What do I do now?

[zazuk2010]

Hi,

 

We have come so far since all this started last May. Abx and IVIG have deffinitly made life livable for both our 5 year olds with PANDAS. With that said they were unable to go to kindergarten last Sept because of seperation anxiety. We stayed out of school until treatment seemed to get things under control. Started again two weeks ago. One son doing great and loving school (oddly he was the one who had the most trouble last fall) but the other is unable to be there without me. He even panics and starts to sob when I try to sit across the room. This is absolutly PANDAS in action which is why I refuse to just let him "cry it out". We have never had any problems in 3 years of pre-school and last Sept he was the one who was fine in school.

 

We are very lucky in that the school has not only been understanding, they ordered 5 copies of "Saving Sammy" and most of the administration and teachers have all read it. They have been loving and kind and supportive to our whole family. They have let me stay in the class room all day for 2 weeks now. I keep trying to move my chair a little farther away from my son throughout the day and somtimes it seems that it is working and he feels ok. Then out of the blue he will panic and fall completly apart.

 

At this point I don't feel that I will be able to leave the classroom any time soon if at all. My frustration is growing and I don't know what to do to help him. He seems to really like being there as long as I am there too.

 

Any suggestions or ideas would be greatly appriciated. Even if I were able to set aside my other responsibilities and just go to kindergarten for the next 4 months, I don't think it is healthy for him to have his mommy there all the time. And what wil I do going forward.

 

FYI- he has been on high dose Augmentin since the IVIG 3 months ago. All other PANDAS symptoms (rage, moods, tics) have been gone since then. I thought perhaps this new symptom of anxiety was being caused by an over growth of yeast so I increased the probiotics and took down the Augmentin dose. Interstingly, both kids seemed to sleep better and generally look better (dry skin and dark under eye circles went away) but the anxiety remained unchanged. Not worse, not better. Made me think that the Augmentin isn't doing much to fight off any strep that might still be lurking. Talked to our Ped and we decided to try Azithromycin. He perscribed 3 CC's liquid a day. We are planning on making the change this weekend.

 

Considering another IVIG too.

 

And no I am deffinitly NOT smarter than a kindergartener!! But I am learning a lot this second time around.

 

Thanks for any help.

 

Kari

[dcmom]

Kari- I am so sorry.

 

My dd had huge separation issues last year in K, and only minor ones this year.

 

They had suggested me staying in the classroom, but I was afraid to get in the situation that I would never be able to leave.

 

I think you need to work on it in steps. Start shortening your stay slowly. Start by his favorite part- recess, lunch, craft, whatever. Say that you will go sit in the school office during that time and then be back. Then reward him. I went to the dollar store and wrapped a bunch of gifts in a bag. Let him pick the gift as soon as you get back from the office. (the reward needs to be immediate and tangible) Do this for a few days to a week, until it is easy for him. Then add more time to when you will be gone. I am just a mom- but I felt I would rather my dd at school a portion of the day- by herself, than the whole day with me. (For my sanity, but also for her sense of accomplishment).

 

We did a reward type program like this. My daughter eventually could go to school very well. On mornings she was anxious, I would offer to come pick her up at lunch, if she wanted to go home then. Ninety percent of the time, she was better by then and would stay.

 

At the same time, I would explore the option that he needs more medical intervention.

 

Good luck!

[ajcire]

I don't have any advice but it sounds like your son's school and your son's teacher are wonderful.

[thereishope]

My son had horrible sep anxiety when it came to preschool. Finally, I told him that his dad was going to take him. He fought the idea and was very upset. I decided to ride through the anxiety, which was very hard and continued to remind me that his dad was taking him. I reminded him every so often throughout the day.So, when the day came, I made sure he was ready extra early (we were at the point of waking up 3 hours prior to his leaving time because it took him so long) and his dad took him. He was still upset, but...he did great. No sep anxiety at all with his dad. I told him if he continued to do well, eventually I would take him again. well, the last day of school arrived.he reminded me that I made a deal with him. I was so nervous, but I had to have his trust so I couldn't back out. I took him to school. To my relief, it went fine.

 

So, long story short, is there anyone else who may be able to take him to school for you? Hopefully the anxiety of you not being wih him will subside by the time he gets to school.

[smartyjones]

hi kari. sorry to hear you are having trouble again. we are in a similar boat. we are currently trying to slowly move my son into full day. 2 weeks before Christmas, he started staying for lunch. this week, we added the extras of music and spanish and he is staying until 1:15. he is more of an all-or-nothing personality - both related and unrelated to pandas, i think - so it's better for me not to be there. the first day of the change, he resists with crying, yelling etc. but then gets used to it and is okay. by the third day, he's okay b/c this has become the 'new normal.'

 

one thing that was helpful over the summer - b/c he refused the last 6 weeks of school in the spring - and i was very anxious about what would happen this year - we happened on a book at the library called Brave Ben. it's really cute about a scared kid who doesn't want to be scared and calls the magic tree for help. we wrote our own story based on it. and i must say, it's quite a masterpiece. i found some great pics on the internet - interestingly, he didn't want any pics that were real people and he was sure to remind me it was about someone else, not him. the first day, we talked about the story as we were walking in - the dragon coming up as we got out of the car, the spider trying to wrap him up as we walked through the gate. this kept him off the panic.

 

when we've had trouble these past few weeks, i've again talked about the dragon as i've dragged him out of the car or the witch as we walk in the door. he does squeak out a smile in spite of himself.

 

i think it helps b/c it has some function of switching his track of mind where we haven't yet found the thing that is going to do that, in more of a traditional CBT or ERP way.

 

i do believe these types of things are helpful as coping mechanisms while the real culprit is medical but that we need some things to get us through while healing is happening or in the midst of an exacerbation.

 

good luck,

Kathy

[LNN]

when we've had trouble these past few weeks, i've again talked about the dragon as i've dragged him out of the car or the witch as we walk in the door. he does squeak out a smile in spite of himself.

 

i think it helps b/c it has some function of switching his track of mind where we haven't yet found the thing that is going to do that, in more of a traditional CBT or ERP way.

 

i do believe these types of things are helpful as coping mechanisms while the real culprit is medical but that we need some things to get us through while healing is happening or in the midst of an exacerbation.

 

good luck,

Kathy

 

I completely agree. Both my kids, Pandas (DS7) and non-pandas (DD5), can get anxiety. We too disagree with the standard school response of yanking them away from a parent or throwing them into the deep end in the hopes they swim. But we've also found we can't coddle too much.

 

It helps when we acknowledge their fears and let them know we understand how they feel (a "Gee, you must really be worried" sort of thing). And we "personify" the fear and name it - it's the "wet fairy" or Warren the worrier, ...But then we explain to our child that when a parent comes to the rescue, all we do is teach the scary thing to be afraid of the parent. We teach the scary thing that our child is helpless without us. So it's important that we show the scary thing that it's really our child that's the boss.

My kids aren't happy when I remind them of this, but they do get it. They understand that the only way to be feared as a force to be reckoned with is to slay the scary thing themselves. We try to support them, but we also try to let them know that we believe they're strong and can do this scary thing and succeed. Otherwise, we're just sending them the message that there really is something to be afraid of - that their fears are reasonable.

 

It's a tough balancing act and it tears your heart out. But in baby steps, it is important to let them know they can face their fears and win. Otherwise, you can actually do more harm in trying to "protect" them.

 

Maybe tell your son that next week, you'll stay for 1/2 the day for a few days. Then you'll only stay for an hour, then 20 minutes, etc. He won't like it, but you'll be preparing him and building him up and reminding him that you'd never leave him in a place where something bad would happen. Name the fear and practice stomping on it. Make it fun. And do your best to keep your own feelings out of it. It's really really hard, but over time, it will hopefully work.

[MomWithOCDSon]

I would mostly echo what Vickie, SmartyJones and LLM have said here. Our DS12, particularly when younger, was horribly anxious about being taken anywhere and left by us, and it seems that no matter where we are in terms of controlling all the other PANDAS behaviors (mostly OCD in our case), there's a thru-line of anxiety that he and we just have to work through. The separation anxiety does seem to be one element that can eventually be "outgrown," though, at least in our experience. Here's a few things we found that helped:

 

1. My son was more "clingy" and emotional with me, so whenever possible, his dad would drop him off, rather than me.

 

2. If possible, try dropping him off a little early, before all the ruckus of all the other children arriving gets started and when he might be able to get a bit of undivided attention from a favorite teacher or helper; that can help the transition.

 

3. Also, if possible, see if the teacher can have a "job" or task awaiting him that is his and his alone in the classroom; knowing that there's something that he can do right away, and this is "his" can help switch his attention to the school day ahead rather than lingering with you. For instance, our son's class had a class pet (a hedgehog, if you can believe it!), and DS's job was to give it fresh food and water every morning. Just having that routine task helped him say "good-bye" at drop-off.

 

4. While we'd initially thought having a photo of our family or the family pet handy in his cubby would be comforting and re-assuring for him, it actually did the opposite and would trigger anew his anxiety at being away from us. If you've been asked by the school to contribute items of this sort for decorating his cubby or the classroom, you might want to consider removing them until he is better settled in and comfortable in the surroundings.

 

I will say that, in our case, our son eventually stopped demonstrating tremendous anxiety over our leaving him at school; however, he tended to substitute his attachment with us to an attachment with one of the teachers who might take particular interest in or care of him! As he has grown and matured, however, he's been able to "spread" a bit of that reliance around so that he not only looks to a favorite teacher or two, but also a trusted friend or two, when he arrives every day.

[Megs_Mom]

This thread has a lot of good advice in it. We too had serious seperation anxiety that we had to develop some tools to deal with. Do you find that this is only with school? Have you experimented with leaving him with someone else or in a different environment? We did a step by step plan where we did progressively longer periods of time alone at home (on one level of the house), being left for a few minutes and longer with a friend, etc. I found that it was really hard to get anywhere with any kind of anxiety if I was not willing to take the temporary anxiety/tantrum. So in a situation like school where I could not let her freak out either due to a teacher or to a social situation, we had to find different ways to practice. Perhaps they will let you practice before or after school? Sounds like you have fabulous teachers, so perhaps they can help? I also agree with your leaving for lunch or for recess to start. I would discuss this with him ahead of time & give him a choice of what you are doing (leave for 30 min during lunch, leave for 30 min during recess, or leave for 30 min during reading).

[familyof4]

So far the anxiety has been the worst part of PANDAS for me. When my previously independent 1st grade child developed severe separation anxiety from strep this fall it broke my heart. (He had never ever shed a tear about leaving me even in pre-school). The sudden overwhelming anxiety at school was the only symptom of the later confirmed strep. The school thought it would be good if I would come in and see him at lunch or if he could call me throughout the day when he needed to. The psych was very clear with me that even though PANDAS was causing the anxiety I could not "feed" the anxiety or it would only get worse. The hardest thing I ever did was put him on the school bus with tears streaming down his face and him holding up "I love you" with his fingers. Luckily he did not physically resist going. I told the school that if his crying was too distracting that he would have to sit in the nurses office all day but that he had to be at school and I was not going to come see him to "cheer him up". He has a wonderful, caring teacher who kept him in the class and looked out for him. Each day he cried less and less - he still tried to get out of going to school - my tummy hurts, take my temperature, etc. This tough love approach was very hard but in the end it was the right thing to do. He is struggling now not so much with the separation anxiety but intense fear of the separation anxiety coming back.

 

You are going to have to be tough in dealing with this even though it breaks your heart. As you have stated your child resists even tiny steps like you moving your further away but they will eventually adjust if you stay firm.

[LNN]

This tough love approach was very hard but in the end it was the right thing to do. He is struggling now not so much with the separation anxiety but intense fear of the separation anxiety coming back.

 

You are going to have to be tough in dealing with this even though it breaks your heart. As you have stated your child resists even tiny steps like you moving your further away but they will eventually adjust if you stay firm.

 

I think the hardest part of the whole thing is the feeling that you're cruel to make them suffer alone, that you're abandoning them. So it's important that they understand why they have to rise to the challenge. They act like you're punishing them when you make them separate from you. So you have to re-frame it and make them understand that yes, it's a hard thing you're asking them to do, but you wouldn't ask them to do it if it were dangerous or if you thought they couldn't do it. You need to focus on how strong they are and how they are the boss, how they need to teach the fear monster that the child is the one to be reckoned with.

 

Whenever I was about to cave in to the tears, I'd have to remind myself that I was doing this to empower my child, not punish him, and if I could make him know this, there would still be tears, but at the end of the day, there'd be a sense of accomplishment inside him, knowing he could do something really hard without me. We both got rewarded.

[zazuk2010]

Thank you all SO much. I have been trying many of your suggestions over the past few days. We have talked about the little dragon inside of them (talking to both boys) that is aftaid of many things. The dragon tells their brain to be scared because he does not realize that he does not have to be so afraid. I have told them that it is up to them to teach the dragon that they are "in charge" and that they are not going to let the little dragon stop them with his fear. They are teaching the dragon.

 

They both named thier dragons ......very creative...."dragony"

 

Sor far, it has worked in some situations. For example, my son was truly terrified to get into the elevator. He spent several minutes talking to his little dragon, comforting him and talking him (himself) thru it. We did get into the elevator and make it up 3 flights. My son felt great knowing he did it.

 

It has also been an interesting and useful way for me to be able to talk directly to his fear and get answers and make suggestions. I am having a converstaion with his alter ego.

 

School starts again tomorrow. I have gotten us stop watches. We have agreed that we will set our stop watchs when it is time for recess and I will go away from the class for 5 minutes. He likes the idea and seems excited to try.

 

Again, thank you all. I will keep you posted.

 

Kari

[Kayanne]

I'm sorry that you are going through this, I don't any advice about the separation anxiety butI wanted to comment on the anitbiotic.

 

3 CCs of zith seems kind of low...

 

depending upon the strength of the liquid--if it is 100mg/5ml, then your son is only getting 60 mg daily

 

if it is 200mg/ml it is only 120mg.

 

I'm pretty sure that most of the parents have said that their children take 250mg daily. Also, if you are fighing an infection, then zith usually starts out on day one at a double dose....

 

I would say that 120mg would be an acceptable dose for prophalaxis, if you are sure the infection is cleared. However if you are trying to get to the strep in the cells...I think it is too low.

 

Have you ever tried a steroid? That may just be one more tool that you could add to get your son better sooner.

 

~Karen

[Megs_Mom]

Hi Kari - I remember when Meg was 3.5 - my brave little kid who never gave me a backward glance when I dropped her off, suddenly got such severe OCD that she was pretty much not able to function for a while - took her out of preschool, handwashing till she bled, such severe seperation anxiety that she could not even go to the playground with dad, fear of eating, choking, germs everywhere. It was awful. We taught her a rudimentary form of ERP and after a lot of practice she started bossing back. This little tiny kid, running along with the other children, suddenly you'd hear her saying "you go away, you mean worry man. I am the boss of me & I do too want to play on the monkey bars. They are NOT germy, you stupid worryman". The other moms looked a little concerned - but I could not have been more proud. It was one of those moments when I realized that I would be proud of this child no matter what - and that I was no longer a person that would be embarrased by pretty much anything.

 

After learning a lot about how OCD builds during her next onset at age 6.8, we did have some really rough transitions where she was peeled off me by a teacher - I remember crying in the parking lot of ballet in my car. But she always made it and was almost always glad that she went. And over time, it became easier for all of us to be more confident that we were making the right decision for her. It was certainly not easy! It sounds like you have already made a great start at teaching him that he can overcome the anxiety - and it's so fun when they are super proud of themselves!