It's been a while

[mandyknowles]

Hey Guys its been a while since I have been on here. Just wanted to give an update of where we are in terms of the pandas and lyme.

 

My daughter still has the chest spasm, quit breathing, jerking issues. We are waiting to get into a ped cardiologist because apparently her heart "paused" for too many seconds! DUH, i have been telling drs this for a year now. The age regression is GONE!!! That is the best part of all this. I thought I was going insane. As you all know, we had the IVIG in August and I couldnt really tell a difference in her, so we probably wont do another one, since it cost me so much and there wasnt a difference.

 

She still isnt in school and they finally got her IEP up and going so that is good news as well.

 

Overall, the only issue she has at this very moment are the breathing issues, so we will see what happens next.

[peglem]

Hey Guys its been a while since I have been on here. Just wanted to give an update of where we are in terms of the pandas and lyme.

 

My daughter still has the chest spasm, quit breathing, jerking issues. We are waiting to get into a ped cardiologist because apparently her heart "paused" for too many seconds! DUH, i have been telling drs this for a year now. The age regression is GONE!!! That is the best part of all this. I thought I was going insane. As you all know, we had the IVIG in August and I couldnt really tell a difference in her, so we probably wont do another one, since it cost me so much and there wasnt a difference.

 

She still isnt in school and they finally got her IEP up and going so that is good news as well.

 

Overall, the only issue she has at this very moment are the breathing issues, so we will see what happens next.

Was the age regression gone before the IVIG? Was the IVIG done to address the chest spasm/breathing issues? Glad to hear some things have gotten better, but those breathing issues sound so scary!

[eljomom]

Hi there,

I'm sorry if I don't know your story...but the "chest spasm" caught my attention. I have been wondering about another child of mine, and her "chest pain" she has complained about off and on for the past couple years. Along with headaches in the same way. Her ped. listened to her chest and said her heart sounds fine....probably all from constipation. Does your dd say her chest "hurts"?

Thanks for sharing...

[mandyknowles]

Hey Guys its been a while since I have been on here. Just wanted to give an update of where we are in terms of the pandas and lyme.

 

My daughter still has the chest spasm, quit breathing, jerking issues. We are waiting to get into a ped cardiologist because apparently her heart "paused" for too many seconds! DUH, i have been telling drs this for a year now. The age regression is GONE!!! That is the best part of all this. I thought I was going insane. As you all know, we had the IVIG in August and I couldnt really tell a difference in her, so we probably wont do another one, since it cost me so much and there wasnt a difference.

 

She still isnt in school and they finally got her IEP up and going so that is good news as well.

 

Overall, the only issue she has at this very moment are the breathing issues, so we will see what happens next.

Was the age regression gone before the IVIG? Was the IVIG done to address the chest spasm/breathing issues? Glad to hear some things have gotten better, but those breathing issues sound so scary!

 

I wanna say yes the age regression was gone but its been so wierd i cannot remember...and yes the breathing is really scary...i hope there is something the cardiologist can fix

[mandyknowles]

Hi there,

I'm sorry if I don't know your story...but the "chest spasm" caught my attention. I have been wondering about another child of mine, and her "chest pain" she has complained about off and on for the past couple years. Along with headaches in the same way. Her ped. listened to her chest and said her heart sounds fine....probably all from constipation. Does your dd say her chest "hurts"?

Thanks for sharing...

 

 

Her chest hurts, yes, after i have to breath in her mouth because she stops breathing...its a very insane thing and all her lyme dr can tell me is that he sees it...after a year and a half of this, im taking other measures since he doesnt tell me what exactly to do for it.

[tpotter]

My DS complains of chest (and other parts of the body) shocks...they knock him to the floor. We've had everything checked, including possible seizures (he has seizures and is being treated for them, but the behavior doesn't happen with the abnormal brain waves.) But, he doesn't stop breathing. I think that's a great idea to see a cardiologist. For the record, I know you spent a lot on the IVIG, but it does frequently take more than one treatment (my DS 15 has had 4, and my DS 18 has had 3.) If the age regression has stopped (after IVIG,) then I would say it may very well have been from that. I noticed in my DS 18, that he jumped from about 7 years old (socially) to about 13/14 years old after just the either the first or second IVIG (the first there were tremendous gains, so I'm not sure where it started, but it was very noticeable.) We've had other gains since then, but still definitely some issues.

 

Let us know how your DD does with the ped. cardiologist.