celebrating

[bigmighty]

Today it has been exactly six months since DS went into a full remission with all symptoms disappearing in an instant - the complete opposite of onset - just like a light-switch turning back off. He is taking Augmentin 875 x2 daily, set to reduce to Augmentin 500 x2 daily in January. We will be armed with a prescription for steroid taper, just in case he gets strep right away once he is placed on the lower dose of antibiotics. Still has overall IGG around 500, so having frequent labs. If that worsens, he may require IVIG. But, for now, all is well. Thanks to everyone here for the advice and support that got us to this point. I wish that what worked for DS worked for every child. At present, he has no recollection of ever having been sick.

[HaylesJohnson]

Oh wow, what a wonderful milestone for you all!! It's so lovely to read stories of remission and good outcomes

[bigmighty]

Thanks. I was hesitant to post this, because I know how many here have kids who are not yet doing well. But a year ago, I recall reading a similar post by another parent whose child was much better. I recall feeling a combination of extreme anger/frustration that it was her child and not mine who got well, mixed with a renewed fierce determination. On some level, it gave me hope. If someone else's kid was getting better, then I should not give up the good fight because it could happen for my kid next. I read that post from a mom whose child got well on the day after our appointment with specialist #6 had gone poorly. In fact, he (a world-renowned immunologist) told our son that he was wasting his time doing silly things and that he needed to get serious about ERP and just stop giving in to his extreme mental illness. After that awful appointment, (which took three months to line up and required calling in favors because the doc wasn't even taking new patients), I really was ready to throw in the towel. Then I read a post from a parent about her child in remission, and went back to researching, scheduling yet more appointments for yet more opinions, etc. Virtual hugs to all who continue to fight the good fight.

[HaylesJohnson]

Thanks. I was hesitant to post this, because I know how many here have kids who are not yet doing well. But a year ago, I recall reading a similar post by another parent whose child was much better. I recall feeling a combination of extreme anger/frustration that it was her child and not mine who got well, mixed with a renewed fierce determination. On some level, it gave me hope. If someone else's kid was getting better, then I should not give up the good fight because it could happen for my kid next. I read that post from a mom whose child got well on the day after our appointment with specialist #6 had gone poorly. In fact, he (a world-renowned immunologist) told our son that he was wasting his time doing silly things and that he needed to get serious about ERP and just stop giving in to his extreme mental illness. After that awful appointment, (which took three months to line up and required calling in favors because the doc wasn't even taking new patients), I really was ready to throw in the towel. Then I read a post from a parent about her child in remission, and went back to researching, scheduling yet more appointments for yet more opinions, etc. Virtual hugs to all who continue to fight the good fight.

 

Well, I am glad that you shared - our journey has only just begun and we are still not yet certain exactly what we are dealing with, but I find hope in your story for all of us

[DeterminedMomVA]

Bigmighty,

I am smiling from ear-to-ear and and am so very happy for you and your son. Thank you for sharing your story of healing. Hearing others' success stories gives me hope, and, as you said, renewed determination to press on and fight for my child despite what sometimes feel like devastating set-backs.

 

My DS just had his first IVIG last week, and although I'm terrified to say it, he is already doing better than he's done in over a year. I'm braced for a decline, or a sawtooth pattern, but seeing him start to get relief from the symptoms and suffering is huge, and it's so nice to hear your son's really positive experience of healing.

 

Here are some hugs, and a high-five in celebration!

[Hayley]

So happy to hear your good news. Would you mind posting what your treatment was to get you to this point (and how long it took to see results). I know each child's story/response is different, but I do love the encouraging stories! Hope all remains on an upward swing for your family!

[bigmighty]

DS was in the most recent NIH clinical trial. Got the real HD IVIG twice. Very little change after the 1st. After then 2nd IVIG - six weeks later, DS got about 80% better, then got strep. After that six weeks of near-normal, the strep was such a setback. We were devastated. DS got much worse than he had been before the start of the NIH study and stayed that way for the next six months and many specialists. Finally went to Dr. B. in CT. He switched DS to Augmentin 875 twice daily. DS got worse the 1st six weeks on Augmentin, but we were advised that this was normal, and to keep pushing through it. Then we added a 19 day steroid taper (starting at 35 mg) after 8 weeks on Augmentin. DS was much improved while on the steroids, but lost a lot of those improvements again after the 19 days was up. Added in ibuprofen 3x per day to keep things manageable. Gradually, over the next two months, small things improved, but nothing was miraculous. Another two months on the Augmentin and, somewhat suddenly, the light switch simply shut off. DS was doing all of the ritualistic things he had been doing for the previous 16 1/2 months. Then he simply dropped 100% of his rituals all at once and could not imagine why he had ever done them. Mid-sentence, his skin coloring changed back to normal from pale and he paused and then said "For some reason, I think I used to be sick, but I'm better now."

[Missmom]

DS was in the most recent NIH clinical trial. Got the real HD IVIG twice. Very little change after the 1st. After then 2nd IVIG - six weeks later, DS got about 80% better, then got strep. After that six weeks of near-normal, the strep was such a setback. We were devastated. DS got much worse than he had been before the start of the NIH study and stayed that way for the next six months and many specialists. Finally went to Dr. B. in CT. He switched DS to Augmentin 875 twice daily. DS got worse the 1st six weeks on Augmentin, but we were advised that this was normal, and to keep pushing through it. Then we added a 19 day steroid taper (starting at 35 mg) after 8 weeks on Augmentin. DS was much improved while on the steroids, but lost a lot of those improvements again after the 19 days was up. Added in ibuprofen 3x per day to keep things manageable. Gradually, over the next two months, small things improved, but nothing was miraculous. Another two months on the Augmentin and, somewhat suddenly, the light switch simply shut off. DS was doing all of the ritualistic things he had been doing for the previous 16 1/2 months. Then he simply dropped 100% of his rituals all at once and could not imagine why he had ever done them. Mid-sentence, his skin coloring changed back to normal from pale and he paused and then said "For some reason, I think I used to be sick, but I'm better now."

So happy for you and for him.... Maybe it was the whole puberty theory that kicked in. The bbb could have had time to strengthen and now he is finally feeling relief. I love to hear these stories. Thanks for sharing. We all need hope sometimes. Others have talked about that light bulb moment as well.

[Hayley]

What a road you have been on! And what a miracle he is finally well! Thank you for sharing your story!

[bigmighty]

Actually, DS did not grow for the entire 16 1/2 months he was ill and only gained 2 pounds during that entire period of time. It has only been during the past 90 days that he has started to go through puberty and growing normally again. We are certainly hoping that puberty (he is 14) keeps this at bay. But he had no signs of beginning puberty until a couple of months ago.

[MMC]

Thank you for sharing, this gives us hope as well. Our DS14 has not grown much or gained much weight since PANDAS onset in March 2009, weighs about 75 lbs presently. No signs of puberty yet...docs say keep waiting. Dr Latimer advised against testosterone shots for now. We are hopeful once puberty hits, it will help with the BBB and PANDAS will be a thing of the past eventually. He will be 14 and a half in December...why it is taking so long for puberty, we don't know. A growth plate study shows he is 2 years behind. He also is pale, but has always had fair skin.

 

When DD16 hit puberty, her PANDAS symptoms did not completely disappear, but have lessened over the past three years. ADD is her main issue and is controlled by meds. So, I believe puberty does help in general, probably something with the BBB maturing. I know it doesn't work out this way for all kids, but one can hope. Time is on our side and I do not believe PANDAS causes brain damage, although some symptoms can linger into adulthood, but to a lesser degree.

[nicklemama]

Congrats! What a great story and something to hold onto for the rest of our kids. Our DS grew very little for about 1.5yrs. We went back to see Dr K at the 1yr post IVIG mark and he had gained 8lbs and grew several inches in the year. He's still thin. Dr K was very quick to point out his growth and had a big smile.

[jojos_mom]

Congratulations! Thank you for sharing...it gives me hope and renewed strength to persevere.

[Guest Motherbear]

Thank you for posting this. It gives me hope. My son 11 is just newly diagnosed. He has stopped responding to antibiotics that he was on previously, and is on Augmentin 600 MGS. Since school started he has had back to back strep. He was supposed to be in the Tae Kwon Do Club, had to quit that. On the soccer team. Had to quit that. He has missed school and he misses his friends. He is pale and lethargic. I am so sad. Tomorrow starts the infectious disease department at the hospital "work up". I'm so grateful I got the list of tests off this site, along with support from all those that are going through this. I know it's a long journey - but I am not willing to let him miss out on his childhood. Thank you for providing us with hope!

Edited October 17, 2012 by Motherbear

[Wombat140]

Can that really happen? I can't quite believe it, but then it's hard to believe how quickly this type of OCD starts too, so...! Congratulations, and I hope everyone else here soon has the same to report - including me!