Update, heading into last IVIG for awhile...

[lmkmip67]

I won't go through Ian's whole story. But we are heading into IVIG #6 this coming week. We haven't seen results from it so are taking a break after this one. I am not sure what Dr. B will say, but I know we all need a break from the trips and needles. I plan on asking to keep him on antibiotics for now and we are doing therapy as well as starting some psych meds to try and calm the OCD. I may be looking into Lyme down the road, though as of now his tests and retests were all negative. I just feel it is time for the next phase. Maybe we will see some healing from the IVIG, I don't know. I read about some that get one or two, but then see healing months and years down the road...but not sure. I need to get him to a more stable place and have to look for other means to do that now.

 

Lisa

[LNN]

Lisa,

I hope all goes well this week. I can hear the exhaustion and disappointment in your words. I'm sorry answers haven't been easier.

You're one of several moms this week who have that white flag of surrender tone...it's been a long winter. People will tell you to take care of yourself but it's easier said than done.

 

I think it's wise to look at options to just get quality of life back, including meds if that's what's needed. Don't beat yourself up. Sometimes it helps to step away. I think it's ironic that the doctor we see now is someone I looked into three years ago but at the time was afraid to take a chance on. I have a binder of stuff I printed when we first started out and in it are articles on vitamins we now use, but I was too unsure of myself back then to "experiment" on my kid (Ha! The things I've put him since then). My point is that sometimes an answer is there but you aren't able or ready to see it until you change your perspective.

 

Try not to get discouraged. This could just be a moment of re-grouping, even tho it may feel like a low point. I hope so.

[lmkmip67]

Thanks, LLM. I am not actually feeling like it is a low point. Maybe a new start. You hit the nail on the head though. I think you have to work through the different issues to find the right answer. Who knows, maybe it is Lyme and the tests just aren't showing it. We will explore that soon. It is like you said though, it has been a long winter and I think we are all just tired. I am lucky, Ian goes to school full time, is in an intense hockey program (his choice, he loves it), play soccer and has lots of friends. His tics have subsided for almost a year now. I am kind of looking forward to trying out the next route to see if we can find something to help. I do hope the psych meds help so he can have some calm waters for a while. And we will be working on the therapy a lot, too. So not giving up, just taking a little slower road and exploring our options. You might be right though, winter is long and it can really wear on people. I will keep updating as we take our next path in hopes it helps someone.

[eljomom]

lmkmip67---you are an inspiration, actually. thanks for sharing this.

your son sounds like he is quite functional. wondering why dr. b is still giving him IVIG? What symptoms does he still have? Did the IVIG help at all?

We are still in the limbo stage where my dd is functional, but has tics, ocd-ish stuff, adhd....and not sure IVIG is the answer. yet.

[lmkmip67]

lmkmip67---you are an inspiration, actually. thanks for sharing this.

your son sounds like he is quite functional. wondering why dr. b is still giving him IVIG? What symptoms does he still have? Did the IVIG help at all?

We are still in the limbo stage where my dd is functional, but has tics, ocd-ish stuff, adhd....and not sure IVIG is the answer. yet.

 

Thanks! I sometimes feel like I am failing (don't we all at some point?) But I know I am not. Just trying to find answers. Ian is very functional. But he struggles with huge OCD stuff, ADHD, ODD, etc. He has to things twice, repeat things, confess things, has a touching compulsion, huge fears (can't use the bathroom at school, etc), separation anxiety at night, wiping OCD in the bathroom, perfection compulsion in handwriting (has to erase over and over and over) and it goes on and on. So yes, he is functioning but he struggles daily with his OCD. That has not gotten any better at all with IVIG, and actually he is worse than last year at this time with OCD stuff. Tics are the only thing that I don't currently see.

[Bill]

Thanks! I sometimes feel like I am failing (don't we all at some point?) But I know I am not. Just trying to find answers. Ian is very functional. But he struggles with huge OCD stuff, ADHD, ODD, etc. He has to things twice, repeat things, confess things, has a touching compulsion, huge fears (can't use the bathroom at school, etc), separation anxiety at night, wiping OCD in the bathroom, perfection compulsion in handwriting (has to erase over and over and over) and it goes on and on. So yes, he is functioning but he struggles daily with his OCD. That has not gotten any better at all with IVIG, and actually he is worse than last year at this time with OCD stuff. Tics are the only thing that I don't currently see.

 

Someone on this forum PM'd me a while ago who believes (or their doctor believes) that IVIG may be masking results. We are on the Lyme + Pandas route ourselves. My son's last IGENEX testing was clear across the board (except for 41). He will soon be going for his 4th IVIG. We have seen some positive results every time but not for his OCD! Our LLMD is a big believer that Bartonella is a leading cause for OCD. We've been treating the Bartonella and lyme for over a year so one would think it would break some by now! If I'm being totally honest with myself though, he has improved, just not as much as I would have hoped in regards to OCD. BTW - quickly read some of your older posts. SSRIs really helped my son's raging but do nothing for his OCD. OCD was one of his later symptoms to occur and was the one that got us on the Pandas route.

 

A couple of weeks ago I hit my son with a Cat's Claw plus artimisinin combination that caused temporary trichtotillimania. Had to back off that quickly! Anyway, have restarted the artimisinin with guidance from our doctor as well as switched from tindamax to flagyl on weekends. Trichtotillimania has not returned but some of his anxiety is getting kicked up (picking his finger tips until they bleed) so we are clearly kicking something up again. The artimisinin is for babesia (theoretically anyway). He never tested positive for Babesia. Could be the flagyl alone but one wonders. I wanted to try this as something seems to be holding him back from a complete recovery.

 

Guess what I'm saying is that I have no faith in any of the test results these days. A positive is great (in that weird sort of way only us on this and similar forums understand) and a negative is meaningless. Feels like a guessing game once the standard treatments don't fully work.

 

No help in my post I know.

[lmkmip67]

No Bill, that is very helpful, so thank you. Hearing the experiences of others is always helpful. I do agree, that the tests are not always telling. that is why I am not discounting Lyme and plan on seeking input on it. We just need a break for a month or so to enjoy our Spring break vacation and kind of collect ourselves. Then in May I think I will make an appointment with the LLMD and go from there. I took him off antibiotics for a couple of weeks to give him a break and his OCD did seem to get a bit worse. But heck, it did last time before treatment too and he was still on the meds. So who knows. I think whenever he seems to flare I look for WHY now. It is a guessing game.