Discussion Forums > Thalassemia Major

Conflicting Doctor's opinions.....

(1/2) > >>

MikeD:
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??

Pratik:

--- Quote from: MikeD on March 13, 2013, 12:55:09 PM ---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??

--- End quote ---
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.

Andy Battaglia:
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

Thal-mom:
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

Cari:
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..

Navigation

[0] Message Index

[#] Next page