How to cope? This has been more than 2 months.

[DeeEast]

And talked to the doctor and he still says it is between TEC and MCS. One is at one end of the one spectrum and the other is at the way end of the other spectrum. I actually talked to the Dr. tonight about a bone marrow transpant. That is not a good conversation.

[niccig]

I don't know what to say about how to cope. Big :hug5:and lots of P&PTs for an answer soon.

[JTsMom]

I'm so sorry it's still dragging on. :grouphug: Have you talked to the doctors office about whether there are any support groups out there that might work for you? Maybe think about finding a counselor? I can only imagine what it must be like to have endured this for 2 months. I wish I could say or do something that would help even a tiny bit. I know that so many of us here are praying for your family and sending good thoughts.

[MoJo]

Have you talked to the doctors office about whether there are any support groups out there that might work for you?

:yeahthat:

We'll keep praying; please continue to keep us posted.

[o_mom]

This must be so difficult for you. Perhaps it's time for a second opinion? I can't remember if you have pursued that yet.

[jenny]

I'm sorry. Have you considered getting a second opinion? I hope you don't have to resort to a bone marrow transplant.

If you and your family are not getting counseling at this time, I would highly suggest it. Ask for the hospital social worker, she can help you find support groups in your area. This is really important ... I think getting support for your other little ones and for you and your husband could help a lot.

Sending positive thoughts.

[Snow mom]

I agree with o_mom that maybe a fresh set of eyes will bring you some answers. Is there an expert on MCS or TEC that can be consulted? It sounds like they haven't seen any signs that it's MCS but haven't been able to rule it out because it isn't acting like TEC either. Maybe an expert on these diseases in particular can spot something that points to or away from these diagnoses. Or maybe a second opinion will put the pieces together to come up with something completely different.

[billysmommy]

I agree with o_mom that maybe a fresh set of eyes will bring you some answers. Is there an expert on MCS or TEC that can be consulted? It sounds like they haven't seen any signs that it's MCS but haven't been able to rule it out because it isn't acting like TEC either. Maybe an expert on these diseases in particular can spot something that points to or away from these diagnoses. Or maybe a second opinion will put the pieces together to come up with something completely different.


This sounds like a great idea. I'm so sorry this is still going on and you don't have a diagnosis yet. We're continuing to think of your family.

[mommy111]

Prayers and positive thoughts

[ThreeofUs]

The best thing for you to do is to see a counselor who specializes in this, and get into a support group. You should be able to do this through your hospital. If you can't, honestly that might be a sign that you're at the wrong place, because they don't have enough experience with kids' problems like this to have the necessary support for parents.

The next thing to do is to get your DS to a specialist and keep moving on getting a dx. Time is precious, and the support you'll get from a hospital with a lot of experience with this is incredibly useful for you and your DS.

P&PT.

[mecawa]

I'm so sorry you are still going through this. A 2nd opinion might help, we ended up having to do that after getting no answers about my DD for 3 months (different illnesses/diagnosis, but we were getting anything from a life threatning disease which causes cancer, to a metabolic problem, to just a dvlpt. problem, to a very rare serious congenetial problem, which it turned out she did have) Can you find a specialist that just deals with one of those things and get his or her input? Even a second opinion in general may help. It's more than frustrating.

Like others have mentioned it may help to talk to a social worker/counselor at the hospital or a child life specialist (if they have them), they are really great at listening and can sometimes explain procedures/tests in a different way then the docs do.

My thoughts and prayers are with you and your son.:hug:

[Fairy]

The best thing for you to do is to see a counselor who specializes in this, and get into a support group. You should be able to do this through your hospital. If you can't, honestly that might be a sign that you're at the wrong place, because they don't have enough experience with kids' problems like this to have the necessary support for parents.

The next thing to do is to get your DS to a specialist and keep moving on getting a dx. Time is precious, and the support you'll get from a hospital with a lot of experience with this is incredibly useful for you and your DS.

P&PT.

:yeahthat:

Thinking of you. :grouphug: