Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: Sharmin on March 17, 2008, 10:31:38 PM

Title: can someone help me out?
Post by: Sharmin on March 17, 2008, 10:31:38 PM
Hi friends,  :hugfriend

I'm becoming a little concerned about my son's antibody.  This warm autoantibody has persisted for over two years now - we had hoped that it would disappear by now.  He has been on prednisone for 2 years now - and this is only keeping it under control such that he is transfused every 3 weeks.  If there is an illness, his hg will drop quicker. 

Does this mean that this antibody has become chronic and will persist or that it will be associated with a more globalized problem?  He looks well, and is very healthy.  His spleen is not enlarged and he looks and acts great. 

However, I am very concerned due to this antibody.   Some of the new avenues of research for thalassemia also suggest that they can help with autoimmune issues - autoimmune hemolysis (which is what my son has).  Is it possible that if he is cured of thalassemia, that he may also be cured of the autoimmune issue? 

I am comfortable with the thalassemia, and hopeful that the treatment will get better soon - but this autoimmune issue has left me very much afraid.  Can someone please help!  Thank you.

Sharmin
Title: Re: can someone help me out?
Post by: Andy Battaglia on March 17, 2008, 11:30:44 PM
Hi Sharmin,

There aren't many treatments for hemolytic anemia other than prednisone and splenectomy and I don't think your son's condition is bad enough to be talking about splenectomy at this stage. Usually that won't be considered unless the spleen is quite enlarged and transfusion frequency is one week or less. Two things I did find are use of folic acid (what dose is your son taking daily?) and slowing down the rate as which blood is taken.

http://www.emedicine.com/med/topic979.htm

Quote
Administer packed RBCs slowly to avoid cardiac stress.
In autoimmune hemolytic anemia (AIHA), type matching and crossmatching may be difficult. Use the least incompatible blood if transfusions are indicated. The risk of acute hemolysis of transfused blood is high, but the degree is dependent on the rate of infusion. Slowly transfuse by administering half units of packed red cells to prevent rapid destruction of transfused blood.

I don't know if this has been tried yet but it does seem to slow down the destruction of transfused red blood cells.

I would also suggest vitamin E and low dose of vitamin C daily (100mg), as both make for healthier circulatory systems. Do not exceed 100 mg C for a child his age. Thals often totally avoid vitamin C but if taken between meals, it will not add to iron absorption and thals are universally deficient in C. Low doses daily are no danger and will help the vitamin C starved body.
Title: Re: can someone help me out?
Post by: Sharmin on March 18, 2008, 12:45:09 AM
Thank you Andy, I have had some anxiety over this issue for a while. 

My son is not on a folic acid supplement - what dose would be appropriate for him (his current weight is 25.5kg). 
He is also not on vitamin E - can you also suggest a dose?  He is on vitamin C - he gets 100mg with his desferal nightly. 

The doctor has told us that the antibody seems to be slowing down over time, which gives me some hope, but it has not gone away yet.  Apparently, hitting the body with intermittent high doses of prednisone can sometimes shut the antibody right down as well. 

In the meantime, I will mention to his doctor that maybe we can try to slow his transfusion rate down.  Currently, he gets 20cc/kg - at a rate of 90/hr.  He gets 1 and 3/4 bags of blood.  Maybe we can split the transfusion between 2 days or something to make it last longer - 1 unit every two weeks may last longer than almost 2 units every 3 weeks.   So far your ideas have made a big differnce - maybe this will help out too Andy. 

Who would have thought that a child with thal major would also develop hemolytic autoimmune anemia??  The doctor says that the two are completely unrelated - and perhaps someone who makes their own blood may not notice the small amount of hemolysis - but in a thalassemic - the transfused blood cells are being broken down - meanwhile the body is unable to replace them - resulting in an increased transfusion requirement.   

No matter how strong we try to be, I think some days we can get shaken up.  Especially when unexpected issues arise.  Hopefully, with our prayers - and the prayers of all of our friends on this site - this pesky antibody will go away soon.

Sharmin :pray :pray :pray :pray :pray :pray :pray :pray
Title: Re: can someone help me out?
Post by: Manal on March 18, 2008, 01:45:50 AM
I am sure Sharmin, that God will answer all our prayers and your heart will rest. I am praying for him and please try Andy's suggestions, i am sure they will make a difference. Please keep us informed

Manal
Title: Re: can someone help me out?
Post by: Sharmin on March 18, 2008, 02:57:19 AM
Thank you Manal, you are a great friend  :hugfriend

Andy's advice has helped us avert so many crisis in the past - i am sure it will help us overcome this roadblock too. 
Title: Re: can someone help me out?
Post by: Andy Battaglia on March 18, 2008, 03:51:51 AM
Hi Sharmin,

I would suggest 1 mg folic acid daily. Adult thals are known to take 5-10 mg daily. 100-200 iu Natural complex vitamin E daily.

Although the autoantibody response is not directly related to thalassemia, it may be related to the transfusions. It has become apparent in recent years that the incidence of this in transfusing thals has been underestimated because of lack of data on the subject. As more data has been collected, the relationship has become more apparent.

http://asheducationbook.hematologylibrary.org/cgi/content/full/2006/1/13#R8

Quote
Association with blood transfusion
While alloantibody formation is a recognized and reasonably common complication of blood transfusion, the possibility of autoantibody formation has not been well recognized. Young et al analyzed over 2600 patients with a positive direct antiglobulin test or indirect antiglobulin test, and identified 41 patients who had both an autoanti-body and an alloantibody. About a third of them developed their autoantibody in close temporal association with alloimmunization following recent transfusion.7 Therefore, AIHA (Autoimmune hemolytic anemia) developed either concurrently or shortly after alloimmunization from blood transfusion. The authors conclude that AIHA is a potential complication of allogeneic red blood cell transfusions, and recommended supportive treatment with iron and erythropoietin analogues, avoiding further transfusion whenever possible. This complication of red blood cell transfusion may be more common than previously appreciated.8 It has also been noted in patients with hemoglobinopathies who have received multiple transfusions.9–11

A study from Oakland Children's Hospital published in 2000 investigated the immune response among those of Asian descent who received blood transfusions with the blood of predominantly white donors.

http://bloodjournal.hematologylibrary.org/cgi/content/full/96/10/3369

Quote
Alloimmunization and autoimmunization are common, serious complications in Asian thalassemia patients, who are affected by donor-recipient RBC antigen mismatch and immunological factors.

World wide, thalassemia is most prevalent in Asians, and due to large population movements, people of Asian descent constitute the majority of patients in many thalassemia centers in Western countries. However, there is very limited data on the RBC phenotypes among Asians, the extent of alloimmunization, and the role of phenotype differences between blood donors and recipients in forming antibodies.

We studied the frequency of alloimmunization and erythrocyte autoimmunization among thalassemia patients who received regular transfusions and in particular looked at the RBC phenotypes of Asians. We investigated factors possibly affecting the antibody formation: RBC phenotypic differences between the local donor pool and Asian recipients; patient- and blood-related immune factors; and preliminary findings of conformational changes of the transfused RBCs, which perhaps trigger antibody response.

The association of thalassemia and erythrocyte autoantibodies has not been studied. The true frequency and the clinical spectrum are unknown.1 We found a high frequency (25%) of autoantibody formation, mostly IgG warm antibodies, of which 18% had a significant clinical hemolysis. The antibody development was associated with alloimmunization, exposure to nonleukoreduced blood, and absence of spleen

Our data show altered RBC deformability profiles, more so in patients without spleen than in patients with spleen (Figure 1). These findings are consistent with senescent erythrocytes and may expose new antigens and promote or enhance an immune reaction, as known to occur in aging and impaired RBCs.26,27 It is likely that the absence of an efficient filtering system for removal of damaged erythrocytes enhances the process. In accordance with this hypothesis, a previous study showed increased hemolytic autoantibody response in mice without spleen compared to mice with spleen and a spleen role in regulating this response.28

In summary, our data show that alloimmunization to minor erythrocyte antigens and erythrocyte autoimmunization, of variable clinical significance, are frequent findings in transfused thalassemia patients. The causes are not fully understood; however, data suggest that the recipient's immune status, along with the effects of multiple allogeneic blood transfusions, can induce antibody formation. We found an association with the absence of spleen and the presence of deformed ex-vivo RBCs that probably augments these mechanisms. The difference in the RBC antigen profile between the predominantly white donor population and the Asian recipients likely further contributes to the phenomena.

With the growing knowledge base of the immune effects of current blood transfusions23,24 and limited data on the immune status of thalassemia patients, a large study addressing the complex interaction of these factors is needed. Such information may enable understanding and prevention of this serious and common complication. In clinical and transfusion practice, when considering splenectomy, a potential higher risk for future RBC immunization should also be taken into account. We recommend obtaining a RBC antigen phenotype on all thalassemia patients, particularly of Asian ethnicity, who are started on transfusions, and if feasible, providing leukodepleted blood matched for antigens of the ABO-D and Kell systems. Recruitment of Asian blood bank donors, just like recruitment of black donors for SCD patients, can increase the availability of compatible blood for thalassemia patients, who have a life-long transfusion-dependent disease.

An important note from this discussion is that splenectomy may actually make the autoantibody problem more likely and worse.

Although your son's transfusion requirements increased, they are not in any way, out of control. I agree that this will probably pass with prednisone use and that a temporary higher dose may clear it up. I think it would be preferable to knock it out with a high dose and eventually withdraw the prednisone, than continue long term use of prednisone. There is a very high percentage of this reaction going into remission in patients using prednisone. If there is a later recurrence, prednisone therapy is resumed. A very positive note is the lack of any visible effects on your son's health. He looks really good in the pics.  :happyyes
Title: Re: can someone help me out?
Post by: Sharmin on March 18, 2008, 04:28:18 AM
Wow Andy,
thank you so much - I am absolutely blown away by all of your research.  You are so resourceful! 

I have learned more from your message than I have been able to learn over the past two years!  This knowledge has the potential to change our approach to his treatment - once we discuss it with his doctor.  His doctor is absolutely wonderful, once he learns all of this I am sure he will be happy to take this approach. 
 :thankyou

Sharmin

Title: Re: can someone help me out?
Post by: Andy Battaglia on March 18, 2008, 05:17:21 AM
Sharmin,

This has been a real challenge and as you can see from the discussion, far more work needs to be done to study patients and these immune system responses. Dr Vichinsky has been at the forefront of putting this knowledge into practice with more specific blood matching and I wasn't surprised to see his name on this article. The doctors on the west coast have seen more of the new generation of Asian thals and are making every attempt to deal with the new problems that arise in treatment and awareness. I would suggest a consultation with Dr Vichinsky at some point, if at all possible.

Title: Re: can someone help me out?
Post by: Zaini on March 18, 2008, 12:13:01 PM
Hi Sharmin,

I hope everything will become smooth and easy for you and your son,give my love to little mr handsome  :biggrin

ZAINI.
Title: Re: can someone help me out?
Post by: Manal on March 18, 2008, 12:19:08 PM
Andy

I thought that the benefits of folic acid is only restricted to the formation of the blood ( it prolongs its life span and increase the red blood cells count ) , so how is it going to have the same effect on the ''already made blood'' i.e transfused blood?
By the way Ahmad takes 5mg folic acid daily

Manal
Title: Re: can someone help me out?
Post by: Sharmin on March 18, 2008, 04:06:24 PM
Thank you Zaini, Manal and Andy  :hugfriend

I actually have good news - my son was transfused last Tuesday - and the doctor did a post transfusion hg which was 118 (because he was very low to begin with). 

He had us do another one today because he wanted to see if the large drop last week was due to the fever and illness or if it was because of the antibody going crazy again.  The blood test today revealed that his hg is 117! So his transfusion tomorrow will probably be postponed.   

Even if there was a degree of error - in the post transfusion hg or this one - there does not appear to be a lot of antibody activity going on!  I hope that things continue to go well.  Look my friends, your prayers were heard over night!  I'll keep you all posted - when we we check again next week. 

Sharmin
Title: Re: can someone help me out?
Post by: Andy Battaglia on March 18, 2008, 04:12:00 PM
Sharmin,

That is a big relief! If his Hb has maintained at the same level for a week after transfusion, slowing down the transfusion rate may not be needed. The effect of slowing the blood is to decrease the immediate breakdown of RBC's that can occur on autoimmune hemolytic anemia. This also has me thinking that his drop in Hb may not be related to the AIHA and more likely just a result of illness.
Title: Re: can someone help me out?
Post by: Sharmin on March 19, 2008, 12:36:30 AM
Thank you Andy,  it has been a great relief.  We will be testing his hg on Sunday and transfusing him on Monday.  I am glad that things are going well so far.  He does tend to drop rather quickly nearing the end of his 3 weeks - I am wondering whether it may be a good idea to spit his transfusion up so that he receives a unit every two weeks - using a slower rate - rather than getting the entire amount every 3 weeks.  It may maintain him better and he may be getting less blood over time. 
Title: Re: can someone help me out?
Post by: Andy Battaglia on March 19, 2008, 01:58:19 AM
Hi Manal,

The answer about folic acid is in the same article at http://www.emedicine.com/med/topic979.htm

Quote
Administer folic acid because active hemolysis may consume folate and cause megaloblastosis (abnormally large nucleated red blood cells).

Almost all thal majors are deficient in folate because the excessive hemolysis needs more than is being supplied. This increases with the hemolysis, and increases the need for folic acid. One other thing I want to note is that I keeping seeing mention of masked vitamin B-12 deficiency in thals. B complex should really be considered to help counter the daily physical stresses of thalassemia.

Sharmin,

I have always wondered about this issue since some thals transfuse monthly and others twice monthly. Since the transfused blood begins to break down so quickly, it does seem that twice monthly would be more efficient and patients wouldn't tire so much when it's close to their transfusion date. Talk to your doctor and see what he says. I think one reason some take blood only once monthly is for time considerations; accommodating school or work schedules, etc.
Title: Re: can someone help me out?
Post by: Sharmin on March 19, 2008, 03:29:42 AM
Andy,

you are right, it would be easier on thals to transfuse twice a month.  I wonder if it is to avoid exposing the patient to fewer donors over time - 12 a year rather than 24. 

I know of some thals who transfuse biweekly - because it fits in with their work schedules better than taking a day off of work each month.  I think I may prefer this for my son - it should work especially well in his situation. 

Sharmin
Title: Re: can someone help me out?
Post by: InGreece on March 20, 2008, 12:20:34 AM
I'm jumping in a bit confused here sharmin:
First of all great news about you son! I know the feeling of having some good news under such circumstances

Sophia also has hemolytic anemia on top of thalassemia -it surfaced after 6months of  transfusions.
However the treatment selected has been different.

After spending about a month of being transfused every 3 to 6 days (her Hb was falling THAT rapidly)
-during which time the labs tried unsuccesfuly to identify  the specific caused that brought on the onset-
Sophia was placed on cortisone therapy in order to supress her immune responce.

After about another month this had results.

8 months later and after gradual reduction she is still on a very small dosage on a daily base. (about 1mg a day. smaller doses provoke an immune system reaction) and is transfused every 14-16 days now.

I have to say I have strong mixed feelings about cortisone.

WHile the type of cortisone (prednisolone family) is similar to the one used in relatively stable long term usages (e.g. asthma sufferers) having our 2 1/2 year old daughter on chronic cortisone is so unsettling to us that I'll can tell you it's probably forcing our hand in working towards a BMT solution.

In your case you seemed to be able to avoid the cortisone. How did you do so?

I'm probably missing something glaringly obvious here and I'd be glad if anyone pointed it out.

Thanks and God Bless.
Title: Re: can someone help me out?
Post by: InGreece on March 20, 2008, 01:03:48 AM
DUh!
As Bart (Simpson) said.

Just found the obvious myself....

I only now realised that you wrote in your initial post that your son is on prednisone which I assume is alsmot identical to our daugter's medication
Cortisone more or less equals prednisone

Looks like we are on the same boat and have the same concerns about if this is chronic...

God Bless

:-)

Title: Re: can someone help me out?
Post by: Sharmin on March 20, 2008, 01:46:01 AM
Hi InGreece,

Yes, my son is on prednisone - he began prednisone at 8 years of age.  The antibody was first detected when he was 7 1/2 years - he was requiring transfusion every two weeks - and his hemoglobin was dropping more each time.  The lab identified a warm autoantibody.  He was started on a high dose of prednisone 40mg a day for 4 days - and then slowly maintained at 10mg alternate days.   I am also uncomfortable with having him on a steroid on a regular basis - on top having thalassemia and being on desferal.   

I am not thinking about BMT at this time because transplant should not be taken lightly, especially with a child like mine who is doing very well on the whole, so far.  And he shows heightened immune response - with various antibodies both allogenic and auto - it suggests to me that he would be more likely to have issues with BMT.  I am hoping that one of the technologies being investigated - although they may be far away for now - will be the solution for us.  In the meantime I am trying to do everything I can to give him the best care.  I think that our children are doing well despite thalassemia and antibodies - as they are being well managed.   

Best of luck to your little girl.  I hope that the antibody burns itself out and you have a lot less to worry about:) 

Shamin
Title: Re: can someone help me out?
Post by: Sharmin on April 06, 2008, 06:43:48 PM
I started my son on 1mg of folic acid, 100 IU of vitamin E as well as calcium magnesium this week. 
I will wait a few weeks before starting the wheat grass extract, as it may be too many changes at once. 
I am hoping this will help with his growing pains too. 

He is complaining of tummy aches - could this be his stomach getting used to all of the supplements? 

Sharmin
Title: Re: can someone help me out?
Post by: Zaini on April 07, 2008, 11:55:32 AM
Zainab also complains of tummy ache often,and i,ve noticed that these complains have increased after last transfusion as compared to before transfusion,Don't know what's the reason though  :dunno.

ZAINI.
Title: Re: can someone help me out?
Post by: Sharmin on April 09, 2008, 03:45:15 AM
Yes, the tummy symptom is a difficult one to figure out. 

My son has been complaining about headache and dizziness for over a week, as well as tummy ache.  His hg has fallen to 83 in 2 1/2 weeks - suggesting that the antibody is acting up again.

Andy, I will talk to his doctor tomorrow regarding the slow rate transfusion - every two weeks.  Anything to make things better.  I fall apart whenever he is not feeling well - i don't know where to draw strength from right now.  I am so afraid of his hg falling so rapidly and these awful symptoms he is having.  He says that his ears feel partially blocked too.  There is no evidence of cold or flu, i don't know what is going on.  It's been a very difficult day for us. 
Title: Re: can someone help me out?
Post by: Andy Battaglia on April 09, 2008, 06:19:09 AM
Hi Sharmin,

The symptoms may be related to the autoantibody activity. Talk to the doctor and explain the symptoms your son is having. I won't be surprised if the doctor decides to temporarily raise the prednisone dose. I understand your concerns about prednisone, and shared the same when my son was afflicted with severe asthma when he was young, but now I see a 15 year old kid playing varsity baseball in high school, who wouldn't be alive today without prednisone. My perspective changed from dreading prednisone to thanking God that it was there for him. I do hope prednisone won't be a long term treatment.

It's never easy being parents.  :hugfriend
Title: Re: can someone help me out?
Post by: Manal on April 09, 2008, 12:26:24 PM
Sharmin, i really know how you feel, i will keep praying for you and your son and i am sure everything will be just fine. Good luck at your visit and please keep us updated
 :empathy
 Manal
Title: Re: can someone help me out?
Post by: Zaini on April 09, 2008, 07:00:04 PM
Same here Sharmin, :sigh

it's 11 P.M here,and Zainab just came to me complaining of tummy ache,she was asleep at 10 P.M,i don't know what kind of stomach ache is this and what should i do about it ??  :dunno

Another thing,Zainab is also complaining of pain in her ankles since last couple of days,i don't get it when she says "Mama i hear a click and then it starts paining"what could that be?

Could that be realated to desferal anyway?or ferriprox?or calcium? although she is taking calcium and vitamin D daily.

I feel so helpless!!

ZAINI.
Title: Re: can someone help me out?
Post by: §ãJ¡Ð ساجد on April 10, 2008, 05:35:20 AM
Sharmin, Zaini,

I pray Almighty God that your angels feel well soon.

:empathy
Title: Re: can someone help me out?
Post by: Zaini on April 10, 2008, 11:37:53 AM
Thanks Sajid  :hugfriend

ZAINI.
Title: Re: can someone help me out?
Post by: Manal on April 10, 2008, 12:45:36 PM
Zaini, i am sorry to hear this, but what is your plan , are you going to the hema or what?? Since you transfuse the washed blood why is this happeneing? Please update us and give her a big hug for me :hugfriend :hugfriend

Manal
Title: Re: can someone help me out?
Post by: Sharmin on April 10, 2008, 02:43:20 PM
Manal, Sajid, Andy and Zaini,

I cannot thank you enough for your support. 

Zaini, I hope your little one feels better very soon.  It is so hard to watch your children suffer.

Andy,

The doctor did increase the prednisone dose - he wants to hit him hard with it for a while - 7 days of 40mg and then taper it down slowly.  He also agree to give him smaller transfusions at a slow rate more frequently (every 2 weeks).  His random blood glucose level was also normal. 

The doctor said that he could not see anything wrong with him and told me that he is a very healthy little boy, despite his thalassemia. 

My son however continues to complain about dizziness, aches and pains (which the doctor said were growing pains and very common and normal), yesterday he said that he felt that he would faint.  He woke up this morning saying that he was too shaky to walk or go to school.   I am overwhelmed and don't know what to do -  I am so afraid. 
Title: Re: can someone help me out?
Post by: Andy Battaglia on April 10, 2008, 03:16:20 PM
Hi Sharmin,

The symptoms your son is experiencing are very possibly related to the autoantibody.

http://www.labtestsonline.org/understanding/analytes/autoantibodies/glance.html

Quote
symptoms they cause are relatively common and may include: arthritis-type joint pain, fatigue, fever, rashes, cold or allergy-type symptoms, weight loss, and muscular weakness. Additional complications may include vasculitis (inflammation of blood vessels) and anemia. Signs and symptoms will vary from person to person. They can vary over time and/or with organ involvement, often tapering off and then flaring up unexpectedly.

If these symptoms are related to the autoantibody, the increased prednisone dose should have some effect on alleviating them. Please take some confidence from the doctor telling you he sees a healthy little boy. I would compare the symptoms to those of pollen allergies, where even though a person may be miserable from the effects of the allergy, and seem very ill, it is actually a temporary condition that does not really threaten the health.

Being a parent, I know how hard it is to be patient and am going through an uncertain period myself at the moment, as we await a second blood test for my daughter who has an unexplained rise in white cells accompanied by constant fatigue. It could be just a combination of a recent bad cold along with her tough schedule of university and work, but it also could indicate something far more serious. Because of the cold, it makes no sense to test again until it has been out of her system for a bit, but waiting for an answer is difficult, to say the least.
Title: Re: can someone help me out?
Post by: Zaini on April 10, 2008, 03:21:56 PM
But Sharmin didn't doctor tell the reason for his dizziness?that's odd,what can be the reason,how's the weather there? is he taking enough water,may be he is not hydrated enough.Can't you start wheat grass juice right now? may be it will help him regain his energy.I hope everything will be back to normal soon . :hugfriend :hugfriend

Thanx Manal,

No i am not planning to go to her hemo,coz she is so arrogant that she'll take no notice,instead i have started to give her herbal water (a strong form of gripe water,if u,ve heard of gripe water),and she has stopped complaining,till now,may be it was only gastric  :dunno

ZAINI.
Title: Re: can someone help me out?
Post by: Zaini on April 10, 2008, 03:26:50 PM
I hope everything will be ok with your daughter Andy, :goodluck

ZAINI.
Title: Re: can someone help me out?
Post by: Sharmin on April 10, 2008, 05:16:47 PM
Andy,

I hope that your daughter's blood test results are reflecting the recent cold she experienced.  I hope that everything is okay - please keep us posted on her condition Andy. 

Zaini, I am glad that the gripe water seems to have eased Zainab's stomach aches.  Our doctor has told us that stomach aches are one of the most common complaints in children - and can occur often as children grow.  He said that they are rarely a cause for concern - especially when the child points the belly button when asked where the ache is. 

The doctor felt that the dizziness last week may have been due to the sudden drop in hg- whereas usually his hg drops gradually - the antibody caused a sudden drop this time.  My concern has been the continued dizziness and shakiness after the nice gradual transfusion yesterday and the higher dose of prednisone he began yesterday.  I wonder if the sensation of blocked ears and dizziness are related.  Could he have an inner ear viral infection?  (When the doctors checked his ears they appeared clear). 

The pains always affect a diffent part of the body -  feet, shins, arms, back, hands, ankles.  When the doctors checked him they both felt that in the absence of swelling, the short duration of the pain - which is always changing to a different location, and no pain when limbs are touched - they don't think that it is serious. 

In the past few days two doctors have checked him head to toe, telling me that he looks extremely healthy.  The first doctor, who did not know about his thalassemia before I told him, swore that he would not know that this child has any type if illness if I did not tell him.  I was happy to hear this.    I do however have this boy sitting next to me telling me that he feels weak, dizzy, shaky and at the moment his feet hurt.  He has not been in school for 3 days - and he loves school - he is currently missing a field trip which he has looked forward to for a long time - I know that he must feel terrible when he said that he did not feel strong enough to go and remarked how disappointed he was.    I hope that things get better soon.

I hope also that Zainab and Andy's daughter feel better soon too. 

Sharmin




Title: Re: can someone help me out?
Post by: Manal on April 10, 2008, 10:56:31 PM
Andy, my prayers are with you and please keep us updated. hope i can help in anything. Good luck my friend :hugfriend
manal
Title: Re: can someone help me out?
Post by: Sharmin on April 11, 2008, 02:55:03 AM
Hello friends,

I decided to take my son to the chiropractor today -  it seemed that he had a sprain in his neck causing the dizziness and 'blocked' feeling in the ears.  The chiropractor agreed that the pains were growing pains - and he gave me some massage techniques to alleviate the pains.  He gently helped with the neck sprain - and voila - my son said that his head, neck and ears feel better.  He has been playing, climbing and misbehaving since the chiropractor visit - things he has not done in weeks!!  I am so happy to have my son back!  :happydance

I guess the sprain was related to him reading a big heavy Harry Potter book with his head leaned forward - he read 2 books within a few days.  I hope that he will continue to feel well  :goodluck  I have been so scared seeing him laying on the sofa crying and afraid to move because he was too dizzy - afraid that he would faint.   :quiver
Going to the doctor was becoming useless  :banghead  And i was beginning to lose it  :hissyfit :hissyfit

Zaini - how's our little Zainab?  Andy thanks for your constant help and support - I am praying for your daughter. 
Manal - you are a always there to support us - I hope that your little darling Ahmad is doing well. 

Thanks you everyone for helping me get through this horrible, agonizing week.  I love you all!!
 :ty :ty :ty :ty :ty :ty :ty :ty :ty :ty :ty

Title: Re: can someone help me out?
Post by: §ãJ¡Ð ساجد on April 11, 2008, 06:07:48 AM
Our prayers are with you Andy

:pray

Wish you all the best for your daughter.
Title: Re: can someone help me out?
Post by: Zaini on April 11, 2008, 11:52:36 AM
That's great Sharmin,

I am so happy that it worked for maani,how did u get that idea to go to a chiropractor in the first place?Any ways congrats  :hugfriend

Zainab is much better,thanks,give my love to Ahmed, Manal  :hugfriend

ZAINI.
Title: Re: can someone help me out?
Post by: Manal on April 11, 2008, 12:43:46 PM
Sharmin, Zaini,.... i am sooooooooooo happy your angles feel  much better now.   Thanks to God.

Sharmin, your idea of a chiropractioner is brilliant, i myself had severe pain in my neck and shoulders all my life and with two sessions of rolfing everything is super now and i have no pains any more

Good luck my friends :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend

Manal
Title: Re: can someone help me out?
Post by: Andy Battaglia on April 12, 2008, 06:30:13 PM
Hi Sharmin,

That's great news! Was he sore at all the next day after being adjusted?

I guess we need to remember that not everything that happens to a child with thal, is related to thal.
Title: Re: can someone help me out?
Post by: Sharmin on April 13, 2008, 11:55:53 PM
Thanks Andy, I am glad to see the improvement as well.  He has been riding his bike, playing in the park and doing all of his normal activities again.  The chiropractor said that he would like to see him once more to see how things are settling - but he assured me that kids recover very quickly, as I have seen. 

I am surprised that a neck sprain caused my son to feel so miserable - dizzy, nauseated, etc.  I had to put him in a wheel chair to bring him home after his blood test on Tuesday - which devastated me - because he is such an athletic and energetic child.  I am glad things are well now. 

How is your daughter Andy?  I hope things are going well for her.  Your family is in my thoughts and prayers.   :pray
You are right, being a parent, while being rewarding can also be very anxiety provoking.  Please keep us posted. 

Sharmin
Title: Re: can someone help me out?
Post by: Andy Battaglia on April 14, 2008, 12:18:12 AM
My daughter's doctor has decided to delay re-testing her white cell count until her physical in May, so that her system will not be showing any more effects of the cold she had. She seems to be doing ok although she is still tired, but lack of sleep and a typical student diet, probably are factors in that. We are hoping for the best. It does make me very nervous, as I have some prior experience counseling someone that I met through a member of this group, who had the same symptoms and was found to have leukemia. Treatment did work and and the woman has been well for some time now and calls me her brother.  :smiley Thanks Ayesha, for introducing us.

We do hope it isn't anything this serious. My daughter just landed a nursing internship at a hospital in Buffalo for the summer and is quite excited.
Title: Re: can someone help me out?
Post by: Manal on April 14, 2008, 12:28:36 AM
Andy, i hope everything will be just fine. you and your family are always in my prayers :hugfriend

Manal
Title: Re: can someone help me out?
Post by: Zaini on April 15, 2008, 07:24:10 PM
BEST WISHES FOR YOUR DAUGHTER ANDY!

                                  (http://i297.photobucket.com/albums/mm220/ZAINY_2008/bestwishes.jpg)

ZAINI.
Title: Re: can someone help me out?
Post by: Danielle on April 15, 2008, 07:37:02 PM
My daughter just landed a nursing internship at a hospital in Buffalo for the summer and is quite excited.

That's awesome, Andy.  :biggrin  Please keep us updated on her health.  :hugfriend