Conflicting Doctor's opinions.....

So we are very confused and am wondering what others experiences are working with two sets of doctors.  We have our doctors here at home and also the advise from our doctos at Childrens Hospital of Philadelphia.  It seems that they are conflicting and it is causing us much grief.  We had thought that our goal for our son was to keep his hemoglobin levels always above 9 or 10.  After our first blood transfusion our levels have read 9.4 and now almost 3 weeks after are reading 8.3.  That being said we believe we should transfuse this week as opposed to waiting another week for our next scheduled transfusion which was automatically set at a 4 week interval.  Our doctors here at home are almost insisting that we wait the week and are telling us that our son has lived his first 9 months with low levels and another week will not hurt him.  Our doctos at CHOP say that if we were closer and they were our regular doctors they would transfuse this week which is what we want to do. I can tell from talking to our doctors at CHOP that they dont want conflict with our doctors but this is very difficult.  If our child is not thriving shouldnt we not wait another full week?  Being new to this i understand they are still figuring how much blood to give and what will sustain him over time and hopefully over a 4 week period but we have yet to get his levels over 10.

We really wish we lived closer to CHOP as we are not totally satisfied with our doctor here at home but feel like our options are limited. I dont want to create hardship with our at home doctor as that iwho we need to sustain a relationship with for an indefinate amount of time.     Does nayone have thoughts??

So we are very confused and am wondering what others experiences are working with two sets of doctors.  We have our doctors here at home and also the advise from our doctos at Childrens Hospital of Philadelphia.  It seems that they are conflicting and it is causing us much grief.  We had thought that our goal for our son was to keep his hemoglobin levels always above 9 or 10.  After our first blood transfusion our levels have read 9.4 and now almost 3 weeks after are reading 8.3.  That being said we believe we should transfuse this week as opposed to waiting another week for our next scheduled transfusion which was automatically set at a 4 week interval.  Our doctors here at home are almost insisting that we wait the week and are telling us that our son has lived his first 9 months with low levels and another week will not hurt him.  Our doctos at CHOP say that if we were closer and they were our regular doctors they would transfuse this week which is what we want to do. I can tell from talking to our doctors at CHOP that they dont want conflict with our doctors but this is very difficult.  If our child is not thriving shouldnt we not wait another full week?  Being new to this i understand they are still figuring how much blood to give and what will sustain him over time and hopefully over a 4 week period but we have yet to get his levels over 10.

We really wish we lived closer to CHOP as we are not totally satisfied with our doctor here at home but feel like our options are limited. I dont want to create hardship with our at home doctor as that iwho we need to sustain a relationship with for an indefinate amount of time.     Does nayone have thoughts??

Sometimes, some doctors are not worth to be heard.

Don't see weeks/time, see Hb levels. 8.3 is quite low and anything waiting further after it is a pure nonsense unless the child in intermediate. For your child's growth to be normal and make sure his oxygen levels are proper and that his/her heart does not need to do extra work/experience stress, keep pre hb 9.5 and above; if not, at least 9. Also your child might show mood swings or stay little inactive when Hb levels are low, so keeping in norms should be best.

I transfuse every 3 weeks with around 500 CC units of blood and maintain my pre hb above 9.3 in most cases, and even above 9.5 many times; I'm 18. If I got flue or some viral in between waiting period of transfusion, I tend to set my transfusion around 2-3 days earlier so as to not to let Hb levels drop low.

-P.

CHOP is properly directing you. Your current doctors are not thal specialists and they should know enough to defer to the experts. What many doctors don't understand about thalassemia treatment, is that if you're going by information five years old, you're using outdated information. I would suggest you talk to Eileen or Kathleen at CAF and ask for advice about how to deal with local doctors when they don't want to follow the program designed by the Center of Excellence.
Cooley’s Anemia Foundation
National Office

330 Seventh Avenue, #200
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Trying to get our Drs to agree has been the hardest part of my son's Thal. And that Drs in the same practice. One even keeps wanting us to schedule regularly every 4 weeks so it fits the clinics schedule better. Keep trying to get heard. Hopefully they will eventually follow the specialists and realize some parents are always the squeaky wheel.

Jennifer

This is very common with doctors uneducated about  thal. The doctor I had with my first son was so focused on keeping the iron down he tried to prolong transfusion intervals and my son rarely stayed above 9.  Before I even  my son was born I knew what I would be dealing with so I interviewed doctors in the area to see if they would work with our specialist. Although he said he would...he never took her advice.

This Same doctor would tell me I was torturing my son by not putting a port in him and told me that if he had cancer a port would be necessary. I was shocked that he even made such a reference but I definitely second guessed myself for a bit. I mean, he's a educated doctor right? I should trust every decision he makes?!

But, as Andy said they r not the specialist. In this case U will probably know more about thal than they even care to know. It's difficult to break through but sometimes WE need to educate them, and stand up for our children.  I  finally got fed up with my doctor after he refused to let the nurse who we were most comfortable with access a line in him. He knew that we absolutely hated the iv team at the outpatient unit and he apparently wanted to teach us a lesson for being 20 minutes late to our appointment! I was devastated that someone could punish a child like that. I also found out from our favorite nurse that he was aggravated that I wouldn't listen to him about the port! ,
 I spoke to another doctor in the practice and threatened to find another hospital if they could not accommodate our wishes and correspond with our specialist. Luckily my new doctor is awesome and frequently works with our specialists, researches thal and Even looks to me for information so he can assist his other patients who are not as knowledgeable.

Sometimes, it really takes time. The key is to stand by your decisions and if u r unsure reach out to someone on the board. That was and still is the key to our sanity.

Good luck..

This is very common with doctors uneducated about  thal. The doctor I had with my first son was so focused on keeping the iron down he tried to prolong transfusion intervals and my son rarely stayed above 9.  Before I even  my son was born I knew what I would be dealing with so I interviewed doctors in the area to see if they would work with our specialist. Although he said he would...he never took her advice.

This Same doctor would tell me I was torturing my son by not putting a port in him and told me that if he had cancer a port would be necessary. I was shocked that he even made such a reference but I definitely second guessed myself for a bit. I mean, he's a educated doctor right? I should trust every decision he makes?!

But, as Andy said they r not the specialist. In this case U will probably know more about thal than they even care to know. It's difficult to break through but sometimes WE need to educate them, and stand up for our children.  I  finally got fed up with my doctor after he refused to let the nurse who we were most comfortable with access a line in him. He knew that we absolutely hated the iv team at the outpatient unit and he apparently wanted to teach us a lesson for being 20 minutes late to our appointment! I was devastated that someone could punish a child like that. I also found out from our favorite nurse that he was aggravated that I wouldn't listen to him about the port! ,
 I spoke to another doctor in the practice and threatened to find another hospital if they could not accommodate our wishes and correspond with our specialist. Luckily my new doctor is awesome and frequently works with our specialists, researches thal and Even looks to me for information so he can assist his other patients who are not as knowledgeable.

Sometimes, it really takes time. The key is to stand by your decisions and if u r unsure reach out to someone on the board. That was and still is the key to our sanity.

Good luck..

I agree, many docs are stubborn. When I was months old, the first doc I used to go at was also a stubborn lady, didn't found my veins easily, disallowed my parents to keep a watch at me (I think)  and also told that I won't live past a few years. After going a time or two there with futile efforts, my parents in rage took me out of there from half a transfusion and we never went back there.

I now have awesome set of friendly-family doctor. Also my physician listens to me a lot and he's a very calm person and not unlike other stubborn weirdos out there.

I'm sure you shall find a good set of doctors if now now, sometime later; it may take some time. Meanwhile, try to take visits at other hospital and see how doctors are there, what are their views about thalassemia and if your son can get a better treatment there than the current hospital, etc.

Best,

-P.

Yes, the decision about the minimun hb level before trasfusion it's most important goal.
It's better maintain high hb level with a lot of trasf or maintain low iron level ? this is the question!
our specialist doctor has prescipted regular check for head x ray to valutation bone grow, and liver and spleen eco to determinate the volume.
This is another approach for better decision.....
Certainly hb level below 9 ....it's time to trasfuse....

This is from the Standards of Care Guidelines for Thalassemia.

Hemoglobin H–Constant Spring is the most common
nondeletional alpha-thalassemia mutation associated with
hemoglobin H disease. Hemoglobin H–Constant Spring disease
has significantly more ineffective erythropoiesis. The laboratory
and clinical course of hemoglobin H–Constant Spring disease is
more severe than hemoglobin H disease. The average hemoglobin
is 2 g/dL less than in deletional hemoglobin H disease. The mean
corpuscular volume is a near-normal 72 fL, compared to 59 fL for
deletional hemoglobin H disease. Most patients have moderately
severe splenomegaly, and over 50 percent require splenectomy.
Splenectomy often results in improved hemoglobin levels but
is associated with a high rate of portal vein thrombosis. Ninety
percent of patients with hemoglobin H–Constant Spring disease
have been intermittently transfused, and up to 40 percent have
required repeated transfusions, particularly in early infancy and in
later adulthood. Iron overload occurs in 75 percent of patients by
adulthood.

I believe the measurement of the skull is the most accurate way to determine if transfusions are required more frequently in intermedia cases. It should never be as frequent as with beta thal major, but eventually the iron load will have to be addressed.

Thanks everyone for sharing your opinions.  Much appreciated. My son just received his second transfusion and we pushed it ahead a few days.  We are traveling to CHOP for another appointment next week so looking forward to asking lots of questions.

Hi Mike, I was just there on monday. Listen to the Doctors at CHOP, they know what they are talking about and have hands on experience with thal. Relax and once you get a routine it gets easier. We go every 3 weeks so if you ever need anything please just contact me.

James