Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Manal on February 09, 2009, 01:51:16 AM
-
Hi
Today and tomorrow i am doing the annual check up for my son. The results for the liver and kidney functions in addition to the thyroid gland came all normal. Also the serum calcium, zinc are normal. His ferritin is 62. I also did a random blood glucose and came back normal.
On Tuesday i will recieve the report for the abdominal and pelvic ultra sound and the report for the echo
I have some questions:
1- Serum phosphrous is 6.4mg/dl the range is (2.5 - 5 ), so being more than the normal, can cause any problem???
2- His serum uric acid is 6.6 mg/dl and the range is (3.4 - 7.2 ) so should i consider him high normal ????
3- One important thing, i really need to know an answer for... usually hematocrit is directly propotional with the hb. I find in my son's CBC a differnt result this month.
Usually when his Hb in the range of 6 to 6.5, the hematocrit is 16% to 17%. Last month his HB was 7.1 and the hematocrit rised to 18.6% and MCV was 53.
Today and after one month (by the way he had a viral infection in the mid of January but with no fever at all..all symptoms where severe back charge that made him cough for a couple of days), his Hb is 6.1 and the hematocrit increased to 19.3% and the MCV increased to 55. Isn't that strange, shouldn't they both go down with the HB!!!!!!!!!!!!!!!!!!!
Andy do you think that a decrease of one gram could only be due to the viral infection though without fever or this could suggest increased activity of the spleen?? Please advice
On Wednesday, i will visit both the hematologist and the endocrinologist after receivng the other reports.
manal
-
Manal,
I am glad that his results have come back good so far. I hope that the rest of the tests will be good too. I hope that his hg rises again soon.
Sharmin
-
Thanks Sharmin :hugfriend
I forgot to mention that i will too visit the dentist to check if there is any change in the jaws indicating any deformity.
I hope i didn't forget anything else
Andy
I asked about the medullary width (MW) in the midpoint of the second left metacarpal measurement but unfortunatly it is not available here :wah
http://www.ncbi.nlm.nih.gov/pubmed/3426965?dopt=Abstract
manal
-
Manal,
Good luck for your visit to hemotologist,endocrinologist and dentist,i am happy his results are normal,minor drop in hb can be due to infection,so don't worry :hugfriend.
Zaini.
-
Manal,
I hope that the rest of your appointments go well. Are the results similar to those in previous years?
Sharmin
-
Manal
GoodLuck with the remaining tests. Usually when phosphorus levels rises, calcium is lost via the urine, but as his calcium is ok so there`s nothing to worry about. Hassan`s hematocrit changes with his hb, higher the hb higher the hematocrit, but cannot say the same for his mcv. There was a time when his hb was very low but his mcv was near to normal.
take care
maha
-
Hi Manal,
1) From http://lpi.oregonstate.edu/infocenter/minerals/phosphorus/
Is high phosphorus intake detrimental to bone health?
Some investigators are concerned about the increasing amounts of phosphates in the diet which can be attributed to phosphoric acid in soft drinks and phosphate additives in a number of commercially prepared foods (5, 6). Because phosphorus is not as tightly regulated by the body as calcium, serum phosphate levels can rise slightly with a high phosphorus diet, especially after meals. High phosphate levels in the blood reduce the formation of the active form of vitamin D (calcitriol) in the kidneys, reduce blood calcium, and lead to increased PTH release by the parathyroid glands. However, high serum phosphorus levels also lead to decreased urinary calcium excretion (2). If sustained, elevated PTH levels could have an adverse effect on bone mineral content, but this effect has only been observed in humans on diets that were high in phosphorus and low in calcium. Moreover, similarly elevated PTH levels have been reported in diets that were low in calcium without being high in phosphorus (7). Recently, a controlled trial in young women found no adverse effects of a phosphorus-rich diet (3,000 mg/day) on bone-related hormones and biochemical markers of bone resorption when dietary calcium intakes were maintained at almost 2,000 mg/day (8). At present, there is no convincing evidence that the dietary phosphorus levels experienced in the U.S. adversely affect bone mineral density. However, the substitution of phosphate-containing soft drinks and snack foods for milk and other calcium rich foods does represent a serious risk to bone health (see Calcium).
As long as his calcium intake is good, the phosphorus level isn't of concern but caution is advised concerning soft drinks containing phosphates.
2) Uric acid levels can also be related to diet. Purine-rich diet — organ meat, game meat, anchovies, herring, gravy, dried beans, dried peas and other foods. Test results also vary from lab to lab. High end of normal isn't significant.
3) I do think the virus could be responsible for the lowered Hb. The MCV value is not much different and would have to be considered as no real change. Hematocrit measurement is affected by various factors. http://www.daviddarling.info/encyclopedia/H/hematocrit.html
A true baseline Hct value may be hard to measure accurately for a variety of reasons. For example, when drawing a blood sample from a subject, a stress response may cause a contraction of the spleen, resulting in a momentary increase in Hct. Hct may also vary dramatically with physical activity.
The accuracy of all these tests varies from lab to lab and even from lab tech to lab tech, so small changes are often meaningless.
-
Sharmin
I started doing these check ups since 2006 and usually they are the same except for the zinc that usually was defient but since then i check it every 3months in particular and make sure it is always in the normal range.
Maha
Thanks a lot for your information and wishes :hugfriend
Andy
Thanks a lot for the informative reply :hugfriend. Ahmad never drinks any soft drinks but i think i will have to check the phosphrous again in three months, do you agree.
As for the uric acid, you are right .The week before the CBC he ate fish a lot and i believe they are rich in urates.
manal
-
Manal
It has to be a viral infection which has brought Ahmad's hb dow. I have faced this with Prat all the time and hb sometimes have fallen by 2.5 grms.
Take care
Puja
-
Thanks Puja for reassuring me :hugfriend. Today i will update you with the other reports
manal
-
Hi
1-The Echo report came totally normal for his age and the cardio even told me that his heart is not beating that fast compared to his low Hb ( One information i knew today from the cardiologist is that, when a child has a fever, every increase in temperature by one grade increases the heart pulse 10 more beats)
2- Also the ultra sound report came normal for everything except for the typical increase of liver and spleen off course. The long axis of the spleen is 12.7 cm which is twice the normal size. Both organs are well except for the enlargement.
The GOOD NEWS is that Ahamd used to have a gravel in the gall bladder (1-2mm), but the report came that he is now totally free of any stones in the gall bladder :biggrin :biggrin :biggrin. The doctor made a long scan to try to find it but it has just disappeared. I never imagined that this could happen,but the hematologist said that these small gravels sometimes break to small pieces and are released out.
Andy, do you think taking magnesium for more than 8 months now has contributed to this????????
3- Usually Ahmad's total Bilirubin is 1.7 or 1.8 when his HB is in the 6 to 6.6 range. I have noticed that two or three months ago, the bilirubin started to increase to 2 and to 2.5. Even last month when his HB was 7.1, it didn't go down and it was also 2. This month it is 2.4 , so does this indicate over activity of the spleen and if this is the case, the HB should have decreased but it is nearly the normal Hb for him but only the bilirubin increased???????????????????????????????????
The doctor told me it may be both the spleen and also the viral infection that caused this drop in HB. She usually measures the enlargement of the spleen by a measuring tape. In the past two years the minimum and the maximum measurement for the spleen were 3cm to 5cm more than the normal size. Today and for the first time, she measured it and it was 6cm :wah :wah :wah :wah
At the end, we agreed on starting the hydrea again, so starting today Ahmad is on the hydrea again (20mg/kilo). I really hate gving him the chemo, but there is no other way as i am afraid he could get worse.
She also changed the dose of folic acid (for one month) to 5mg a day and 10 mg the other day ( i mean alternating days)
As for the growth, he is okay and he is still in the 25th percentile for weight and height
I will update you again
manal
-
Hi Manal,
When I read about the gallstone vanishing, the first thing I thought of was magnesium. People who test higher in magnesium have fewer gallstones. Our group probably has the first people testing this in thals but I do think blood cell health and the health of the spleen and gallbladder can be enhanced with magnesium supplements.
Has Ahamd's reticulocyte been up also? If it is, it could explain the higher bilirubin level.
Hopefully, the hydroxyurea will help shrink his spleen in addition to raising his Hb.
-
Thanks Andy for your reply.
Yes Ahamd's reticulocyte count is getting higher every month.Last month, it was 6.4% but this month it is 7.8%
manal
-
Manal,
I am glad that Ahmad's gall bladder stone is gone. I hope that his spleen shrinks with the hyroxyurea and that you see an an increase in his hg. I am glad that his echo report came back normal and that he is growing well. You are doing a wonderful job with him Manal.
It seems that all of our young ones are having their tests done within these few days - I hope that all of the reports come back as being encouraging and that appropriate plans will be given to us so that future reports are even better.
I hope to come back with information that is helpful to everyone here. I hope that I have enough time to have a good discussion and answers to everyone's questions.
Best,
Sharmin
-
Manal,
It's very good to know that Ahmed's echo came back normal, i hope his bilirubin will go down soon,Good luck with hydrea :hugfriend i hope it will increase his hb this time.Manal,what about that other treatment you were giving to him?
Zaini.
-
Thanks Sharmin, i wish all our kids good results too and wish you a safe trip dear, i am sure we will soon hear good news about little A. Good luck :hugfriend
Zaini
Thanks my friend :hugfriend. Actually Ahmad was only on supplements and carao. I do believe that carao is doing something because he never had his HB 7.1 (last month) on his own. I would have loved to test the effect of any treatment alone to be able to evaluate it and also would have loved to continue with the carao alone, but i was afraid,the spleen would deteriorate more so i had to start the hydrea.
Andy
But what makes the retics count increase in the first place though he is in the same range of his HB
For example his reading for the previous months:
HB 6.5 Retic count 12.6% (July 2008)
HB 6.5 Retic count 3.7% (September 2008)
HB 6.6 Retic count 9.3% (October 2008)
HB 6.2 Retic count 5.8% (December 2008)
HB 7.1 Retic count 6.4% (January 2009)
HB 6.1 Retic count 7.8% (February 2009)
Please advice
manal
-
Manal,
I was actually talking about the treatment where you bought injections or meds from Germany i believe? I am sorry i don't remember exactly what was that called,you met a doctor somewhere and i think it was after you started hydrea,and then you stopped hydrea for that treatment?I hope i am making any sense :dunno.
Zaini.
-
You are totally right Zaini
It is the biological treatment. Actually i finished the first course with no significant change in the HB, and with no side effects at all. All i can say is that during this time he was very active and growth rate was very good. It may have helped him in other ways (activity, bones, antioxidant effect, actually i don't know ... as there is no test that can tell that). I have another course left didn't decide what i will do with till now :huh
manal
-
Hi Manal
All the best with hydrea. Ahmed is growing and his body is working harder to maintain his hb. This is the reason his ret count is increasing although his hb is the same. Manal,do not wait to see the effect of one thing be it hydrea or carao or anything. Just give him anything and everything that will benefit him. Wishing that Ahmed`s hb the next time is the highest you have on record.
take care
maha
-
Hi Manal,
I hope the hydroxyurea works for him. You will be in my prayers.
:hugfriend Kathleen
-
Maha, your explaination makes a lot of sense to me and you are right. Thank you so much for making it that clear :hugfriend
Kathleen, thanks dear so much :hugfriend
manal
-
Hi Manal
May hydroxyurea help Ahmad. It is good to hear that his growth is good. May his results be even better next time.
Take care
Jade
-
Thank Jade so much for your wishes, they mean a lot.
As for our visit to the endocrinologist, She said that his growth rate is normal and constant till now. She is happy with him except for the very significant jaundice he has these days. She said that she will see him in 6 months instead of 3 months.
Talking to her about the DEXA, she didn't advice doing it at this age at all claiming that all the exact references are for adults and we will be degrading him if we did it. Unfortunatly, she told me that in a way or another the bones will be affected by time due to the chronic anemia, but she said we are doing all our best by keeping his levels (calcium, Vit D, phosphrous...) in the normal range.
I asked her about the trunk measurment (it was said in Singapore that it is very important to keep measuring the trunk in the sitting position and standing position especially those who are on desferal)
She told me that it is done here, but actually not that accurate and it is okay if i want to do it. So i will be doing it on my next visit to her in August.
As for the dentist visit, She told me that there is a mild protrusion in the upper jaw but it could be for a normal reason as he changed the lower incisors teeth but not yet the upper ones so this could be a cause for this. She will be able to confirm after he changes his teeth.
When she saw my daughter ( she is not a thal ), she told me that she has a very clear protrousion in the upper jaw. Therefore she said that i should not keep Ahmad's mild protrsuion in mind since she can not confirm at this age whether it is inherited like my daughter or due to thal or due to changing the teeth.
Anyway, she said that since she sees him twice a year for cleaning, she will be observing any changes.
The dentist told me that there are ways to adjust the the jaw back. But do you think this is advisable for a thal or useless since the cause is always there???????????????????????
As for now i finished all the checkups, but actually i don't know why i don't feel good. I am really overloaded. Hope to get rid of this feeling.
Thanks for all yor feedbacks and wishes :hugfriend
manal
-
Manal, :hugfriend
I can understand what you are feeling,be strong my dear,you are doing whatever is in your hands,and you are doing it best,fate is in Allah's hands.
Manal,I was just thinking,that have you ever considered transfusing Ahmed,if not regularly,but once or twice a year,to help his system be relieved of that much stress? I know transfused blood doesn't last that long,but i think it might help.Just an advice :hugfriend .
Zaini.
-
Dentist: I got it too. I am glad that if you dont know you dont see it. When I was a lil younger I went to the dentist from the hospital. My dentist said: we can use very painfull treatments (braces???) from China - she was not in for it. I have not done anything for it. From time to time my jaws move wrong: :shocked you hear a strange sound and have pain, but i prefer this. My new dentist did not even mention it. .. she even correct my broken teeth wrong ??? Thanks you cant see it, but I can feel it. But I am too lazy to search for a new one.
HB 6.1 Retic count 7.8%
What's retic count?
Btw it's a pretty low hgb. I hope he feels well with it.
-
Dore,
From http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/reticulocyte_count.jsp
A reticulocyte count is a blood test performed to assess the body's production of immature red blood cells (reticulocytes). A reticulocyte count is usually performed when patients are evaluated for anemia and response to its treatment. It is sometimes called a retic count.
Zaini.
-
Thanks Zaini so much for your support. :bighug Actually i thought once of this. The only thing that makes me afraid is that his body has adapted on this level and is very active very active too. I am afraid if he keeps swinging between high and low HB, this will ''exhauste'' his body. This is based on my logical understanding, not on any medical advice. Anyway, i will have to see what the hydrea will do first. Thanks Zaini
Dore
Ahmad is the same too, nothing is observed other than i sometimes see him opening his mouth for no reason and this brought the thought to check his jaws.
manal
-
Hi Manal,
For the protusion of the jaw, braces are usually applied. It takes a long time, it needs regular adjustments but it works.
How much is Ahmad's ferritin ? (i am asking this because i read this from Andy's posts).
Hopefully the hydrea will raise his hb and reduce the spleen size.
Is he back to school or on holidays?
Take care
Jade
-
Thanks Jade, he will finally be back to school on Sunday. I guess if the holidays were longer than this, he will forget everything he had learnt. As i said before, he so much believes that he has learned everything and just going is a waste of time :rotfl
Anyway, his ferritin was 62 last month
manal
-
As for now i finished all the checkups, but actually i don't know why i don't feel good. I am really overloaded. Hope to get rid of this feeling.
Manal,
I know what you mean. I am feeling the same way, we have checked everything out and so far everything looks really good but I feel very overwhelmed with information and perhaps the realization of everything that this disease entails (what all can go wrong). We did the DEXA today and the cardiac MRI - and to be honest a part of me does not want to know that results. It is too much information for me and I don't want them to tell me that there is anything wrong with my baby. The cardiac MRI in July was perfect - so I hope this will be good too. We also have an orthodontist appt next week. It is good to get information, but right now I am mentally and emotionally exhausted from worrying, this is all such a roller coaster. You are not alone, I am experiencing the same feeling my dear. This feeling usually settles in a few days.
I hope that all is well with little Ahmad, and that he will remain very healthy always. I hope that hydrea helps him - the docs here talk about it with a lot of praise. My love to the little guy :hugfriend
Sharmin
-
Thank you so much Sharmin for your support and understanding. You always talk my heart and knows how to express what i really feel and can not say in words. It is exactly what you are saying.
I hope our little A will have all his results more than excellent and i am sure that all the your stress will just vanish when hearing the good news. Waiting for you and always praying :hugfriend :hugfriend
manal
-
Hey hey guys,
What's happening here,you both are one of those moms to whom moms like me look up to,Manal my dear,i really can not imagine how well you are maintaining everything with Ahmed,he is an intermedia,never transfused but still he is doing reall well,he is growing well,almost everything is going perfect with him,it's really hard to imagine with the hb he has,so please rest be assured that you are doing your best,you want best fo him and you get what you struggle for,that's what God said,so Ahmed will be fine always inshallah,i am just sure. :hugfriend
Sharmin,
I know there is so much going on with you and Little A,But i am happy that everything is coming back to normal,believe it or not you are the luckiest person,Little A did so well although he was being hyper transfused and had to go through so many therapies like ritixumb and IVIG,he was chelating 5 nights a week,but look at him he is our ice hockey champion,i know it's hard but it's good to know,his LIC is down,his ferritin is down,i am sure his antibodies will be asleep forever.Please be happy that after all this ordeal he is a happy and very healthy child.Let me tell you he is a very brave one,please don't feel so down,i know it's overwhelming but believe me good new is just round the corner. :hugfriend
Take care both of you,And lots of kisses for both Littls As :kissy :kissy :kissy .
Zaini.
-
You know Zaini, you are totally right.I should look at the bright side of the story. Usually when we are waitng for all the test results,one is under big pressure and when everything is over,you start realising that your nerves are being consumed.But again seeing the good things gives us the motive to continue, thanks for being there and pulling me out of all this :hugfriend :hugfriend
manal
-
I agree with Zaini. The efforts of the parents show in the health of their children and you moms and dads are doing a fantastic job.
Sharmin,
Regardless of the results of the dexa scan, and I hope they are good, please don't worry. The only thing missing from little A's regimen has been high doses of vitamin D and that is easily corrected. With his activity level, I do expect decent results and I think with the addition of D to his program, that he will do even better. He is getting plenty of exercise so I do expect that his bones are in good condition. Hockey is a strenuous, demanding sport and little A excels. I do not think this could be possible if he had weak bones.
-
Zaini,
Thank you for the encouragement :hugfriend
To be honest my friend, the antibody is still present and raising concern. He received 960cc of blood last week and I can only hope that he can get through 3 or 4 weeks without needing another transfusion. We are very happy that his LIC is lower, but now that the antibody is resurfacing, we hope that we are not chasing the iron levels again. The docs are hopeful that a second round of ritux will take care of the problem, otherwise other stronger drugs are available that can suppress the immune system more. These drugs however make him more vulnerable to infections. So far, the docs want us to repeat the rituximab this summer and I hope and pray that it is easier on our family this time. I also hope that it solves the problem because I don't want to use harsher drugs on him.
The blood bank just began using the genotype matched blood in November, for this reason we are still hoping that in the long term better matched blood will prevent the antibody from being too aggressive. In recent blood tests I have noticed that the anti CD20(ritux) is still present in his blood - but the normal antibodies (IgM and IgA which the ritux suppresses are in normal ranges now) and the warm complex autoantibody is present. This coupled with the drop in hg scares me.
Because one round of ritux has made some difference, I am hoping that a second round will take care of it for good - however putting him through that is very difficult. I think that with time I will be able to accept all of this - but right now I feel so scattered and confused. I am scared about what this means for the future. It is good to see that the docs feel that he will grow up normal and healthy - so I am trying to hold on to that. I also take comfort in the fact that I have all of you to help us get through another cycle of ritux. Zaini, your message helped me realize that I have to get over this rut and get ready to make my son better - thank you for this :hugfriend :hugfriend
Andy,
I hope that you are right and that the tests tell us that little A is doing very well. I am eager to begin the mega doses of vitamin D when we get home.
I agree with Zaini. The efforts of the parents show in the health of their children and you moms and dads are doing a fantastic job.
This was mentioned by many docs and techs at the hospital - they feel that strict compliance with the desferal and exjade reduced the iron inspite of the high transfusion requirement. They felt that, considering transfusion volume little A had better results than most others in 6 months. They feel that it is because of compliance. We did not miss a single day of chelation in 6 months, when he received extra blood we would put desferal on 7X rather than 5X a week. Apparently, this type of compliance is rare. Also, they were surprised to see all of the supplements.
These are attributes that may be rare in the general patient population - but not amongst our members. This is something that we can all be proud of. We are all very compliant with chelation and knowledgeable about supplements. We are making good decisions for our children and for this reason our children should do very well.
I am grateful that we are doing better than we were last year - his LIC is much lower, we are seeing the best docs in the world and we have plans to keep things under control in the future. What upsets me is also that when I begin to feel safe something else happens. In September/October is hg was lasting forever and I felt a sense of relief - and the next month it began to drop faster. This makes me reluctant to breath a sigh of relief. I guess I have to realize that it is not my reaction or sense of relief that is causing things to go wrong....
I pray that both of our little As and our little Z are cured very soon, along with all of our other members,
Sharmin
-
Sharmin,
Non-compliance with chelation is probably the biggest problem facing thalassemics. You take your chelation routine as a given and don't even think about not doing it, but in reality, you are in the minority. This is the single most important thing, and for me, one of the most frustrating things about being involved with thals. I think I have heard almost every excuse in the book for not chelating but the fact is, if you don't comply, you die. It seems so simple but the amount of thals that ignore it or are in denial about it, is staggering. When I first was getting involved with Lisa's group, this fact really struck me. For me, it seemed so simple. If you don't comply, you die, so why wouldn't people comply. One of my first posts was an interview I did with Shilpa about chelation compliance. It was a real eye opener and it gave me some good insight into the minds of people who choose death over thal. This is far more common in some populations where either treatment is too costly and low quality and in cultures where thals are not accepted by the general public. One blessing about thal in America is that most people have no idea what it is so no stigma was ever developed here concerning thal. Finally something positive about lack of awareness. My trip to Maldives was all about compliance and we did have a positive effect there but it faded as time has passed and I am very sad that most adult males there chelate little if at all. I wish I was in a position to go there for a few months to work with the kids, but I still haven't won the lottery so that's still on hold. But even in the west with well cared for patients, we see many who slack and get themselves in trouble. Compliance with their treatment programs should be instilled in children from an early age. It has to be a no excuses approach and it has to be constant.
We talk about compliance in terms of chelation but we should also think of it in terms of all aspects of treatment. Compliance with a good diet and a sound program of supplements can lead to much healthier patients who protect themselves from the effects of iron with antioxidants and provide their bodies with the nutrients essential to the highly stressed body of a thal. Again, I have been amazed to hear people complain about taking a handful of supplements. I don't even think about it when I take vitamins etc but many patients make excuses. Come on now. It has to be worth it. Do you really choose bad health because taking some vitamins and minerals is so hard? I find it very frustrating, as does 50 year old Chris who hates to hear thals make excuses about compliance. This group is doing a lot to encourage compliance and many members have taken it to heart. The mutual support makes everything a little easier and the information we provide is really priceless for those who pay attention. I hope all members can embrace the importance of chelation and compliance and help not only themselves, but others also.
-
Andy,
I agree with each and every word of yours,thalassemia can be made easier with compliance,compliance with chelation to avoid iron overload,compliance with supplements to be in better health and compliance with transfusions by maintaining pre transfusing hb above 9 so that your child grows normally and with out any extra stress on his/her body.
Manal,
You are welcome dear,i'll always be there for you,because i know you'll do the same for me :hugfriend.
Sharmin, :hugfriend
I can understand what you are going through,this antibody buisness is getting a bit nasty,i hope the second round of ritux will take care of it,I am praying for you and Little A,please be strong,as a mom i can understand what it feels like to put your baby through all this ordeal,but you are in best hands,and my prayers are with you,i am sure God will help you make a way out of it. :hugfriend
What happened and what's happening in Little A's situation is saddening and scary,i really sometimes have to shake that fear off my head,other wise i couldn't sleep,on my last visit,when i asked her hemo about genotyping,she said it's expensive for lab to do extended matching every time so it's not possible,yes if some one starts having any reaction we do the extended matching for them,i was shocked ,why wait for reactions to get started,what if the situation gets out of control once it starts.I didn't know what to say. :dunno
Zaini.
-
Well said Andy :clap
Sharmin :bighug
I am just reassuring that we all back and support you and i am sure that the second round of ritux will be much easier.
.....anti CD20(ritux) is still present in his blood - but the normal antibodies (IgM and IgA which the ritux suppresses are in normal ranges now) and the warm complex autoantibody is present
One more thing i want to point to, from my expierence with my mum as having an autoimuune disease too (rhumatoid). She was suffering from rhumatoid with all its symptoms for 30 years, but last year she received the biological treatment (it is hard to explain how it works ) and the result now that she is free of all symptoms of rhumatoid and free of immunosuppresent medecine (methotrexate) which she has been on for 5 years.
But with all this, she has her her rhumatoid factor higher than the normal range. It has decreased than before but it is still higher than the normal range.
My point is that in auto immune diseases, the antibodies don't completly vanish, but the important thing is that they don't cause any symptoms.
I am sorry if i cause any confusion but what i want to say, does the antibodies that are still in the system endanger little A to hemolysis again or they are in the acceptable range???
manal
-
Best Of Luck Sharmin sis , he is always in my prayers , i hope and pray that his all the reports are super fine and show's the good trends , sorry but i didn't understand wat's on in this thread bcoze concentrate on ... Best wishes and best regards for Lil-A , i wish better than the best of the health for him ....
Always Praying
Best regards
Take Care
Umair
-
Andy, Zaini, Manal and Umair,
Thank you kindly for your support. Luckily, his antibodies have always been in very low titers, and now they are even lower. The presence of the anti CD20 is still interfering. We are hopeful that the genotype matched blood in the long run will settle the situation. He will be reassessed in June or July to see if further treatment is required. Let's hope for the best. I will know the rest of his results in about 2 weeks - so far the docs were very impressed with his health and the drop in his iron levels. Before all of this, his iron levels were 900, I hope to get down there again - maybe even lower.
Thank you so very much for your support, it means everything to me.
Love,
Sharmin
-
Sharmin,
The way you are compliant with the chelation,i am sure he'll be soon below 1000,good luck for rest of the results :goodluck .
Zaini.
-
Very well said, Andy. Indeed.
However,being a thal makes me understand non-compliance a little easier than non-thals.
Even I, being a fan of compliance as I am,sometimes find myself a little tired of needles and things.
This is a point where every thal reacts according to his/her values.
For me it has been 30 years of dealing with needles and pumps and one has the right to get bored and tired at times. It is there,in this turning point, that you have to find the strength to carry on.Because if you do not, you committ suicide and betray yourself,your dreams,your wishes.
Yes, compliance is the only solution.
Lena.
-
@ Andy & Lena
:agree as well ,
@ Sharmin ,
eagerly waiting to hear that his S.Fe dropped and comes below 1000 , and i know that, i will hear this realy soon , bcoze you are very much compliant with chelation with Lil-A , and Lil-A blessed has with a realy caring mom ... soo dont worry , as Lil-A is improving and impressing doctors i wish and pray that he will continue doing this all ....
Best Regards
Take Care
Umair
-
You might not know it, but thank you for your explanation about this nasty problem. I do understand it better nwo.
I think we all may know it. All this hospital visits gives us a lot of stress. Six years long we had only here my grandmother as family. She was the one who cooked for us at friday eve when my parents and I did falll more dead than alive at her couch. My grandmother died 2 years ago and since then we are only with the three (plus cat) of us. I dont know of you meant that, but it is sometimes very hard to care about everything in your life: family, hospital, house and work (maybe friends too). At the moment I am a bit out of the balance, but my mother has a week holidays at the moment so we wont sunk during this two hard weeks (4 hospital visit; 2 wednesday mornings alone, 2 fridays with one of my parents).
Take care Dore
p.s. are you still in Cal? (i dunno how you spell it at the moment :shy )