Update on Dd age 13

[momaine]

I thought I'd share a brief update since I have a moment. It's been 2 weeks and 3 days since the completion of dd's first 1.5g/kg ivig with Dr. B.

 

After her IVIG we stopped Augmentin, stopped Prednisone 2 days later, and stopped giving Advil daily. She is still on 500mg Zith per day, Singulair, Diflucan, and 40mg Celexa. (as well as probiotics and some vitamins)

 

We have kept dd VERY busy since coming home from her IVIG. She always does better with other people around so its sometimes hard to know exactly how she is doing until we are alone, which hasn't been often.

 

Some things worsened right after she had the IVIG. She has walking issues like Sammy Maloney and those worsened as well as her need to repeat physical things. Her verbal repetitions however, have eased by probably 60%. One thing about my dd's symptoms however, is that they have always morphed. So, I'm not positive if this is just a change of symptoms or an improvement, though if I had to bet money, I'd put in on improvement. (trying not to jinx us) I haven't been journaling, which I should be, but I realized last night when she asked two reassurance quesetions quietly in front of company, that she had not asked any reassurance questions for at least a few days. (this has been her worst symptom by far and one that she still did quietly even when she had company if they stayed for an extended period)

 

Bedtime on the days that we have not had overnight company have continued to be somewhat challenging (repeating walking in room, getting in bed, needs me to cover her up multiple times), however, the amount of reassuance questions she asks at bedtime is down significantly. (except for one night two nights ago)

 

She had one night a couple nights ago where she went to sleep quickly and peacefully without asking any reassurance questions and with a peaceful look on her face. (Best night since probably early last summer) Typically at bedtime she struggles the most with reassurance questions and facial motor tics. The facial motor tics had lessened to almost gone in the month before IVIG when she was on prednisone for most of the month. Those have not returned except very occasionally when she is very anxious.

 

One of the biggest changes I have noticed though, is that her frustration level is down a lot. Even thought she is repeating more and having more trouble walking, she is less frustrated and angry about it. She also takes it better when I refuse to participate in some of her rituals. If I had refused to repeat something for her before (like hand her a drink twice instead of just once), she would sometimes on a bad day pitch a huge fit and cry and sometimes rage on the really bad days and there was no reasoning with her. It was so out of character and so out of context. She has been really stable emotionally since the IVIG with a normal reaction to her frustration.

 

When I've asked her if she is feeling any different, up until yesterday she said she was worse, even though I feel I've seen some positive changes. But yesterday when I asked her quietly (she had company) she said she felt like she was doing a little better.

 

I read on Dr. K's website, that kids over the age of ten, usually see the most improvement around week 3 post IVIG. I'm hoping that is the case for my dd as well but I'll also be satisfied with slow and steady improvement, if that is what we get.

 

I'm very happy that we went ahead with the IVIG. No regrets so far. We took a friend with us for the IVIG and I'd recommend it to anyone whose child does better in the presence of company. She did so well that the nurses had to ask me privately what her symptoms were because she seemed normal to them.

 

If they had seen her last fall and this last winter when she couldn't shower or dress herself or brush her teeth without crying and raging because the urge to repeat was so strong, they wouldn't have recognized her. I hope that is behind us for good!

[saidie10]

I thought I'd share a brief update since I have a moment. It's been 2 weeks and 3 days since the completion of dd's first 1.5g/kg ivig with Dr. B.

 

After her IVIG we stopped Augmentin, stopped Prednisone 2 days later, and stopped giving Advil daily. She is still on 500mg Zith per day, Singulair, Diflucan, and 40mg Celexa. (as well as probiotics and some vitamins)

 

We have kept dd VERY busy since coming home from her IVIG. She always does better with other people around so its sometimes hard to know exactly how she is doing until we are alone, which hasn't been often.

 

Some things worsened right after she had the IVIG. She has walking issues like Sammy Maloney and those worsened as well as her need to repeat physical things. Her verbal repetitions however, have eased by probably 60%. One thing about my dd's symptoms however, is that they have always morphed. So, I'm not positive if this is just a change of symptoms or an improvement, though if I had to bet money, I'd put in on improvement. (trying not to jinx us) I haven't been journaling, which I should be, but I realized last night when she asked two reassurance quesetions quietly in front of company, that she had not asked any reassurance questions for at least a few days. (this has been her worst symptom by far and one that she still did quietly even when she had company if they stayed for an extended period)

 

Bedtime on the days that we have not had overnight company have continued to be somewhat challenging (repeating walking in room, getting in bed, needs me to cover her up multiple times), however, the amount of reassuance questions she asks at bedtime is down significantly. (except for one night two nights ago)

 

She had one night a couple nights ago where she went to sleep quickly and peacefully without asking any reassurance questions and with a peaceful look on her face. (Best night since probably early last summer) Typically at bedtime she struggles the most with reassurance questions and facial motor tics. The facial motor tics had lessened to almost gone in the month before IVIG when she was on prednisone for most of the month. Those have not returned except very occasionally when she is very anxious.

 

One of the biggest changes I have noticed though, is that her frustration level is down a lot. Even thought she is repeating more and having more trouble walking, she is less frustrated and angry about it. She also takes it better when I refuse to participate in some of her rituals. If I had refused to repeat something for her before (like hand her a drink twice instead of just once), she would sometimes on a bad day pitch a huge fit and cry and sometimes rage on the really bad days and there was no reasoning with her. It was so out of character and so out of context. She has been really stable emotionally since the IVIG with a normal reaction to her frustration.

 

When I've asked her if she is feeling any different, up until yesterday she said she was worse, even though I feel I've seen some positive changes. But yesterday when I asked her quietly (she had company) she said she felt like she was doing a little better.

 

I read on Dr. K's website, that kids over the age of ten, usually see the most improvement around week 3 post IVIG. I'm hoping that is the case for my dd as well but I'll also be satisfied with slow and steady improvement, if that is what we get.

 

I'm very happy that we went ahead with the IVIG. No regrets so far. We took a friend with us for the IVIG and I'd recommend it to anyone whose child does better in the presence of company. She did so well that the nurses had to ask me privately what her symptoms were because she seemed normal to them.

 

If they had seen her last fall and this last winter when she couldn't shower or dress herself or brush her teeth without crying and raging because the urge to repeat was so strong, they wouldn't have recognized her. I hope that is behind us for good!

 

Congratulations! It is wonderful that you are seeing improvement! Sending positive thoughts your way for continued success!!!

[Fixit]

I am so happy for your daughter and you....

thank you for posting so soon...i am sure you are busy with recovery....

What Wonderful News.....

Great thoughts and continued healing to you and your DD

[kimballot]

Thank you for posting. I needed to read this! All the best to you and your daughter and please continue to keep us posted!

[Suzan]

I agree, thanks for posting. We are 1 week past our 2nd low dose IVIG. I assume we are working towards higher doses. So far, I see some nice changes but I'm still waiting. I am glad you see the benefits and are hanging in there for more healing.

 

Susan

[mandyknowles]

WOW that is awesome!!