Broken Bone And...

[ibcdbwc]

I just thought I'd share. We were doing well for 5 weeks. As of this week DS has a broken bone, and a cold. You can imagine the result.

 

This journey is difficult. For the older tween, I think the most difficult part is the isolation these flares bring. I feel like I am hiding my child. He is not able to communicate with his friends and neighbors in the way he normally could. Every time he flares, they now notice the dramatic changes. He is a completely different person. Before, you could chalk it up to "kids being odd." Tics, some OCD but he could hide things more easily himself. Now, he is truly suffering from mental illness. He can no longer control it when flaring. And the stigma attached to that is overwhelming.

 

I am more upset to think that people will readily accept a biological or environmental insult as explanation to paralysis , but yet they think its not possible when it comes to wide mood shifts, debilitating OCD, paranoia, rage.

 

So for now, we hunker down and wait for this flare to pass. Recent labs show no immune system. His IgG has dropped very low so IVIG will be covered. He remains on two antibiotics. We have sent for MTHFR test. We will address mold issues in the house... It all takes time. And in that time, I fear he will lose his friends, his neighbors, his community. But I suppose we need to press on regardless.

 

We are using therapy to cope. I may consider adding Lamictal though I am scared to do that. We'll be okay. It's just hard, really very hard.

[MomWithOCDSon]

Hang in there! And try to keep in mind that sometimes what appears monumental to us adults, or even monumental to everyone in the moment, is often, in the breadth of a lifetime, revealed to be just a blip on the screen.

 

I was truly traumatized for a while by some of the things my DS went through, but many of them he now barely remembers, and even the bad times he remembers, he does so only in a quasi-amused way, patting himself on the back (deservedly) for how far he's now come.

 

It sucks, and we cry for the lost childhoods our kids are forced to experience. But they can come through it so much stronger, wiser and more compassionate.

[ibcdbwc]

Thank you so much for your support! It is what I am trying to hold on to. There is no doubt that he is learning such valuable lessons and will truly be an amazing compassionate adult. But it's so difficult as you know. What is really challenging is that you can be so normal, even joyful for some time, and then boom. It comes back. Can you tell me about your experience with lamictal?

[MomWithOCDSon]

Lamictal proved to be a positive turning point for us. Prior to implementing it, DS would become so emotionally overwhelmed by his compulsions, he couldn't control himself, despite all the therapy and techniques he'd been given/taught. Once he began taking the lamictal . . . within about 48 hours, even . . . we saw a dramatic change. It didn't take the OCD away, but it gave DS his ability to be more objective again; he wasn't so emotionally sucker-punched by the OCD. So he could stand aside and take an honest look at his behavior, why he was engaging in it, how he might benefit from pushing past the OCD. He could utilize his reason to a greater degree, rather than operate as one, big raw nerve.

[ibcdbwc]

Thank you Nancy. I think we are going to need something like Lamictal, at some point, until we can get his immune system stabilized and/or until we make it through puberty. He has really tanked with his IgG dropping 200 points in just two months. His system is just completely overwhelmed. I appreciate your insight and advice. It gives the rest of us such hope when you post your positive results and continuing success. I have read extensively about lamictal and do believe it may be helpful, especially when all else fails in the short term. I am nervous about side effects, especially headache and insomnia as those two seem to be a problem during flares anyway.

Thank you again!

[qannie47]

ibcdwc : I am so sorry that you are experiencing what many of us have....The inability to wrap one's brain around the idea that an autoimmune disorder could present itself behaviorally..

 

As a parent...I still have a hard time, even though I consider myself a veteran. I have seen the overnight changes for the negative and for the positive. Right before my very eyes!!!...and yet, while I know the truth....It is still a mind bender...

 

Be kind to yourself. You are a great mom, a mom who is treating their child to the best of their ability. Even under normal circumstances, with typical challenges, I think society loves to secretly grade us....

 

Anybody who is not granting you the support and understanding you deserve can go scratch....That is the motto that I had to embrace. You will sleep better...

[3bmom]

Hang in there. When we were at our worst and I thought I would shatter my oldest reminded me it is always darkest before the dawn. Have you tried Valcyclovir, anti-viral? Check for titers? Our Dr eliminates food before any meds. I wouldn't believe it could make such a difference if I didn't observe it for myself. It is not about allergies but the inflammation it causes. There is a great link under last weeks post about excess Glutamate in the brain caused by casein in dairy and gluten in our wheat.

 

Hugs to you! My mantra is...and this to shall pass.

[ibcdbwc]

Thank you quannie and 3bmom. I like both your mottos/mantras! I do feel hopeful surprisingly. We enjoyed such a nice "normal" last several weeks but then a cold and then a broken bone! I just thought to myself, "really?" But now i have to laugh and just press on. DS is somewhat better today. He's a bit understandably depressed about his situation but the intrusive OCD has lifted somewhat - at least for now.

 

Have not tried anit-virals. Had one doc say his coxsackie titers were high enough to treat but then another say that's not worth it. I do truly believe DS is just plain overloaded. He can handle allergies. He can handle a cold. He can handle stress. He can handle exposure. But when they are layered upon each other-- it's too much. The inflammation and responding chemical changes are very apparent. His immune system is tanking as a result. He's worn down. He even tested positive for anti-adrenal antibodies.

So I know his body is fighting itself.

 

Agree with the glutamate connection and the histamine connection. Have read all these threads with interest and have always believed in these theories. I think that is the reason he responds to glutamate modulating antibiotic therapy. It's not necessarily an infection we are treating but rather the result of the infection- viral or otherwise.

 

We are as of this week gluten free. He just tested high for tissue transglutamase IgA which is a Celiac marker. I need to read more on this and am awaiting labs to be mailed to me so I can see what else that may mean. My plan is to add dairy free after this adjustment.

 

I do appreciate everyone's support. It's like a life line!

Edited March 17, 2014 by ibcdbwc