IVIG- How Do I Love Thee?

[Phasmid]

Let me count the ways...

 

1. He asked me to brush his hair tonight because it's "soothing" (haven't really ever been able to brush his hair- he has no urge to himself- without getting smacked)
2. He took a shower tonight when I ASKED him to... one time! (even Grandma was floored)
3. Didn't erupt over me delaying our trip by an hour to the skateboard shop
4. Apologized to me twice in two days for raising his voice at me, and said he felt guilty (has never happened)
5. I don't have to put away the weigh scale three times per day
6. He doesn't ask me 50 times a day if he's fat, or if his food will make him fat, or anything else about "fat" (a fairly new issue)
7. He can read again without compulsive stopping/re-reading (fairly new issue)
8. Goes to sleep in his room by himself (lifetime achievement at 12 years old)
9. He can spontaneously smile and be nice to me and just talk about something
10. He doesn't repeat stuff that he hears/mimic movements that he sees while watching t.v. (which made watching t.v. together as a family an impossibility)

This is after six months of antibiotic therapy (azithromycin), which alone worked extremely well to address other issues, and one low-dose IVIG infusion three weeks ago. I don't know how long this will last, but life is good right now after fighting for six long years. He would not be this far without all of your input, encouragement, and shared information/advice. Thank you all from the bottom of our hearts.

 

 

[kthomas]

Let me count the ways...

 

1. He asked me to brush his hair tonight because it's "soothing" (haven't really ever been able to brush his hair- he has no urge to himself- without getting smacked)
2. He took a shower tonight when I ASKED him to... one time! (even Grandma was floored)
3. Didn't erupt over me delaying our trip by an hour to the skateboard shop
4. Apologized to me twice in two days for raising his voice at me, and said he felt guilty (has never happened)
5. I don't have to put away the weigh scale three times per day
6. He doesn't ask me 50 times a day if he's fat, or if his food will make him fat, or anything else about "fat" (a fairly new issue)
7. He can read again without compulsive stopping/re-reading (fairly new issue)
8. Goes to sleep in his room by himself (lifetime achievement at 12 years old)
9. He can spontaneously smile and be nice to me and just talk about something
10. He doesn't repeat stuff that he hears/mimic movements that he sees while watching t.v. (which made watching t.v. together as a family an impossibility)

This is after six months of antibiotic therapy (azithromycin), which alone worked extremely well to address other issues, and one low-dose IVIG infusion three weeks ago. I don't know how long this will last, but life is good right now after fighting for six long years. He would not be this far without all of your input, encouragement, and shared information/advice. Thank you all from the bottom of our hearts.

 

Prayers and blessings to you and your son.

[DebC]

Let me count the ways...

 

1. He asked me to brush his hair tonight because it's "soothing" (haven't really ever been able to brush his hair- he has no urge to himself- without getting smacked)
2. He took a shower tonight when I ASKED him to... one time! (even Grandma was floored)
3. Didn't erupt over me delaying our trip by an hour to the skateboard shop
4. Apologized to me twice in two days for raising his voice at me, and said he felt guilty (has never happened)
5. I don't have to put away the weigh scale three times per day
6. He doesn't ask me 50 times a day if he's fat, or if his food will make him fat, or anything else about "fat" (a fairly new issue)
7. He can read again without compulsive stopping/re-reading (fairly new issue)
8. Goes to sleep in his room by himself (lifetime achievement at 12 years old)
9. He can spontaneously smile and be nice to me and just talk about something
10. He doesn't repeat stuff that he hears/mimic movements that he sees while watching t.v. (which made watching t.v. together as a family an impossibility)

This is after six months of antibiotic therapy (azithromycin), which alone worked extremely well to address other issues, and one low-dose IVIG infusion three weeks ago. I don't know how long this will last, but life is good right now after fighting for six long years. He would not be this far without all of your input, encouragement, and shared information/advice. Thank you all from the bottom of our hearts.

 

 

I LOVE posts like this!

[norcalmom]

sooo happy for you both!

[amyjoy]

What a delight. Normal is so...so good, just so normally good.

[T_Mom]

Incredible and very encouraging to me tonight. Thank you and may it continue to get better and better for your dear one.

[pathfinder]

I am so very very happy for you and your son.

[KaraM]

Just beautiful...

[Tenacity]

Let me count the ways...

 

1. He asked me to brush his hair tonight because it's "soothing" (haven't really ever been able to brush his hair- he has no urge to himself- without getting smacked)
2. He took a shower tonight when I ASKED him to... one time! (even Grandma was floored)
3. Didn't erupt over me delaying our trip by an hour to the skateboard shop
4. Apologized to me twice in two days for raising his voice at me, and said he felt guilty (has never happened)
5. I don't have to put away the weigh scale three times per day
6. He doesn't ask me 50 times a day if he's fat, or if his food will make him fat, or anything else about "fat" (a fairly new issue)
7. He can read again without compulsive stopping/re-reading (fairly new issue)
8. Goes to sleep in his room by himself (lifetime achievement at 12 years old)
9. He can spontaneously smile and be nice to me and just talk about something
10. He doesn't repeat stuff that he hears/mimic movements that he sees while watching t.v. (which made watching t.v. together as a family an impossibility)

This is after six months of antibiotic therapy (azithromycin), which alone worked extremely well to address other issues, and one low-dose IVIG infusion three weeks ago. I don't know how long this will last, but life is good right now after fighting for six long years. He would not be this far without all of your input, encouragement, and shared information/advice. Thank you all from the bottom of our hearts.

 

 

THANK YOU!

 

Boy, did I ever need this dose of hope this morning! Can't wait to show this beautiful "poem" to my husband when he wakes up!

 

I realize you must have posted about these things in the past, but if you have a chance, would you please tell me your thoughts/observations about the azithromycin? (My son has never tested positive for strep [although he likely had it at times, when he wasn't tested], but was "officially" diagnosed with mycoplasma pneumonia when he was five, and has high IgG antibodies to it.) We are thinking of asking our doctor whether we might switch from high-dose amoxycillin/clavulanic-acid to azithromycin.

 

Also, how many IVIG treatments has your son had over those long six years?

 

I'm deeply happy for you and your son! -- to the point of tears. I pray your healing continues -- and that I'll be able to write my own version of "IVIG -- How do I love thee? Let me count the ways" some day soon!

 

Tenacity

Edited January 29, 2011 by Tenacity

[Fixit]

PHas!!! I've been waiting, and hopeing and praying for you and your ds and this post!!

[thereishope]

I'm so happy for you and your son!

[browneyesmom]

Oh, what beautiful, wonderful news... soooo happy for you both!!! ♥

[3boysmom]

wow! Your #3, #6, and #10 sound like my ds11! I have never read anyone else describe the #10 before. Isn't a strange one to be in the room with. It blows me away to watch how he acts out the TV moves with such accuracy. We too have made much improvements on antibiotics, but are at a standstill. Just returned from Dr. B yesterday and it looks as though it is time to move onto an IVIG. Dr. L had said the same thing, so 2 PANDAS opinions for IVIG....time to move forward. I hope we have good results like you. Keep us posted!

 

Prayers,

Linda

[Tamistwins]

such wonderful news and how wonferful your family must feel. i hope he continues to improve!

Let me count the ways...

 

1. He asked me to brush his hair tonight because it's "soothing" (haven't really ever been able to brush his hair- he has no urge to himself- without getting smacked)
2. He took a shower tonight when I ASKED him to... one time! (even Grandma was floored)
3. Didn't erupt over me delaying our trip by an hour to the skateboard shop
4. Apologized to me twice in two days for raising his voice at me, and said he felt guilty (has never happened)
5. I don't have to put away the weigh scale three times per day
6. He doesn't ask me 50 times a day if he's fat, or if his food will make him fat, or anything else about "fat" (a fairly new issue)
7. He can read again without compulsive stopping/re-reading (fairly new issue)
8. Goes to sleep in his room by himself (lifetime achievement at 12 years old)
9. He can spontaneously smile and be nice to me and just talk about something
10. He doesn't repeat stuff that he hears/mimic movements that he sees while watching t.v. (which made watching t.v. together as a family an impossibility)

This is after six months of antibiotic therapy (azithromycin), which alone worked extremely well to address other issues, and one low-dose IVIG infusion three weeks ago. I don't know how long this will last, but life is good right now after fighting for six long years. He would not be this far without all of your input, encouragement, and shared information/advice. Thank you all from the bottom of our hearts.

[Mary M]

Thank you for sharing...we all need to hear hopeful, encouraging posts like this...may your path continue to be one of healing and hope!

Mary