Very new to diagnosis...

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Offline MikeD

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Very new to diagnosis...
« on: January 03, 2013, 02:12:22 PM »
Hello Everyone, so we are within days of son's initial diagnosis of Thalassemia Intermedia.  We of course have lots of questions and have been doing countless research. It has been a crazy couple of days in which some information was not communicated to us appropriately setting us up for the absolute worse.  Our story begins with my 8 month old son.  We have continualy been raising concern as he has not gained weight in almost 4 months and has not doubled his birth weight.  Myself and my fiance are both short (5ft-5ft 4inches) and we understand that our child may not be a giant but we do know he should be growing even in small proportions.  Our doctor continually told us to wait until the next month and again the next month.  When we demanded a second opinon the doctor sent us for blood work on 12/29/12.  We raised concern agian that we were both Thalassemia trait carriers even though we mentioned this countless times prior to his birth and at the hospital.  On 12/31/12 the first set of blood work came back that all signs were pointing to thal.  We had additional bloodwork done yesterday on 1/2/12 and met with Hemotologist at Strong Memorial Hospital who concluded that he does have Thalassemia Intermedia (Hb A is NOT absent).  He levels have between the two days have been 7.3 and 7.7.  At this time they have set us up for  two week weight check and another blood analysis one month out to check his levels again.  The doctor told us to start feeding him yogurt and pudding to help him gain weight but we are not satisfied with this.  We still dont understand why he is not gaining weight and feel we should have a more definitive answer. 
We want to make sure that he is getting the best care possible and that we are working fast.  I am unsure if we should be seeking out a second opinion immediately or traveling to a specialized hospital within the US such as the one in Phili.  Strong Memorial is a very well renouned hospital and they are currently treating multiple people with thal however we do not want to leave any rock unturned.  We are still perplexed how this was not initially caught with our raised concern at the hospital. We were told he did not have thalassemia.  we are really looking for some guidance.  Any and all information the communitiy can assist with would be great appreciated. 

Thank you

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Offline Andy Battaglia

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Re: Very new to diagnosis...
« Reply #1 on: January 03, 2013, 03:25:43 PM »
Hi Mike and welcome from Rochester,

The doctors at Strong are good doctors for the most part, and are well equipped for treatment of thal, but I still feel it is essential that all thal patients be seen at least annually at one of the thal Centers of Excellence (Strong does not fall into this category in any analysis), and absolutely should be seen at the earliest possible date once the diagnosis has been verified. In addition to Philadelphia, in the East we have the centers at NYC and Boston Childrens. I would rank Boston slightly higher due to the doctor in charge at Boston, Dr Neufeld. If you are unsure about whether or not to pursue being seen at a Center of Excellence, think about the fact that you were told not to worry, about being thal carriers and that the very simple basic diagnosis of "failure to thrive" was not diagnosed earlier (I am not a doctor, but would have told you to demand a diagnosis at an earlier age, due to failure to thrive in a child of thal carrier parents). At 8 months, your son's Hb is barely above 7. Has it been explained that once there are two consecutive Hb readings under 7 that transfusions will be initiated? Do you also have the results of the hemoglobin electrophoresis test and at what at was this test done?

The founder of this group was a patient at Strong. She did not visit a Center for annual evaluations and planning. Her doctors did not meet together to discuss and plan her treatment. Even back in 2003 when my understanding of thalassemia was fairly basic, I was dismayed at the lack of communication among her various specialists. Today, my feelings about this go far beyond dismay. I feel this lack of coordination and lack of follow up on her ongoing condition contributed to her failing health and ultimate death. At the Centers, all of the care providers, including doctors, nurses, psychologists and social workers coordinate their efforts to give patients a comprehensive care that just is not found outside the Centers. It is fine to be treated at a local hospital like Strong, but for the best interests of the patient, annual visits to the thal Centers are essential, as is following the treatment program put in place by the Center. I highly recommend not relying solely on Strong. Regardless of what anyone at Strong may claim, they are not even close to providing the assessment and planning that one can receive at the Thal Centers. Even a simple concept like providing a comfortable setting for transfusion, that includes comfy recliner chairs and TVs was not Strong's idea. These chairs and TVs were paid for by money raised locally by Lisa's mom, and are now used by bot thals and cancer patients for treatment (my wife was one of the cancer patients who used these chairs). Every thal patient deserves the full comprehensive approach to treatment, and this is only available at the Centers of Excellence..



Andy

All we are saying is give thals a chance.

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Offline Narendra

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Re: Very new to diagnosis...
« Reply #2 on: January 03, 2013, 06:51:24 PM »
MikeD - Welcome to thalpal.

You have taken the best step on trying to find the best treatment/management of your child's condition. Please know that there are a lot of thals that will help you go through this journey and the initial jitters will settle down. As this is the first few days, I understand there is a lot to grasp but take it easy and also take care of yourselves. The child needs you both as healthy as possible.

As Andy mentioned getting an opinion from Thal Excellence Center is of utmost importance. Please go through the Standard of Guidelines for Thal Care at http://www.thalassemiapatientsandfriends.com/index.php/topic,1762.0.html or http://hemonc.cho.org/thal/documents/SOCguidelines.pdf
by Children's Hospital Oakland.

I would suggest you to read Section 1 through 4.2 and Section 19 - Thalassemia Intermedia (Starting at Page 18)

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Offline JV

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Re: Very new to diagnosis...
« Reply #3 on: January 04, 2013, 01:08:08 AM »
Andy is 100 percent correct. From somebody who knew knowing about Thal 2 years ago (my daughter is 2 and has thal major) till now, I am convinced I know more about thalassemia than most Doctors outside of the centers of excellence. My daughter goes to CHOP in Philly and we are very please with her care. If you have any questions feel free to ask anybody on this board, especially Andy, and we would be glad to answer. Do not worry, your child was born in good times...we are very lucky.

James
from New Jersey

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Offline BabyI

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Re: Very new to diagnosis...
« Reply #4 on: January 11, 2013, 05:07:20 PM »
Hello Mike-

I hope you received my email with information. Please let me know because I wasn't sure you got it since I had to use another email to send it to you (couldn't send with other one). 

Thanks

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Offline MikeD

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Re: Very new to diagnosis...
« Reply #5 on: January 20, 2013, 07:33:50 PM »
Hi Baby I- i did receive your email. Thank you very much.  Thanks to everyone on this board for being so supportive to all of the members and for all of the great information.  We are getting some more blood work done next week to monitor my sons levels and discuss starting possible transfusions for 6 months to see how he does.  We have an appointment at Philidelphia Center of excellence on Feb 7th and will go on their advice.  we are anxiously awaiting however our son seems to be doing okay. 

Thanks everyone!

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Offline MikeD

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Re: Very new to diagnosis...
« Reply #6 on: January 20, 2013, 07:39:39 PM »
I might ask- has anyone had experience with beginning transfusions for a young infant. i can only imagine how traumatizing it must be for an 8 month old to be what i assume is restrained during this long process. We are very worried about this. The doctors showed us how comfortable the setting is, as Andy mentioned- tv and recliners but i cant assume this is going to help an infant.....we got the feeling that maybe they havent really transfused someone this young very often.

Andy- if you are reading this....i was just curious if there has ever been any fundraisers or walks set up nearby in Rochester.  We of course plan to do our part to help raise money and bring awareness to this.

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Offline Andy Battaglia

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Re: Very new to diagnosis...
« Reply #7 on: January 20, 2013, 07:46:27 PM »
Mike,

Lisa's mom has run a fundraising bingo game every Monday night for years. Proceeds go to CAF. She has raised hundreds of thousands of dollars over the years.

Join the Rochester chapter for its weekly Bingo
night every Monday at the Empire Bingo Hall,
360 Empire Blvd. The chapter has added
“lightning games,” and they have been bringing
in an additional $200 a week. Chapter President
Shirley Cammilleri reports, “We have the largest
crowds of any bingo in the city. With the
recession, bingo in general has been down, but
we have been steady, with an average of 250 in
attendance compared to 150 all other nights.”
Shirley also applauded the participation of a new
volunteer, Nancy Happ, who has been a big help.
In addition, Shirley reports that the crowd
applauded loudly when they announced that an
FDA Advisory Committee has recommended
approval of Ferriprox, an oral iron chelator.
Andy

All we are saying is give thals a chance.

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Offline MikeD

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Re: Very new to diagnosis...
« Reply #8 on: January 24, 2013, 03:28:51 AM »
Thanks for sharing Andy.....  so nice that something like that was set up by Lisa's mom.   We will have to check it out some night soon!

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Offline MikeD

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Re: Very new to diagnosis...
« Reply #9 on: February 10, 2013, 03:23:21 PM »
We just went to Philly this week and met with Vanessa and Dr K.  They were wonderful as was the hospital there.  We had a very good experience and were able to meet a very nice young lady (16 years old) that was there for her regular transfusion.  She was wonderful and definately made us feel great about what we are going to endure.  Based on Dr K's reccommendation our son will begin transfusions in about two weeks and each month there after.  We have also been prescribed folic acid for our little one.  So at this point we have been reading up on everyones first experiences with their little one and their first transfusion.  Wish us luck!

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Offline JV

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Re: Very new to diagnosis...
« Reply #10 on: February 10, 2013, 03:37:25 PM »
Hi MikeD, hope all is well. You are in good hands with CHOP and Vanessa/Dr.K. We have been taking my daughter there since she was 3 months old, she is now 2 1/2 years old. We travel from North Jersey every 3 weeks. To be honest, you will form a routine and realize everything is normal. Good luck and feel free to contact me whenever.

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Offline Bostonian_04

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Re: Very new to diagnosis...
« Reply #11 on: February 11, 2013, 07:27:48 PM »
MikeD,
for the 1st transfusion, make sure your child is well hydrated. You can also use a warm clothing to keep the area to be poked covered while driving to the location. that helps with finding the vein quickly. Also try to stay away from new nurses. Initially we always asked for the nurse who had experience in poking infants. And most importantly, keep yourself calm and relaxed. as a parent, it is very hard to see our kids poked but if we are nervous or stressed, our children will have a hard time too.
 
Best of luck....
Quis custodiet ipsos custodes ? - Plato

Re: Very new to diagnosis...
« Reply #12 on: February 16, 2013, 09:25:59 PM »
I might ask- has anyone had experience with beginning transfusions for a young infant. i can only imagine how traumatizing it must be for an 8 month old to be what i assume is restrained during this long process. We are very worried about this. The doctors showed us how comfortable the setting is, as Andy mentioned- tv and recliners but i cant assume this is going to help an infant.....we got the feeling that maybe they havent really transfused someone this young very often.

Your child will of course need to be held securely when the line is started, but once the line is in, your child will be able to do anything normally done! Feed, nap, be held, play, etc.
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

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Offline MikeD

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Re: Very new to diagnosis...
« Reply #13 on: February 18, 2013, 02:29:35 AM »
Lot's of good tips.  Thanks so much for all of the help and encouragement. 

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Offline Cari

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Re: Very new to diagnosis...
« Reply #14 on: February 18, 2013, 04:03:33 AM »
Miked

8,months is a tough age because our little ones r really aware of strangers and new  surroundings. Try to be calm, encouraging, and act like what they r going through is normal. My first always had hard to find veins. He went through a lot but we tried not to show him our tears and pain.. We knew that in order to make him strong we had to be strong. It's hard to do when it comes to your children.
Once the iv is in your baby will be able to do what they normally do. Before the blood comes they usually get benedryl so they should sleep while getting transfused.

My kids  have been getting transfused since they were 3 months and its still tough for me to watch them react when its time for their poke. Luckily we have a great nurse that helps us each time..so that gives me a peace of mind while we r there.

Anyhow, I hope all goes well. U r at the right place for guidance. I got through my first transfusions with the support of everyone here :)

 

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