Bad morning

[tired mom]

This morning things were bad. Really bad. I thought for sure we were going to end up in the crisis unit and off to the psyc ward. With everything out of control and that stupid helpless feeling u feel when you don't know what to do to help your child. I swear if we ended up in the hospital they would admit me. Sometimes I feel like a lone soldier in this dirty war. The thought of having to explain my daughters condition to yet another person was overwhelming today. Yes, today I am weak, and the fight in me is getting weak too. I was at my wits end. Then Dr. T responded quickly and put things back into perspective. With 2 weeks off Biaxin and just recently starting up again we may be seeing a die-off. We are adding steroids to the mix so I am keeping my fingers crossed. I hope tomorrow starts off better...

[fuelforall]

This morning things were bad. Really bad. I thought for sure we were going to end up in the crisis unit and off to the psyc ward. With everything out of control and that stupid helpless feeling u feel when you don't know what to do to help your child. I swear if we ended up in the hospital they would admit me. Sometimes I feel like a lone soldier in this dirty war. The thought of having to explain my daughters condition to yet another person was overwhelming today. Yes, today I am weak, and the fight in me is getting weak too. I was at my wits end. Then Dr. T responded quickly and put things back into perspective. With 2 weeks off Biaxin and just recently starting up again we may be seeing a die-off. We are adding steroids to the mix so I am keeping my fingers crossed. I hope tomorrow starts off better...

 

 

Me too! paralyzing anxiety, never wants to set foot in his school again, they all hate him, etc.

Somehow a school staffer was able to walk him to school to her office, thank God she is an old friend. Wonder if I should add steroids back into the mix, he is healing from IVIG and it is ROCKY right now. It's been two and a half weeks.

[tired mom]

This morning things were bad. Really bad. I thought for sure we were going to end up in the crisis unit and off to the psyc ward. With everything out of control and that stupid helpless feeling u feel when you don't know what to do to help your child. I swear if we ended up in the hospital they would admit me. Sometimes I feel like a lone soldier in this dirty war. The thought of having to explain my daughters condition to yet another person was overwhelming today. Yes, today I am weak, and the fight in me is getting weak too. I was at my wits end. Then Dr. T responded quickly and put things back into perspective. With 2 weeks off Biaxin and just recently starting up again we may be seeing a die-off. We are adding steroids to the mix so I am keeping my fingers crossed. I hope tomorrow starts off better...

 

 

Me too! paralyzing anxiety, never wants to set foot in his school again, they all hate him, etc.

Somehow a school staffer was able to walk him to school to her office, thank God she is an old friend. Wonder if I should add steroids back into the mix, he is healing from IVIG and it is ROCKY right now. It's been two and a half weeks.

I hope things improve for you. We may be headed down the IVIG road too. It scares me.

[amy s]

This morning things were bad. Really bad. I thought for sure we were going to end up in the crisis unit and off to the psyc ward. With everything out of control and that stupid helpless feeling u feel when you don't know what to do to help your child. I swear if we ended up in the hospital they would admit me. Sometimes I feel like a lone soldier in this dirty war. The thought of having to explain my daughters condition to yet another person was overwhelming today. Yes, today I am weak, and the fight in me is getting weak too. I was at my wits end. Then Dr. T responded quickly and put things back into perspective. With 2 weeks off Biaxin and just recently starting up again we may be seeing a die-off. We are adding steroids to the mix so I am keeping my fingers crossed. I hope tomorrow starts off better...

 

 

Me too! paralyzing anxiety, never wants to set foot in his school again, they all hate him, etc.

Somehow a school staffer was able to walk him to school to her office, thank God she is an old friend. Wonder if I should add steroids back into the mix, he is healing from IVIG and it is ROCKY right now. It's been two and a half weeks.

I hope things improve for you. We may be headed down the IVIG road too. It scares me.

 

 

I feel your pain. I know a lot of us have been there. I am sorry that you are going through this right now. Every sentence you wrote, I can relate to. Don't be scared of IVIg. Things, for us did not get better until IVIg. Quality of life for everyone will improve so much, if IVIg works for your child. Don't let this get you down! You have to remain strong and keep fighting to get your child healthy. Some times I look back at the horrific experiences my family had with pandas and I don't know how we made it through at all. I am hoping that you will also look back and see how strong you can be. Hang in there!!!

[tired mom]

This morning things were bad. Really bad. I thought for sure we were going to end up in the crisis unit and off to the psyc ward. With everything out of control and that stupid helpless feeling u feel when you don't know what to do to help your child. I swear if we ended up in the hospital they would admit me. Sometimes I feel like a lone soldier in this dirty war. The thought of having to explain my daughters condition to yet another person was overwhelming today. Yes, today I am weak, and the fight in me is getting weak too. I was at my wits end. Then Dr. T responded quickly and put things back into perspective. With 2 weeks off Biaxin and just recently starting up again we may be seeing a die-off. We are adding steroids to the mix so I am keeping my fingers crossed. I hope tomorrow starts off better...

 

 

Me too! paralyzing anxiety, never wants to set foot in his school again, they all hate him, etc.

Somehow a school staffer was able to walk him to school to her office, thank God she is an old friend. Wonder if I should add steroids back into the mix, he is healing from IVIG and it is ROCKY right now. It's been two and a half weeks.

I hope things improve for you. We may be headed down the IVIG road too. It scares me.

 

 

I feel your pain. I know a lot of us have been there. I am sorry that you are going through this right now. Every sentence you wrote, I can relate to. Don't be scared of IVIg. Things, for us did not get better until IVIg. Quality of life for everyone will improve so much, if IVIg works for your child. Don't let this get you down! You have to remain strong and keep fighting to get your child healthy. Some times I look back at the horrific experiences my family had with pandas and I don't know how we made it through at all. I am hoping that you will also look back and see how strong you can be. Hang in there!!!

Thank you!!! Encouraging words on a much needed day. Glad to hear all is going well. Hearing positve outcomes definitly gives hope there are better days out there.

[fuelforall]

Very kind of you, Amy, and thanks for the great post yesterday.

Can't wait for the next month to go by and hopefully begin to see healing then. The first time he had IVIG, it did not take but it was not the right dosage, a bit low. This time we did the Dr. K protocol.

 

 

I feel your pain. I know a lot of us have been there. I am sorry that you are going through this right now. Every sentence you wrote, I can relate to. Don't be scared of IVIg. Things, for us did not get better until IVIg. Quality of life for everyone will improve so much, if IVIg works for your child. Don't let this get you down! You have to remain strong and keep fighting to get your child healthy. Some times I look back at the horrific experiences my family had with pandas and I don't know how we made it through at all. I am hoping that you will also look back and see how strong you can be. Hang in there!!!

[sf_mom]

Hang in there....

 

We have seen 'TRUE' healing for our older son since. If you are considering IVIG, I highly recommend to you go to a Dr. versed in PANDAS/IVIG.... Dr. B, Dr. K, Dr. L or now potentially Dr. T when he is up in running to provide services in May.

 

I too know our pain!!!!!!

Edited April 12, 2010 by SF Mom