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6 month post IVIG update


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With the snow on the ground this week, I've been thinking alot about where we were this time last year. Living with a sick, raging, violent, oppositional and severely anxious, OCDing 14 year old and desperately trying to get medical professionals to listen to us and treat him appropriately. I was alone, scared and seriously frightened we would have to re-hospitalize him. It is only due to the constant support of the parents here that I did not give up or give in. Despite not one, but two PANDAS experts telling me my son did not appear PANDAS, but likely bipolar, you all encouraged me to trust what I knew in my gut and keep going. I don't know how I did, but I did. This December we are 8 months on full strength Biaxin and 6 months post IVIG. It has been a long road, but my son is healing. Things are not perfect, but mostly he is "here" (and I know you all know what I mean). He is still on psych drugs, still in therapy, still only attending 3/4 time school. But he is more and more the kid underneath the disease. The kid I've only seen in flashes and moments in the last 3 years. In 6 months he has matured years. He is learning to use and practice his cognitive behavioral therapy and it is working for him. He has not raged in 3 months. There are no strange body movements. He is no longer defiant or violent. He is re-finding his sense of humor. We are having some nice, quiet family times. After living 9 years with this syndrome, I can't and don't expect it is over. But I have learned to appreciate every good day as a gift. His greatest fear now is that when the PANDAS symptoms return (which we are still seeing with mild illness and stress) they will stay and he will be "crazy" again. They don't seem to. His lows are not as low, and he is rebounding from them faster and stronger. The rollercoaster, for the moment, seems to have gone from the Demon Drop to the kiddie coaster. We are continuing to pursue to active infections his body seems to continue to be battling. I don't consider him "healthy" but do consider him "healing". And a year ago, that seemed like a distant dream in the future. Thanks to all of you. Hope I can pay this forward some day...

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With the snow on the ground this week, I've been thinking alot about where we were this time last year. Living with a sick, raging, violent, oppositional and severely anxious, OCDing 14 year old and desperately trying to get medical professionals to listen to us and treat him appropriately. I was alone, scared and seriously frightened we would have to re-hospitalize him. It is only due to the constant support of the parents here that I did not give up or give in. Despite not one, but two PANDAS experts telling me my son did not appear PANDAS, but likely bipolar, you all encouraged me to trust what I knew in my gut and keep going. I don't know how I did, but I did. This December we are 8 months on full strength Biaxin and 6 months post IVIG. It has been a long road, but my son is healing. Things are not perfect, but mostly he is "here" (and I know you all know what I mean). He is still on psych drugs, still in therapy, still only attending 3/4 time school. But he is more and more the kid underneath the disease. The kid I've only seen in flashes and moments in the last 3 years. In 6 months he has matured years. He is learning to use and practice his cognitive behavioral therapy and it is working for him. He has not raged in 3 months. There are no strange body movements. He is no longer defiant or violent. He is re-finding his sense of humor. We are having some nice, quiet family times. After living 9 years with this syndrome, I can't and don't expect it is over. But I have learned to appreciate every good day as a gift. His greatest fear now is that when the PANDAS symptoms return (which we are still seeing with mild illness and stress) they will stay and he will be "crazy" again. They don't seem to. His lows are not as low, and he is rebounding from them faster and stronger. The rollercoaster, for the moment, seems to have gone from the Demon Drop to the kiddie coaster. We are continuing to pursue to active infections his body seems to continue to be battling. I don't consider him "healthy" but do consider him "healing". And a year ago, that seemed like a distant dream in the future. Thanks to all of you. Hope I can pay this forward some day...

 

 

SOOOO GOOD to hear. I know EXACTLY what you mean about healing. My dd has completed 4 HD IVIG (last OCT 22) and she is doing well. Off all meds, still has some mild issues, but she is HAPPY! I hear it in her voice, especially over the phone, she is herself again MOST of the time. It is such a wonderful feeling, always on guard though. Just keeping our faith and praising GOD for how far we have come. Just a few months ago it was like living with a Rabid wild lion in our home- seriously! I pray for continued healing for you.

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WOM-This post does pay it forward. Some other "worn out mom" will read this and start to cry as she reads her own child's story in your words, only it will be where your child was and where she hopes her child can be some day too. God bless you for your patience and faith and I hope you feel a little less worn out than you did a year ago.

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By just posting your healing process you are paying it forward!!!

Thank you...

Can i ask...if your son is on biaxin, did you think myco p was the trigger...or is that just the one that seems to working for your ds?

Thanks..and i look forward to hearing about your ds continued healing!!!!

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Sharing your story is one way of paying it forward. It gives others hope. I will share a short version of our story too, with the hopes of giving someone else some hope at this time of year.

 

I am not on the forum very often these days. Busy living life, working again after being a stay at home mom for 16 years, and trying to focus on daily life rather than reading and worrying more. It means we have come a long way.

 

One year ago we were desperate and frightened. Our 13 yo dd was completely incapacitated by her OCD. It was a nightmare. She is now post 3 HD IVIG's with another scheduled for Mon and Tues. She is doing amazingly well, though not perfect, having had two sinus infections post IVIG number 2 and 3. We are tweaking meds in the hopes of preventing any further sinus infections which do set her back. Once under control again (back on Augmentin along with her Zith), she continues to make progress, however. It's been a learning process.

 

My dd, now 14, is happy and independent again. Right now she's at a friend's on an island and she took the ferry alone to get there. Recently, she and another friend took a train, complete with a train change and a short subway change, on a 16 hour journey to her friend's relatives for a weeks visit. She took her meds along and was very responsible while she was there. I was so proud of her.

 

For us, the IVIG's have been key in her healing. We did antibiotics (a few combinations) for 8 months before IVIG with no sustained progess. I believe she will get to 100% if she can keep the sinus infections at bay.

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Worn out Mom - you were one of the first people I contacted on the forum because our kids were the same age with similar issues. I am SO happy that things are moving forward. I remember worn out dad saying at the time that no one knew what to do with your DS and you were left steering the ship. I guess you have a good sense of direction!

 

Momaine - you were one of the first people I read about who wen to Dr. B for IVIG. My 13 year old son had a rough day today and I kept telling him not to give up. We are going to keep working and we are going to get IVIG in a few months when insurance changes. I just went in his room and read him your daughter's update while he was falling asleep. He said "Mom... it's funny how that is a like a bedtime story to me".... I guess our idea of living "happily ever after" has changed!

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Fixit: Back in March/April Dr T tested for Myco P and his IGG came up positive (IGM neg). We started with Biaxin and were seeing pos. response. Started on and off it, but went "constant" in June just to be safe. Subsequent tests conitnue to show IGG positive, and we are dealing with some probably positive Igenex lyme tests, so we continue him on this. Tried zith for a few days for a sinus infection and he went nuts. Switched back to Biaxin and was better within hours. Added Augmentin XR this fall with a relapse and no significant improvement. Strep testing has been negative since he was 12 (but was rampant at age 6-7 when initially diagnosed). Are re-testing soon on all of the above and if Igenex continues to look positive we are off to an LLMD. We have also added low dose of daily xanax to the mix as he began having panic attacks when he started highschool this fall and we were nervous to try steroids due to the lyme question still in the back of our minds. It has helped also. He is super fatigued (sleeps 8 hours, naps 2-3 hours daily) and its hard to know if this is a symptom or side effect of meds - I suspect both. IVIG is not covered by our insurance and we are still paying on the $12,000 bill. Our neuro who ordered the IVIG advised us to hold off on another basically in case he severely relapses again (ie. spend your dollars wisely kind of thing). Post IVIG this summer he looked healthy for the first time in years - dark circles gone, pallor returned to normal, cracks on the side of his mouth healed up. Last physical tic disappeared after he got his braces off in AUgust. He doesn't look as healthy at all anymore. But like I said in my earlier post, he is mostly functioning again. After suffering for so many years he has a long way to go to catch up developmentally and cognitively. I have no illusions that this will be a straight upward path to recovery or that he might not fall back into the deep PANDAS/PITANDS pit again if he gets another serious illness. But now I feel armed with a medical team and a support army of cyberfriends - and that is a long way forward from a year ago!!!!!!!!!!!!

 

 

By just posting your healing process you are paying it forward!!!

Thank you...

Can i ask...if your son is on biaxin, did you think myco p was the trigger...or is that just the one that seems to working for your ds?

Thanks..and i look forward to hearing about your ds continued healing!!!!

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