Jump to content
ACN Latitudes Forums

Can we still get IVIG if he's sick


Recommended Posts

If my son is sick does anyone know if he can still do his first IVIG treatment on Wednesday? Of COURSE it's a weekend. He started with the 'stomach' pain yesterday. You can just tell he really doesn't feel good today. And of course he's crabby - that's our issues anyway. He's on a Zpack right now, 500 mg. Was supposed to switch to 250 tomorrow. Frustrating isn't it?

Link to comment
Share on other sites

Oh good because if I had to wait ONE MORE DAY I was going to go nuts! We've already been in this episode for six weeks!

 

Yes! Dr. K pointed out our son had a stomach bug at time pre - IVIG appointment with low grade fever... and, younger son had been in the hospital 5 days and was extremely sick when IVIG was administered. Both my son's rebounded immediately after treatment.
Link to comment
Share on other sites

Yep! I'm excited, I'm scared, I'm hopeful, I'm skeptical, I'm nervous! But that also beats the way I feel when my son is in the middle of a PANDAS episode.

You've done this?? Any advice?

Bubbasmom:

 

Will this be your first IVIG?

 

Elizabeth

Link to comment
Share on other sites

Bubbasmom:

 

I would advise to hydrate the morning of IVIG and the evening after. Some doctors recommend zantac (spelling?) for nausea for 2 days prior to IVIG and the day of IVIG. Our son had a headache during the night, which motrin helped.

 

I am so excited for you. Remember that the healing process takes time and you may see two steps forward and then one step back. And you may not notice anything for the first few weeks. Even though you can be intellectually prepared for the one step back, it can still be stressful!! Overall, we have seen amazing results!!

 

Will your son be on antibiotics? Who is doing the IVIG for him?

 

Keep us posted. We will be thinking of you!!

 

Elizabeth

Link to comment
Share on other sites

Oh please don't tell me WEEKS! I'm so done with this! You know my son has the rage with this. He weighs 130 pounds and I have two other children to protect, basically from him. We are walking on freaking eggshells around him and we've already done this for 6 weeks. I was done with this junk YESTERDAY! Somehow I thought this would fix things pretty quickly, does it not? He's on psychotic meds we need to get him off of soon too. Dr. K doesn't want him on them long at all.

So many ups and downs! I haven't slept in a bed for 6 weeks. I sleep sometimes sitting up most of the time in a recliner. Only in my bed once, and got up about 1:00 because I remembered I left a knife out.

We gotta get our lives back!

 

Bubbasmom:

 

I would advise to hydrate the morning of IVIG and the evening after. Some doctors recommend zantac (spelling?) for nausea for 2 days prior to IVIG and the day of IVIG. Our son had a headache during the night, which motrin helped.

 

I am so excited for you. Remember that the healing process takes time and you may see two steps forward and then one step back. And you may not notice anything for the first few weeks. Even though you can be intellectually prepared for the one step back, it can still be stressful!! Overall, we have seen amazing results!!

 

Will your son be on antibiotics? Who is doing the IVIG for him?

 

Keep us posted. We will be thinking of you!!

 

Elizabeth

Link to comment
Share on other sites

IVIG is not considered a success or failure until 3 months after given. Then it can take a year for complete healing. Usually it gets WORSE before it gets better. This is all per Dr K.

 

We have seen some immediate things with IVIG (done once about 5 weeks ago now) that got better (tics,) but others got worse (rages) and upon talking to Dr K on Wed, some of this may be learned behavior now. We are thinking of doing another out-patient partial-day psychiatric hospitalization for my dd (she's 9.) We did one a little over a year ago and it helped her then (before we even knew of PANDAS) and I'm also at my wits end with the rages.

 

All this and still to say, I think IVIG was worth it. We have seen so much good come back as well, and peeks at her true personality and intelligence and improvement in her appetite... and she reports feeling better too.

 

Hugs,

Manda

Link to comment
Share on other sites

Dr. K did not make that very clear to me. I can't handle WORSE! Seriously if it gets worse, my son will probably die! He threatens to kill himself when he gets in these rages. I am LITERALLY keeping him alive by walking on egg shells around him.

This doesn't necessarily sound like a 'fix' if it takes this long. The overall 'peak' of PANDAS only lasted 2 months last time and we're already 6 weeks into this. But he wasn't threatening himself then.

Someone's going to end up in a mental hospital before it's over - and it might be ME!!

 

IVIG is not considered a success or failure until 3 months after given. Then it can take a year for complete healing. Usually it gets WORSE before it gets better. This is all per Dr K.

 

We have seen some immediate things with IVIG (done once about 5 weeks ago now) that got better (tics,) but others got worse (rages) and upon talking to Dr K on Wed, some of this may be learned behavior now. We are thinking of doing another out-patient partial-day psychiatric hospitalization for my dd (she's 9.) We did one a little over a year ago and it helped her then (before we even knew of PANDAS) and I'm also at my wits end with the rages.

 

All this and still to say, I think IVIG was worth it. We have seen so much good come back as well, and peeks at her true personality and intelligence and improvement in her appetite... and she reports feeling better too.

 

Hugs,

Manda

Link to comment
Share on other sites

We are four weeks post IVIG.... We had some post rages but I would say the BIG difference was I had the ability to reason with my son. Prior to IVIG we didn't. Also when he raged after it was mostly about something like 'accidentally dropping/breaking' his Leggo car. His rage was never directed at someone or himself. Each rage has gotten milder, he has become more reasonable and they have become further apart. I witnessed one small mood switching on Friday about accidentally letting a balloon go but otherwise we haven't really witnessed one in well over a week.

 

Hang in there.

 

 

 

Dr. K did not make that very clear to me. I can't handle WORSE! Seriously if it gets worse, my son will probably die! He threatens to kill himself when he gets in these rages. I am LITERALLY keeping him alive by walking on egg shells around him.

This doesn't necessarily sound like a 'fix' if it takes this long. The overall 'peak' of PANDAS only lasted 2 months last time and we're already 6 weeks into this. But he wasn't threatening himself then.

Someone's going to end up in a mental hospital before it's over - and it might be ME!!

 

IVIG is not considered a success or failure until 3 months after given. Then it can take a year for complete healing. Usually it gets WORSE before it gets better. This is all per Dr K.

 

We have seen some immediate things with IVIG (done once about 5 weeks ago now) that got better (tics,) but others got worse (rages) and upon talking to Dr K on Wed, some of this may be learned behavior now. We are thinking of doing another out-patient partial-day psychiatric hospitalization for my dd (she's 9.) We did one a little over a year ago and it helped her then (before we even knew of PANDAS) and I'm also at my wits end with the rages.

 

All this and still to say, I think IVIG was worth it. We have seen so much good come back as well, and peeks at her true personality and intelligence and improvement in her appetite... and she reports feeling better too.

 

Hugs,

Manda

Link to comment
Share on other sites

Hi, Bubba's Mom:

 

Wanted to share our experience re: psych meds. Our son was also put on psych meds (ativan, zyprexa) about 6 weeks prior to our 1st IVIG with Dr. K. Our house became a war zone: our formerly pacifist son would rage, cry hysterically for hours, and paced non-stop in circles from morning until night. At one point he lost it and pretty much destroyed the basement before we settled him down by explaining that - if he could not stop - we would have to take him to the hospital. We were hanging on by our fingernails, trying to survive until IVIG.

 

Then Dr. K warned us that these types of meds "put PANDAS kids over the edge" and strongly advised us to taper off them. We did... and within 2 days of stopping them, our son's behavior improved dramatically. The rages stopped, the hours-long crying jags stopped, the pacing stopped. We were amazed... and so relieved! That made the trip to Chicago for IVIG possible (didn't know how we were going to make it otherwise).

 

Don't know which meds your son is on, but - for our son - ativan in particular made things much, MUCH worse. Kind of like pouring gasoline on a bonfire.

 

Just wanted to share that. Every child is different, but many on this forum seem to have had major problems with psych meds.

 

 

Oh please don't tell me WEEKS! I'm so done with this! You know my son has the rage with this. He weighs 130 pounds and I have two other children to protect, basically from him. We are walking on freaking eggshells around him and we've already done this for 6 weeks. I was done with this junk YESTERDAY! Somehow I thought this would fix things pretty quickly, does it not? He's on psychotic meds we need to get him off of soon too. Dr. K doesn't want him on them long at all.

So many ups and downs! I haven't slept in a bed for 6 weeks. I sleep sometimes sitting up most of the time in a recliner. Only in my bed once, and got up about 1:00 because I remembered I left a knife out.

We gotta get our lives back!

Link to comment
Share on other sites

Oh gosh, I totally feel for you. Your son sounds very much like my dd was when she used to rage. We know the feeling of walking on eggshells just to keep everyone safe and free from serious injury. It is a terrible way to live. And of course, needless to say, it was completely the opposite of who she was! For a year my dd's rages were crippling...along with the horrendous OCD.

 

In my dd's case, IVIg SAVED HER LIFE. After IVIg she had about 3 or 4 more rages in the following weeks AND THAT WAS IT. NO MORE. Even the ones she had after IVIg were noticably different in quality. I hope your child has the same result. I am so glad you are getting IVIg soon. Is he aware of the procedure? My dd was raging both days during the IVIg. Some hospital staff tried to get her transferred elsewhere. She had to be put in restraints just to get the IVIg started. Gosh, I could go on and on...but basically what I want you to know is that there is hope that he will get better.

 

Yesterday was 11 months post IVIg for my dd. Yesterday she went to her friend's birthday party. Wow. Do you know I cried about that? I was thinking back to one year ago and how I never thought my dd was going to be able to EVER do anything like that.... a simple, joyous thing like a child's birthday party! It is a miracle to me, how far she has came.

 

I will be thinking of your family and hope you have great success with the procedure.

Regards,

amy s

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...