I know that I have posted about this many times before, but we are seeing a new doctor in August, and I am trying to get my thoughts together. It is a doctor at the same clinic that we currently go to, so if anyone has any other suggestions near the Boston area, I would love those names as well. I think we may be happier trying a different clinic, because I don't think one doctor will change what another doctor is saying, when they are in the same clinic.
Just a re-cap of our story - I know many have read it before, but just in case.
I have 4 kids. ODS is 9, ODD is 8, and the twins are 6, almost 7. ODD and YDS are dx with CRMS.
ODD, Lillian has been sick since birth. She was on TPN for two years, is still considered FTT (48 pounds at 8 1/2), is PI, and has frequent respitory/ear/sinus infections. She is on her 6th set of ear tubes, has had ear and sinus polyps, and has had frequent pneumonias. She currently takes zenpep 20, 4 with meals and snacks, source CF, fluticasone, albuterol, simply saline, and omeprazol. Her PFTs are usually lower than the doctor likes, but come up with albuterol. She has had 4 sweat tests - 56,59,39, and 11 (this was in the past few months).
According to the ambry test, she has the S1235r mutation. She is dx with CRMS, and is not recieving chest PT. She cultured staph when she was bronched in November.
YDS, Jack is also pancreatic insufficient. He takes Creon 12,3 with meals and snacks. He weighs 35 pounds and is also FTT. He gets pnuemonia a few times each year, always diagnosed by x-ray. He had a partially collapsed lung about 6 months ago, that respnded to treatment right away. He frequently - a few times a day coughs up mucus, often blood tinged. He has had 3 negative sweat tests - 36, 59, and 20. According to the pulm, his fingers are slightly clubbed, although I do not see it. He has cultured both staff and hemophilus influenza. He takes creon12, omeprazole, singular, fluticasone, flovent, and singulair.
Both kids are on enhanced contact precautions at the hospital.
Ambry also showed that he had the S1235R mutation, but nothing else.
Honestly, I don't care if they are dx with CF, or CRMS, or whatever, as long as they get the stuff they need.We seem to be treating the issues as they arise, but their doctor is not prescribing chest PT, and insurance will not cover a vest or any of the stuff, since they are not dx with it. I worry that without doing chest PT, their lungs will get worse.
Their doctor feels that they are just a carrier of the S1235R mutation, and that all the issues they have are due to being carriers. He feels that their upper respitoary infections respond to the antibiotics, and that to have them do chest PT would be overkill, since it takes so much time.
So, if anyone has the name of a great doctor in Boston that could give us a second opinion, that would be great. Also, any questions to ask at our second opinion appointment would be wonderful as well.
Maybe I am crazy, and there really is nothing more going on than them being carriers, but I don't know.
Thanks!
Just a re-cap of our story - I know many have read it before, but just in case.
I have 4 kids. ODS is 9, ODD is 8, and the twins are 6, almost 7. ODD and YDS are dx with CRMS.
ODD, Lillian has been sick since birth. She was on TPN for two years, is still considered FTT (48 pounds at 8 1/2), is PI, and has frequent respitory/ear/sinus infections. She is on her 6th set of ear tubes, has had ear and sinus polyps, and has had frequent pneumonias. She currently takes zenpep 20, 4 with meals and snacks, source CF, fluticasone, albuterol, simply saline, and omeprazol. Her PFTs are usually lower than the doctor likes, but come up with albuterol. She has had 4 sweat tests - 56,59,39, and 11 (this was in the past few months).
According to the ambry test, she has the S1235r mutation. She is dx with CRMS, and is not recieving chest PT. She cultured staph when she was bronched in November.
YDS, Jack is also pancreatic insufficient. He takes Creon 12,3 with meals and snacks. He weighs 35 pounds and is also FTT. He gets pnuemonia a few times each year, always diagnosed by x-ray. He had a partially collapsed lung about 6 months ago, that respnded to treatment right away. He frequently - a few times a day coughs up mucus, often blood tinged. He has had 3 negative sweat tests - 36, 59, and 20. According to the pulm, his fingers are slightly clubbed, although I do not see it. He has cultured both staff and hemophilus influenza. He takes creon12, omeprazole, singular, fluticasone, flovent, and singulair.
Both kids are on enhanced contact precautions at the hospital.
Ambry also showed that he had the S1235R mutation, but nothing else.
Honestly, I don't care if they are dx with CF, or CRMS, or whatever, as long as they get the stuff they need.We seem to be treating the issues as they arise, but their doctor is not prescribing chest PT, and insurance will not cover a vest or any of the stuff, since they are not dx with it. I worry that without doing chest PT, their lungs will get worse.
Their doctor feels that they are just a carrier of the S1235R mutation, and that all the issues they have are due to being carriers. He feels that their upper respitoary infections respond to the antibiotics, and that to have them do chest PT would be overkill, since it takes so much time.
So, if anyone has the name of a great doctor in Boston that could give us a second opinion, that would be great. Also, any questions to ask at our second opinion appointment would be wonderful as well.
Maybe I am crazy, and there really is nothing more going on than them being carriers, but I don't know.
Thanks!