Hardik

1) There's no point in frequent ferritin testing right now. The child is still getting used to the chelator, and it's too early to be worrying about the iron load.
2) Yes, you can mix them with juice. Desirox can also cause loose movements. This is more likely than being caused by IP6.
3) Zinc drops are good at this age.
4) Natural vitamin E capsules from Puritan. 100 IU at this age. These can be opened and the gooey liquid mixed into any food.  I wouldn't suggest much else at this age.
5) As I understand it, Dr Ramanan is using thalidomide along with hydroxyurea and wheatgrass and having good success. I don't know much about the use of thalidomide.

Hello Andy
Plz solve this QUERY

When my baby was 3 months old....he got his first transfusion....at that time his electrophoresis/hplc reports says that :---

hbf==96%(very high)

hba==4%(very low)

hb a2==2.2%(within range)

1) -->  As DR RAMANNAN therapy increases fetal hameoglobin only .....then why did the transfusion happened ....as hbf was pretty nice at that time ?
2)-->  Is there any need or demand of doing electrophoresis/hplc again ?
3)-->  what is the actual base of DR's therapy ?
4)--> how to know gene mutation of child....?what is its use in bmt??

I am really confused as on talking to person taking therapy.....results in positive attitude ....but moving against nature(as god made our body system to turn hbf to hba) made me confused everytime..

Hello Andy,

After 9 transfusions on last April my babies ferrittin was 459. Is it necessary to test now or we take some more time? She is now completed 2 yrs old.What do you think about hydroxurea application?

My baby is not interested to take any food.After or before transfusion never she get interest.She just swallow her food with water and maximum time after completing she vomit the all...We are really tired and this is too hard to give her food.She taking daily 5 ml Zinc Syrup but why her appetite is so bad can't understand.She likes just only water and any kind of juice.What to do Please advice..

Hardik,

Percentages are no indication of total Hb level. Thal majors will always show nearly 100% HbF, but it's the total Hb that matters. If your HbF is 95% but your Hb is only 5, then it is insufficient.

1) If the total amount of HbF is increased, then the Hb will rise. The body of a thal major makes more HbF than normal, but not enough to survive. By adding substances that stimulate HbF production, it is possible in many cases to produce enough HbF to live with either reduced transfusions or eliminated transfusions.

2) Electrophoresis is affected by transfused blood, so unless a break from transfusions is taken, you won't get a true reading by electrophoresis.

3) From what I understand, Dr Ramanan is using a formula he devised that includes hydroxyurea, thalidomide and wheatgrass. The specifics have not been shared by the doctor as of yet.

4) The gene mutation can be determined by DNA analysis

This therapy increases HbF production. It will not produce HbA.

Lokkhi,

I would suggest stopping all supplements to see if the child's appetite is better. If she does start to eat again, introduce supplements in low doses one at a time and see if something she is taking is disagreeing with her. Keeping her Hb high, >9 will also help the appetite.

The ferritin level should be checked again.

Hello Lokkhi maa

As my baby is of same age ......I also faced same problem of poor appetite of Hardik.....but on giving Pabri(as I told u earlier that it act as a liver tonic and increases appetite )only 2-3 days after transfusion moves me and baby to the comfort zone of good eating ......plz try if u get it.....as it can be found easily in abundant in any part of asia
Just ask older ones in your family....they must have knowledge of it.I give only 2 spoon pabri plant juice ....and ....if the problem still persists ...i continue it for 2-3 days more......so in all a dose of 7 days ....is sufficient .....but depends on body needs.....

plz also check her SGOT and SGPT and other liver function LFT tests on regular basis if she is on Desirox/Defrisirox......as appetite directly relates to liver(according to my knowledge)......

you can see the picture of pabri on my previous page ....

Regards
Neha

Thank you so much Andy and Neha..

Can desirox 250 mg and wheatgrass be given at same time....... to a 2 year old baby weighing 11 kg...

They can be given at the same time, although there is no reason to do so.

HII ANDY
 
First of all sorry to disturb u on ur special day......but u made urself so much important for all of us that whenever anyone of us have any problem.....the first that word came in our mind is ANDY.....

On Jan 19th....hardik(2 year weighing 11.5 kg) had his BT and his LFT test has also been carried out.....Shocking results are as below:---

Biliburin (Total) =1.2(0.2-1.0)                                                 sodium = 139 (135-145)
Biliburin (Conj.) =0.2(0.25)                                                     Potassium= 4.8 (3.5-5.5)
Alkaline Phosphaste =177 (40-130)                                         Chloride =103 (98-107)
[bgcolor=#00FFF5]SGOT = 163(5-40)[/bgcolor]                                                             Urea =28(15-45)
[bgcolor=#00FFF5]SGPT = 427 (5-35)  [/bgcolor]                                                             Creatitintine = 0.6 (0.8-1.8)
                                                                                          Uric Acid = 5.1 (2.4-7.0)
                                                                                          Calcium =9.6(8.0-10.4
[bgcolor=#00FFF5]Last ferritine=1147 [/bgcolor]on 18th Nov 2015

The Doctor advice to stop the Desirox 250mg(1 tab daily) for 2 weeks......then to test again for SGPT and SGOT and if it is in normal range...then to start Desirox  again with same Dose

Now Plz guide about Following:
1)-->To Continue or not with Calcium(10 ml daily) and Folic Acid(2.5 mg daily and it is not L-methylfolate)
2)-->Can I give him Green tea or to stop it for now.
3)-->IP6(1 cap daily 510mg) can be given or not or reduce dose can be thought of.
4)-->Wheatgrass can be given or not If yes,how much
5)-->Food/diet to Avoid and to give more for good heath and to improve Liver condition
6)-->how to chelate right now.


Hardik has a little bit swelling under his eyes....what to do

 

Hardik,
sometimes stomach upsets or viral fevers etc can cause increase in these numbers. In my opinion, if your child does not have fever, you can continue the chelation medicine. May be give a break with the supplements for now...after all he is just 2 years old. Have him drink lots of water and give him nutritious food with veggies/greens and protein. check the numbers again after a month and decide on next steps then.

Make sure the child stay well hydrated. This is very important for all using chelators. but much more important for young children. I also suggest you get milk thistle capsules for the child. Milk thistle herb is therapeutic for the liver and can help maintain normal liver function when using chelators. It is also useful for the pancreas. We have heard several reports of milk thistle being the solution to high liver function tests.

The supplements are fine to take normally, but with young children, it's okay to take on alternate days. Take some supplements one day and the rest the next. It's easier on the stomach. Any time there is stomach discomfort, stop IP6 until the problem rectifies. I wouldn't add anything new until the liver function is normal. As Bostonian said, these levels can be affected by illness, so a one time measurement can be an exception. If this was to continue with use of the chelator, you may have to re-examine the choice of chelators. I think it's likely that this will get under control as the child's body gets more used to the chelator. If the chelator is stopped currently, try giving it every other day for a week or two and then get tested again. get tested early in the day, as activity raises these levels. You will get a truer test early in the day. If the tests are close to normal, daily use of the chelator can be started. You might also find that taking Desirox with food improves these test results.

Thanks Bostonion 04 and Andy for ur replies .....

I had one question that hba2 is considered as a main thing for checking Thal major.....but.....what if the child has normal hba2 and high hbf and thus is diagnose as Thal major as the case with hardik....

His two times tested report says
Hba2-->2%
Hbf-->93%
Hba-->7%

Can raising more hbf helps him in getting off from transfusions...

HbA2 is more useful for diagnosing thal minor. It's value is limited in diagnosing more severe types of thal.

This child is not beta zero major, as there would be no HbA present. Raising HbF can reduce transfusion requirements. This is the goal with hydroxyurea and wheatgrass therapy. Wheatgrass can help but is not enough by itself to eliminate transfusion.

Hello Everyone.....

As i observed that whenever i gave ip6 to hardik his sgot and sgpt start increasing.Earlier when his sgot /sgpt reaches 160/427 ..in Jan 2016...... I stopped desirox and ip6 for a month to get the values back to normal which took around a month ....and then firstly i started only desirox ,....not ip6. ...values remain same as last tested and then i slowly add on ip6 on alternate days ....his sgpt and sgot again increased to 160/143 .....and he had swelled eyes .....everytime...when liver values changed.

.. .....Is it possible that intake of IP6(510 mg) by 2 and half child weighing 12 kg shows adverse effects on SGOT and SGPT.....and increases it beyond original values by 3-4 times.

And one more question is:---

My. Mother 's blood always remain at 6(I think she is Thal minor and I m inherited from her but she refused to test) and is not increasing from past 2 years .She is around 55-60 of age....and now her health is refusing to favour her....and cause severe pain in all joints especially knee joints,weight is increasing day by day instead of cycling ,exercise and walking ...

Plz guide about hardik and what to do to increase her blood levels ....and energy too...can she take IP6......plz tell
What to do for her good health