Thalassemia Patients and Friends
Discussion Forums => Thalassemia Minor => Topic started by: Debbie on February 05, 2007, 09:25:56 PM
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Hello: My name is Debbie. My 3 year old daughter has just been diagnoses with Thal. Minor. Our small town does not know much about this disorder, so we are waiting to be referred to the Univ. of Mich. Children's Hospital. In the mean time, I feel as though I am wading through a bunch of unknowns. My head seems to be scattered with various questions. I will post a few of them for anyone interested in replying.
#1: Should I be regularily checking her blood levels? If so, how often? What tests?
#2: Should I be reviewing her diet? Any particular foods that should be omitted/added to her diet?
#3: Can she jump from a Minor to an Intermediate when sick?
#4: How does menstration and child birth affect this some day?
#5: Does this impact her immune system? We have been having chronic sinus infections.
I think that is enough questions for now. I just need to understand how to monitor her, especially since our local small town doctors don't seem to be up on this topic.
Thanks!
Debbie
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Welcome to the site Debbie.
Thal Minor is syptomatic condition only, Your daughter is carrying a Thal Gene. A thal minor patient blood levels are enough to sustain normal growth and they don't need blood transfusion. Infact they don't need treatment.
A thal minor cannot be a intermediate (even when sick), It will not effect your child health with menstration and child birth. It will not impact her immune system, and sinus infection she has nothing to do with Thal Minor.
She can continue to grow normal, though sometimes you may see her tired or pale in color. Her energy level may be (not necessarily) a little less than normal. No restriction on diet is recommended for Thal minor.
Its good you can check her blood level (peace of mind) to see her progress. You can see her CBC and Hemoglobin levels.
One thing you may do is (with the advice of doctor) give her folic tablets. This helps in production of hemoglobin.
One thing to take a note of is when she will marry (make sure her partner is not carrying a thal gene) this may increase the risk of having a thal major child by 25%.
Hope this helps.
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Hi Debbie.
Welcome to this site and hope you enjoy the company and some postings help you in dertermining how to take care of your child with thal minor
I am going to tell you my experiences as a person suffering with that condition .
Bearing in mind that I was born in 1954.when thal disorder was practically unknown .
As a child I was aneamic and at the age of 6/7yrs I nearly died of severe pernecious aneamia ,the doctor told my mother I would not live a long life then. If I stayed where I was born I believe that it would have been the case,
I had lots of fainting spell and I was very thin all during my childhood.
I had a late puberty .had my first period when I was 14yrs old and didnot have another period way pass six months,It cause a bit of worries for my mother she was wondering what was the problem with me.I then was given ferrous gluconate and some other homebrew,which helped.
I got married at 19yrs of age and fell pregnant twice while taking contraceptives and I was told by the doctor that I'm one of few woman that cannt protect my self because contraceptive doesnt work with my biological make up.I have four sons, but three pregnancy with 1set of twins
At 38yrs old I nearly bled to death while I was on duty I was taken to theatre and had a hysterectomy this was done after a long period of having heavy period and fybroids in the uturus ,yes a set of seven fybroids.
Now I'm having lots of problem with my health, especially with my cardiovascular.High blood pressure and I also have metabolic syndrome ,diabetic. my liver is enlarged ,high cholestrol.
I'm getting the flu quiet often more than usual,and pain crises every now and then.
And I get so disturbe when I read that thal minor doesnt cause problem,I feel its misleading because I am the living proof that this disoder can cause havoc in ones life,
I can only tell you about my experience and it has not been pleasant.
Having said that with all the new treatment and research life is easier for newly diagnosed Thal minor ,there are more undestanding and knowledge about the disorder,
with god diet and good care your daughter can and will have a wonderfull life.
I hope my typing make sense it's overwelming telling my story and my survival of that minor.
Good Luck.
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hi debbie....
myself and my two daughters, ages 4 and almost 2, are living with thal in a small desert town with military dr.s taking care of us.........not the best situation in my opinion. but, i just wanted to add that, while growing up i didn't have many problems with thal except for very heavy, painful menstruation. sometime to the point of getting so weak, i would pass out. while my daughters are still very young, i know that there isn't much that is needed to be done on a daily basis for them to treat the disorder, but i also just watch for signs that their blood might be a little low. loss of appitite, less desire to play, paleness, sleepiness, etc..... some day when they hit puberty, i'll know that especially during "that time of the month" they are more likely to be weak and less active. for now i just make sure they get plenty of rest and eat all their fruits and veggies...lol..like most parents :) and when my daughters are old enough to have babies, they'll just have to do what me and my husband did and get tested to make sure their husbands don't have the gene as well or anything else that could affect the disorder. hemoglobin electrophyresis tests all that stuff i think. and during pregnancy the blood levels will just have to be monitored so that if they get too low, a transfusion may be an option. when i was pregnant with my second daughter, my hemoglobin got down to almost a 6 and the dr. said, one more count lower, you'll be getting a transfusion. thank god, it went back up. my mother had 2 transfusions while pregnant with my brother and i. as far as sinus infections, i don't know if there is a real connection, but i will tell you that both of my daughters have horrible allergies and sinus problems. my youngest is getting tubes in her ears this week because of constant runny noses that become ear infections.......if there is a connection, i'm not aware of it.
oh, and because you mentioned that the dr.s in your town are not familiar with the disorder, i want to add one more note....don't let them give your child extra iron unless an iron count is done and proves low. my kids' pediatrician is the same way and isn't very educated in this area and wanted to pump my child full of iron because her hemoglobin was low. i told him that i wasn't going to give it to her until he proved her iron was low and she needed it. when he finally did the test, her iron levels came back normal. just because a thal has low hemoglobin doesn't necessarily mean low levels of iron. a child can easily overdose on iron when it's not needed. please keep that in mind throughout her childhood.
good luck with everything and be sure to do your own homework and reading and arm yourself with as much knowledge as you can because i've learned that's the best way to truly understand what's going on. i've lost a lot of trust in dr.s these days.
take care!
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And I get so disturbe when I read that thal minor doesnt cause problem,I feel its misleading because I am the living proof that this disoder can cause havoc in ones life
Ma'am I beg to differ, but this is not the case.
Diseases that come and go can happen to anyone; I agree that we Thals. are more prone to it due to our weakened physique and immune system. All we have to do is to keep ourselves in check just like everybody. It has become a thumb rule now for everyone to go for a regular checkup.
If we keep our blood counts and other physical indications as normal as possible, then I can assure you that any other disease inflicted is not due to Thal. It can be for any other possible reason or just simply it's in our fate. People get sick all the time and some don't. For example my sister is Thal. Minor and she is happily married with two sons and never required TransX, even during pregnancy. All we have to do is to keep our health in check as per following:
- Keep Iron in the normal range. Minors can suffer both High/Low Iron. My sister suffered low Iron during Pregnancy and was put on Iron supplement. On the other hand she can go high on Iron in regular days with Hb still in the lower side of the normal range. So, it really depends on the Serum Ferritin test and Hb combined to see whether Iron supplements are beneficial or not.
- Keep the Hb within normal range. It is not necessary that Hb of Minors get in the higher range of the normal zone (since Hb for minors won't go very high due to the presence of Thal. carrier gene). Some doctors will go for Iron supplements on seeing this result only, so make sure to tell them to keep the SF level in mind; as Iron supplements won't do good if SF is already too high.
- The diet should also be according to your SF. Avoid high iron diet if SF is too high; and if it's too low then there is no diet restriction :yum :food.
- As for the future, make sure that your Thal. Minor child does not get a Thal.(of any kind :) ) spouse. Since that will provide a chance for his Thal. gene to get combined with your child's Thal. gene to make a Thal. Major
If you keep these points in mind, then you don't have to worry about any other question that you have asked. Thal. minors can have a happy healthy life like anyone else if you keep your health in check. In fact this goes for everyone, even us Thal. Majors (Sure, Majors have to follow a treatment to keep the health in check, but that's a different story.)
Take care, Peace!
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Hi Sajid,
Sajid your being patronizing and
I dont particular like it.You being very rude.where I live woman has right and are entittle to their opinions
this is a free website and Have the right to share my experience ,It sound as if you are calling me a liar that I'm not and I dont particularly care of what your status might be .Please dont quote me because I was taliking about myself you dont have to read if you dont like , I feel insulting you treating me like an idiot and that I'm not.
you sound like all the stupid doctors that makes me believe that night time is daylight or visa versa,
You know what you know and i know what I know ;
Kathy
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Thank you everyone for your input. I appreciate your honesty and experiences. It has been a challenge for me to wait to see a specialists to ask these questions. Your communications have helped me to 'quiet my thoughts' and stop my unnecessary 'projections' into the future!
I do have one more question however. Is the Serum Ferritin Test the same thing as an Iron Profile test? Nina has been given the Iron Profile and the Hemoglobin Electrothesis tests. Should I make sure she is given something different in the future?
Thanks again for all of your insights!
Take Care.
Debbie
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No, no, no, no Kathy!
You got me all wrong. All I wanted to say was, that, Thal. minor is nothing to be afraid of. If you keep everything in check then you can be as normal as a normal person can be.
I didn't want Mrs. Debbie to worry that being Thal. Minor can cause havoc in her kids' life like you said.
It's O.K to have your opinion that you have concluded with your experience and you got one from me as well from my experience. Too bad they are contradicting, but it's possible for a person to person opinion. You can't call it being rude; to tell someone, something that is contradicting to you, if it is not wrong or bad.
No hard feelings on my part! :peace
Take care, Peace!
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Debbie,
I am a Thal Minor, so is my parents, brothers, sisters and my partner. We have led a normal life with some exceptions of tiredness, paleness or low energy levels (sometimes) but nothing serious. I think Thal Minor can vary in degrees, you can have some brilliant athelets like Football's Zaidan, Pat Sampress of Tennis who have thal gene and lead a good life.
Also, there is a chance that somebody is between Thal Intermediate and Thal Minor and can face difficulty in health. The best way to find out is Electrophesis test coupled with the gene mutation analysis.
Take Care
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I think people are really simplifying the diagnosis of thal minor. Technically, minor is now divided into two categories...minima and minor. With minima, there are generally no symptoms affecting quality of life. With minor, there can be a wide range of symptoms, some which greatly affect the quality of life in a negative way. It is doing a great disservice to people with real problems to tell them that eating well, etc. is all they need to do. Doctors have been saying this for years and they have been dead wrong! How can anyone who has read the posts in the minor section of our boards still believe this complete nonsense? Kathy has had real problems her entire life as have many other minors who are members of our group. We recently had a member of our group who is a minor who may have very well died during childbirth if not for the excellent medical care that she received from doctors who obviously do NOT swallow this rubbish that minor is no problem. This minor will soon have her spleen removed because of its enormous size. Does this sound like minor is a walk in the park? I am astounded that members who read these posts just don't get it. Minor can be asymptomatic. Minor can also result in the death of women during childbirth so please do not pass on this nonsense which can only endanger the lives of those who might believe it!
We have even had a one gene thal in our group who transuses regularly. If you have beta thal zero, you can have a very low Hb level and all the problems of an intermedia.
With minor, ONE SIZE DOES NOT FIT ALL. Please do not assume that because you or a relative does well with minor that it means that ALL minors can do the same. It just isn't true!
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Thanks again everyone:
I will have to keep a watchful eye on Nina. As you all know, I am just beginning this journey and have NO iDEA what to expect.
In your opinion, what is the difference in blood work numbers between a minor and a minuma?
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It is not a hard and fast rule because there are factors beyond Hb levels that are at work at times, but generally a minor will have a lower Hb level than a minima. The difference can become alarming during pregnancy. I sometimes think it is a miracle that Kathy survived her pregnancies, considering the complete lack of understanding about her condition. Kathy also has the sickle cell gene and I find it amazing that doctors do not think this is a factor in her condition.
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Okay, I guess I really need to learn how to read her lab reports.
Can you tell me what is a reticulocyte, absolute count?
Nina's is 141,000 and the normal range is 23,000-92,000.
Any idea what this means??
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Hi Andy.
Thank-you for you undestanding and I wish you have fun where ever you are;Hurry back because you do make sense. LOL
My Pregnancy was nt easy all my children came early at 36weeks, with the twins I stayed six weeks in hospital on bed rest, prior to their birth as I having a premature labour .
I firly believe that we need to speaks out as many times as we have too. I hope that some doctors will come across this forum and undestand that some of us thal minor are suffering out there .
We are individual with different Dna and we need individual care not text book care.
I hope to see you in the chat room soon ,could attend the last group was down with all kind of misery.
take care and enjoy yourself
Kathy
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HI sajid.
Ive been around long enough to know you dont meant any harm .
still you never tell a person her experinces is not the case because unless you walk in someone elses' shoes you never can tell her pain.
yes there are variation in condition and every one need individual care,
telling the fact is not scarrying another, in my undestanding is assisting the other person to have an insight and different possibility and choice.In life we all learn from one another.
I take into account that people are generally intelligent and they know what is best for them.I dont have time to habour hard feeling ,I living on borrowed time and I'm making the most of it
I care for you and wish you the best .
Kathy
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Hi there Debbie!!
First of all, the best thing in my opinion to do is...don't freak out. Like some members have said, this is not a freak out diagnosis...but a diagnosis of patient waiting and watching and waiting some more.
Like Andy said, during my pregnancies, I had alarmingly low iron, b12, and hemoglobin/hematocrit levels. They call this a severe hemolytic anemia episode, which usually happens to intermedias/majors, but can happen in minors under stress (severe illness, pregnancy, etc.) With my most recent pregnancy, my episode was so bad I was hospitalized for 10 days and recieved three transfusions. My spleen enlarged to 18 cm, which will be removed this coming monday. My son is now 11 weeks.
I am categorized as minor only because I have one defective gene from my mother. My father has another Hb gene mutation, which might explain my severe form of symptoms, however I do know of several minors with symptoms like mine. I have recently found out that my daughter Karol has been diagnosed as minima, only because she has yet to show symptoms. I hope it stays that way!
I have been told by my hematologist to take a special vitamin called Repliva that they're marketing to thals with low iron levels. It has CHELATED iron, a form that will not build up in an injurous way in your organ and bone tissues, and a LOT of B12. I FEEL WONDERFUL! I have to take tea with any meals with red meat, because of the very high levels of iron. Your daughter could also drink milk with her red meat...Your body will readily take the iron from the more easily digestible milk, and discard the red meat iron, which is really hard to break down. You might notice that your daughter has trouble breaking down red meats and heavy greens like rappini, broccoli, and spinach. My body just doesn't bother to digest these...and it makes for painful indigestion. Too bad I love them :-\
Your daughter may experience a lower immune system - I was ALWAYS sick as a child. I've always been very fatigued...And I have severe allergy to latex, which my doctor says is prevalent in thals, along with asthma. I don't know why the latex allergy comes into play, but the asthma is explained by our low oxygenization of our bodies from our fault red blood cells.
Ok, I could go on forever...And you're probably asleep by now...But if you have any more questions about my experience, ask in reply or PM me. :wink
Much Love -
Courtenay
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hi :)
asthma is common for thal patients? really? i've never heard that! i have had allergies my whole life and my daughters do as well. my oldest who is 4 has recently started showing signs of repidly progressing asthma........hmmm........maybe thal is not the main cause, but something to think about maybe????
thanks for a little tidbit of info :)
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Desertthal-
I find the Vicks Vaporizer/Humidifier from Walmart ($20) does WONDERS for my lung function. Try it! :)
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Thanks for the Info Andy, To be honest I did not knew details about Thal Minor and always assumed it was a "minima" condition. I was not reading the posts on Thal Minor section and just tried to pitch in your absence and Danielle, but I guess half knoweldge is dangerous than anything else.
Well, I guess it is not as simple as it looks like.
Regards
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Hi All,
I think sometimes intermedias are mistakenly diagnosed as minor, especially if they are heterozygous for thal. If people test out heteozygous, doctors assume that can only mean minor, but there are other factors which can be involved to make the anemia more severe. Some minors do very well, while others have many more problems.
I was diagnosed late in life as having thal minor because I was heterozygous for thal, but my anemia was more severe than the normal thal minor category. My diagnosis was eventually changed to intermediate, and I started transfusions when I was 51. It turns out that my alpha genes may be involved in making my beta thal more severe. I will get DNA testing for this in May, to find out if this is correct.
I think there are other factors which can make a thal minor more severe, such as with Kathy. The sickle cell factor may be affecting her thal status. Who knows what other conditions make anemia worse; they are just learning about these things as more research is done.
Hopefully your daughter just carries the trait, with no other complications. At least you know to keep on eye on her health, and to be aware if anything changes. DNA testing for beta and alpha gene involvement is a good idea, just to know what you are dealing with.
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Once again I hit the wrong key and sent my post before I was finished. :gaah
Kathy, I know you get so frustrated with all your medical problems - and rightly so, you have had too much to deal with and haven't had good medical care from doctors or much support in general. I feel so bad for you.
Sajid, you mean well, and are such a sweetie. We learn from each other, and we are here to support each other. I know that was your genuine intent.
We are all still learning about thal! I have learned incredible amounts from this site, and talking to all of you. That has been such a positive thing for me. Debbie, I hope reading the posts helps you become more informed, and gives you the real-life testimonial info. on living with thal. Good to have you with us. Take care everyone, Jean
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Now I am getting anxiety attacks, and my head is spinning. My son is Thal Minor and to my ignorance we never looked at him and thought to be Minima. I just digged into my papers and found his diagnosis as follows:
These tests were done two and a hafl years ago
Hb 94g/l, mcv58.9, HbA2=5.1%, HbF=3.0%, serrum ferritin=12.9ug/l
Genomic DNA was isolated from the blood sample and the B-globin gene was analysed by PCR using the amplification refractory mutation system (ARMS) and direct nucleotide sequencing.
The results are consistent with patient being heterozygous for the IVS-I-(-1) G>C beta zero-thalassemia mutation (HBB g.92G>C)
The alpha gene cluster was analyzed by Southern hybridization using probes specific for the gamma and alpha globin genes. The results are consistent with patient having the normal alpha globin gene arrangement.
An early response is appreciated.
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Hey, I didn't mean to alarm anyone! I'm not knowledgeable enough to give you any feedback except that it sounds like the alpha genes are not involved. I am just learning about all the gene stuff, so I don't know what it all means yet. I'm sure someone will know something about the information you posted. Good luck, Jean
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Desertthal,
In addition to the thal, a possible asthma cause could be your location. There are some illnesses that are found in the southwest desert that affect the lungs long wth certain rotoviruses. It may be worth checking into to make sure none of these are a factor.
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Wow!
First there was just Thal. Major and Minor. Then they later found that Alpha and Beta are also a factor of different outcome. Then they introduced Intermedia between the two.
I always believed that a Thal. minor having more troubles should be considered Intermedia as the majority of Thal. minors can go on without showing any symptoms (like my parents) or keep themselves perfect by regular checkups etc.
Now we have new classifications!!! Minima and Minor! They are closing the gap between every type.
I guess that's the reason that caused all the confusion as I really though that Kathy should have herself classified as Intermedia and not mislead Mrs. Debbie to think her kids are Intermedia instead of minors.
So, it's my bad. Sorry for the misunderstanding. :blush
Take care, Peace!
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Sajid, you mean well, and are such a sweetie. We learn from each other, and we are here to support each other. I know that was your genuine intent.
Thanks for the kind comments, Jean!
I had really misunderstood the thing and thought that Minors were not complicated like Intermedia.
Take care, Peace!
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Hi there Kathy,
reading about your experiences made me feel bad. but what really got my interest is when andy said you also have a sickle trait. my son was diagnosed with beta thal sickle cell disease. he has thal minor from me and sickle trait from his dad. he does not present as a thal patient. when these two abnormal haemoglobins combine, the disease presents itself as sickle cell, hence the pain and many problems you have experienced. i sympathise with you because to watch my 4 year old endure the pain, the tiredness, the inability to put on weight was heart wrenching.
so kathy is it worth getting another electrphoresis and asking them to give you the percentage of sickle cells you have as i know in my sons case it was the sickle cell percentage that was making his life an absolute misery.
keep me posted
vicky
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We have even had a one gene thal in our group who transuses regularly. If you have beta thal zero, you can have a very low Hb level and all the problems of an intermedia.
Andy, your quote from above, does it have anything to do with the result below:
The results are consistent with patient being heterozygous for the IVS-I-(-1) G>C beta zero-thalassemia mutation (HBB g.92G>C)
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Hi Vicky,
Nice to meet you and thank-you for your concern,I requested a DNA test and was categoricaly refused and was told it was too expensive,And since I was over fifty yrs old they cannt afford to do such test it useless it wont help me.
My gp told me that not much is known about SickleCell and in a sense she couldnot do much for me other than treat the complications e;g the cardiovacular problem and the metabolic problem.
I have already suffer from an ischemic heart failure even then they didnt make the association.
I'm on all kind of medication including aspirin daily.
My health is on the declined and I do have lots of pain at times more than other.
for the past seven years ive been visiting doctors often always with more of less the same complaint but no one seems to know or bother to find out what is wrong with me,
I am tired of hearing them telling me stories .It is sad but I'm ready to go where i will be painfree and peacefull.no regrets ive had a reasonably good life.
Again thank-you Vicky
Regards Kathy
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Hi Kathy,
I wish we could get you to a Thalassemia Center somewhere and get some good testing done. I know that in the U.S., at these centers, some of the testing is free because of research studies. Are there any centers like this in Australia that you could go to? I know you are fed up with the medical profession, and I don't blame you after how they have treated you, but I still wish you could get some answers.
Just know that we are here for you, and we support you. Love, Jean
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Hi Kathy,
It's me again. I am so intrigued with what is happening with you. wheresbouts in Australia are you?? Once Christian was diagnosed with what I'm presuming you have, doctors went all out and told us about the seriousness about it. The heart disease and all you are experiencing are the sickle cells blocking the flow of blood to your organs. Christians pain episodes were so bad that he would be put on morphine and that didn't seem to do much at times, so i can understand the exasperation you are feeling. Christian is on regular blood transfusions now.
Kathy, you're right in saying here in Australia they don't know much about sickle cell, but your thal minor and sickle cell, manifests itself as a sickle cell disease patient. Please check out some sickle cell disease forums. the people on the websites understand what you are going through. Don't get me wrong, i love this website because christian is on regular transfusions and will start chelating soon so this information is valuable, but the intense pain and feeling that your body is shutting down are all symptoms of sickle cell disease.
So where are you. In Sydney???
Thinking of you
Vicky
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Hi Kathy,
I wish we could get you to a Thalassemia Center somewhere and get some good testing done. I know that in the U.S., at these centers, some of the testing is free because of research studies. Are there any centers like this in Australia that you could go to? I know you are fed up with the medical profession, and I don't blame you after how they have treated you, but I still wish you could get some answers.
Just know that we are here for you, and we support you. Love, Jean
Jean: do you have a listing of these centers, or do you know where / how I can get a listing? I am still waiting to get an appointment for Nina with a specialist. If FEELS like it is taking FOREVER!!
Thank you
Debbie
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Debbie,
Please look under treatment centers on our board. Every comprehensive care center in the US is listed there.
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Hi Vicky.
I am so happy to hear you telling me about sickle cells. Ive done some research about sickle cells and I guessed that what is happening with my organs but Ive been trying to explain to my doctor and it has fell in death ears.They all seems to think I crazy at a point that I dont go for help anymore, even when I am in terrible pain.The other nite I was in so much pain the thought of death cross my mine .I took pain killer then slept for two days,I must have overdose myself.
Finally, I meet a person that undestand and I so glad.I will e-mail you with my details I'm in Perth far from sydney. Thank-you so much
Regards
Kathy
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Canadian Family,
As is often the case with specific genotypes there is very little useful information to be found about the effects of the mutations. Patients with homozygous IVS-I-(-1) G>C beta zero-thalassemia mutation often have a severe form of major, but it appears that the effect in heterozygous minor is very hard to predict. This genotype is often found in northern Indian and Pakistani populations. It has been documented and observed as as severe when both genes are affected but because the output of hemoglobin from the normal gene is variable, the effect on the minor patient can vary greatly. I would suspect that the low Hb in this case is directly related to this gene. However, as long as no other gene such as alpha thal is involved, it is most likely that you are already seeing the full effect of the mutation. An Hb of around 10 will cause noticeable anemia but the overall long term effect will depend on the patient's ability to deal with a lower Hb level. Diet, nutrition and exercise can play an important role in maintaining good health at Hb levels in this range. Do not underestimate the role parents can have in maintaining good health in a child with this Hb level. I would say the child is definitely a candidate for long term usage of wheatgrass in tablet or extract form. Even if there is no noticeable effect on the Hb level there may be a positive effect on overall health and energy levels.
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Hi Debbie, I'm Court's Mom. My daughter is a Minor also... however, as Andy has stated... there is much to learn, understand and digest since even the medical community is learning more every day about the plight of thal minors. If there is any ONE person to guide you through this, it is Andy. Most speak from experiences... good and bad.... but Andy ... what can I say, he is extremely educated on the topic and on target!
Court has had her share of medical problems from a young age. I do believe now that it was due to her compromised immune system, however, she was never tested for that. Back then, they just said flu, virus... whatever, but never did bloodwork on her. Even when she was 3 and almost died (I had her in the hospital 2x and mds 3x), they never tested her blood, just told me to let whatever run its course on her fraille body and keep fluids going. Finally, when a doctor wanted to test her for lukemia (no swollen glads anywhere, no sore throat, no signs of ear involvement, but she maintained high fever of 102-104, didnt eat, had to force her to drink with straw and limp, couldnt walk on her own for over 1 week), I asked if he would at least give her an antibiotic until her father returned from out of town... and low and behold... within 12 hours my daughter was 1/2 back to good health! Of course, looking back is 20/20... but you have the ability to have this knowledge NOW... which is wonderful for your little princess.
Court was a pixy as a child, extremely thin, pastey white... we couldnt wait for her to get some hips to keep her pants up! LOL However, that changed with puberty and that was another chapter... so there are stages sometimes to this... almost levels or layers???
I'm not sure how much she has disclosed, so I wont go further here, but I will say... since I know this board does know... she had her spleen removed Monday. She had returned home, only to have to return to the hospital 1 day later due to pain/exhaustion/breathing problems.... she is currently recovering slowly, but with specialists that are giving her that added attention that thal patients need... ie: blood counts monitored.
I too am just learning things about thal, even though I AM the thal minor parent. It's a bit late for me... but I am learning with all of us.
One thing is for certain, find a MD that has knowledge about thal minor and who will make sure all the "i" are dotted and "t" are crossed when caring for your little one. Findingn out early should help make the right decisions.
Take care and God Bless All of You! :hugfriend
Court's Momma... Geri
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Hi,
Wishing Courtenay a fast recovery and best of luck for the future!
:getwell :goodluck
Take care, Peace!
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I would appreciate some help. My 2 year-old daughter has been sick off and on for months. I asked for blood work back in August of '06 and it came back with abnormal cell morphology and low mcv and mchc. The doc. said it was "nothing to worry about." I asked for blood work in November because she was not getting any better and the results were the same. Come January of 2007 I asked for blood work yet again. This time the doc said "interesting results." She tested positive for the Epstein Barre virus. Here liver enzymes, biliruben, and other results were very high. And once again her mcv and mchc were low with abnormal red cell morphology. I was told not to worry because she had mono. At the beginning of Feb. I took my dtr. to a new pediatrician who reviewed all previous labs and did a new CBC. He said diagnosis Thal. Minor and iron def. anemia. He put her on iron and retested her 1 wk. later. The iron improved her blood for the iron defeciency anemia. He said two factors were present. One being iron def. anemia and the other being the thal. minor. My questions are as follow.
1. I believe I should take my dtr. to a hematologist. Is this typically done with a thal. minor?
2. I don't believe a doc can know which thal a person has just by a cbc or can he?
3. What blood work should I be asking for?
Please someone help me with these questions.
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hi vertigo...:)
i just noticed your post today...sorry it seems no one responded to you yet....how have you been??
well, in my opinion asking to see a hematologist for your daughter is important and it would definitely give you some much needed answers to all your questions. regular family dr.s sometimes aren't as up on thal as we'd like them to be.
a cbc can not tell which thal your daughter has. there are other tests that need to be done to find out. do you know if it was you or your spouse handed this gene down to your daughter? it might help to get both of you tested as well to find out if you haven't already :) family history is a big part of the type of thal your daughter has. :)
cbc tests are good to stay on top of your daughter's blood counts and to make sure she doesn't get too low. ask for an electrophoresis (sp?) as well. i'm sure other people on these boards can better answer the question as to what tests should be done. just start with the basics with a hematologist and go from there! good luck with everything!!
take care!
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Hi,,
hey dears,, this all is really very confusing,i've had thal minor all of my life,, though i was acknowledged only three years ago and i m 26 right now,,but every single doctor here told me that there is nothin g to worry about,, though i often had a low hb ,,,and in my first pragnancy,,,after delievering my baby my hb was 7.2,,,but my gyn loaded me with iron and said i was only anemic,,, and when i came to knew about my being minor ,i.e when my daughter was diagnosed with thal major,,,every doc said that being thal minor was not a problem,,,and now all of this,,, :dunno i am confused,,how am i to confirm wether i am a minima or a minor?and do i have to take any kind of extra care?though both of my pragnancies were very difficult,, i experienced pain in my whole body through out my pragnancy ,,i was always stressed,,cranky (i am really afraid of getting pragnant again :( ) and even without pragnancy i am always having a pain here and there on daily basis,,,half of my time i m tired,feeling like not having enough oxygen,,,a bit suffocating,,and i think that there is something wrong with my metabolism :sadyup because even i stop eating i am gaining weight,,and exercise won't do much good,my menstruation cycle is not normal and i am having a polycystic ovaries syndrom,,is this all due to being thal minor (or minima,,as i am not sure)believe me i was very afraid when i read about courtenay having removed her spleen,,i wish i had joined that site much earlier,,, :what anyways i think anyone of u would be able to give me some information,,,oh and yes,,,get well soon courtenay :getwell i wish u a speedy recovery,,
take care of urselves all of u
TATA,
Zaini.
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Hi Zaini,
Has your thyroid function been checked? A low thyroid can cause weight gain and sluggishness. It's a simple blood test and the results will be back in a couple days. If you haven't had yours checked, do so. Low thyroid is corrected by taking one little thyroxine pill daily.
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though i was acknowledged only three years ago and i m 26 right now,,but every single doctor here told me that there is nothin g to worry about
This needs to change and the best way is to spread Awareness. Especially, the doctors should know about Thalassemia(Minor) can create a problem when it comes to family planning. This is very important in high risk communities.
my menstruation cycle is not normal and i am having a polycystic ovaries syndrom,,is this all due to being thal minor
I do NOT think this is related to Thalassemia. Polycystic Ovaries are found in many non-thals too, but that could be one reason why you are gaining weight
Zaini --> you should talk with your siblings about them carrying the Thal(Trait) too. There are 25% change of your siblings also carrying Thal(Trait) and similar to you if they are left Undiagonised, they can be in a similar problem like you
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Hi,,
thanx for ur replies, :biggrin
Hi Zaini,
Has your thyroid function been checked?
No Andy my thyroid function has never been checked,,not a singl doctor suggested me that :noway,,though i think i'll get it checked now u hv suggested it,thanx again .
Zaini --> you should talk with your siblings about them carrying the Thal(Trait) too. There are 25% change of your siblings also carrying Thal(Trait) and similar to you if they are left Undiagonised, they can be in a similar problem like you
Yes Narendra,,i talked my siblings about them carrying the Thal(Trait),,when i came to know that i am a minor,as my sis is unmarried and my bro is married,,my sis heard me and got the test ,,she is not minor, :thumbsup,but my bro didn't listen to me,,he has two kids,,,and they are normal,,so he is not worried,,though i still suggested otherwise,,coz he is most of the time ill and complaining,,but he won't listen, :dunno,anyways i'll try to persuade him again ..Thanx for caring,, :smiley
Thanx again
LOVE TO U ALL :grouphug
ZAINI.