Slow growth in 18 month thal patient

Hi All

I have recently found that my 18 yr old son has thal (minor). I am trying to get more knowledge about this since last few days and that is how I come across this great website. I would like to thank Andy and everyone else who has spent their valuable time on this website and created a great resource for many.

Here is my story. My son was born three weeks early. He was little low in weight at birth. Perfectly healthy though. Oh I still remember how he looked first time with head full of hair and big eyes. His growth was normal upto 8 or 10 months. I mean he was around 25 percentile in weight and around 75 percentile in height. He was always that way from the beginning.
Then, he stopped growing. He has only gained 2 to 3 lbs in last 10 to 12 months. He has fallen less than 5 percentile in weight and around 25 percentile in height. He was never good eater. still we have always managed to feed him one way or other. And he is perfectly normal all other ways. Very active and healthy and all his milestones are good too.
So finally our pediatrician had us do several blood tests last month to see what is going on. She called me few days ago and told me that all tests are normal except that he is mild anemic and thal minor. She says she don't know if thal has anything to do with his growth. She is saying that there is nothing we need to do at this point of time except that she can write some iron suppliments if I want. She is saying that everything is fine and he will start gaining at some point.

I am really confused and worried for my son now. Since last few days, I have become very frustrated. After spending so much time and efforts and everything, it is very sad to see him not gaining anything. Thank god that my wife is very calm and enthusiatic person.

I need some suggestions from you guys. I have already made an appointment with Pediatric Nutrionist. I don't know if that will help any. After reading so much about Thal, I am feeling that I need to see someone who can understand this angle as well while treating my son. Should I ask my ped. to get some child suppliments. Should I make appointment with Pediatric Endocrinologist.
On the other hand, my son has no other symptom of Thal. He is never tired, sleeps well, etc. So may be his growth has nothing to do with Thal.

Thanks in advance,

Dear Patoab,

Children often grow at different stages.  Generally thal minor should not cause problems with growth - most of my family has thal minor and we haven't had any issues with growth or height.  

Iron is usually not good for thal minor unless if an iron deficiency has in fact been found - and usually iron will not increase the hemoglobin. I would focus on given your child a health diet with plenty of vegetables and whole grains to help him grow.  

If your child has thal minor that means either you or your husband also has thal minor - and if you both are healthy most likely your son will be healthy as well.  Remember, thal minor is genetic and has been passed from generation to generation and can at times go unnoticed.  My husband was not aware of his thalassemia minor until we got married - he is a very healthy individual and has participated in numerous marathons and triathlons.  

Do watch your child's growth, but remember that more growth takes place in certain years and less in others.  Our doctor often says that if a child continues to grow at the rate they were in the first year - they would become 9 foot tall in no time.   Also, sometimes when children become fussy eaters - and take in fewer calories they lose weight - and some weight gain may be necessary to trigger growth.  

Lastly, if the anemia is marked - then there may be some delay in bone age - which means the child may grow slowly at first and gain their full height slightly later in life - but they will gain their full size nonetheless.  

The best sign is that your child is energetic and healthy. Keep in touch with your child's doctor and if he is still not growing then you can do further investigation.  

all the best to you and your son:)

Sharmin

Thank you Sharmin. It is an excellent reply to my question. It gives me lot of relief.

As my son's ped also said, we will wait for couple more months and see how he does.

Thank you once again,

You are very welcome my friend 

Keep us posted on what your doctor says.  Hugs to your little guy

Sharmin

Hello,

I'm also very new to this so please consider what I say with a grain of salt.  My son, now 4 years 3 mos, did not grow for 9 months until just last month after about roughly 3 months of Iron supplementation.He is behind about 2 1/2 inches at this point. He went from also 75th percentile in weight and height to now 20th.  He is Beta Thal Minor and we just found out he has Iron defiiciency. Did your doctor order an Iron/Tibc/Ferritin test?

Also, I was just researching his stunted growth and discovered that you SHOULD be very concerned if your child's height/weight trajectory crosses 2 centiles/percentiles. Failure to thrive is under 3 percentile. If he was at 75th percentile and dropped down that low you need to start aggressively searching for the cause as delays could be costly. It's acceptable to "grow down" as the above poster mentioned but not more than 2 centiles, ex: from 75th to 25th is kinda okay but not from 75th to 3rd!

Oddly enough, we were directed to look for a WORM or PARASITIC infection. Please ask your doctor to order fecalysis or stool analysis BUT you need to discontinue iron and certain fruit's and medicines prior to test so they can find Occult Blood if there is any. Check out HELMINTHIC infection all over the internet and it's correlation to stunted growth and malnourishment, etc. Tell your doc that you'd like him/her to rule out a parasitic infection and also possibly internal bleeding, malabsorption. There  could be several reasons why this is happening, but waiting another 2 months could be costly. You should initiate testing now, so that 2 months from now, you're looking at solutions and not just finding out what ever else is wrong. Of course this could all just be related to the Thalassemia but from what I've read it's not too likely.

This are just suggestions, as I am literally going through that right now. We just had the first of 3 stool analysis done yesterday and looking to find out results soon.

I have been away from the board due to my son's surgery and just came to look today for some answers myself. I hope you find the reason for his delayed growth quickly.

All the best to you and your son,

G

Thank you for the reply StarMom. Information you have provided is very helpful. Keep us posted with your son's updates. Hope everything will work out good for him.
 
I talked to my son's ped this morning. She has given us appointment this Wednesday to discuss it in more detail. She said that she can refer my son to Hematologist and GI if we want. We already had some blood work done recently and everything came normal for my son. I also mentioned about some infection or parasites. She said we will do some extra tests.
 
His iron is little low. I am actually more confused about iron level now that I am reading more and more material online. On one hand, everything is saying that too much iron is not good and on the other hand, he is already low on iron. What do you do then? I give my son iron fortified cereals and iron fortified yogurt. We do not give iron suppliments.

The confusion about thal minor comes because thal minors cannot benefit from iron, so it is not useful to help the anemia, but iron deficiency and thal minor can coincide and is probably as common as iron deficiency is in the normal population. So, if iron deficiency is established through a series of iron tests, then correction is needed. If you have had serum ferritin, serum iron, and TIBC done, then you can be fairly certain of the results. You cannot determine iron deficiency by Hb level alone. Correcting iron deficiency can be tricky, as iron supplements can cause stomach discomfort, leading to less appetite and less intake of dietary iron. Because of this, I think it's quite important to include an iron rich diet when trying to correct the deficiency. Eating citrus or taking vitamin C with iron rich meals can help absorption of iron.

Thanks Andy. I will ask my son's ped to have those tests done for iron def.
 
So Andy do you mean that for most thals, iron supplements are not good. However, you still try to get as much iron as you can get from food. Of course, Vit C helps a lot for iron absorption.
When I ask my son's ped, she said that you can never get iron overload from food. You can get it from iron supplements, but food never really have that much iron. My son only had iron drops for 3 months (almost a year ago), then we stopped it. She said I should not worry about iron overload.

Iron supplements should be used by thal minors only when iron deficiency has been diagnosed through iron tests.
Most thal minors will not get iron overload from food, unless they have very low Hb levels. If the Hb falls to 9 or lower, the likeliness of excess iron absorption increases. The greatest danger of iron loading in minors is when doctors prescribe unneeded iron in the mistaken belief that thal minor Hb levels can be affected by iron supplements. Thalassemia intermedias who do not transfuse are at greatest risk of iron loading from diet. Many non-transfusing intermedias do need to use chelators, as the iron can build up to dangerous levels from diet alone. We have members in this group who are in this category. Iron loading from food alone, is a very real danger for anyone with a chronically low Hb level.

Now that I have read some information, I have this theory.

Now that we know that my son is thal minor, me and my wife are getting our blood work this week to find out who is the carrier. I do think that it is my wife. She is already anemic and she is also takes iron supplements. So the other day, I asked my wife if her mom or dad had any iron def or anything like that. She said that her father had low hemoglobin issue all his life. He was taking iron supplements pretty much every day and lot of iron rich food.

Now her dad was never checked for thal and always diagnosed as low hb and keep taking all these iron supplements. I do suspect that he was thal patient. They never checked him for that and keep giving him iron supplements for low Hb. My wife's father died of heart attack when he was 55. He was very slim and no alcohol or any bad thing for his whole life. It was just hard to imagine that someone like him would die from first heart attack. Now I am thinking that could it be possible that overload of iron for his whole life actually lead to heart attack for him. We would never know for sure. Just my thought...

Hello P,

Sorry I've been busy. I hope your son is doing alright and that you find out results of your new testing soon. Here's the latest on my son for your info (don't mean to hijack your thread or anything). We just completed the 3 fecalysis/stool analysis for my son - we had to do them at least 1 week apart. So, they're all negative    I spoke to my cousin who is an infectious disease specialist and have just come to find out that it's very, very difficult to get a true positive test. He says it's really hit or miss sometimes because of the sample size (only about 1-2 grams is requested by the lab per sample). The occult blood also was negative - however...it was only the guaiac test. A newer test is available but not here where we are. Have to research this a bit more to find out if he is losing blood through any other means and what that would mean to us.

Anyhow, my cousin has suggested (I will get permission from Pediatrician first) to go ahead and give our son the medicines and just do it every six months. He said it's likely to help no matter what, unless our son has any allergies to the medication. We will try Mebendazole (Antiox) and Pyrantel Pamoate (Combantrin) - the dose should be the kiddie version as appropriate to child's weight/height - my cousin has stated that the course should be the 2x day for 3 days of each medication. Apparently these 2 drugs wipe out most of the helminths/other stuff much better than just the single dose. He has also recommended that I do the course as well as other adults in the family every 6 months, just to be on the safe side. (We are obsessive clean freaks but that is irrelevant he says).

Now for the Iron deficiency, we have results for the last 3 tests since we started iron supplements and we will do another blood test end of April. His Hgb numbers are weird because he is always sick with an infection of some kind (looking back) and I did not include similar blood tests from other labs cause the ranges are different and I don't have the time to convert them all right now. 

I am posting partial numbers here so you can see and hopefully it is useful to you or someone.  At the bottom rows, it shows some very useful formulas that help determine if blood levels are Beta Thalassemia Trait or Iron Deficiency (this may or may not apply to your son, obviously, however still useful to someone maybe). Please excuse my spreadsheet skills 

And just to also let you know, in my son's case, he has a very enlarged spleen, enlarged gallbladder and recently had a very large kidney cyst removed (I have a photo/s I can post but was going to ask Andy if it was okay first). His enlarged spleen can certainly be aggravating his hemolysis. We are advised to do ultrasounds every 6 months to monitor his spleen size. According to  his Hematologist, Splenomegaly caused by iron deficiency has been known to be reversed once iron stores have increased. I will likely open other thread about his exact issue as I'm very concerned about this for my son. Hematologist mentioned that in general, he expects iron levels to reach normal range after about 3 months of iron supplementation.

Lastly, I was also diagnosed with Beta Thal Minor when we did the testing for my son. I also have mild chronic anemia, Folic Acid and B12 deficiency. I just try to supplement our diet with the right vitamins at higher therapeutic levels vs the recommended amounts on the bottles. My husband just shows Hgb at 13 and otherwise low normal CBC's, sister in law is Alpha Thal Trait and so far I have not heard if the other family members have been tested yet.

Sorry for the long post. My very best for your son and family.

G

Has any thought been put into having a DNA analysis done on your son, looking for both alpha and beta mutations/deletions? The fact that both are present in relatives would justify the testing.
The spleen being enlarged is typical for a thal minor, as there is some degree of hemolysis involved and the extra activity will cause the spleen to grow. A final determination on his type of thal may shed some light on this, also. His CBC numbers actually don't look bad for a thal minor. I don't know how much role thal is playing in his problems. His iron numbers do not look bad, as they all fall into normal range. His ferritin was low but that has risen to normal range for his age. I'm not certain that continued iron supplements are warranted at this time. What about his folic acid and B12 levels? Vitamin D? If you are looking for an easy to take vitamin D, check the one I use at http://www.amazon.com/Foods-Liquid-Vitamin-5000Iu-Dropper/dp/B001N4JYX6/ref=sr_1_4?ie=UTF8&qid=1335030743&sr=8-4
This is a liquid with a very mild taste and it's very easy to take. Also, keep in mind that foods containing vitamin C help iron absorption, while dairy products can inhibit absorption. It may be wise to avoid milk products with iron rich meals.