Hope everyone had a Merry Christmas!

[matis_mom]

Hi all,

I hope everyone had a very merry Christmas! I had a little down time today so I was organizing DS's "Health" Binder (pages and pages of labs, prescriptions, etc), and writing down how he's been. To my surprise, I came up with a long list of improvements we've seen while he was on steroids.

 

* Improved concentration

* Getting his school work done quicker

* Spending less time on the toilet

* Washing a lot quicker

* Eczema on hands greatly improved

* "Loud Whispering to Self" (I don't know what to call it, he tries to reassure himself as he washes) greatly decreased

* Going to bed a lot quicker/not coming back up with reasurance questions as often

* Able to accept no response and even laugh when he asks a reasurance question and we refuse to answer

* Spending lots more time outside

* Playing with dog without problem

* Changing clothes/underwear less often

* Reduced bedwetting (although this seems to be creeping back up again)

* Decreased overall anxiety

 

He finished the 4-week course this past Tuesday, and had a headache on Wednesday. He has been doing fine these last few days, very animated, playing lots with brothers and sisters (he's getting a bit annoying, but that what he was like before this whole PANDAS thing started )

 

I do hope and pray he maintains all this progress as his own immune system takes over! We are seeing Dr. Latimer Jan. 7, and we'll take it from there. If anything we know the steroids/Augmentin did work. We also managed to get everyone in the family treated in December, so that is probably another contributing factor.

 

I wanted to share this good news with you all, and maybe others can chime in with their own successes. It seems we all tend to write more when things are not going well, but we can all use a little holiday cheer!

 

God bless,

 

Isabel

[MomWithOCDSon]

Hi all,

I hope everyone had a very merry Christmas! I had a little down time today so I was organizing DS's "Health" Binder (pages and pages of labs, prescriptions, etc), and writing down how he's been. To my surprise, I came up with a long list of improvements we've seen while he was on steroids.

 

* Improved concentration

* Getting his school work done quicker

* Spending less time on the toilet

* Washing a lot quicker

* Eczema on hands greatly improved

* "Loud Whispering to Self" (I don't know what to call it, he tries to reassure himself as he washes) greatly decreased

* Going to bed a lot quicker/not coming back up with reasurance questions as often

* Able to accept no response and even laugh when he asks a reasurance question and we refuse to answer

* Spending lots more time outside

* Playing with dog without problem

* Changing clothes/underwear less often

* Reduced bedwetting (although this seems to be creeping back up again)

* Decreased overall anxiety

 

He finished the 4-week course this past Tuesday, and had a headache on Wednesday. He has been doing fine these last few days, very animated, playing lots with brothers and sisters (he's getting a bit annoying, but that what he was like before this whole PANDAS thing started )

 

I do hope and pray he maintains all this progress as his own immune system takes over! We are seeing Dr. Latimer Jan. 7, and we'll take it from there. If anything we know the steroids/Augmentin did work. We also managed to get everyone in the family treated in December, so that is probably another contributing factor.

 

I wanted to share this good news with you all, and maybe others can chime in with their own successes. It seems we all tend to write more when things are not going well, but we can all use a little holiday cheer!

 

God bless,

 

Isabel

 

Congrats, Isabel! That is great news! An extra holiday present for your family!

 

While our holiday week started out a little shaky . . . being out of school with a less structured schedule and all the Christmas anticipation . . . we, too, are seeing a light at the end of our latest tunnel!! Yahoo! I would echo many, if not all, of the improvements you've noted for your own son with reference to ours, and we are SO grateful and encouraged!

 

And very grateful to everyone on this board who've added to our arsenal of information and advice! If not for you, we'd not have tried melatonin, NAC, sach b., etc. or held onto our sanity during the toughest days!

 

Here's to a hopeful, healthy, happy New Year!

[mom md]

I hope and pray the steroids work. I do think though that even if things relapse it is a clear sign that it is an autoimmune issue. Two to three weeks after we finished our steroids though we had issues again. The second round of steroids were not as helpful as the first and we are doing IVIG in January. I am sure Dr. Latimer will go this route if needed. I am so glad though that you had a wonderful holiday! Let's pray for a healthy new year!

[matis_mom]

I am so thankful for all the help and encouragement in this forum, particularly when I was hesitant to try steroids. Time will tell whether we need another round of steroids or IVIG, but we are very thankful for the progress we've seen, and to be working with a good doctor who understands the autoimmune nature of this disorder. And after hearing other families' experiences, the idea of IVIG does not seem so scary any more.

 

Another thing you all have taught me is that there is no straight path, and I have to be prepared for setbacks and/or repeated treatment, but I am very encouraged to see he has responded. I keep asking him how he's feeling and he says "good!", and then I point out all the progress he's made. Hopefully this will help if he slides back, at least he'll know he can get on top of things again.

 

Isabel