New Thal. Minor Diagnosis

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

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.

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.

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!

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 .
• 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!

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

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

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!

Take care, Peace!

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

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!

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?

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.

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??

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

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