We are home!

[JacobKaden]

After a horrible three months, we are finally home. The new meds are working. We are hoping being home now will help Jacob get back to his baseline.

His neurologist told us today that Jacob does not fit the profile for CP. She said it does not make sense that his MRI is normal or that his condition would deteriorate. She still wants to do further investigation on an outpatient basis, including a muscle biopsy. She said we may not find answers, but she wants to keep searching. This is "troubling" as with CP we knew what to expect. Now I feel like we are in unchartered territory. For now, I'm just so relieved Jacob is alive and seemingly on the mend.

[Louise D]

Glad he is on the mend.

Louise D

[jaysmom]

Praying for better days!

[principe]

Is reassuring when a doctor is willing to go all the way to find answers. I'm so glad for that. I'm praying this neurologist finds those answers to make the cure more effective. So happy that Jacob is back home and doing better. I wish him all the best. I'm praying for your family.

[Kate]

Great to hear that you are home!

I'm sure that it is a bit troubling-once you get "use" to a dx...it's scary to change or to think that it isn't right. Ugh-I don't even know what to "hope"...hugs Kim-I think of you guys often!

[DAELOVIC]

Congratulations! Being home is the best medicine we've found...

[Ainsley's Mom]

Congrats that Jacob is well enough to go home! That's so great to hear. I'm sorry about the diagnosis. It can be a bit unsettling I'm sure to think you know what you are dealing with and then have it all change. It's just labels, right? I'm not sure what the MRI was, meaning brain? I remember reading that CP is not always detectable on brain scans. The other thing, is has he deteriorated? Or has he just been sick? If you are sick and don't use your muscles they will deteriorate quickly. My son's friend a month or so ago had a virus with a fever and after a few days he couldn't walk not even to the bathroom. This is very rare. I believe it was this: http://www.myositis.org/template/page.cfm?id=2 But if a totally typical and healthy kid can have that happen, then I would think anyone could. He rebuilt his strength over the following week or two. He wasn't allowed to do too much physical activity, so for example he couldn't play basketball. And my father (adoptive so not bio) had muscular dystrophy and when he fell and was unable to walk he would lose muscle quickly. Though sadly in his case the muscle could not be rebuilt and was gone forever. So I guess what I'm trying to say is without know all the details I can't help but wonder if he's just deteriorated from illness and that it is temporary? I am hoping. If you find out more I hope you'll let us know. I'm so glad things are better.

[JacobKaden]

Originally Posted by Ainsley's Mom

Congrats that Jacob is well enough to go home! That's so great to hear. I'm sorry about the diagnosis. It can be a bit unsettling I'm sure to think you know what you are dealing with and then have it all change. It's just labels, right? I'm not sure what the MRI was, meaning brain? I remember reading that CP is not always detectable on brain scans. The other thing, is has he deteriorated? Or has he just been sick? If you are sick and don't use your muscles they will deteriorate quickly. My son's friend a month or so ago had a virus with a fever and after a few days he couldn't walk not even to the bathroom. This is very rare. I believe it was this: http://www.myositis.org/template/page.cfm?id=2 But if a totally typical and healthy kid can have that happen, then I would think anyone could. He rebuilt his strength over the following week or two. He wasn't allowed to do too much physical activity, so for example he couldn't play basketball. And my father (adoptive so not bio) had muscular dystrophy and when he fell and was unable to walk he would lose muscle quickly. Though sadly in his case the muscle could not be rebuilt and was gone forever. So I guess what I'm trying to say is without know all the details I can't help but wonder if he's just deteriorated from illness and that it is temporary? I am hoping. If you find out more I hope you'll let us know. I'm so glad things are better.

The Neurologist who recommended artane suspects the virus triggered the "deterioration" but he suspects it's temporary. It's Jacob's regular Neurologist that thinks he's deteriorating......I don't like her by the way and was hoping the other Neurologist would now follow him, but she knows his whole history and knows her stuff, just has a poor bedside manner.

Yes, it was a MRI of his brain that I was referring to and we have always been told that a normal MRI doesn't necessarily tell the whole picture, so not sure why she's making such a big deal about it now......I think she just doesn't like it when a patient doesn't follow the profile or has her stumped......hello, this is Jacob He has definitely not been like this before, but he has also never had a respiratory virus and viral pneumonia before........stay tuned.

[Ainsley's Mom]

Originally Posted by JacobKaden

The Neurologist who recommended artane suspects the virus triggered the "deterioration" but he suspects it's temporary. It's Jacob's regular Neurologist that thinks he's deteriorating......I don't like her by the way and was hoping the other Neurologist would now follow him, but she knows his whole history and knows her stuff, just has a poor bedside manner.

Yes, it was a MRI of his brain that I was referring to and we have always been told that a normal MRI doesn't necessarily tell the whole picture, so not sure why she's making such a big deal about it now......I think she just doesn't like it when a patient doesn't follow the profile or has her stumped......hello, this is Jacob He has definitely not been like this before, but he has also never had a respiratory virus and viral pneumonia before........stay tuned.

Thanks for the additional info. It sounds to me like he was super sick. My fingers will be crossed that now that he's home he is able to rebuild his strength and you find out that he doesn't have a new diagnosis. Hang in there! And check in soon and let us know how you all are doing, okay?

[principe]

Mom to Jacob my opinion is that you should consider switching doctors. If you don't feel comfortable with this doctor is not a good thing. Plus you need a doctor that's honest and positive about a patient. The doctor needs to be open minded too like this other neurologist that thinks the virus triggered the deterioration seems open minded to the possibilities but to just think that Jacob is deteriorating withouth seeing the whole picture is very narrow minded coming from a doctor.