Is sleeplessness a side effect of IVIG?

[KeithandElizabeth]

Hello:

 

We finished our second day of IVIG for our 7 year old son, Quinn, on Tuesday. We have had horrific sleeplessness nights on Monday, Tuesday and Wednesday. I am wondering if this is a side effect of IVIG or if this is part of his PANDA issues and we are experiences the "turning of the pages," as Dr. K says??? Has anyone else had an increase of sleep issues immediately following IVIG?

 

Elizabeth

[NancyD]

Hi Elizabeth,

 

Prior to beginning IVIG infusions my daughter had not slept through the night completely since she was 3 (when she had her first overnight onset of PANDAS symptoms), unless she was sleeping in my bed. I gave her melatonin every night and that always helped her get to sleep but she would awake around midnight and then a few times after that. Since the second or third infusion (at the age of 12) she has been sleeping in her own bed by herself completely through the night. If Quinn was having sleep problems before I'm guessing what you are experiencing now may be part of the PANDAS issues. But that's just a guess. I sure hope it improves soon!

 

Nancy

 

Hello:

 

We finished our second day of IVIG for our 7 year old son, Quinn, on Tuesday. We have had horrific sleeplessness nights on Monday, Tuesday and Wednesday. I am wondering if this is a side effect of IVIG or if this is part of his PANDA issues and we are experiences the "turning of the pages," as Dr. K says??? Has anyone else had an increase of sleep issues immediately following IVIG?

 

Elizabeth

[ShaesMom]

Hello:

 

We finished our second day of IVIG for our 7 year old son, Quinn, on Tuesday. We have had horrific sleeplessness nights on Monday, Tuesday and Wednesday. I am wondering if this is a side effect of IVIG or if this is part of his PANDA issues and we are experiences the "turning of the pages," as Dr. K says??? Has anyone else had an increase of sleep issues immediately following IVIG?

 

Elizabeth

 

 

We did not experience any issues with sleeplessness after the IVIG. Is he having any other symptoms or side effects that may be contributing to his inability to fall asleep (joint pain, headaches etc)?

[melanie]

Hello:

 

We finished our second day of IVIG for our 7 year old son, Quinn, on Tuesday. We have had horrific sleeplessness nights on Monday, Tuesday and Wednesday. I am wondering if this is a side effect of IVIG or if this is part of his PANDA issues and we are experiences the "turning of the pages," as Dr. K says??? Has anyone else had an increase of sleep issues immediately following IVIG?

 

Elizabeth

 

 

We did not experience any issues with sleeplessness after the IVIG. Is he having any other symptoms or side effects that may be contributing to his inability to fall asleep (joint pain, headaches etc)?

 

 

Hi I dont think dannys had a problem last night Hes older so he doesnt look for us and I checked him and he was sleeping ok We did the the IVIG in the hospital so they didnt let him sleep Hows your son other wise? Do you see anything yet I dont I know im pushing it but...

[KeithandElizabeth]

Hi Melanie:

 

We have finally noticed a difference in our son tonight after 3 sleepless nights and 2 days of not noticing much change post IVIG.

 

Quinn asked to play a game of Monopoly tonight. He used to love playing games, etc.... pre - PANDAS. During the last 3 1/2 months of acute PANDA symptoms, we could not get Quinn to really interact with us in terms of reading books, going outside, or playing games. He was not very "present" mentally.

 

Tonight he hung out with us and read books and played games, etc..... He was still scared to go to bed and he has been sticking his tongue out more than he did pre-IVIG and sucking on his shirt until there are holes. But, we are so excited that he was so interactive tonight!!!! It has been such a panicky 3 1/2 months for our whole family. And I know this healing journey can be bumpy.

 

I hope you notice some changes to give you some hope. Please feel free to contact me at any time.

 

Elizabeth

[melanie]

Hi Melanie:

 

We have finally noticed a difference in our son tonight after 3 sleepless nights and 2 days of not noticing much change post IVIG.

 

Quinn asked to play a game of Monopoly tonight. He used to love playing games, etc.... pre - PANDAS. During the last 3 1/2 months of acute PANDA symptoms, we could not get Quinn to really interact with us in terms of reading books, going outside, or playing games. He was not very "present" mentally.

 

Tonight he hung out with us and read books and played games, etc..... He was still scared to go to bed and he has been sticking his tongue out more than he did pre-IVIG and sucking on his shirt until there are holes. But, we are so excited that he was so interactive tonight!!!! It has been such a panicky 3 1/2 months for our whole family. And I know this healing journey can be bumpy.

 

I hope you notice some changes to give you some hope. Please feel free to contact me at any time.

 

Elizabeth

 

 

 

I am VERY happy for you !!! Danny seemed calm yesterday He didnt seem as anxious breating better (he got a breating tic) anxiety I think. Were home together today so Ill watch hm like a hawk.Hes still sleeping now his school doesnt start untill tuesday.Did Quinn have a headache or is he complaining about anything? I gave dan motrin before bed .Did your md suggest anything?

 

Keep me posted Ill do the same Melanie

[KeithandElizabeth]

Hi Melanie:

 

Quinn definitely woke up with headaches and we gave him motrin, which seemed to help.

 

After my email last night about our great interactive evening, Quinn had hallucinations in the middle of the night for the first time since before steroids!!! Yikes As I said, this may be a bumpy journey!!!

 

How are you doing today??

 

elizabeth

[ShaesMom]

OMG! My dd has a terrible habit of chewing on her shirts--I never made the connection with Pandas. This disease is just amazing in what it can cause these kids to do!

 

Hi Melanie:

 

We have finally noticed a difference in our son tonight after 3 sleepless nights and 2 days of not noticing much change post IVIG.

 

Quinn asked to play a game of Monopoly tonight. He used to love playing games, etc.... pre - PANDAS. During the last 3 1/2 months of acute PANDA symptoms, we could not get Quinn to really interact with us in terms of reading books, going outside, or playing games. He was not very "present" mentally.

 

Tonight he hung out with us and read books and played games, etc..... He was still scared to go to bed and he has been sticking his tongue out more than he did pre-IVIG and sucking on his shirt until there are holes. But, we are so excited that he was so interactive tonight!!!! It has been such a panicky 3 1/2 months for our whole family. And I know this healing journey can be bumpy.

 

I hope you notice some changes to give you some hope. Please feel free to contact me at any time.

 

Elizabeth

 

 

 

I am VERY happy for you !!! Danny seemed calm yesterday He didnt seem as anxious breating better (he got a breating tic) anxiety I think. Were home together today so Ill watch hm like a hawk.Hes still sleeping now his school doesnt start untill tuesday.Did Quinn have a headache or is he complaining about anything? I gave dan motrin before bed .Did your md suggest anything?

 

Keep me posted Ill do the same Melanie