IVIG? CellCept? Help!

[T_Anna]

On January 24th, it will be one year since DS15 voluntarily left he house, bathed, changed his clothes, functioned like a teen.

 

Now he gets trapped in the bathroom whenever he has a BM. Trapped by OCD and rituals he's too weak tired to fight. He cries, he wants to get out. It once took him 4 hours, then 12, then 24, then 32 and now the past three weeks it has been 48hrs. I asked him why it has changed so drastically? He said because before he believed he could be cured.

 

He thanks me for talking to him while he's in there. He apologizes to the whole family for ruining things for them. He is sweet and funny and charming.

 

Putting him in an inpatient psych facility is not an option. We have done months of abx, anti virals, steroids, SSRIs, psych meds, supplements. We have done 4 HD IVIGs and plasmapheresis. We have definitely had improvements. Now it is almost only OCD (no urination issues, rage, brain fog, speech issues, piano fingers, etc). He only has tics after he gets out the bathroom and has been off meds 2 days (they go away with 30 hrs after he gets back to taking meds).

 

We are planning to go another HD IVIG. Can we lick it with this alone? Should we look for someone local to start us on immunesuppressants?

 

We are currently back with Dr.T. So far all his recommendations have brought our son back to us, but I want more, faster!

 

We have an appointment at Duke in late January.

 

I'm just so depressed today. Watching him stuck there and knowing how hard every step is gonna be getting back even when things get better.

 

If you've been as stuck, please tell me your stories. Even if you've written it before I could use some inspiration today.

 

Thanks for reading this, I know it's long.

T.Anna

[qannie47]

t.anna, I am so sorry that you and your ds are in the place where you are right now. Have you ever thought about dr. Najjar? He seems to have been very helpful to Ophelia. I know that you are a strong person and so is your son. You both will get thru all of this eventually. I have found that from my worst experiences in life...have come my best. I truly believe that. You may not have any idea what the "best" is yet, but when you get there, you will know.

 

One remarkable trait that embodies everyone in this forum is their strength, fortitude, and intelligence. Nobody in this forum accepts defeat. It has always struck me that while we all are unique in our own way, we all seem to share these traits. I have to believe that something bigger then what we can see in the moment is at work. I believe that circumstances choose us sometimes, and it is these circumstances that pave the way for a higher purpose. Whether one believes in a higher power or not, if you look at some of the greatest contributions from mankind, they come from circumstances just like all of ours.....

 

Okay....I really am stone sober when I wrote this...

[T_Anna]

<<Have you ever thought about dr. Najjar?>>

 

Yes, we met with Dr.Najjar on July 24, 2013. We did not get the same reception as others. At the time we were hoping for plasmapheresis which we ended up doing at Maimonides on July 30th.

 

At this point, I'm not sure what he could do, since as far as I can tell, he doesn't treat with immune suppressants (CellCept, etc). I think I will try a rheumatologist, I have heard that might be a more likely route.

 

I loved your poetic response, thanks.

[JoyBop]

I don't know that I have a story that will inspire you but I wanted to let you know how much you and your son inspire me. Through all of this you have exemplifies such grace to all of us. You have always been able to see the bright and beautiful side of your son and I have always admired the qualities that shine through in both of you.

 

While it seems hopeless at the moment, I have faith that it will get better and your son will have the life he deserves. I know that you will stop at nothing to get the treatments he needs, and I do believe that it will happen sooner than either of you think.

 

The fact that your son is still so loving, compassionate, and sweet and has maintained his friendships despite his tragic symptoms is absolutely amazing to me. It shows that he is still there, still strong, and just "stuck". He won't stay this way forever. You have seen him make progress and he will again.

 

Keep the faith! You are doing an amazing job. I also have faith that Dr. T will guide you in the right direction or to the right people. Have you ever considered calling Swedos office? They are very responsive and often offer guidance.

[T_Anna]

Thanks JoyBop. Not sure I'm quite "all that" but it's something to aspire to.

 

Do you think there is anything to be gained by calling Dr.Swedo? I emailed last year and I got a response that my son wasn't a candidate for their study. I guess I can try.

 

Thanks again,

T.Anna

[T_Anna]

Thanks QAnnie47.

 

I will take this a step further and say that it has also changed my two non PANDAS kids. They have such compassion for their brother. I had to go out and my pandas son was afraid to be alone while stuck in the bathroom. On his own, his younger brother lay on the floor in the hall and talked to his brother through the door until I got back. That's something I wouldn't know how to teach in a million years.

 

Thanks again!!

T.Anna

[JoyBop]

T. Anna, Swedos office is very open to responding to people's inquiries. Did you actually ask for guidance or did you just apply to the study? I think its definitely worth a try. We didn't qualify for the IV IG study either bc DS had been on SSRIS. Has changes in meds in the past 5 weeks, and had just started CBT. But we did qualify for her new study which is more diagnostic but you do get lots of testing covered and they will make treatment recommendations at the end. I know they are not accepting kids who have already had an IV IG so it will most likely not be a match for you. But what do you have to loose in asking for help?