New PANDAS child in the family

[LNN]

This is the info I was able to find for Dr. Murphy

http://health.usf.edu/medicine/psychiatry/faculty/staff_murphy.htm

 

Might be worth a phone call. Also, if you can't find a local ERP therapist, I believe USF has a program that offers therapy via Skype.

[matis_mom]

Hi there,

I'm sorry to hear about your daughter, we are on No. 2 as well. If she won't take meds, shots could be a lifesaver. They hurt A LOT, but, it's better than going down the PANDAS hill. My daughter is already being treated and then she got the stomach flu so she could not keep anything down for a few days. She started spiraling down. We gave her her monthly Bicillin shot early, and it really helped. Some kids get it as much as 2 or 3 times per week. She started on weekly and now is on one per month, and even though they hurt, it's once and you are done. Just throwing it out there as an option.

[Megs_Mom]

Wow, thanks for the explanation on ERP. That sounds like an awesome process that takes complete commitment and perseverance. PANDAS parents have to wear many hats. We are parents, scientist, doctors, nurses, psychiatrist, psychologist, teachers....where does it end? Oops, sorry, I almost started to whine.

Yes! Oh, you made me laugh out loud. You know, I used to be really mad about what is demanded from a PANDAS parent somehow along the way, it became sort of normal feeling. But it is really not, and you have every right to whine as much as you like! You are already one of the hero moms that paved the way for the rest of us, so we all know you can do anything!!! That being said, Ill give you my 2 cents and you can take it or leave it!

 

I like Dr. Murphy. She would not be the one to do IVIG, but her group can get you the ERP therapy to help your daughter take medicine. And she can refer you if IVIG is necessary. And in the meantime, she does treat with anti-biotics. Maybe shell even have some good ideas about how to have your daughter take it! And LLM is right, they do have ERP via Skype available.

 

I also like Mati's mom's idea of shots, if your child will do that then you could work on the medicine thing more at your own pace, rather than having it be under emergency circumstances.

 

It sounds like your child has a true phobia of medication, in addition to having PANDAS. It may have started in a PANDAS episode or from OCD, but many children, even those without PANDAS phobias. My daughter used to be the best about blood tests, but now has a phobia about needles. We have worked on this one with some success, but it is harder to be consistent on this one, and I will be honest I dread it with every bone in my body! So while I have done ERP till I often feel I know it in my soul, I have my limitations.

 

Now that I have been honest about that, Ill tell you that my worry about PANDAS is that I fear it is truly an autoimmune illness, and that my child may have it for life. Hope not, pray not but fear and therefore act like this is true. Therefore, she will have to manage this illness beyond me, and the more tools I give her everyday to do that, the better. The longer we have to practice, so that those tools are second nature to her when she is a teen and an adult, the better off she hopefully will be. I look at this similarly to a parent of a child with mild to moderate autism its my job to give her every tool for living in the world that I can. I don't think you can get "beyond the flumist" - I think it triggered an autoimmune response, and now you have to treat that. This may be "easy" with abx, or harder with IVIG. But the response can be slowed, and sometimes it calms at puberty, but clearly not all the time.

 

My daughter also feared medication; she had severe contamination OCD, and could freak out about anything you could imagine regarding the medicine (right type, amount, what was in it, side effects, where did it come from, could it make her sick, taste, wrong time, who mixed it, who touched it, who poured it, whatever). But clearly, medication is critical to staying healthy in this illness, so we prioritized this as #1 to overcome.

 

Since you are still a few weeks from asking her to take medicine, you have a little time to do this, versus what we had to do. I would strongly suggest reading a book with her, like what to do if your brain gets stuck or another in that series, and then starting an ERP program with her. If you can quickly find a local therapist to do this with you, it would be so much better (if they are good!), but if not, you could do this at home if you want.

 

The first step can be to disassociate the fear of medicine from your child. So you may say something like I know how brave YOU are, so I know you can do this. Lets give a name to the monster/fairy/meanie that wants you not to be able to do this. What do you want to call him? Oh, the meannie head? Ok, lets draw pictures of him together. Since your child is only 7, clearly picturing the worry as something other than her own personality really helps, and gives you someone to talk mean to, while still being really kind and positive to your child. Suddenly you can say that meannie head is a real dummy isnt he? You are such a brave and strong girl. He wants you to think you cant put your finger in that medicine & lick it, but I know that you can.

Secondly, it is helpful if you can build a little fear chart. We drew one when our daughter was 6, and put her own labels on it. We used a thermometer, and explained that worry is just like a fever. It can be really fine (a 1-3), it can make you feel like things are wrong, or getting bad 4-6, or it can make you feel like everything is wrong and totally bad 7-9. At a 10, you just want to run screaming around the house or hide under the bed. I usually start with explaining a really really good feeling. If I took this medicine, I would feel like it was so easy, like eating a piece of candy. Then I explain a really bad feeling if I took this medicine, I would hide under the bed and never talk to anyone ever again generally here, ask the child (in a calm moment) what the worst, triple worst thing is that could happen? Here is an example of my daughters fear thermometer:

 

10 I'M GOING TO THROW UP!!!!!!!!!!!!

 

9 WHAT AM I GOING TO DO ABOUT THIS!?!?

 

8 Feeling really scared

 

7 Not sure I can deal with it

 

6 Getting Pretty Uncomfortable

 

5 Really need to talk about it

 

4 I can do it

 

3 Not a big deal

 

2 This is easy

 

1 No problem!!!

 

If we did it again today, it would look quite different. I carried copies of that thermometer with me everywhere we went. It became how we communicated about fear (so in our case, that was an all day conversation).

 

Then you start to ask some questions and break the fear down into different pieces. Then ask your child to rank the steps with you. You may want to do this over the space of a week, ranking one or two things a night, so it is not so overwhelming for her. So ask her if I asked you to sit & look at some medicine in a spoon, where would that be on your fear thermometer? How would Meannie guy make you feel? What if you put your pinkie in it & then tasted it, how would Meannie guy make you feel then? What if you swallowed a full teaspoon?. You might also want to ask about different medicines what if it was just Tylenol or Motrin vs something from the doctor? What about a vitamin? Is it different if it is liquid vs chewable?

 

The answers dont matter you are just looking for enough things to try with her, that you find some that are down in the 2-3 range, and therefore are achievable for her. You dont want to go anywhere near a 10 or even a 7 that is asking too much of her at this stage (unless it is an emergency topic, and then you could ask for professional help and do a lot more in the space of a few days). Once you find some 2-3s, then you can take the next step of letting her know that you are going to ask her to do that one thing for the next few days. That if Meannie guy makes it hard, that is ok, you will be there, and you will beat him up together. You may want to set up a reward program, even for a good solid effort towards trying whatever the challenge is, and a little better reward if they do it. Then we practice that one step until it gets really boring (usually 2-3 days of 20-30 minutes of practice on an easy step). After you do about 4 easy steps, you should ask her to rank her fears again. Many of the fears MAY have gone down not the huge ones, but the mid ranges may start to seem easier, giving you more things to attack. Other things you may do along the way, would be to draw pictures of kids taking medicine, write stories about it, etc. Anything to normalize it. I use a LOT of sincere praise & love when we are doing this. I see my daughter as a hero, and let her know that. Even when she fails, I praise the effort & assure her that I believe she can do it. Quite frankly, it is both exhausting sometimes but also incredibly rewarding. The first time that she beats up meannie head, you will both feel that you made it to the moon.

 

By the way, your pharmacy may be willing to give you placebo (sugar) medicine in both solid & liquid form, so you can get the right consistency & even taste. But Tylenol & Motrin are easy to use, as you have a full dose to work with and there are even 3 flavors of each.

 

I look at OCD and ERP like jumping out of an airplane. NO WAY am I doing that! I am scared of heights. Seriously, no amount of money! Ok, what if you told me that if I jumped out of an airplane, no more children would get PANDAS? Okay… I guess I am jumping but I still CANT! But if you ask me to jump off the bottom step of my stairs sure, ok. I might even jump off a low wall or even something a little higher if I had a glider on and someone to help me. I suppose I would just put on the parachute & learn to open it. BUT NO WAY on jumping out of a plane! Eventually, as I learn all of the steps, even going up and watching others jump, learning to look down, jumping with a partner, etc, I will no longer feel so firm that I can never do this. But it will take a while, a lot of exposure & practice, and a ton of encouragement. For a child, even just looking at the medicine may feel like jumping out of a plane, but they can get there. The final reward for them will be the ability to do anything that THEY want to do, and to beat up OCD when they want to, or when it is preventing them from doing something special.

 

Sorry so long, promise not to do this again for another few months!

Edited January 22, 2011 by Meg's Mom

[Tamistwins]

Tami,

 

My daughter won't take anything. Not a chew, melt, nothing. She has had a broken leg and a broken arm (at two different times), and she would never take anything for the pain. She recently had hernia surgery and we finally found a way to crush up a pain pill and dissolve it in hot chocolate and she couldn't tell it was there. It is definitely a mental thing. If she even thought it was in there she would never had drank it. One time I was able to mix omnicef in some yogurt and she would eat it. That was how we got her through strep and her pneumonia. She has thrown up so many different types of medications. There is absolutely no forcing it. So honestly, the thought of a shot weekly is fine with me. I am a nurse so I could actually do it myself if I had enough people to hold her down. What type of antibiotic is it that you give by shot? Do they also use a steriod injection? Do you have a local doctor that recommended it or are you consulting from a distance? Good luck with your house full. I just keep telling myself, there is an end. I have seen it before, it must still be there.......

 

Dedee

Dedee,

I inquired about an injection because I noticed huge decline in behavior after my son no longer took his antibiotics . It is a bicillin injection. We went to a pa in Edison nj, Scott Smith. Where do u live?

[EAMom]

HI Deedee,

 

I'm so glad your son is doing well!

 

Re your dd taking meds (already many excellent suggestions). Has she learned to swallow pills? Both my dd's (PANDAS and non-PANDAS) learned to swallow pills when they were 7, and both prefer pills to other forms (liquid, chewable). Also, the injections are a good idea...and one benefit, if you dd doesn't end up liking them, is that you could then give her the choice between injections or pills. She just might choose the pills!

 

Also, I think the Azith. liquid doesn't taste too bad. So, you could hide the Azith. in a smoothie once a day. You could probably also hide liquid Advil in a smoothie.

 

One drawback to injections is that bicillin (I think) is just pennicillin...so if you needed something stronger, like Azith. or Augmentin, the injections wouldn't work.

Edited January 24, 2011 by EAMom

[Dedee]

OMG! You guys are so awesome! This is just the information I was looking for. I am seriously thinking about the antibiotic injections, especially since I could actually give them myself if I needed to (I am a nurse). I just wondered how often it would be necessary. However, I truly believe that down the road we are eventually looking at IVIG. Meg's Mom - Thank you so much for taking the time to write such a detailed explanation. What a super process and the scripting is perfect. I am in awe of the support I have always received from the forum. The parents here are the best and most caring people I have ever come across.

 

I am so anxious to get some labs (supposed to do that Wednesday). I hope the weather holds out and we can make the appointment this week. I am really concerned that she has some hiddent strep somewhere even though her throat swab was negative a couple weeks ago. Her symptoms are unrelenting and her finger movements get worse by the day. If it weren't for this constant finger thing I wouldn't worry. When I looked it up on line, she looks exactly like the SC folks. And she does it almost constantly except when she is really relaxed like resting in a chair watching TV. If she starts to talk or get up amd move around the fingers start up immediately. It is really freaky. I got some good video of it on my cell phone this week-end when she didn't know I was doing it. Then when I watched it back I started to cry. Since it only shows her hands and not her face I was going to try to insert it into this post but I doubt I can figure out how. I will try but I'm a little challenged in that area.

 

So everyone pray that we get to our apoointment this week so we can start our process. Also, I really appreciate personal opinions / experiences of those of you who don't live near local PANDAS experts. How have you done your travel / consults? Who are you seeing and how many times have you gone/ Where did you get the IVIG? Trying to look ahead and figure what we will do with the other two kids. Would we need to fly or drive? Our hospital bills are already out the roof because she just had an ER visit then emergency hernia surgery (she had a twisted hernia on new years. So of course, just like everyone else, we are worried about cost, but determined to do what we have to do no matter what.

 

Again, thank you all so very much for your kindness. I pray that we all find a peaceful end to the journey soon.

 

With great appreciation - Dedee

[Tamistwins]

I think the bicillin injection is strong because when my older son was a toddler he had a double ear infection that wouldn't go away after 2 course of antibiotics, this knocked it out. I also think some people use it to treat lyme too.

HI Deedee,

 

I'm so glad your son is doing well!

 

Re your dd taking meds (already many excellent suggestions). Has she learned to swallow pills? Both my dd's (PANDAS and non-PANDAS) learned to swallow pills when they were 7, and both prefer pills to other forms (liquid, chewable). Also, the injections are a good idea...and one benefit, if you dd doesn't end up liking them, is that you could then give her the choice between injections or pills. She just might choose the pills!

 

Also, I think the Azith. liquid doesn't taste too bad. So, you could hide the Azith. in a smoothie once a day. You could probably also hide liquid Advil in a smoothie.

 

One drawback to injections is that bicillin (I think) is just pennicillin...so if you needed something stronger, like Azith. or Augmentin, the injections wouldn't work.

[peglem]

I think the bicillin injection is strong because when my older son was a toddler he had a double ear infection that wouldn't go away after 2 course of antibiotics, this knocked it out. I also think some people use it to treat lyme too.

I think it varies. My daughter tested + for strep 10 days after her bicillan injection.

[Dedee]

Yes, I think the injectible bicellin is the strongest in the "penicillin" family. Though I guess if it isn't a penicillin responder it will require a more broad sprectrum antibiotic. Whew, you would think after having one or two of those injections she would be willing to take anything. Suppose we will take it one day at a time and see.

 

Dedee

[EAMom]

HI Deedee...have you thought about applying for the IVIG study? http://clinicalstudies.info.nih.gov/cgi/wais/bold032001.pl?A_11-M-0058.html@pandas

 

I would also keep taking videos when you can. I would also rec. sending those videos in to the study folks if you do apply (there is an e-mail listed in the link).

Edited January 25, 2011 by EAMom

[EAMom]

PS. I would also try to video other behaviors...ocd etc.