Fear of Medical Treatment - IVIG

[H Mom]

My 12 1/2 year old child was recently diagnosed with PANDAS. She was misdiagnosed for years with anxiety and OCD. She has a strong fear of Medical Treatments and Drs. We are going for IVIG soon with Dr. K. I am concerned about her anxiety - both with getting her there and the treatment. Has anyone had a child like this get IVIG? If so, your suggestions will be appreciated.

[peglem]

Baxter makes an IVIG therapeutic play kit and they will send it for free:

https://webforms.baxterbioscience.com/immune/order.jspa

 

I don't know how soon this will be happening for you, but when I ordered one it was sent w/in a week.

This really helped my daughter. Its really geared towards younger kids but it helps them to understand what exactly will happen during the procedure and why they need the procedure.

 

Are you flying or driving? We used valium (diazepam) to help her relax enough to be able to (sort of) cooperate. This helped both with flying and with getting IVIG.

Edited April 2, 2010 by peglem

[H Mom]

Thank you. I will order the kit. We are flying. She has flown before and is ok with flying but I think knowing what she is going for will make it hard for her and us. I would love to give her something to relax her but I do not think my pediatrician will prescribe it and I do no think Dr. K will either.

[peglem]

My daughter's psychiatrist prescribes it right now, but her pediatrician did before- once he saw her "go exorcist" and realized what I was dealing with.

[Worried_Dad]

We did 3 rounds of IVIG with Dr. K in Chicago for our son (age 13 now). He was in the midst of exacerbation each time and his anxiety was off the charts. Early in both rounds 1 and 2, he almost lost it, told me he "couldn't do this, no way," and my heart sank.

 

So the good news: Dr. K and the OBSC staff are experts at dealing with PANDAS kids and these exact situations. In all cases, they managed to get us through the procedure. It wasn't always easy, but we made it, and it did help.

 

So expect some bumps and challenges... but you're going to the right people to get your daughter through this successfully!

 

 

My 12 1/2 year old child was recently diagnosed with PANDAS. She was misdiagnosed for years with anxiety and OCD. She has a strong fear of Medical Treatments and Drs. We are going for IVIG soon with Dr. K. I am concerned about her anxiety - both with getting her there and the treatment. Has anyone had a child like this get IVIG? If so, your suggestions will be appreciated.

[H Mom]

Thank you. That information is very helpful. I am most concerned about just getting her to the facility. Today I had to take her to get follow-up blood work and it took me about 3 hours to get her out of the house. She also becomes aggressive. It would be hard to drive her if she is fighting going. Thank you again for you help. Since you have been through it, you must understand the stress of this. Did the IVIG work for your child?

[peglem]

Is there a friend of hers or yours that could come along? You will need help getting her there. When we flew to see Dr. Latimer, both hub and I went, as well as Allie's hab worker (who just happens to be my oldest daughter). We could not have done it with less- managing scared Allie is a 2 person job (at least) and then somebody had to take care of just trip details- luggage, checking into hotels, etc.

 

I really sympathize with you on the stress of all this....we really, really planned, but there are just so many things that you can't anticipate. Preparing Allie was so important, and the timing of that preparation, too. Start too early and you drag out the anxiety.

 

But, you can do this. It will be hard, just keep your eye on the prize- helping your daughter recover, just think how sweet that will be!

[H Mom]

Thank you all so very much. You are all so supportive and helpful. I am really thankful to have discovered this forum. My husband is coming with us to Chicago and will help me. When my daughter's anxiety goes up, she is difficult for even both of us to handle. I know we will get through it and will be thankful after the treatment. We are leaving on April 13th. We told her a week ago that we are going and she had a terrible fit. We are going to bring it up again on the morning of April 11th and hopefully have her calmed down by the 13th.

[peglem]

I just had an idea- there is a PANDAS kid here- 13 yo, who has made his own PANDAS website. I wonder if it would help your daughter to contact him and look at his website. I just spent a lot of time trying to find the link for you....but I just can't find it. I know somebody has it (his mom posts on this forum) and I hope someone will be able to supply it.

[Stephanie2]

Our doctor puts some benedryl into the IV when a kid is really losing it. We did not need it, but it gave me some relief knowing that they could do something. Maybe you should pack some liquid benedryl to help her calm down if she becomes anxious.

 

Also, I was in full panic mode a couple days ago trying ot figure out how I was going to get my 5 year old to his first IVIG treatment which was 2 hours away from our house. I was imagining the worst, him jumping out of the car, going nuts trying to pull out the IV line, etc. I had to go by myself b/c my husband is out of town for 5 months. To my surprise the day went much more smoothly than I had anticipated. I went to Target the day before and bought him some new videos, games,, toys, etc. The only rough patch was getting the IV in. He went nuts, as expected, and it took 4 of us to hold him down. It was very emotional for me. But after that it was a breeze.

 

Best of luck!

Stephanie

[peglem]

I just had an idea- there is a PANDAS kid here- 13 yo, who has made his own PANDAS website. I wonder if it would help your daughter to contact him and look at his website. I just spent a lot of time trying to find the link for you....but I just can't find it. I know somebody has it (his mom posts on this forum) and I hope someone will be able to supply it.

I found it!

http://www.latitudes.org/forums/index.php?...son%27s+website