afraid to go to sleep 5 weeks post ivig

[Johnsmom]

We are 5 weeks post IVIG. My DS used to love his bed. He would read and/or play DS until the time we told him to and then shut the lights out and go to sleep. This was not the case as a baby though.

 

Ever since we had IVIG he has a fear that he is going to throw up again. He keeps telling me that he feels different now at bedtime. The other night he explained that the feeling in his throat is like bad orange juice. He says it only happens when he lays down at night. Tonight he is saying it feels tingly and freezing. He said his heart felt cold too.

 

We stayed in a hotel last night and it didnt bother him at all. I slept in the bed next to him.

 

Could this be some kind of acid reflux or is it just seperation anxiety that just wont go away?

 

Thanks

johnsmom

[philamom]

We are 5 weeks post IVIG. My DS used to love his bed. He would read and/or play DS until the time we told him to and then shut the lights out and go to sleep. This was not the case as a baby though.

 

Ever since we had IVIG he has a fear that he is going to throw up again. He keeps telling me that he feels different now at bedtime. The other night he explained that the feeling in his throat is like bad orange juice. He says it only happens when he lays down at night. Tonight he is saying it feels tingly and freezing. He said his heart felt cold too.

 

We stayed in a hotel last night and it didnt bother him at all. I slept in the bed next to him.

 

Could this be some kind of acid reflux or is it just seperation anxiety that just wont go away?

 

Thanks

johnsmom

[philamom]

We are 5 weeks post IVIG. My DS used to love his bed. He would read and/or play DS until the time we told him to and then shut the lights out and go to sleep. This was not the case as a baby though.

 

Ever since we had IVIG he has a fear that he is going to throw up again. He keeps telling me that he feels different now at bedtime. The other night he explained that the feeling in his throat is like bad orange juice. He says it only happens when he lays down at night. Tonight he is saying it feels tingly and freezing. He said his heart felt cold too.

 

We stayed in a hotel last night and it didnt bother him at all. I slept in the bed next to him.

 

Could this be some kind of acid reflux or is it just seperation anxiety that just wont go away?

 

Thanks

johnsmom

 

 

 

Johnsmom,

I've been lurking and plan to post my daughter's story tommorow but wanted to comment. Is your son still on 250 Aug twice a day? You may want to comment to Dr. K about the heartburn. Six months after Ivig with Dr. K my daughter was having difficulties swallowing her antibiotic. She then vomited one morning and two weeks later (out of the blue) began with SEVERE heartburn. This then led to a SEVERE fear of choking and vomiting and she was unable to leave our house for three months. I'm pretty sure she contracted strep right before it began (of course negative culture/titer) because a friend had it in her classroom. When I contacted Dr. K he thought it was definetly due to the PANDAS. Her GI doctor prescribed prevacid for 12 weeks and we raised the head of her bed...she also had a lot of problems at night time. We eventually did IVIG again...but i'll post tomorrow.

 

Maybe Dr. K may want to increase the Augmentin slightly higher for 14 days...I know you recently thought your son had strep after IVIG?

 

Thinking of you-

[saidie10]

We are 5 weeks post IVIG. My DS used to love his bed. He would read and/or play DS until the time we told him to and then shut the lights out and go to sleep. This was not the case as a baby though.

 

Ever since we had IVIG he has a fear that he is going to throw up again. He keeps telling me that he feels different now at bedtime. The other night he explained that the feeling in his throat is like bad orange juice. He says it only happens when he lays down at night. Tonight he is saying it feels tingly and freezing. He said his heart felt cold too.

 

We stayed in a hotel last night and it didnt bother him at all. I slept in the bed next to him.

 

Could this be some kind of acid reflux or is it just seperation anxiety that just wont go away?

 

Thanks

johnsmom

 

Oh no poor thing! I wonder why this is happening all of a sudden. Bedtime fears were not one of his PANDAS symptom pre IVIG?

[Kristy S]

Antibiotics frequently can cause stomach problems and even ulcers. After my ds got his tonsils out (and he's not had PANDAS) he had heartburn and was ill and would not eat. He's 5 years old and only 36 lbs wet and lost 2 lbs. It was very scary. So we put him on Prevacid and after about a week on it he started being able to eat more, after 2 weeks he gained .5 lb and started sleeping better too. When they lie down the acid can come back up easier. Our doc put him on the Prevacid for a solid 3 months to make sure everything healed.

 

You might not know if it's working though until after a week or 2 since the damage to his stomach can take quite a while to be repaired.

 

Try to steer him away from acidic foods and high fat things as well, especially near bed-time.

 

I hope this helps a bit. MY ds is near the end of month 2 and is eating normally now and not crying at night.

 

Kristy

[Johnsmom]

According to the rapid and 72 hour he didnt have strep. When i asked him about it a few weeks later he told me that his throat did not hurt that day that we took him to urgent care but that it felt weird. I wonder if the augmentin is making him have some kind of reflux. He eventually goes to sleep but we never had any problems before. I guess its an e-mail to Dr k now.

 

thanks for your response.

 

 

 

We are 5 weeks post IVIG. My DS used to love his bed. He would read and/or play DS until the time we told him to and then shut the lights out and go to sleep. This was not the case as a baby though.

 

Ever since we had IVIG he has a fear that he is going to throw up again. He keeps telling me that he feels different now at bedtime. The other night he explained that the feeling in his throat is like bad orange juice. He says it only happens when he lays down at night. Tonight he is saying it feels tingly and freezing. He said his heart felt cold too.

 

We stayed in a hotel last night and it didnt bother him at all. I slept in the bed next to him.

 

Could this be some kind of acid reflux or is it just seperation anxiety that just wont go away?

 

Thanks

johnsmom

 

 

 

Johnsmom,

I've been lurking and plan to post my daughter's story tommorow but wanted to comment. Is your son still on 250 Aug twice a day? You may want to comment to Dr. K about the heartburn. Six months after Ivig with Dr. K my daughter was having difficulties swallowing her antibiotic. She then vomited one morning and two weeks later (out of the blue) began with SEVERE heartburn. This then led to a SEVERE fear of choking and vomiting and she was unable to leave our house for three months. I'm pretty sure she contracted strep right before it began (of course negative culture/titer) because a friend had it in her classroom. When I contacted Dr. K he thought it was definetly due to the PANDAS. Her GI doctor prescribed prevacid for 12 weeks and we raised the head of her bed...she also had a lot of problems at night time. We eventually did IVIG again...but i'll post tomorrow.

 

Maybe Dr. K may want to increase the Augmentin slightly higher for 14 days...I know you recently thought your son had strep after IVIG?

 

Thinking of you-

[philamom]

You may want to try some Tums to see if that helps. My daughter also stopped eating and quickly lost weight and that's when we started the Prevacid. Try eliminating citrus fruits, anythng acidic, and chocolate. We were told not to give Motrin/Advil in case it was due to ulcers. We also put 2 blocks of wood under the head of the bed....you just can't raise the pillows. We are still dealing with a fear of vomiting...not as severe. My daughter used to ask me at least 50 times a day "am i going to throw-up".

 

According to the rapid and 72 hour he didnt have strep. When i asked him about it a few weeks later he told me that his throat did not hurt that day that we took him to urgent care but that it felt weird. I wonder if the augmentin is making him have some kind of reflux. He eventually goes to sleep but we never had any problems before. I guess its an e-mail to Dr k now.

 

thanks for your response.

 

 

 

We are 5 weeks post IVIG. My DS used to love his bed. He would read and/or play DS until the time we told him to and then shut the lights out and go to sleep. This was not the case as a baby though.

 

Ever since we had IVIG he has a fear that he is going to throw up again. He keeps telling me that he feels different now at bedtime. The other night he explained that the feeling in his throat is like bad orange juice. He says it only happens when he lays down at night. Tonight he is saying it feels tingly and freezing. He said his heart felt cold too.

 

We stayed in a hotel last night and it didnt bother him at all. I slept in the bed next to him.

 

Could this be some kind of acid reflux or is it just seperation anxiety that just wont go away?

 

Thanks

johnsmom

 

 

 

Johnsmom,

I've been lurking and plan to post my daughter's story tommorow but wanted to comment. Is your son still on 250 Aug twice a day? You may want to comment to Dr. K about the heartburn. Six months after Ivig with Dr. K my daughter was having difficulties swallowing her antibiotic. She then vomited one morning and two weeks later (out of the blue) began with SEVERE heartburn. This then led to a SEVERE fear of choking and vomiting and she was unable to leave our house for three months. I'm pretty sure she contracted strep right before it began (of course negative culture/titer) because a friend had it in her classroom. When I contacted Dr. K he thought it was definetly due to the PANDAS. Her GI doctor prescribed prevacid for 12 weeks and we raised the head of her bed...she also had a lot of problems at night time. We eventually did IVIG again...but i'll post tomorrow.

 

Maybe Dr. K may want to increase the Augmentin slightly higher for 14 days...I know you recently thought your son had strep after IVIG?

 

Thinking of you-

[norcalmom]

You can try tilting the bed a little, or proping him up a bit with pillows too. Sounds more like reflux than pandas.

 

How are his other symtpoms?