Appointment in February

that is what i had thought...they did mention 1000 as a mark but I don't know if it mean taking away desferal completely or just reducing it. 
3 more weeks until we will know for sure.  I hope that the transfusion frequency remains low because if it does then the rest will fall into place. 

List of Questions

1. is fetal hg less efficient for growing children than adult hg?

2. do fetal hg inducers trigger unwanted functions?

3. L-carnitine - what is the opinion on its usage

4. pulmonary hypertension - who is at risk, how to manage risk - NO inducers?  L-carnitine, citrilline

5. vitamin C with exjade, vitamin C when not using desferal

6. what is treatment for post splenectomy non transfusing alpha/beta thals? anything other than anticoagulants required?

7. have exjade/L1 been used in combination? 


others??

Good list of questions sis ,
Way to go :tumbsup

Best Regards
Take Care
Umair

Sharmin, thanks a lot for your effort dear

If it would be possible, can he tell us what are the suitable anticoagulants that can be given to children rather than asprin,since it shouldn't e given to children and teens.
http://www.orthop.washington.edu/uw/medications/tabID__3376/ItemID__72/PageID__34/Articles/Default.aspx

Effects on children

Recent reports have said there could be a link between the use of aspirin and the development of Reye's syndrome. Reye's syndrome is a rare but possibly fatal disease seen most often in children and teenagers. It usually affects those recovering from chicken pox or a viral illness such as the flu. These reports have raised concern in pediatricians (doctors who specialize in treating children) and parents of children with arthritis who need to take large doses of aspirin to control their disease.

Vitamin E is mainly an antioxidant, but also has the ability to thinner the blood, so would this be enough or there would be a better anticogulante??

manal

Hi Manal,

I will ask about anticoagulants.
Andy, should I ask about magnesium, bilirubin and gall bladder stones as well?


As the appointment is getting closer I am beginning to get nervous.  I hope that his iron levels have come down.  I hope that the results of his SQUID, T2* and DEXA scan are good.  He has never had a DEXA scan before - he bone age test was normal for his age - but the DEXA provides more information.  The last appointment was rough because we realized that his iron levels were higher than we thought - we were about to embark on some very difficult treatments.  I hope that this appointment concludes that things are working.  I also want to cut down his desferal if possible. 

I think what Andy said about reducing iron overload and restoring pituitary function may apply here too - a few months after the intense chelation my son grew 5 cm in a very short period of time. 

We will need your prayers, I am hopeful that things are going the way that we had hoped. 

Sharmin

Which date is the appointment?

My fingers and toes are crossed for his tests!!!

Thanks Dore 

We are flying out on February 11th. His appointments are February 12th and 13th. 

Sharmin

I am very hopeful that every thing will be OK Sharmin  don't worry,our prayers are with you and Little A  .

Zaini.

Sharmin & Lil A ,
Wish you all the best for your apointment and...and....and.. hummmm everything .....
i m always praying for you Little A , and dont forget to update me that how many goals you scored okiey .....  Take Care

Best Regards
Umair

It might be interesting.

Thalassemia Standards of Care Available from CHO
January 20, 2009 - The Children’s Hospital & Research Center Oakland has published its new Standards of Care Guidelines for Thalassemia.  The guidelines, which have been authored by a team of knowledgeable thalassemia care experts lead by Elliott Vichinsky, MD, and Laurice Levine, MA, CCLS, provide valuable information about the proper care of individuals with thalassemia.

Pdf copies of the Standards of Care can be downloaded by clicking here.  Additional copies can also be ordered by contacting Laurice Levine at LLevine@mail.cho.orgThis e-mail address is being protected from spambots. You need JavaScript enabled to view it or (510) 428-3885, ext. 5427.

 

CAF congratulates the dedicated thalassemia team at Children's Hospital Oakland for their hard work on this important publication.

http://www.cooleysanemia.org/index.php?option=com_content&view=article&id=88:cho-standards-of-care-available&catid=1:latest-news

This will be my new homework 

This can also be downloaded in our documents section at http://www.thalassemiapatientsandfriends.com/index.php?topic=1762.msg14639#msg14639

Ok, shall I delete those posts?

Nope. Anywhere people can find the link is helpful.

Actually, I hope people mention this document often and link to it. These guidelines should be seen by every doctor who treats thalassemia, so please do mention Standards of Care Guidelines for Thalassemia often.

The list of questions is below.  I will do my best to get answers. 

1. is fetal hg less efficient for growing children than adult hg?

2. do fetal hg inducers trigger unwanted functions?

3. L-carnitine - what is the opinion on its usage

4. pulmonary hypertension - who is at risk, how to manage risk - NO inducers?  L-carnitine, citrilline

5. vitamin C with exjade, vitamin C when not using desferal

6. what is treatment for post splenectomy non transfusing alpha/beta thals? anything other than anticoagulants required?

7. have exjade/L1 been used in combination? 

8. magnesium, bilirubin and gall bladder stones

9. Patients with PKU

Sharmin