IVIGtreatment

[PANDAS_Denmark]

Hi -

 

I am the mother of a 7year old boy, diagnosed with PANDAS.

 

My son was treated with IVIG/immunoglobulin half a year ago.

 

The result was amazing – both his tics and OCD improving dramatically.

 

However : Shortly after the treatment my son (at that time treated with Pencillin V) was having numerous infections, and his tics and OCD was back as strong as ever :-(.

 

I have been told, that IVIG/immunoglobulin can help only on an ongoing autoimmune proces, and that is why my son reacted the way he did : With a new autoimmune proces leading to new symptoms, when he was infected again.

 

Since then my sons penicillinprofylaxis is changed (from Penicillin V to Amoxicillin – and latest to Azithromycin).

 

When my son was treated with IVIG/immunoglobulin, the doctors told me, that I was to expect, that the treatment was to be repeated with 6-8 weeks interval.

 

Since the first treatment however it has been impossible for me to get the doctors to repeat the treatment.

 

All of a sudden they say, that there is no evidence, that this treatment help on PANDASchildren. I believe, that is not a question of evidence, but a question of money !

 

I am told to, that I will simply have to accept, that my son is having a cronical (and evolving) disease.

 

I know that my son is having PANDAS, and that PANDAS is a cronical disease. But I cannot accept, that my son isn´t getting the treatment, that might help him.

 

As such I am trying to find a doctor/a hospical/a clinic, that is willing and qualified to treat my son with IVIG (very well knowing, that this is very expensive, and that I will have to pay myself).

 

Does any of you know such a doctor/hospital/clinic, I would be so very thankfull, if you would share this knowledge with me.

 

I life with my son in Denmark (Scandinavia), but I am willing to travel around the world, if this might help my son in any way.

 

Sincerely -

PANDAS_Denmark

[janey]

Hi there,

 

I used IVIG treatments during my pregnancy with my son. I had a problem with my immune system that would attack the fetus when I became pregnant. I found a doctor, Doctor Beer (who is now retired) that recommended that I have IVIG treatments before getting pregnant, and then 5 or 6 times during the pregnancy. I got my IVIG infusions sent to me on dry ice from Alpha Therapeutics in California. At the time, they were charging $1,200 per shipment. I then took it to my infertility clinic where a nurse would infuse me with it. This was over nine years ago, but I know that they are still very much around. You would need a doctor to call in a prescription into them. Then a coordinator contacts you to set up ship dates/payment options. I'm sure they can ship anywhere. I found this was the best way to get them.

 

I hope this helps.

Janey

[P_Mom]

Hi -

 

I am the mother of a 7year old boy, diagnosed with PANDAS.

 

My son was treated with IVIG/immunoglobulin half a year ago.

 

The result was amazing – both his tics and OCD improving dramatically.

 

However : Shortly after the treatment my son (at that time treated with Pencillin V) was having numerous infections, and his tics and OCD was back as strong as ever :-(.

 

I have been told, that IVIG/immunoglobulin can help only on an ongoing autoimmune proces, and that is why my son reacted the way he did : With a new autoimmune proces leading to new symptoms, when he was infected again.

 

Since then my sons penicillinprofylaxis is changed (from Penicillin V to Amoxicillin – and latest to Azithromycin).

 

When my son was treated with IVIG/immunoglobulin, the doctors told me, that I was to expect, that the treatment was to be repeated with 6-8 weeks interval.

 

Since the first treatment however it has been impossible for me to get the doctors to repeat the treatment.

 

All of a sudden they say, that there is no evidence, that this treatment help on PANDASchildren. I believe, that is not a question of evidence, but a question of money !

 

I am told to, that I will simply have to accept, that my son is having a cronical (and evolving) disease.

 

I know that my son is having PANDAS, and that PANDAS is a cronical disease. But I cannot accept, that my son isn´t getting the treatment, that might help him.

 

As such I am trying to find a doctor/a hospical/a clinic, that is willing and qualified to treat my son with IVIG (very well knowing, that this is very expensive, and that I will have to pay myself).

 

Does any of you know such a doctor/hospital/clinic, I would be so very thankfull, if you would share this knowledge with me.

 

I life with my son in Denmark (Scandinavia), but I am willing to travel around the world, if this might help my son in any way.

 

Sincerely -

PANDAS_Denmark

 

 

 

 

Hi PANDAS Denmark,

DKRESmith here, wondering if you received my reply to you? Have you made any progress? Please let me know, I am wondering how you and your son are doing? What is your story with your son and how did you get the first dose of IVIG initially?

 

Sincerely,

DKRESmith

[tlkinser]

Hi Janey,

I consulted with Dr. Beer via the internet when I was trying to conceive my first daughter. I used heparin and lovenox during all of my pgs due to an autoimmune blood clotting disorder. I wonder if our autoimmune disorders are similar? My 5 yr old son presented vocal and motor tics nearly overnight last spring during a strep infection. My 6.5 yr old daughter also has vocal and motor tics on a milder level and was dx with strep last spring as well when her tics spiked. We are still trying to figure out how to treat them both, and if this is TS, PANDAS, or what?! So much to learn...

 

Just curious about your autoimmune issues and how/if you think it may have affected your children.

 

Thanks,

tlk

[janey]

[

[janey]

Hi Janey,

I consulted with Dr. Beer via the internet when I was trying to conceive my first daughter. I used heparin and lovenox during all of my pgs due to an autoimmune blood clotting disorder. I wonder if our autoimmune disorders are similar? My 5 yr old son presented vocal and motor tics nearly overnight last spring during a strep infection. My 6.5 yr old daughter also has vocal and motor tics on a milder level and was dx with strep last spring as well when her tics spiked. We are still trying to figure out how to treat them both, and if this is TS, PANDAS, or what?! So much to learn...

 

Just curious about your autoimmune issues and how/if you think it may have affected your children.

 

Thanks,

tlk

 

 

Hi Tlk,

 

I'm not sure that my immune issues had anything to do with my son's tics. I had a mild form of OCD as a child, and my husband exhibits minor OCD tendencies. So if anything, I'm thinking it's genetic. It's an interesting theory, however. My son's tics came on slowly after being exposed to numerous hours of Television while at a baby sitter. He developed an eye blinking tic. After taking away the electronics for a month, the tic went away. Several years later he developed a nose twitch after having a stressful day at school. It seems that stress brings on the tics, and screen time makes it worse. He had a throat clearing tic, which seemed to go away overnight after starting him on Magnesium Taurate. Have you tried that? Have you tried to contact Alpha Theraputics in CA?

 

Best wishes,

Janey