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2 weeks post ivig


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HI all and Happy 4th of July-

 

Gee I should be at a lake or something enjoying the summer but here I sit and I have tried to stay away. (Hi Jill!)

 

We are two weeks post IVIG with Dr K. My ds has been walking around with a puke bucket thinking he is going to hurl all the time. He does look slightly pale. He wants to do nothing but sit in the basement and watch cartoons or play video games.

There have been three times where we have had to sit next to him when he goes to bed at night. Again, he thinks he is going to hurl so he asks us to to stay with him until he falls asleep.

He cannot follow simple directions. He had a meltdown yesterday because he couldnt get his eyes to stop tearing up after he spilled a glass of water. He went upstairs and I could hear him talking to himself. I think he was trying to calm himself down.

Today he is back in the basement with the puke bucket again acting all weird wanting the lights off and laying on the couch all sloppy.

When he woke this morning he said his throat felt weird. I asked him if it hurt. He said no and ate breakfast and drank fine. He has said his throat felt funny two or three times since IVIG.

DS has only had one positive throat culture.

I gave him ibuprofren yesterday morning and bentonite clay later in the day.

Last night at bed he told me he wished he had never had IVIG.

His friend is having a laser tag party today and we told him he wasnt going. He doesnt care.

Now that I think about it, this is just what he was like 3 or 4 yrs back. A complete mope.

I dont mean to sound insensitive. I think he cant explain how he feels.

 

Any suggestions on what to do at this point? :blink:

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HI all and Happy 4th of July-

 

Gee I should be at a lake or something enjoying the summer but here I sit and I have tried to stay away. (Hi Jill!)

 

We are two weeks post IVIG with Dr K. My ds has been walking around with a puke bucket thinking he is going to hurl all the time. He does look slightly pale. He wants to do nothing but sit in the basement and watch cartoons or play video games.

There have been three times where we have had to sit next to him when he goes to bed at night. Again, he thinks he is going to hurl so he asks us to to stay with him until he falls asleep.

He cannot follow simple directions. He had a meltdown yesterday because he couldnt get his eyes to stop tearing up after he spilled a glass of water. He went upstairs and I could hear him talking to himself. I think he was trying to calm himself down.

Today he is back in the basement with the puke bucket again acting all weird wanting the lights off and laying on the couch all sloppy.

When he woke this morning he said his throat felt weird. I asked him if it hurt. He said no and ate breakfast and drank fine. He has said his throat felt funny two or three times since IVIG.

DS has only had one positive throat culture.

I gave him ibuprofren yesterday morning and bentonite clay later in the day.

Last night at bed he told me he wished he had never had IVIG.

His friend is having a laser tag party today and we told him he wasnt going. He doesnt care.

Now that I think about it, this is just what he was like 3 or 4 yrs back. A complete mope.

I dont mean to sound insensitive. I think he cant explain how he feels.

 

Any suggestions on what to do at this point? :blink:

 

 

Purely based on just the being sick thing....i know that ivig can make you naustiated...with that, i find, persoanlly..i cannot tolerate bright light...i like it dark

ANother thing is...i find tv and such makes me more nausious...so maybe limit the tv, video time...

then at night ...when it's not bright and not hot...(because heat makes you more naustious)maybe go outside to get some fresh air...

The throat thing i would keep an eye on...did yo peak at it....maybe he's mounting a response ????

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We are 18 days post IVIg with Dr K and our dd12 is sitting in front of the TV right now (going on 4 hours now)...moping for the most part which, I must admit, is better than yesterday and Thursday when she beat me and screamed for hours at a time. We have been invited to 2 parties today, she was unresponsive and shrugged when I offered her those choices. I was thinking last night that this is a turning back the page issue as we have seen this before but how does one ever know, really. SInce the IVIg I have tried really hard to create outings just to get her (and me) out of the house. Some days it works, others not so much. I wish I had more suggestions...I am putting all my trust in that moment when the healing shift occurs...1-8 weeks, 3.5 weeks...not much of an exact science is it? At least we have each other....

Mary

from Michigan

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What antibiotic and other meds is he on? Is it possible there is something else that is causing the nausea (antibiotic? a probiotic or supplement? a vitamin?).

 

I remember when I was pregnant, milk made me really naueseous, as did a full-strength multi-vit (I think it was the iron, I was okay if I cut it in 1/2).

 

It does seem weird that the IVIG is still causing nausea. For us it only lasted a about 3 days after IVIG the first time, 1-2 days the second.

 

Is there any improvement if you give him benedryl? or motion sickness meds? Marezine is my favorite http://www.amazon.com/Marezine-Motion-Sick...2/dp/B000052YFK Bonine for kids http://www.americarx.com/Products/19443.html has the same active ingredient (Cyclizine Hydrochloride). Just throwing out ideas. Poor kid.

 

Have you contacted Dr. K about this? I'm not surprised about your son still having pandas symtpoms or turning back the pages, the nausea is what I'm wondering about.

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thanks EAmom-

 

When I ask him if he feels like he is going to throw up he says no. I'm guessing that what it comes down to is that he feels different but he cant explain it to me. He is only slightly pale, no fever and is eating. I do think you are right with turning back the pages. He was like this when he was four. A complete mope.

 

I just need to stay positive. I went out for a run/walk and I feel better now. We upped vitamin e and c per dr ks post ivig treatment plan. I'll look into that.

 

Thanks again :blink:

 

What antibiotic and other meds is he on? Is it possible there is something else that is causing the nausea (antibiotic? a probiotic or supplement? a vitamin?).

 

I remember when I was pregnant, milk made me really naueseous, as did a full-strength multi-vit (I think it was the iron, I was okay if I cut it in 1/2).

 

It does seem weird that the IVIG is still causing nausea. For us it only lasted a about 3 days after IVIG the first time, 1-2 days the second.

 

Is there any improvement if you give him benedryl? or motion sickness meds? Marezine is my favorite http://www.amazon.com/Marezine-Motion-Sick...2/dp/B000052YFK Bonine for kids http://www.americarx.com/Products/19443.html has the same active ingredient (Cyclizine Hydrochloride). Just throwing out ideas. Poor kid.

 

Have you contacted Dr. K about this? I'm not surprised about your son still having pandas symtpoms or turning back the pages, the nausea is what I'm wondering about.

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Mary

 

thanks for your response. I will try to just stay positive. If this is turning back the pages then we need to just ride it out. I do have to say though that this is the most boring 4th of July I have ever had. Oh well!

 

Thank you again and best wishes for your daughter. :blink:

 

We are 18 days post IVIg with Dr K and our dd12 is sitting in front of the TV right now (going on 4 hours now)...moping for the most part which, I must admit, is better than yesterday and Thursday when she beat me and screamed for hours at a time. We have been invited to 2 parties today, she was unresponsive and shrugged when I offered her those choices. I was thinking last night that this is a turning back the page issue as we have seen this before but how does one ever know, really. SInce the IVIg I have tried really hard to create outings just to get her (and me) out of the house. Some days it works, others not so much. I wish I had more suggestions...I am putting all my trust in that moment when the healing shift occurs...1-8 weeks, 3.5 weeks...not much of an exact science is it? At least we have each other....

Mary

from Michigan

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What antibiotic and other meds is he on? Is it possible there is something else that is causing the nausea (antibiotic? a probiotic or supplement? a vitamin?).

 

I remember when I was pregnant, milk made me really naueseous, as did a full-strength multi-vit (I think it was the iron, I was okay if I cut it in 1/2).

 

It does seem weird that the IVIG is still causing nausea. For us it only lasted a about 3 days after IVIG the first time, 1-2 days the second.

 

Is there any improvement if you give him benedryl? or motion sickness meds? Marezine is my favorite http://www.amazon.com/Marezine-Motion-Sick...2/dp/B000052YFK Bonine for kids http://www.americarx.com/Products/19443.html has the same active ingredient (Cyclizine Hydrochloride). Just throwing out ideas. Poor kid.

 

Have you contacted Dr. K about this? I'm not surprised about your son still having pandas symtpoms or turning back the pages, the nausea is what I'm wondering about.

 

My dd had treatment 5/26-27 and had an episode of fever, bad headache and vomiting 12:15am, 6/19; the headaches came and went for the first few weeks, but this was the only vomiting episode 3 weeks post. She experiences a notable shift in symptoms the next day, but the fever and nausea were completely gone. I assumed this was related to ivig since it was so brief.

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I dont know about this. We just tried to get him to go for a ride in the car and then he said his stomach began to hurt. We even went back and got his ds and then tried again and it didnt work. He's still pale and laying in my bed watching spongebob. Hes drinking a lot of water too on his own w/out me bugging him. I'm giving it till tomorrow.

 

What antibiotic and other meds is he on? Is it possible there is something else that is causing the nausea (antibiotic? a probiotic or supplement? a vitamin?).

 

I remember when I was pregnant, milk made me really naueseous, as did a full-strength multi-vit (I think it was the iron, I was okay if I cut it in 1/2).

 

It does seem weird that the IVIG is still causing nausea. For us it only lasted a about 3 days after IVIG the first time, 1-2 days the second.

 

Is there any improvement if you give him benedryl? or motion sickness meds? Marezine is my favorite http://www.amazon.com/Marezine-Motion-Sick...2/dp/B000052YFK Bonine for kids http://www.americarx.com/Products/19443.html has the same active ingredient (Cyclizine Hydrochloride). Just throwing out ideas. Poor kid.

 

Have you contacted Dr. K about this? I'm not surprised about your son still having pandas symtpoms or turning back the pages, the nausea is what I'm wondering about.

 

My dd had treatment 5/26-27 and had an episode of fever, bad headache and vomiting 12:15am, 6/19; the headaches came and went for the first few weeks, but this was the only vomiting episode 3 weeks post. She experiences a notable shift in symptoms the next day, but the fever and nausea were completely gone. I assumed this was related to ivig since it was so brief.

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