Doing well, I think its time to share

[Priscilla]

Forgive me, this may be a little long. I have hesitated to post for the fear of what many of you would understand-regression. I think it is time to share now though. My dd 8 is doing well, not 100%, but then, what is really 100%. All I know is, she is doing very well. We have just completed an aggressive course of IVIG. Dosed at 2gm/kg, started July 31, given every 4 weeks, for 4 doses. We just had our last one last saturday. I have also done what many would considered crazy, but I stopped abx and EVERYTHING on Oct 2. I gave OLE for the 1st few days, then noticed an increase in tics, so I stopped everything. I am just giving her a whole food vitamin. I did this because I had a high suspicion that yeast/fungal issues were impeding progress. Some of the behaviors I read about yeast I thought may have been getting confused with PANDAS (anger, inability to focus...) So here we are, a month off of everything, I prepared myself for a detox period, a few times I thought about restarting abx, but something bigger than me, deep in my gut, told me to wait another day, then another, just take it one day at time (I pray for guidance daily). So now, rage is what I can say pretty much gone (she still has little moments, but they may just be 8 year old moments), OCD is much milder, but she is much more aware of it, and taking steps to tackle fears 1 at time. She is SO AFFECTIONATE, haven't seen this since she was 3! This is the best part!! So much more cooperative. I am also amazed at how well she seems to be able to express herself. She is saying things that not only make me chuckle, but the maturity of the content just blows me away! The only lingering thing is some tics, pretty mild, and really only present when she is trying to relax (mostly while watching TV) and the tics don't really seem to bother her. I am so greatful to God for our progress, and of course I fear regression. I just want to share my reasons for stopping all treatments:

 

1- like I said, I have a suspicion that the yeast impedes progress, overgrowth of yeast will also tax her immune system

2- I really have a hard time with abx for very long term. dd was already on isoniazide for a yr following + TB test, they can really wreak havoc on the gut, which I also feels throws off the immune system

3- I believe that God created our bodies, with an incredible capacity to heal, especially children, it works continously to maintain homeostasis, adding anything that the body needs to identify, sort out,and process takes time away from rebalancing. This I believe also includes "natural medicines" many of which are also manufactured by pharmaceutical companies. I liken this to receiving many vaccines at once, the body needs to process all of these, and mount different immune response for each, very taxing on the system. I believe it is the same with too many meds/supplements....

4- My other fear with long term abx is what will I do when she needs them for something else, and they do not work? So I wanted to have that reserve and be off of them whenever I can.

5- Most importantly PRAYER AND FAITH and the good LORD are working here. I can't say enough about how strongly I feels GOD is healing, and molding our entire family for his plans.

 

I really need to stress that I am NOT GIVING MEDICAL ADVICE, I just want to share what it working for us. Many may have very strong opinions on what I am doing, but like I said, it is working for us, so I just want to share and give hope. I pray for all of you. I will continue to update- Dec will be scary, that is the month she always gets sick.

[Worried_Dad]

Great news, Priscilla, thanks for sharing! Here's hoping you see nothing but continued progress.

[peglem]

Its always so great to hear progress! Please keep us updated- I don't have the guts to drop abx (yet), but sure is nice to hear that working for you!

[KaraM]

Thank you for sharing your wonderful news. I am a true believer in trusting your gut.

 

 

[thereishope]

Glad to hear things are going well! I wish your daughter, you, and your family continued health and happiness.

[pathfinder]

Priscilla

I am so very happy to hear your dd is doing well.

It seems like only yesterday when I emailed you for Dr. Lin

We both came a long way since then. My son also is doing really really well after 2nd HD IVIG.

Life is good here in Southern California.( at least in Prschilla and Michelle's house holds)

Cheers!!!!

[amy s]

Excellent news!

[Stephanie2]

Wow, it took me a year just to get up the guts to go to OLE! You are brave and I applaud each and every one of those reasons to stop abx. Please keep us informed of how Dec. goes. For us, Feb is always the bad month...

Forgive me, this may be a little long. I have hesitated to post for the fear of what many of you would understand-regression. I think it is time to share now though. My dd 8 is doing well, not 100%, but then, what is really 100%. All I know is, she is doing very well. We have just completed an aggressive course of IVIG. Dosed at 2gm/kg, started July 31, given every 4 weeks, for 4 doses. We just had our last one last saturday. I have also done what many would considered crazy, but I stopped abx and EVERYTHING on Oct 2. I gave OLE for the 1st few days, then noticed an increase in tics, so I stopped everything. I am just giving her a whole food vitamin. I did this because I had a high suspicion that yeast/fungal issues were impeding progress. Some of the behaviors I read about yeast I thought may have been getting confused with PANDAS (anger, inability to focus...) So here we are, a month off of everything, I prepared myself for a detox period, a few times I thought about restarting abx, but something bigger than me, deep in my gut, told me to wait another day, then another, just take it one day at time (I pray for guidance daily). So now, rage is what I can say pretty much gone (she still has little moments, but they may just be 8 year old moments), OCD is much milder, but she is much more aware of it, and taking steps to tackle fears 1 at time. She is SO AFFECTIONATE, haven't seen this since she was 3! This is the best part!! So much more cooperative. I am also amazed at how well she seems to be able to express herself. She is saying things that not only make me chuckle, but the maturity of the content just blows me away! The only lingering thing is some tics, pretty mild, and really only present when she is trying to relax (mostly while watching TV) and the tics don't really seem to bother her. I am so greatful to God for our progress, and of course I fear regression. I just want to share my reasons for stopping all treatments:

 

1- like I said, I have a suspicion that the yeast impedes progress, overgrowth of yeast will also tax her immune system

2- I really have a hard time with abx for very long term. dd was already on isoniazide for a yr following + TB test, they can really wreak havoc on the gut, which I also feels throws off the immune system

3- I believe that God created our bodies, with an incredible capacity to heal, especially children, it works continously to maintain homeostasis, adding anything that the body needs to identify, sort out,and process takes time away from rebalancing. This I believe also includes "natural medicines" many of which are also manufactured by pharmaceutical companies. I liken this to receiving many vaccines at once, the body needs to process all of these, and mount different immune response for each, very taxing on the system. I believe it is the same with too many meds/supplements....

4- My other fear with long term abx is what will I do when she needs them for something else, and they do not work? So I wanted to have that reserve and be off of them whenever I can.

5- Most importantly PRAYER AND FAITH and the good LORD are working here. I can't say enough about how strongly I feels GOD is healing, and molding our entire family for his plans.

 

I really need to stress that I am NOT GIVING MEDICAL ADVICE, I just want to share what it working for us. Many may have very strong opinions on what I am doing, but like I said, it is working for us, so I just want to share and give hope. I pray for all of you. I will continue to update- Dec will be scary, that is the month she always gets sick.

[Priscilla]

Priscilla

I am so very happy to hear your dd is doing well.

It seems like only yesterday when I emailed you for Dr. Lin

We both came a long way since then. My son also is doing really really well after 2nd HD IVIG.

Life is good here in Southern California.( at least in Prschilla and Michelle's house holds)

Cheers!!!!

So glad to hear you are doing well too!!! Hope it continues!

[Priscilla]

And then there was PEACE... I'm over the top happy for you and your entire family. You all are very special to me. I'm happy you found a path that worked for your baby girl! You are a very good Mother Pricilla and I thank you for your friendship and support you have given to me since meeting you.

 

I will remember to thank GOD tonight for the healing that he sent to you, and will ask him to send some this way too!

 

Give her a big hug from US!

 

Love,

Wendy

Thanks Wendy, right back at ya sister!