Update on our 2 Thal Boys

Hi friends,

It has been a very busy year and I am visiting thalpal after a very long time!  I apologize to everyone as I truly wish I was a more active member but it has been extremely difficult with my work and family schedule these days. 

I know it's never too late to start again though so I hope to contribute more going forward.  I am so happy to see how much we have grown and how many new people are using this forum to ensure that their thal children live a happy and healthy life!

I wanted to give everyone an update on the boys as they have grown up so much in the past year!  Ari is now 3 and continues to amaze us with his mature expressions and naughty habits and Dylan is now 15 months and has definitely taken the role as a 'mamma's boy' within our household - ofcourse - I LOVE THIS!

We have been taking both children for transfusions together and they are keeping their hg's between 9 and 10 - sometimes even 11.  They have been going every 4 weeks and in order to keep them at this level they are giving them a  little increase in their the amount of blood they receive.  I’m not sure if this is the BEST way to maintain their HG’s but this is what our specialist in Atlanta and our doctor here have discussed.

High Ferritin levels are an issue among BOTH children.  Ari has been on exjade for 1 ½ years.  He started exjade at a ferritin of around 1500-1800 at 250 mgs.  After a year, he had a Ferriscan done and the results were actually a point higher than what they were prior to starting.  They have now started to give him 375mgs of exjade and are waiting to see what will happen.

Dylan has not started exjade at this time BUT his iron levels have been between 1200-1600 for the past several months.  The specialist has asked him to come in for a Ferriscan at 22 months as that is the EARLIEST she has started a child on exjade. 

Both kids seem to be healthy, happy and growing well.  Regardless, I always know that I do not fully know what’s going on internally so that saddens me at times.  After reading through all the posting within the past several months I was even more saddened because unfortunately, I still haven’t been as proactive as I should’ve been over the last year with introducing all the supplements and antioxidants that will benefit them!  I know it’s never to late though so I have been ordering, researching and moving forward since then. 

Anyhow, I hope everyone is doing well.  My goal is to reconnect with you all and contribute to the thalpal forum once again throughout 2013.

Hi friends,

It has been a very busy year and I am visiting thalpal after a very long time!  I apologize to everyone as I truly wish I was a more active member but it has been extremely difficult with my work and family schedule these days. 

I know it's never too late to start again though so I hope to contribute more going forward.  I am so happy to see how much we have grown and how many new people are using this forum to ensure that their thal children live a happy and healthy life!

I wanted to give everyone an update on the boys as they have grown up so much in the past year!  Ari is now 3 and continues to amaze us with his mature expressions and naughty habits and Dylan is now 15 months and has definitely taken the role as a 'mamma's boy' within our household - ofcourse - I LOVE THIS!

We have been taking both children for transfusions together and they are keeping their hg's between 9 and 10 - sometimes even 11.  They have been going every 4 weeks and in order to keep them at this level they are giving them a  little increase in their the amount of blood they receive.  I’m not sure if this is the BEST way to maintain their HG’s but this is what our specialist in Atlanta and our doctor here have discussed.

High Ferritin levels are an issue among BOTH children.  Ari has been on exjade for 1 ½ years.  He started exjade at a ferritin of around 1500-1800 at 250 mgs.  After a year, he had a Ferriscan done and the results were actually a point higher than what they were prior to starting.  They have now started to give him 375mgs of exjade and are waiting to see what will happen.

Dylan has not started exjade at this time BUT his iron levels have been between 1200-1600 for the past several months.  The specialist has asked him to come in for a Ferriscan at 22 months as that is the EARLIEST she has started a child on exjade. 

Both kids seem to be healthy, happy and growing well.  Regardless, I always know that I do not fully know what’s going on internally so that saddens me at times.  After reading through all the posting within the past several months I was even more saddened because unfortunately, I still haven’t been as proactive as I should’ve been over the last year with introducing all the supplements and antioxidants that will benefit them!  I know it’s never to late though so I have been ordering, researching and moving forward since then. 

Anyhow, I hope everyone is doing well.  My goal is to reconnect with you all and contribute to the thalpal forum once again throughout 2013.

Hi Cari,

I probably haven't chatted with you earlier but nice to meet you.

Nice to hear that two cute angels are doing well.

And regarding exjade and increasing iron after first year, that's common and normal. Good, it's a sign that Exjade is working. Exjade extracts out iron from the core in it's first year and that is why we see a rise in ferritin levels. This should be fine mostly when you take next reading.

Also consider splitting the dose of Exjade (one in the morning and other half in the evening). Almost all patients who adopted split dosage have shown nice continuous decrease in ferritin. This way, it ensures there is 24 hour chelation going on as taking all at once doesn't seem to chelate for more than 8-10 hours. Moreover, splitting dose is easy on kidneys and liver as the load is divided.

-P.

Hi Pratik,

It's very nice to meet you on Thalpal.  Yes, we are splitting his doses these days.  My doctor doesn't think that this will have any effect on him but he's agreed to let me do it.  My husband and I have very hectic schedules and getting the kids out of the house in the morning has been a little hectic.  Because of these we have not giving Ari an equal dose at his 2 timings.  We we have been given 125mg pills so we give him 1 pill in the morning and 2 at  night.  I know this is probably not the best though.  A few days ago I stressed the importance of taking time to split the pills in the morning to ensure that it is an equal dose both times.

It may seem like a little thing but our mornings are crazy trying to drop off the children and get to work on time....

Hi Pratik,

It's very nice to meet you on Thalpal.  Yes, we are splitting his doses these days.  My doctor doesn't think that this will have any effect on him but he's agreed to let me do it.  My husband and I have very hectic schedules and getting the kids out of the house in the morning has been a little hectic.  Because of these we have not giving Ari an equal dose at his 2 timings.  We we have been given 125mg pills so we give him 1 pill in the morning and 2 at  night.  I know this is probably not the best though.  A few days ago I stressed the importance of taking time to split the pills in the morning to ensure that it is an equal dose both times.

It may seem like a little thing but our mornings are crazy trying to drop off the children and get to work on time....

I feel you.

My both parents also do the job. I stayed alone in the home since I was 3 or hardly 4. My mom used to lock the house from outside and used to go to job. It was very painful for her to do this, but the expense of medical treatment and medicines for thal major are and were quite costly. So she had to do her job. Eventually I grew up fast staying alone at home all day long and I got used to it. But my mom used to ensure that I eat and take my medicines at proper time. From what I recall, she used to come in recess when I used to be back from school and I used to have launch with her that time. Still today, after I got diabetic in 2009, my mom regularly comes to home in the recess for launch. Well, my parents have spent all their life in taking utmost care of mine and now it's my time to help them get little relieved from their stress.

Don't worry, they'll eventually grow up fast, especially when children are thal majors.

I won't advise to give Asunra in night, 5 PM or so is okay, but like 7 or 8 PM won't have much effect as they get to sleep only in 2-3 hours from that time, I assume. One thing you could do is, give them the morning dose, and keep the Exjade or ask your neighbors (if they are friendly enough) to keep it and give them in the noon time (preferably 4 or 5 PM).

-P.

Cari,
nice to see you back in Thalpal. For Ari, what is his weight? If his ferritin is not going down, then may be he is not on the optimum dose needed to chelate. I remember, we had started with ~ 15mg/Kg weight when our daughter started her exjade but after a month or so, it was quickly increased to ~ 25mg/Kg and we saw nice and steady decrease in ferritin with it. The way you are spilliting the dose shoudl be fine. We also do something similar...1 tab in the morning and 2 at night or vice versa....

For Dylan, you do need a "baseline" scan before you start chelation. Do not worry about the ferritin at this time for him...the iron is less harmful to his body than introducing chelators before the age of 2. so, just take it easy....We did give our daughter IP6 (remove the powder from the capsule and put it in the milk) when she was around 16 to 18 months and before she started exjade. I do not know how much it helped with iron chelation but I do remember that we saw a bit of lightening of her skin and she was looking fairer than before.

For multivitamins, you can try the vitacost liquid vitamin. recently we switched to the liquid vitamin from gummies (based on input from Oakland) and have been happy. ALso it is easy to give. More than supplements, try to make sure they eat a balanced diet and their Vit.D level is optimal. what else. Good to see your updates.

Best wishes

Hi Cari...nice to hear frm u again!

Glad to hear ur boyz r healthy n doing well..
Wish them always

I'm sorry this is off topic but i had to reply to Patricks starement because it really hit me....Patrick you stayed home alone at 3 or 4???!!! Oh my! That must have been so difficult for your mom and yourself! It breaks my heart to hear that she had to do that to pay the bills. I can't imagine my 4 year old alone in our home. How did you manage not to get out of the home or get into anything in the home?

I'm sorry this is off topic but i had to reply to Patricks starement because it really hit me....Patrick you stayed home alone at 3 or 4???!!! Oh my! That must have been so difficult for your mom and yourself! It breaks my heart to hear that she had to do that to pay the bills. I can't imagine my 4 year old alone in our home. How did you manage not to get out of the home or get into anything in the home?

Haha,

There was a babysitter till I was 4 or so at our house, but she had to eventually leave the job due to her age requiring her time to be devoted more to herself. My brother (elder) used to come from school at around 2 PM or so, and left for tuition's at around 3 PM. The neighbors did kept an eye on me from time to time (they had the keys of my home as well) and see if I need anything, very fortunate enough to have neighbors like that (although we changed our house when I was 8 or 9, but new neighbors were great as well). Well, I got used to it, actually, as a child, on many days (maybe the couple of year ending months I guess?) I used to see my mother sitting nearby when I used to come from kindergarten and I used to be overjoyed to see her sitting and used to ask, "Mom, you won't go today at the job back, right? You've taken a half day right?" and she used to shook her had lightly and I was joyed. Great days. I knew value of like what was spending time with parents - I used to grab every single minute or moment I used to get with them. Although, evenings were a rejoice - we used to and still have great time together.

About not getting out of house - I think thal major made by intelligent or grown up faster - I could understand at the age of 3 that the needle that the doctor is going to poke me every 14-15 days is for my betterment and will run life long like this, so let's take this as challenge rather than a curse. I could understand the do's and don'ts, what outdoors should I do and what I shouldn't, what my interests were and what weren't. So things were pretty good for me and supportive, most importantly. My friends, family and most importantly - all teachers during my lifetime were very supportive, understanding and listening. My friends and teachers as well never let me feel like I'm some other kid than a normal one, they always had my back.

So, that's how life is for me and I'm sure your baby will be as strong and if not - even more than me. And with this advance treatments coming through - leave the worries behind - just enjoy the life, hell yeah...!

And it's Pratik and not Patrick, hehe (Although I can't blame it, most people take that as my name, mainly from outside of India), hehe. 

-P.

Haha sorry about the misspelling. Your right, our minds just assume its Patrick. Thanks for letting me understand how that was possible. Great to hear you had so many caring individuals around you. Even better that you learned to cherish moments with your mom. That is something that is priceless.

The boys have been taking ip6 for about a few weeks now. I just wanted to make sure I'm giving it to then correctly though. I sprinkle half a capsule on meals And usually combine vitamins e and d  with it.

I just read an older post where someone stated that it must be taken 1 hr before a meal or 3 hrs after a meal). Is this true? My kids won't swallow it just like that....

Also, at what age should I switch to full capsules for each. Are there any side effects to be aware of?

Cari,

I tend to give Lil A his vitamins with food as well - it is too difficult to give them on an empty stomach.  You will notice a change in their complexion soon - the skin color tends to lighten and look more pink. 

You're doing awesome

Sharmin

The boys have been taking ip6 for about a few weeks now. I just wanted to make sure I'm giving it to then correctly though. I sprinkle half a capsule on meals And usually combine vitamins e and d  with it.

I just read an older post where someone stated that it must be taken 1 hr before a meal or 3 hrs after a meal). Is this true? My kids won't swallow it just like that....

Also, at what age should I switch to full capsules for each. Are there any side effects to be aware of?

The only side effect I have for me of IP6 is constipation and gas trouble. Whenever I try to take, I need to give up on it. I've ordered from Puritan a new one and will see if that will adjust. It will have 500mg in one capsule, so that'd be a good tolerable start for me to test again, as the current one (IP6 Gold by Dr Shamshuddin) contains 800mg and I have side effects as mentioned. The side effects were little less when taken after the meals, although not enough to keep going.

But don't worry, not all people are prone to this side effect, for example, Sharmin's son is taking it since years.

And yes, it's no problem if you open the capsule and mix with the food - it's one and the same - the effects won't be lowered.

-P.

Thank u so much sharmin   
Pratik, I have noticed a little constipation with my youngest but not toooo much. His hg levels are staying higher though but I'm not sure what is contributing to that but I'll take it! After four weeks we have been transfusing him at 10 or 11....

Thank u so much sharmin   
Pratik, I have noticed a little constipation with my youngest but not toooo much. His hg levels are staying higher though but I'm not sure what is contributing to that but I'll take it! After four weeks we have been transfusing him at 10 or 11....

It might often happen with young ones, but make sure to take a note everyday - if it doesn't stop or stomach pain (due to gas trouble), I'll advice discontinuing IP6 for temporary moment. Also as I mentioned, give it after meals for better digestion - that's my experience.

-P.

Has anyone heard anything about silversheild and CBG extract? My little one, who has ear tubes after a year of ear infections and antibiotics, has been sick for over 3 weeks with something or the other. It started ad a fever weeks ao, developed into a cough, then fluid drainage from ears last weekend...his doctor put him on an oral antibiotic on Sundaynight but he had a spell of nonstop vommiting after the first dose and we just stuck to the ear drops instead. A week has now passed and he's had a constant runny nose and cough but seemed to be getting better...until today when the fluid started draining from his ears again and he is now running a low grade fever. I don't want to get him on antibiotics as I'm trying to maintain the healthy bacteria in his body...my cousin who is into all the natural herbs and medicines recommended I try these products.

Any feedback or other suggestions? The poor baby has been sick so much....its frustrating. His brother is in daycare so I know he is probably bringing a lot home with him but sometimes I wonder if his immune system is just weaker than the norm.