Our Update - One year since the start

[coco]

It's hard to believe that it has been a year since our first IVIG with Dr. K and the beginning of the Pandas journey. I have not posted in months, as our family went through my dear uncle's bone cancer final months and seemingly out of nowhere I am literally flat on my back with Lyme's myself. I have not been feeling well enough for much of anything, just trying to gain some ground each day. Believe me, it gives me new appreciation for what our children with Lyme's and Pandas are going through.

 

My dd's last HD ivig in February really did help her quite a bit...but she was a late bloomer for sure and it did end up taking 4 solid months before we could really say things were turning for the better and holding. During the spring Dr T discovered mycoplasma and Dr. Jones found lymes and began treating. We saw wonderful improvement on Biaxin and she is still on it. We have added in Minocycline for Lymes and feel it is causing some herx reactions now and then, but we are sticking with it. Much has improved for our daughter, 10, and there are many days that are practically symptom-free. When she gets a cold (which is now VERY rare since ivig treatments) she gets symptom-worsening but is better able to return to baseline with a short steriod burst and cold is over. Over the past year with each cold came impetigo on the nose, and even the cold she had recently had some, but much smaller than prior colds. Her main symptom I think is residual OCD flares, but otherwise she is sweet and happy. She does still have learning disabilities, which we believe developed from undiagnosed Pandas since about age 2. We are exploring a new private school for her this fall which offers the Arrowsmith Program -- thanks to Ronna from the forum who posted about her son's experience with it several months ago. We are praying it will make a big difference for our girl, now that she is better able to receive instruction. Gonna try and get those rutted neuronal pathways changed for the better, and we will try to keep her healthy.

 

Our last HDivig was in late June, and we felt that although she was doing really well, we thought she could still benefit from another. We did not see the horrible side-effects as we did in Feb, she's just getting stronger and stronger. We would do another if we felt she was slipping too far. For us, low dose monthly ivig which we did for months last fall only made her worse and I would not choose that path again. Of course, at the time we never knew we were dealing with mycoplasma/lymes, so cleaning up those co-infections is critical.

 

There are so many blood-curdling details I have left out and my little update sounds so neat and simple but it was, and is, anything but. We plan on keeping her on abx for a very long time...until she's 20 as far as I am concerned. We will do short steroid bursts as needed to assist.

 

A year later I can say we are in a MUCH better place, and I owe so much of our success to this forum and the some of the bravest parents I have ever met. All of you help immensely. I can still remember walking into Dr B's office last July, telling him we were going to do our first ivig with Dr. K and connecting the two doctors so we could have continuity locally when we returned from Chicago. I think my child was the first girl he treated for pandas, but he was ready, willing and able to help in any way he could. All the physicians have added their experience to this journey and we are so grateful.

 

We don't know if we will ever be free of pandas, but I feel we have some of the best tools to beat the living daylights out of it in the meantime. Blessings to you all!

[Fixit]

It's hard to believe that it has been a year since our first IVIG with Dr. K and the beginning of the Pandas journey. I have not posted in months, as our family went through my dear uncle's bone cancer final months and seemingly out of nowhere I am literally flat on my back with Lyme's myself. I have not been feeling well enough for much of anything, just trying to gain some ground each day. Believe me, it gives me new appreciation for what our children with Lyme's and Pandas are going through.

 

My dd's last HD ivig in February really did help her quite a bit...but she was a late bloomer for sure and it did end up taking 4 solid months before we could really say things were turning for the better and holding. During the spring Dr T discovered mycoplasma and Dr. Jones found lymes and began treating. We saw wonderful improvement on Biaxin and she is still on it. We have added in Minocycline for Lymes and feel it is causing some herx reactions now and then, but we are sticking with it. Much has improved for our daughter, 10, and there are many days that are practically symptom-free. When she gets a cold (which is now VERY rare since ivig treatments) she gets symptom-worsening but is better able to return to baseline with a short steriod burst and cold is over. Over the past year with each cold came impetigo on the nose, and even the cold she had recently had some, but much smaller than prior colds. Her main symptom I think is residual OCD flares, but otherwise she is sweet and happy. She does still have learning disabilities, which we believe developed from undiagnosed Pandas since about age 2. We are exploring a new private school for her this fall which offers the Arrowsmith Program -- thanks to Ronna from the forum who posted about her son's experience with it several months ago. We are praying it will make a big difference for our girl, now that she is better able to receive instruction. Gonna try and get those rutted neuronal pathways changed for the better, and we will try to keep her healthy.

 

Our last HDivig was in late June, and we felt that although she was doing really well, we thought she could still benefit from another. We did not see the horrible side-effects as we did in Feb, she's just getting stronger and stronger. We would do another if we felt she was slipping too far. For us, low dose monthly ivig which we did for months last fall only made her worse and I would not choose that path again. Of course, at the time we never knew we were dealing with mycoplasma/lymes, so cleaning up those co-infections is critical.

 

There are so many blood-curdling details I have left out and my little update sounds so neat and simple but it was, and is, anything but. We plan on keeping her on abx for a very long time...until she's 20 as far as I am concerned. We will do short steroid bursts as needed to assist.

 

A year later I can say we are in a MUCH better place, and I owe so much of our success to this forum and the some of the bravest parents I have ever met. All of you help immensely. I can still remember walking into Dr B's office last July, telling him we were going to do our first ivig with Dr. K and connecting the two doctors so we could have continuity locally when we returned from Chicago. I think my child was the first girl he treated for pandas, but he was ready, willing and able to help in any way he could. All the physicians have added their experience to this journey and we are so grateful.

 

We don't know if we will ever be free of pandas, but I feel we have some of the best tools to beat the living daylights out of it in the meantime. Blessings to you all!

 

THanks for coming back to post...i am sorry for your other problems...

are you saying doc k never treated a girl..only boys before you...did i get that right...or are you saying your were doc b's first girl patient...not that any of this matters anyway...just nosy!!

 

I am glad for your success and continued healing!!!

[dcmom]

coco-

 

thank you for your story- and hooray for your girl. I know only too well the pain of having a ten year old with these issues.

 

I have one question- can you describe your steroid dosing? We are hoping we are to a place where we can "manage" pandas flares due to immune challenges. We have only so far done the month long tapering burst- which has worked wonders- but this does potentially put them on steroids for a good percentage of the year if they get a few illnesses. I am wondering if you have found luck with a shorter term in tamping down a minor flare, and if so if you would share the type of Rx is was...

 

thanks!

[Fixit]

i am interested in this response too!!

[P_Mom]

Coco...best to you and your daughter!!!! Seems like many of us Moms are ending up with "Lyme".......so strange...I still think there can be something going on with PANDAS that was passed to our children...and, makes us all positive for Lyme. After all....no one really knows waht is happening with PANDAS...and what antibodies are specifically involved.....can't they co-react to the Lyme test???? Can anyone tell me why that can't be the case?????

 

 

p.s. Coco, I am not at all disputing you Lyme diagnosis...I know it seems it...but, I have been down that road.....e-mail me.

[Kayanne]

coco-

 

thank you for your story- and hooray for your girl. I know only too well the pain of having a ten year old with these issues.

 

I have one question- can you describe your steroid dosing? We are hoping we are to a place where we can "manage" pandas flares due to immune challenges. We have only so far done the month long tapering burst- which has worked wonders- but this does potentially put them on steroids for a good percentage of the year if they get a few illnesses. I am wondering if you have found luck with a shorter term in tamping down a minor flare, and if so if you would share the type of Rx is was...

 

thanks!

 

 

i am interested in this response too!!

 

Me too!

 

Thanks for the update...I'm glad to hear things are better

[thereishope]

I'm glad to hear things are going well! May you and your family be blessed with happiness and health.

[coco]

Hi Fixit - My daughter was Dr B's first girl. We wanted someone locally who would be willing to follow Dr K's protocol and I got Dr B's name from Dr. Leckman at Yale as an immunologist who treated 3 pandas boys.

 

My girl was always a really good steroid responder...like within a few days. I think we've used prednisolone probably 3 times since February. The most was about 14-15 days with a taper. Subsequently 5-7 days. I am aware that longterm use of steriods should not be used if there is Lymes, but Dr. B assured us that brief periods with a taper would do no harm. If she did not have Lymes I would use it much more freely to get through the rough spots. I would hate to have to give it up. There are many children who are on steroids for asthma for years and the risks and benefits must be weighed, but it really works for us.

 

Thank you for the good wishes!!

[Fixit]

Hi Fixit - My daughter was Dr B's first girl. We wanted someone locally who would be willing to follow Dr K's protocol and I got Dr B's name from Dr. Leckman at Yale as an immunologist who treated 3 pandas boys.

 

My girl was always a really good steroid responder...like within a few days. I think we've used prednisolone probably 3 times since February. The most was about 14-15 days with a taper. Subsequently 5-7 days. I am aware that longterm use of steriods should not be used if there is Lymes, but Dr. B assured us that brief periods with a taper would do no harm. If she did not have Lymes I would use it much more freely to get through the rough spots. I would hate to have to give it up. There are many children who are on steroids for asthma for years and the risks and benefits must be weighed, but it really works for us.

 

Thank you for the good wishes!!

 

Can you clarify...are you saying you did a 2 week taper....how did the dosage work each day?

 

you've also done a week taper???? again how did the dosage work each day??

 

Thanks

[dcmom]

I am also interested in more specifics on the different dosages you have done.

 

My kids are really great steroid responders also. We have used them several times (and doing a burst now) to tamp things down after illness or a lot of exposure. The only Rx we have done is 28 days. It started at 20mg day for a week, then 10mg a day for a week, then 5 mg a day for a week, then 5 mg every other day. It has worked tremendously- but it leaves them on the steroid for a full month. For some issue that may be overkill.

 

Have you done the 5 and 7 day burst with no tapering? What did you do that for? Did it result in remission from that flare up?

 

Any details would really help- my doc is really open minded!

 

Thanks

[coco]

I am also interested in more specifics on the different dosages you have done.

 

My kids are really great steroid responders also. We have used them several times (and doing a burst now) to tamp things down after illness or a lot of exposure. The only Rx we have done is 28 days. It started at 20mg day for a week, then 10mg a day for a week, then 5 mg a day for a week, then 5 mg every other day. It has worked tremendously- but it leaves them on the steroid for a full month. For some issue that may be overkill.

 

Have you done the 5 and 7 day burst with no tapering? What did you do that for? Did it result in remission from that flare up?

 

Any details would really help- my doc is really open minded!

 

Thanks

I was able to find three of the (almost)empty prednisolone bottles from my backup fridge (yes, I keep these things just as my own reminder what we did in the past.) Ok, first bottle says "Prednisolone SOD 15/MG/5ML SMOR - Take 1 & 1/4 teaspoons daily for 14 days....(I did my own taper the last two days).

The other bottle says the same "Prednisolone SOD, etc. - Take 1 & 1/4 teaspoon for 7 days....(I did my own taper, again.) The biggest bottle was for a 30-day burst, which I only used about 75% of it because we were much improved by about the 2-3 week point. It reads, "Take 3tspX5days, 2and1/2 tspX5days, 2 tspX5days, 1and1/2 tspX5days, 1tspX5days, 1/5tspX5days." I am not ultra specific with the length of time...just until I feel she is back to a good place and holding, then I taper it down on my own. My dd is 10 and weighed between 60 and 69lbs during these dosages. We also did 1 and 1/4 teaspoons 2 days before our last ivig and 3 days after, and she had no side effects from the treatment at all. Prior she would have horrible headaches and vomiting for a day or so afterwards. I hope that helps and please don't turn me in to the prednisone police! On second thought, I could use the vacation!!

 

I also meant to add that she just looks so much healthier after ivig treatments. The dark circles under her eyes are almost gone....that pale, pasty white color, almost translucent-like skin is rosy and much more robust. She was always very thin and has gained weight and muscle tone tremendously over the past year. It took a long time for those dark circles to go. She was always such a picky "texture" eater, and did not have a great appetite, but she now eats much better, larger quantity, open to trying new gushy things or crunchy mixed with mushy, etc. She just began the earliest stage of puberty so that may have something to do with it, but she is a much healthier girl and the food issues resolved to a great degree after our first HDivig. You forget some of the horrible issues that were an all-day worry that are now over...at least for now.

[nevergiveup]

Coco, did u switch to low iga ivig, also? And what is ur lymes doc opinion on using steroids with lyme? Glad to hear ur are doing so well. We still do monthly switching to every 21 days. If we don't see complete resolution soon, we will be moving to Dr B's protocol.

It's hard to believe that it has been a year since our first IVIG with Dr. K and the beginning of the Pandas journey. I have not posted in months, as our family went through my dear uncle's bone cancer final months and seemingly out of nowhere I am literally flat on my back with Lyme's myself. I have not been feeling well enough for much of anything, just trying to gain some ground each day. Believe me, it gives me new appreciation for what our children with Lyme's and Pandas are going through.

 

My dd's last HD ivig in February really did help her quite a bit...but she was a late bloomer for sure and it did end up taking 4 solid months before we could really say things were turning for the better and holding. During the spring Dr T discovered mycoplasma and Dr. Jones found lymes and began treating. We saw wonderful improvement on Biaxin and she is still on it. We have added in Minocycline for Lymes and feel it is causing some herx reactions now and then, but we are sticking with it. Much has improved for our daughter, 10, and there are many days that are practically symptom-free. When she gets a cold (which is now VERY rare since ivig treatments) she gets symptom-worsening but is better able to return to baseline with a short steriod burst and cold is over. Over the past year with each cold came impetigo on the nose, and even the cold she had recently had some, but much smaller than prior colds. Her main symptom I think is residual OCD flares, but otherwise she is sweet and happy. She does still have learning disabilities, which we believe developed from undiagnosed Pandas since about age 2. We are exploring a new private school for her this fall which offers the Arrowsmith Program -- thanks to Ronna from the forum who posted about her son's experience with it several months ago. We are praying it will make a big difference for our girl, now that she is better able to receive instruction. Gonna try and get those rutted neuronal pathways changed for the better, and we will try to keep her healthy.

 

Our last HDivig was in late June, and we felt that although she was doing really well, we thought she could still benefit from another. We did not see the horrible side-effects as we did in Feb, she's just getting stronger and stronger. We would do another if we felt she was slipping too far. For us, low dose monthly ivig which we did for months last fall only made her worse and I would not choose that path again. Of course, at the time we never knew we were dealing with mycoplasma/lymes, so cleaning up those co-infections is critical.

 

There are so many blood-curdling details I have left out and my little update sounds so neat and simple but it was, and is, anything but. We plan on keeping her on abx for a very long time...until she's 20 as far as I am concerned. We will do short steroid bursts as needed to assist.

 

A year later I can say we are in a MUCH better place, and I owe so much of our success to this forum and the some of the bravest parents I have ever met. All of you help immensely. I can still remember walking into Dr B's office last July, telling him we were going to do our first ivig with Dr. K and connecting the two doctors so we could have continuity locally when we returned from Chicago. I think my child was the first girl he treated for pandas, but he was ready, willing and able to help in any way he could. All the physicians have added their experience to this journey and we are so grateful.

 

We don't know if we will ever be free of pandas, but I feel we have some of the best tools to beat the living daylights out of it in the meantime. Blessings to you all!