My daughter doesn't cry anymore

[AmbersMommy]

Hi, My daughter sees Dr. B. She was diagnosed with PANDAS and now a few days ago with Lyme. We are scheduled for IVIG mid-September. My daughter doesn't seem to be interested in anything anymore other than playing games on the computer or watching TV. She is 6. She has hysterical laughing fits. One thing that really bothers me is that she doesn't cry anymore. I thought about it today and I don't think I have seen her cry more than 2 times in the past 6 months. She wacked her head today really hard on the edge of a table and it didn't even seem to phase her. Can anyone give me some insight on this??

 

(Just an FYI...I used to be LisaMarie on this forum, but I changed my email address and never got the email the site was supposed to send me. I tried numerous times to reconfirm, and I couldn't figure out how to contact the administrators of the site, so I just used another email address and signed on with a new user name. I like the name AmbersMommy better anyway.)

[KeithandElizabeth]

My son reached this "zoned out" stage as well! He also has lyme disease and he is 5 months into lyme treatment and he is doing really well and is no longer "zoned out" and is completely interactive with his friends and family now. He did reach a stage where he could not even sit at the table and eat dinner with us. So, I really feel that once your daughter begins to get rid of the infections, she will begin to cry and interact again.

 

Elizabeth

[AmbersMommy]

Thank you! It helps to know someone else has gone through something similar.

[philamom]

Will you be seeing a doctor for the lyme diagnosis?

[thereishope]

I wonder if it's a sensory thing. For some kids, it's the opposite. If you just brush up against them and give a light tickle, it causes pain.

 

 

She wacked her head today really hard on the edge of a table and it didn't even seem to phase her. Can anyone give me some insight on this??

 

[AmbersMommy]

Will you be seeing a doctor for the lyme diagnosis?

 

Yes, but I am not sure who, and I am not sure when!! Dr. B. just had my dd get additional testing for co-infections to Lyme yesterday. It is going to take at least 3 days to get those results. I have been told that Dr. B. is in contact with a Lyme literate doctor, but I think I would like to bring her to a doctor and not filter the information to me through Dr. B. I trust him, but Lyme is not his specialty. Also, Dr. B. is 3 1/2 hours away and it is a whole day ordeal to get there and back.

 

My approach right now is going to be to send the following paper to her pediatrician who is very open-minded, and see if she would consider treating Amber for Lyme based on the treatments outlined in this paper:

 

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

 

If she would rather not, I will find someone who will. It is so frustrating that time is of the essence in treating things like PANDAS and Lyme, and it takes soooo much time to get anything done.

 

We are going to be starting IVIG in about 2 weeks. At least that will reset her immune system and help her fight things, whatever they may be.

[AmbersMommy]

My son reached this "zoned out" stage as well! He also has lyme disease and he is 5 months into lyme treatment and he is doing really well and is no longer "zoned out" and is completely interactive with his friends and family now. He did reach a stage where he could not even sit at the table and eat dinner with us. So, I really feel that once your daughter begins to get rid of the infections, she will begin to cry and interact again.

 

Elizabeth

 

Did he have any co-infections? What treatments did you use to get rid of the Lyme?? How long did the zoned out stage last?? I'm glad your son is doing well!

[philamom]

Will you be seeing a doctor for the lyme diagnosis?

 

Yes, but I am not sure who, and I am not sure when!! Dr. B. just had my dd get additional testing for co-infections to Lyme yesterday. It is going to take at least 3 days to get those results. I have been told that Dr. B. is in contact with a Lyme literate doctor, but I think I would like to bring her to a doctor and not filter the information to me through Dr. B. I trust him, but Lyme is not his specialty. Also, Dr. B. is 3 1/2 hours away and it is a whole day ordeal to get there and back.

 

My approach right now is going to be to send the following paper to her pediatrician who is very open-minded, and see if she would consider treating Amber for Lyme based on the treatments outlined in this paper:

 

http://www.publichealthalert.org/pdf/LYMDXRX%202008-October.pdf

 

If she would rather not, I will find someone who will. It is so frustrating that time is of the essence in treating things like PANDAS and Lyme, and it takes soooo much time to get anything done.

 

We are going to be starting IVIG in about 2 weeks. At least that will reset her immune system and help her fight things, whatever they may be.

 

Did you run the coinfections thru Igenex? We also have a diagnosis of lyme. Can you pm the llmd who Dr. B is in contact with? Thanks!

[KeithandElizabeth]

Yes, at one point in time he had lyme, babesia, bartonella, mycoplasma and strep.

 

We began this journey doing monthly IVIG's and I think that the IVIG's were creating too much of a herx and this is when he completely zoned out. We stopped doing the IVIG's and decided to follow Dr. K's approach of treating the lyme first and then doing the IVIG when we were done treating the infection and our son's last IVIG was 7 months ago. The first 3 months of lyme treatment was bumpy, but we saw an upward trend each month.

 

Our son has been on Azithromycin and Omnicef for almost 5 months and then the last month, he has been on tindamax for the cysts. He has also been on mepron for the babesia.

 

Elizabeth