Dd just had IVIG

[momaine]

Dd 13 (suffering with pandas 4 years now, undiagnosed till last Nov.) had IVIG with Dr. B yesterday and the day before. (1.5g/kg dose over two days) The staff was wonderful! They made us feel right at home and took care of our every need. They prepped dd with benedryl, Motrin, and Prednisone to prevent symptoms. Dd had no symptoms the first day or the second day. This is the morning of day 3 and she is still sleeping but she slept through the night. We even did sight seeing while here in CT.

 

Dr. B (whom I am SO GRATEFUL for) kept her on Zith but stopped the Augmentin. We're also stopping prednisone and Advil for now. We'll sit back and hope for the best. I'll try to let you know how things are going now and then. Probably not daily as I'm sure this will be an emotional time.

 

Angela

[kimballot]

Thanks for posting. So glad to hear it went well. Keep us posted!

[Fixit]

Dd 13 (suffering with pandas 4 years now, undiagnosed till last Nov.) had IVIG with Dr. B yesterday and the day before. (1.5g/kg dose over two days) The staff was wonderful! They made us feel right at home and took care of our every need. They prepped dd with benedryl, Motrin, and Prednisone to prevent symptoms. Dd had no symptoms the first day or the second day. This is the morning of day 3 and she is still sleeping but she slept through the night. We even did sight seeing while here in CT.

 

Dr. B (whom I am SO GRATEFUL for) kept her on Zith but stopped the Augmentin. We're also stopping prednisone and Advil for now. We'll sit back and hope for the best. I'll try to let you know how things are going now and then. Probably not daily as I'm sure this will be an emotional time.

 

Angela

 

Thanks for posting....

can i ask...were you on pred going before you went into ivig...or just the days of treatment

ie ....as opposed to waiting for symptoms...she was given these ahead of time....or a couple of days before....

[trggirl]

Thanks for sharing. Glad it went well!

[Debbie1]

Angela,

 

Glad to hear the procedure went smoothly. Dr. B. and his staff are wonderful - we are so grateful for them as well. I am glad to hear they are starting to add prednisone in the list of pre-meds. My kids both had viscious headaches and vomitting the day after IVIG despite being pumped with fluids for days before. Prednisone relieved the symptoms, but he did recommend premedicating them with the prednisone the next time around so it doesn't happen again. My ds and dd are 9 weeks and 6 weeks post IVIG, respectively, and doing great (I will post an update on them separately). Wishing you the same success!

 

Debbie

[momaine]

Dd 13 (suffering with pandas 4 years now, undiagnosed till last Nov.) had IVIG with Dr. B yesterday and the day before. (1.5g/kg dose over two days) The staff was wonderful! They made us feel right at home and took care of our every need. They prepped dd with benedryl, Motrin, and Prednisone to prevent symptoms. Dd had no symptoms the first day or the second day. This is the morning of day 3 and she is still sleeping but she slept through the night. We even did sight seeing while here in CT.

 

Dr. B (whom I am SO GRATEFUL for) kept her on Zith but stopped the Augmentin. We're also stopping prednisone and Advil for now. We'll sit back and hope for the best. I'll try to let you know how things are going now and then. Probably not daily as I'm sure this will be an emotional time.

 

Angela

 

Thanks for posting....

can i ask...were you on pred going before you went into ivig...or just the days of treatment

ie ....as opposed to waiting for symptoms...she was given these ahead of time....or a couple of days before....

Dd had been on 10mg prednisone every other day for the 20 days before IVIG. Previous to that she had done a 20 day taper. I pretty much begged for them to continue some amount of prednisone in the twenty days before out apt. because it brings her so much relief and couldn't bear for her to backslide again. Then, on the day of the IVIG (both days) she got 40mg. Then the two days following ivig she got/will get 30mg and 20mg. Then she is done with the prednisone.

 

On the drive home today she got a slight headache and I gave her some Advil which quickly relieved it. Up until today I had given her Advil every day since last November because that also brought her relief. we are also done with that and will only give it if we find it neccesary. Half an hour after the Advil she complained of a slight tummy upset. she had only had a doughnut for breakfast and I think it wasn't enough for the Advil. We stopped for lunch shortly after that and she was fine. she has had a very good day but she's been around people all day so its hard to say if it is helping yet or not. I asked her if she felt any different and she said no. She and i were alone for 20 minutes today and she seemed to have fewer symptoms in those 20 minutes than she normally does, but it was not a symptom free 20 minutes. Much better than I would have expected though. Too short a time to say if it means anything though. She has company overnight tonight so I won't know more till she is home with me alone, maybe tomorrow but maybe not till a few days. not sure what her plans are at this point.

[momaine]

Angela,

 

Glad to hear the procedure went smoothly. Dr. B. and his staff are wonderful - we are so grateful for them as well. I am glad to hear they are starting to add prednisone in the list of pre-meds. My kids both had viscious headaches and vomitting the day after IVIG despite being pumped with fluids for days before. Prednisone relieved the symptoms, but he did recommend premedicating them with the prednisone the next time around so it doesn't happen again. My ds and dd are 9 weeks and 6 weeks post IVIG, respectively, and doing great (I will post an update on them separately). Wishing you the same success!

 

Debbie

Debbie,

So good to hear your good news! I will look forward to hearing more. Louise also gave Dd intravenous fluids which may also have helped. The combination of meds and fluids really helped, I think. Glad they are learning and making positive changes as they learn more.

 

I cannot say enough about how Dr. B's office is run. The staff was truly wonderful and caring and efficient and open minded and interested in learning more. I LOVED Louise! I almost want to go back just to visit her! She was fantastic! The hotel was great too and they got it for us at quite a discounted rate through the doctors office for patients.

 

My dd was totally relaxed and comfortable all day both days. we brought a friend of hers and we played cards and games and went on laptops, etc. we sort of felt like we owned the office....like it was a second home. We even got a boy that was also being treated for PANDAS and his mom to join in our games with us. It was nice for my dd and the young man to meet each other. The whole trip was enjoyable. Swam in the hotel pool, shopped a lot, laughed and had fun. Bringing a friend was the key for my dd.

 

I had a preminition that it was all going to go smoothly and i'm so glad it did.

Angela

Edited June 26, 2010 by momaine

[Joan Pandas Mom]

Angela, thanks for the post and good luck for continued success. Do you know why Dr. B. put your d on Azithro vs. Augmentin? We are going on 5 weeks post IVIG and are on Augmentin. Just curious.

[wornoutmom]

So glad to hear you had a good experience! Hope it's all uphill from here!!

[saidie10]

Dd 13 (suffering with pandas 4 years now, undiagnosed till last Nov.) had IVIG with Dr. B yesterday and the day before. (1.5g/kg dose over two days) The staff was wonderful! They made us feel right at home and took care of our every need. They prepped dd with benedryl, Motrin, and Prednisone to prevent symptoms. Dd had no symptoms the first day or the second day. This is the morning of day 3 and she is still sleeping but she slept through the night. We even did sight seeing while here in CT.

 

Dr. B (whom I am SO GRATEFUL for) kept her on Zith but stopped the Augmentin. We're also stopping prednisone and Advil for now. We'll sit back and hope for the best. I'll try to let you know how things are going now and then. Probably not daily as I'm sure this will be an emotional time.

 

Angela

 

wonderful news! keep us posted and positive thoughts for swift and speedy recovery!!!

[Suzan]

Glad it went well and I wish you the best of luck!

 

Susan

[momaine]

Angela, thanks for the post and good luck for continued success. Do you know why Dr. B. put your d on Azithro vs. Augmentin? We are going on 5 weeks post IVIG and are on Augmentin. Just curious.

 

She was on both and he stopped the augmentin. I don't know why he chose that one but I do like the fact that Zith can be taken once per day.

[momaine]

Dd has had slight head aches, controllable with Advil, for the most part, the last few days since having IVIG.

 

OCD symptoms sligtly worse at night but she has stopped prednisone, augmentin, and is only taking advil when she has a headache and not prophylactically.

[momaine]

This morning dd woke with a very bad headache and said she woke ten times in the night with a headache but went back to sleep. I gave her something to eat and 2 200mg advil and she is now quietly lying on the couch in the dark, hopefully sleeping. This is day four post IVIG.

Edited June 28, 2010 by momaine