IVIG on our 3 yo today

[FallingApart]

Hello,

 

Just an update that we are here at the hospital with our 3 yo DD. We have started the infusion and are almost at the top speed for the dose. The staff have been amazing by taking things methodical and slow. Our daughter has tolerated everything incredibly well and shockingly has slept through about 90 mins so far. She had all the pre-meds. It has been incredibly hot here this week and I know my dd was dehydrated. Because of all the advice about hydration from you all, I asked that she receive IV fluids throughout the entire process and they complied happily. So far, so good.

 

I knew ahead of time that this would be stressful, but OMG, the actual act of being in the hospital with your sweet child for such a procedure is beyond me. Since she is so young, they admitted us until tomorrow night and this is just so huge to me. I'm so hopeful that this will be a turning point for us.

 

More later.

[T_Mom]

Hold Steady F.A.--Our thoughts and prayers are with you tonight. Sounds like you are in good care, we will be thinking of you--

all the best,

T.

[ShaesMom]

Keep us posted! Thinking of you today.

[Suzan]

Hello,

 

Just an update that we are here at the hospital with our 3 yo DD. We have started the infusion and are almost at the top speed for the dose. The staff have been amazing by taking things methodical and slow. Our daughter has tolerated everything incredibly well and shockingly has slept through about 90 mins so far. She had all the pre-meds. It has been incredibly hot here this week and I know my dd was dehydrated. Because of all the advice about hydration from you all, I asked that she receive IV fluids throughout the entire process and they complied happily. So far, so good.

 

I knew ahead of time that this would be stressful, but OMG, the actual act of being in the hospital with your sweet child for such a procedure is beyond me. Since she is so young, they admitted us until tomorrow night and this is just so huge to me. I'm so hopeful that this will be a turning point for us.

 

More later.

 

Good luck and I hope it all goes very smoothly! Keep us posted.

[pixiesmommy]

Thinking of you. Hope she tolerates things well and you are home and on the path to wellness very soon!

 

-Manda

[FallingApart]

Thanks for your kind words, all. We are now about half way through day 2. I feel like I did see some small, immediate improvements in her yesterday and they continue to be there today. However, we still see an angry child in a few instances. But, I'm not sure that is fair to pass judgement on since she has been in the hospital and in a bed for so long.

 

The staff continues to do a great job with us and so far I see no discomfort. I've tried to check with her repeatedly for aches and pains. Other than the IV site bothering her, she seems to be doing quite well.

 

I, however, continue to be scared to death. I'm terrified that I am pacing way too much weight on this procedure and am going to be let down. I'm so glad that this forum exists so I can unload here.

[michele]

I pray things have been going well. Please keep us posted on her progress.

Thanks for your kind words, all. We are now about half way through day 2. I feel like I did see some small, immediate improvements in her yesterday and they continue to be there today. However, we still see an angry child in a few instances. But, I'm not sure that is fair to pass judgement on since she has been in the hospital and in a bed for so long.

 

The staff continues to do a great job with us and so far I see no discomfort. I've tried to check with her repeatedly for aches and pains. Other than the IV site bothering her, she seems to be doing quite well.

 

I, however, continue to be scared to death. I'm terrified that I am pacing way too much weight on this procedure and am going to be let down. I'm so glad that this forum exists so I can unload here.

[FallingApart]

Hello,

 

Here is a new update on our daughter. We had a pretty rough day on Sunday. That was the first day home from the hospital. She spent the day throwing up and had a headache and also experienced nausea. Since she is only 3 she didn't understand nausea. I could see what was happening in her body. She thought she was going to throw up but nothing happened. So, we go a lesson in the difference between nausea and throwing up. My husband and I were so sad to watch her go through this. Even though she was quite sick, I was able to see improvements in her behavior.

 

Then, yesterday, she woke up and was able to tell me that she felt better. The first thing she said was "you said I would be better today, mommy" and smiled at me. We saw great improvements in her throughout yesterday as well. There was an incident at the playground that pretty much should have ended our day but instead she just got over it in a way that a normal 3 yo would.

 

But the big one is happening right now. My daughter woke up at 6 am to use the potty. She looked groggy and still tired. Prior to Sat, that would have been the end of the night for us. But instead, we got her what she needed and the child WENT BACK TO BED!!!! I know there are other parents out there whose days start at 4 am when your child wakes up for whatever reason and can't go back to bed so you know what I mean by how huge this is!!!. This is amazing to me!

 

I am still so scared though that this is somehow temporary. I have no idea how to feel about this as the parent. I'm of course happy about it but also scared to pieces that it is going to be taken away. I'm trying to live in the moment and enjoy every second of this new child.

[NancyD]

I am so sorry to hear how rough this was! I can remember when my daughter was 3 and we were putting her through one invasive test after another. It just breaks your heart! I can tell you that she has little recollection of the awful times at the hospital from the very early years. I always worried about this.

 

Have you ordered the FREE PLAY IVIG KIT for children? This might be very helpful for her to undertstand what is going on. Also, you may want to consider buying the book REPLAYS by Karen Levine and Naomi Chedd, which teaches you how to use play to address specific issues in different circumstances. Karen is a developmental psychologist on my daughter's team and we have used her methodology of Replays to desensitize my daughter to the many medical treatments she has received and it has really helped. For years it took 4 people to hold her down just while she was getting her blood drawn. I hated hospitals almost as much as she did.

 

This is really GREAT news about the results you are seeing from the IVIG -- your daughter's comments to you, the episode at the playground, and the 6am potty use. We live for these moments! As you say, try and live in the moment and not get caught up in "what ifs". Please keep us posted. We will be thinking of you and the wonderful moments you are finally getting to enjoy!

 

Nancy

 

Hello,

 

Here is a new update on our daughter. We had a pretty rough day on Sunday. That was the first day home from the hospital. She spent the day throwing up and had a headache and also experienced nausea. Since she is only 3 she didn't understand nausea. I could see what was happening in her body. She thought she was going to throw up but nothing happened. So, we go a lesson in the difference between nausea and throwing up. My husband and I were so sad to watch her go through this. Even though she was quite sick, I was able to see improvements in her behavior.

 

Then, yesterday, she woke up and was able to tell me that she felt better. The first thing she said was "you said I would be better today, mommy" and smiled at me. We saw great improvements in her throughout yesterday as well. There was an incident at the playground that pretty much should have ended our day but instead she just got over it in a way that a normal 3 yo would.

 

But the big one is happening right now. My daughter woke up at 6 am to use the potty. She looked groggy and still tired. Prior to Sat, that would have been the end of the night for us. But instead, we got her what she needed and the child WENT BACK TO BED!!!! I know there are other parents out there whose days start at 4 am when your child wakes up for whatever reason and can't go back to bed so you know what I mean by how huge this is!!!. This is amazing to me!

 

I am still so scared though that this is somehow temporary. I have no idea how to feel about this as the parent. I'm of course happy about it but also scared to pieces that it is going to be taken away. I'm trying to live in the moment and enjoy every second of this new child.

[thereishope]

can she give my 3 year some pointers in going to back to bed? glad to hear things are going well.

 

and Nancy's comment reminds me of the time it took 4 nurses and my husband to hold my 5 year old son down and pry his mouth open for a strep test. oh, the memories...

 

keep up posted!

[michele]

Great news. Sorry to hear about the nausea. That has to be rough. She is so young yet. Andrew had this since age 13 months but we never went the IVIG route. Looking back makes me wonder if he wouldn't be so ASP/Tourettes had we treated it sooner. Although his episodes weren't as bad OCD as some of the others here have posted. I am so glad you are enjoying some better times.

 

I have seen a few improvements wih the steroids too. We went shopping this morning and he was very nice and coopertive and did not even have his meds in him yet. He has been really mean some of the time with the irritability and quick anger on the steroids but I can see glimpses of a loving son beneath that wants to cuddle and is sweet and polite. Let's all pray for improvements to continue.

 

 

 

Hello,

 

Here is a new update on our daughter. We had a pretty rough day on Sunday. That was the first day home from the hospital. She spent the day throwing up and had a headache and also experienced nausea. Since she is only 3 she didn't understand nausea. I could see what was happening in her body. She thought she was going to throw up but nothing happened. So, we go a lesson in the difference between nausea and throwing up. My husband and I were so sad to watch her go through this. Even though she was quite sick, I was able to see improvements in her behavior.

 

Then, yesterday, she woke up and was able to tell me that she felt better. The first thing she said was "you said I would be better today, mommy" and smiled at me. We saw great improvements in her throughout yesterday as well. There was an incident at the playground that pretty much should have ended our day but instead she just got over it in a way that a normal 3 yo would.

 

But the big one is happening right now. My daughter woke up at 6 am to use the potty. She looked groggy and still tired. Prior to Sat, that would have been the end of the night for us. But instead, we got her what she needed and the child WENT BACK TO BED!!!! I know there are other parents out there whose days start at 4 am when your child wakes up for whatever reason and can't go back to bed so you know what I mean by how huge this is!!!. This is amazing to me!

 

I am still so scared though that this is somehow temporary. I have no idea how to feel about this as the parent. I'm of course happy about it but also scared to pieces that it is going to be taken away. I'm trying to live in the moment and enjoy every second of this new child.