced and split dose of exjade.  For now it may be best to keep him on a very low dose.   A low dose won't work to reduce his iron but it will remain in his body to bind free iron.  The low dose will also be less likely to cause the side effects.  Sometimes temporarily stopping exjade and trying another form of chelation is helpful.  Likely, you will be able to resume exjade at a later time.  There are more options available every year.  If you consult Dr. Vichinsky he may be able to tell you about the latest oral chelators being investigated. 

If you require desferal - perhaps desferal can be used in combination with an oral chelator so that you are not using it very often.  Hopefully adjusting the exjade dose and splitting it will resolve the problem but if it doesn't we have many tricks and methods that we found helpful when our son was little. 

Let me know if I can help with anything,


Title: Re: Little Ari
Post by: Cari on December 30, 2011, 08:15:42 PM
Thank you Sharni!

So here are the results for the past few weeks.  The ones on the bottom are the most recent - they seem to have dropped from the last time.  They have kept him on exjade until the doctor gets back from vacation.

November 17
ALK  157
ALT  352
AST  133


December 8
ALK  165
ALT   69
AST  63


December 22
ALK  242
ALT  620
ASR  97

December 29
ALK  219
ALT  89
AST  50

So i'm not sure if this is a good sign or bad but I wanted to share and see if anyone had any insight.  Thanks in advance!!!!

Title: Re: Little Ari
Post by: Andy Battaglia on December 30, 2011, 09:05:31 PM
That's a huge drop in the ALT and very encouraging. Perhaps his body is finally adjusting to the med. I would suggest splitting the dose so his body does not have to process the full dosage so quickly.
Title: Re: Little Ari
Post by: Bostonian_04 on January 13, 2012, 04:06:33 PM
Hi Cari,
we have similar issue with our daughter recently. Did Ari had any fever or cough etc...sometimes those affect ALT/AST levels as well. Thats what we found...Our daughter had cough and mild fever for no apparent reason and the ALT?AST levels shot thru the roof....we split the dose and had her on antibiotics and things returned to normal. so, yes, spilitting dose really helps. Definitely try doing that. For splitting doe, what we do is: give half the dose early morning and then the next half, after we pick up our daughter from daycare and reach home. so, you may not have to give the med to day care.
All the best... the recent lower ALT/AST levels are encouraging. so, I think little Ari will be fine. God bless !
Title: Re: Little Ari
Post by: Cari on February 11, 2012, 03:20:50 AM
Hi everyone,

first off, thank you  all for your responses :) I just saw the response from bostonian and that its very helpful. In hoping that its actually the case right now for ari.

Our last transfusion for him was JAN 8 and at that time alt/ ast levels were back to normal.
ALT 31
AST 42
Ferritin 2101

Well, we went today for his transfusion and all the levels are crazy high.

He HAS been feeling down since thursday.  low grade fever of 99 on thursday night. Not eating much and very tired. His hg was at 8.1 today. This morning he threw up and has just been tired. Still not eating. He got his blood and has a bit more energy but still won't eat. He threw up a little again too but no fever nothing else.

One thing is that he us urinating a lot. But he's very thirsty too do he's drinking a lot.

So, heres why I'm freaking out....results for today:

ALT 1104
AST 773
ferritin 3129 (last month it was 2101)

He has been on exjade with the exception of a few weeks in nov and dec (noted above).
I have been splitting the dose AND I did not give him exjade before he got hours blood drawn today..I gave his first dose to him after (per andys suggestion from a previous post)

I know levels increase when children are not feeling well but this is pretty crazy right? I'm very concerned for one because no one can see what's wrong with him...its probably a virus but who knows...and two..the levels are just strange.

He is gaining his energy back tonight as we speak but as i, mentioned...still  no interest in any food...not even jello. Just water. Im supposed to go to get the labs redone on tues and we have been told to stop exjade again until that time.

If anyone has any insight on this please please please, let, me know. thank u all in advance :)
Title: Re: Little Ari
Post by: Narendra on February 13, 2012, 05:05:09 PM
Cari - I see it as a positive sign that he is drinking a lot of water. I understand kids don't want to eat when they are unwell, but am glad Ari is drinking lots of fluids - It helps in flushing the virus.
Title: Re: Little Ari
Post by: Andy Battaglia on February 15, 2012, 01:10:51 AM
I would suggest stopping Exjade for a month and then starting again, if he is healthy. Having lived in Florida, I am quite familiar with how difficult it is to prevent colds and flu, since a new wave of illness seems to hit every couple weeks due to tourists sharing their local illness with Florida.
Title: Re: Little Ari
Post by: Cari on February 15, 2012, 03:19:51 AM
We had him checked today and his levels have come down quite a bit. They are now 377 and 85. Still not normal but I guess better. They are keeping him off exjade. It was a really irritating day though as they were too busy.and sent us to a lab in the hospital to get his blood drawn. they completely bruised.up his arm there. Its horrible. I've seen him get poked so many times but this was the worst way I've ever seen it done. they only likes him 3 times but they dug into him with no care.

Anyhow, I'll keep you all posted. Thank you for your help.
Title: Re: Little Ari
Post by: Bostonian_04 on February 23, 2012, 07:05:41 PM
Hi Cari,

So sorry to hear what ARi had to go thru...But reading your posts and also having similar experience with our daughter on ALT/AST/Ferritin levels, I still think it is not from Exjade. It is probabaly the bug he got. When we get sick our ALT/AST/Ferritin levels also shoot up but since we don't get these tests done regularly we never come to know. SO, hang in there. It will be OK. Just give him all the meds he needs for the bugs and offcourse lots of fluid....I am not sure about totally stopping exjade though. My dov says only stop if you have fever during these times. SO, do follow whatever your doctor has recommended.
Title: Re: Little Ari
Post by: CatherineM on February 23, 2012, 09:48:10 PM
Hi Carli

Hope Ari is feeling better soon.  There are two markers for infammatory markers which can be tested CRP and ESR. (blood test).

All the Best
Title: Re: Little Ari
Post by: Cari on February 24, 2012, 05:02:05 AM
Thank you guys.:) Bostonian, I think its always related to the illness as well. I don't want to stop giving him the exjade but at the same time I guess I'm afraid that something could happen to him with levels so high. The crazy thing is that he keeps getting these viruses. He had his last virus on feb 10 & it lasted a few days. He caught another similar virus two days ago and has once again stopped eating much. This time even the drinking is forced.

Its coming from school and I'm so irritated but I don't know of taking him out is going to benefit him as he really enjoys it. anyhow, at this point they are saying that the increase in ferritin causes concern to and that they need to do more research.

CatherineM, I can tell them to check these but what/how should I explain that this will benefit. is out documented somewhere? Only because these doctors doubt everything I say.
Title: Re: Little Ari
Post by: Supergirl on February 24, 2012, 07:18:05 AM
Hi Cari,
Hope Ari is feeling much better. I just read through the previous posts and wanted to send comforting hugs to you.
I would also like to share our experience with Exjade.
We started our little girl AK on Exjade when she was 1 yr old and gave it to her for almost 11 months. In that time we noticed growth issues (which I will elaborate in another post as our experience may help others) that made us discontinue it. Anyhow, so we started back with it almost a month back (24th Jan)
So far we have not got her enzyme levels checked (in-fact had no clue about it, but will now get it done now), as such I can't comment on issues around it. But we have constantly struggled with appetite issues and eventually growth, as in not gaining weight and height. AK's food intake falls drastically, she passes a lot of gas, burps more often and shows no interest in food.  She also complains of tummy ache 4-5 times a day, but exhibits no external symptoms; does not throw up, no constipation, does not double over  etc.

We think it is because of exjade.
It could be a typical 2 year old toddler phase, but the same thing happened when we started it at age one. Also her weight has gone down in these last four weeks and so following options were considered with the doctor-
1) Split the dose.
2) Give her a stimulant that will make her more hungry.
3) Give a high calorie nutritional supplement like DUOCAL (no iron in it)

So we still have to research more on it before we decide. But for now we are continuing exjade, alternating 225mg one day and 350mg next day (125mg tablets dissolved in apple/mango juice).

This is not exactly an answer to your question, but I thought it might be useful to know how others in the same age bracket are experiencing Exjade. Do tell me if I can help in any other way.



Title: Re: Little Ari
Post by: CatherineM on February 24, 2012, 01:03:36 PM
Hope this make sense.

If ferritin level has gone up due a illness (eg acting as a inflammary marker) wouldn't it sense that the other markers would be up as well.

Title: Re: Little Ari
Post by: jotembe on February 24, 2012, 04:01:13 PM
Hello to everyone,

please let me share some  thoughts with you.
Being yust two years of age, little Ari's immune system still isn't completed. Besides, thal major children are much more vulnerable to viruses and bacteria. Giving them a higher quantity of fruits (with the intention to protect them) will rise the iron overload (vitamin c promotes iron absortion).
So I would try what grandma did in times of flu: prepare a rich chicken soup and offer this to Ari at meal times. Indian physicians and thal patiens report good experiences with additional wheat grass juice and supplemented folic acid.

Best wishes from Germany


Title: Re: Little Ari
Post by: Bostonian_04 on March 03, 2012, 08:05:46 PM
As far as I know chelation should NOT start till a child is atleast 2 years old. this is specifically for growth issues. For tummy aches, we found that giving our daughter after meal helped to reduce the ache. as well as splitting the dose. Hoe AK is doing fine now.

all children when they first start school or daycare go through this (repeated infections, fever etc). My daughter went thru the cycle so did all other kids in her class. You will see next year will be much better for Ari. Just ride it out....don't worry too much about ferritin..with repeated infections, you are not truely getting the correct ferritin reading. The yearly check up thru MRI or SQUID is the only way to know how bad is the Fe in the organs.