Your little girl has been through a lot. So have you. I ache for everyone in your family. Going through this must be so traumatic. It is truly life-altering for the entire family.
I am rather new to the board but not to Crohn's. I have a sister with very severe short bowel who is on long term TPN with a port. At various times she has had PICC and central lines as well. Our son was dxd with CD at 10 and we did EN via NG tube twice. He also has significant sensory issues. I thought he was never going to stop smelling his food before he ate it and he only started eating foods that were mixed together about the time he turned 13. It took quite some time for my son to be diagnosed and he has done Humira shots.
I read through all your posts so far and have some questions and thoughts to share.
1. I suggest that if there is any way for you to go for a 2nd opinion to Mayo Rochester or to CHOP in Philadelphia that you do so. Both those places will help you from their end make arrangements to come (or so I have heard about CHOP and know from personal experience about Mayo).
2. I understand the choice of TPN over EN but wonder about the possibility of at least trying an NG tube to do feedings. And it could be attempted at the same time she is doing TPN since that has clearly not been enough on it's own or in combo with Remicade (or so it seemed from your posts). In Europe/Canada/Japan the preferred approach is EN over TPN because the research has supported this approach as the most likely to bring about remission.
3. There are also a number of ways to try to make oral EN supplementation or exclusive EN more palatable for her that may work. You don't know if you don't try. I would guess that there are things you would never have thought she will eat that she does and other things that she rejects you were sure she would eat. May be the same with EN. Or at least some flavors/kinds.
4. They need to be closely monitoring her vitamin levels, especially vit. A and Vit D to ensure she does not sustain damage to her vision and bones that may be irreversible. If they are not checking these (and they really should be checking her other vitamin levels too) then you need to get on them about this.
5. There is absolutely NO reason for her TPN to have been inadequate for that period of time. As I understand it, the home health agency providing her TPN should be monitoring her weight and drawing labs on a weekly basis and requesting adjustments in her TPN formulation accordingly. If the agency you are working with does not have a dietician and pharmacist dedicated to handling TPN patients then I strongly suggest you look for one that offers this service. You won't find them operating out of claremont. Any agency with that level of care (only one may be a Coram office) is going to be in Tulsa or even OK City. Your health insurance may or may not contract with them but if they don't I believe it would probably be worth appealing any denial in order to get services from a highly qualified service.
6. If they anticipate that she will continue to require TPN either continuously or intermittently for much longer then you may want to discuss placement of a port with the GI. Especially in light of the blood clot, this may be an appropriate alternative. PICC lines that are placed to allow TPN carry many of the same risks as a port because they must be advanced into the Vena Cava. They are normally replaced every 4 to 6 weeks, a procedure that normally requires sedation and placement by radiology. A port is placed by a surgeon once and can remain in place 5 to 7 years. There are other considerations for each one that you will have to weigh but I would start the discussion now so you have time to think it over, especially if she develops another clot.
7. Why didn't they start either 6-MP or Methotrexate at the same time as Remicade? In a child this sick, frankly, if you are going to do Remicade I would think you want to give her the best possible shot at making it work as long as possible. That means giving her both kinds of meds if you are going to use the research as a guide.
8. Humira shots hurt. They are given every other week in the belly or thighs. I suspect that your daughter is going to have trouble cooperating with their administration and you will be the one who has to give them to her. I suggest that you want to maximize the time she stays on Remicade if it is working for her. If it is not working for her then perhaps Cimzia would be a better choice as it is given as two shots once a month. Same number of shots but you only have to do it once a month. I have heard that Cimzia is less painful but do not know from personal experience.
9. If there is any way to find your daughter a therapist who has experience helping children who have experienced significant abuse (not she that she has been abused in a traditional sense) I would do that and start taking her to see that person now. Experiencing this kind of medical trauma and physical illness has long term psychological/emotional effects.
10. You need a new pediatrician frankly. The advice about ignoring the swelling was, well, malpractice. That doctor has little to no experience with kids like yours and you need one who has the experience to help you. This stuff is probably not going to go away any time soon. We have a terrific pediatrician and he is essential to making our long distance partnership with our ped GI work well. He is part of a group that are all very good although some are better than others. We drive 30 minutes to get to his office. His group is affiliated with the tertiary care center in our city. You are 30 minutes from Tulsa and that's where you need to look for a peds who has the experience you need. She may need emergency admission in Tulsa and you need a pediatrician who has admitting privileges there, among other things.
Many hugs. You must keep in mind that this is going to be a long haul and care for yourself and the rest of your family too. It is a tough balancing act and I hope your spouse is there every step of the way, going to doctor's appointments and helping as much as possble.
ika: Happy Dance time! As long as she keeps it by next Monday we'll be golden!
