Headed to IVIG tomorrow

[wornoutmom]

I can't believe this day is really here, but I think I'm as ready as I can possibly be for this. I'm really really dreading any set backs (particularly the return of the rages) but I'm feeling hopeful for the future. Remind me of this please if 2 weeks from now I am ready to jump off a cliff because it has all come roaring back. I am grateful to be doing it locally and not have the added stress of travel. I am grateful that I have 3 doctors advocating this for my son (if only it would make a difference to the insurance company!). I am grateful that all the hours of research and fighting I had to do to get someone to listen to me has finally seemed to come to fruition. We seemed to have settled on the fact that the huge exacerbation this year was likely a MycoP infection that won't go away ( and is leaving him vulnerable to catching every little bug it seems). He's been on full strength Biaxin and 1 steroid burst since April and the once daily 2-3 hour exorcist attacks have gone (last one was April 24th - we're going on 7 weeks!) We're hopeful the IVIG will allow him to progress further and will marvel if we see the anxiety/OCD fade. We plan to keep him on the full strength Biaxin for the summer to be safe - they just don't really know the protocol for MycoP like they do with strep - and if all is well we will start to reduce it. Nothing, of course, ever goes according to plan, but it at least feels good to HAVE one. Most of all, I am grateful for all of you, for all the guidance, support and knowledge you have shared. We would have NEVER NEVER NEVER gotten this far with out it. Hope to pay it forward someday. Keep us in your thoughts the next few days!!!!!!!!!

[kimballot]

You were the first person I connected with on the forum and I have been following you all along. My thoughts are with you and your family. I will be following closely- please tell us how things are going! All the best!

[Phasmid]

Will be thinking of you, praying for you, and hoping all goes well tomorrow.

[Fixit]

I have tears of hope and excitement!!!

that was beautifully written...

i look forward to hearing your progress.

i believe/ think that this onset for ds was do to myco p also...and his system won't stopp....

so maybe you will inspire me.....i will pray tonight and tomorrow that you get the perfect amount of what ever it is you need....

[bgbarnes]

I can't believe this day is really here, but I think I'm as ready as I can possibly be for this. I'm really really dreading any set backs (particularly the return of the rages) but I'm feeling hopeful for the future. Remind me of this please if 2 weeks from now I am ready to jump off a cliff because it has all come roaring back. I am grateful to be doing it locally and not have the added stress of travel. I am grateful that I have 3 doctors advocating this for my son (if only it would make a difference to the insurance company!). I am grateful that all the hours of research and fighting I had to do to get someone to listen to me has finally seemed to come to fruition. We seemed to have settled on the fact that the huge exacerbation this year was likely a MycoP infection that won't go away ( and is leaving him vulnerable to catching every little bug it seems). He's been on full strength Biaxin and 1 steroid burst since April and the once daily 2-3 hour exorcist attacks have gone (last one was April 24th - we're going on 7 weeks!) We're hopeful the IVIG will allow him to progress further and will marvel if we see the anxiety/OCD fade. We plan to keep him on the full strength Biaxin for the summer to be safe - they just don't really know the protocol for MycoP like they do with strep - and if all is well we will start to reduce it. Nothing, of course, ever goes according to plan, but it at least feels good to HAVE one. Most of all, I am grateful for all of you, for all the guidance, support and knowledge you have shared. We would have NEVER NEVER NEVER gotten this far with out it. Hope to pay it forward someday. Keep us in your thoughts the next few days!!!!!!!!!

Lots of positive thoughts and prayers going your way! May your IVIG be the healing you need and deserve as a family!

Look forward to hearing about your success!!

Brandy

[Iowadawn]

Wornoutmom-

 

Thoughts & prayers go your direction!! I am very interested in the mycoplasma pneumoniae component. What kind of blood results did you have?? DS11's most recent were IgM 1.89 & IgG 6.27 (.90 as the cutoff). The unsafe rages landed him in the hospital. THANK GOODNESS for the local doc, like yours, she has been "practicing" medicine for us. We have also had 2 IVIG's, but had never been able to get one of the PANDAS docs to put him on Biaxin. My gut said MP, and I asked our GP for it & she gave it. We have been told we can keep him on it. WE WILL.

 

ANyway, what kind of results did you have? Our son hasn't had symptoms. A year ago the IgG was 3.89 and IgM neg.

 

Just curious. Prayers & Good wishes!! Dawn

[Kayanne]

I'm praying and sending positive thoughts...good luck!!

[wornoutmom]

IowaDawn:

 

our IgMs were negative and positive IgGs. So we were a bit skeptical at first. We got no numbers from the lab here - just a "positive". We put him on Biaxin for 2 weeks, off for a week and then back on for 4 more weeks. He was improving He got another "virus" and coinciding rage day. We restested him at this point and still got back positive IgGs (so after 6 weeks of Biaxin). I have spoken to some hospital personell who say Myco P is usually a secondary infection from a virus and is very very hard to get rid of. They use up to 3 antibiotics at a time to get rid of it. I am looking into this further. But the "rage day" in April (during which he had uncontrollable arm movement and piano playing fingers - Dr T calls it episodic chorea) happened to be the day we tested CamKinase (back at 167) and then started a steroid. Been on Biaxin ever since. Rages are gone. Tics are minimal now. Now having some panic attacks, lots of anxiety, obsessive need to know what's happening/schedule and reassurance questioning and cleaning compulsions. Lots of cognitive confusion There are other longstanding OCD things but they are not so life interfering. But oh SO much better than before the Biaxin. We haven't had pos. strep cultures/bloodwork results in 3 years. But he was very very sick over and over this year with diagnosed sinus infections, H1N1 (we think) and a variety of "viruses" and URIs. We also found EBV antibodies and low ferritin. So we have no idea WHEN this MycoP infection was, but at this point the docs are fairly convinced this is the problem. Sounds like your son has had a recent infection with those positive IgMs. So glad your local docs see the light. Areyou seeing improvement?

 

Wornoutmom-

 

Thoughts & prayers go your direction!! I am very interested in the mycoplasma pneumoniae component. What kind of blood results did you have?? DS11's most recent were IgM 1.89 & IgG 6.27 (.90 as the cutoff). The unsafe rages landed him in the hospital. THANK GOODNESS for the local doc, like yours, she has been "practicing" medicine for us. We have also had 2 IVIG's, but had never been able to get one of the PANDAS docs to put him on Biaxin. My gut said MP, and I asked our GP for it & she gave it. We have been told we can keep him on it. WE WILL.

 

ANyway, what kind of results did you have? Our son hasn't had symptoms. A year ago the IgG was 3.89 and IgM neg.

 

Just curious. Prayers & Good wishes!! Dawn

[EAMom]

Good luck wornoutmom!

 

Hopefully in a few months you won't be quite so worn out.