Wednesday's Thoughts

[Suzan]

This is dumb I know, I just want to talk about my girls and their PANDAS tonight, but I don't have any specific questions. I just don't have anyone who will get it who are around. My Mom is out of town and I can't call her. Most other people don't know what we are going through.

 

We are in a waiting period. Waiting for the Igenex test to come back, waiting to see the ILAD doctor, waiting for the neurology IVIG follow up appt, waiting for allergy shots to do their thing, waiting to see if dd9 will need more IVIG's or if dd8 will get them. Will dd8's hoarding get worse or better....

 

Meanwhile, I found out my dd's are intolerant to dairy so we are slowly clearing out all the dairy from our house in addition to the gluten. Continuing on with abx. My daily logs sound like broken records. In many ways SO MUCH improved. Mornings are much better but could still use some help. Evenings are still hard. Lots of pain and emotions.

 

I remember over a year ago coming to this board and saying - it's probably not pandas, what do you all think? I didn't know how much it would help us to know or how long the journey would be either.

 

Susan

[peglem]

Wanted you to know I'm listening. Waiting is hard.

We're going through a weird time here and I'm trying to sort out what is going on. My daughter (almost 16 eek!) gets IVIG every 4 weeks, and she's been maintaining some nice improvements with that. But, @ 2 1/2 weeks after her August infusion, she started a slight downturn- increased anxiety, saw a few aggressive rage sessions(like 1-2/day). This was her 4th infusion, so probably we are passed "turning back pages", though not sure she ever really turned them back! Anyway, it coincided with returning to school, and premenstrual time...so could have just been those things. So she had another infusion last Thurs., no improvement until, like, yesterday she had a great day (just finished her period) and doing pretty good today. Except- she wet the bed last night, which has always been the beginning of a PANDAS exacerbation. And a note was sent home today that they had a case of strep at school. Heck, may not even have been a student she crosses paths with. So now, I don't know what to think of anything. It would be nice to think this was caused by exposure to strep- I mean if this is the worst it gets when she's exposed, that's quite an improvement over what we've seen in the past. But, if the bed wetting was any indication...we're in for some nasty times in the near future. So, guess I'm just waiting to see what happens, too.

[philamom]

This is dumb I know, I just want to talk about my girls and their PANDAS tonight, but I don't have any specific questions. I just don't have anyone who will get it who are around. My Mom is out of town and I can't call her. Most other people don't know what we are going through.

 

We are in a waiting period. Waiting for the Igenex test to come back, waiting to see the ILAD doctor, waiting for the neurology IVIG follow up appt, waiting for allergy shots to do their thing, waiting to see if dd9 will need more IVIG's or if dd8 will get them. Will dd8's hoarding get worse or better....

 

Meanwhile, I found out my dd's are intolerant to dairy so we are slowly clearing out all the dairy from our house in addition to the gluten. Continuing on with abx. My daily logs sound like broken records. In many ways SO MUCH improved. Mornings are much better but could still use some help. Evenings are still hard. Lots of pain and emotions.

 

I remember over a year ago coming to this board and saying - it's probably not pandas, what do you all think? I didn't know how much it would help us to know or how long the journey would be either.

 

Susan

Susan-

 

I wish i had more to say in terms of helping you but i just wanted to comment on the hoarding. My dd9 has a severe case of hoarding. Ugghh! Her recent IVIG's have helped with her intrusive thoughts (no more "my mind keeps telling me") and other aspects of OCd and (i'm definetely grateful for that) but we can't shake the hoarding. I took her to the beach last week and on a ride (flying Alladin ride) she lost part of her necklace. It was just the round silver metal piece that attaches the pendant to the chain. You can get them anywhere. She screamed and cried like a 2yr old and kept going on the ride in hopes to find it. Of course, we didn't. Then she wanted to drive 2+ hours home. She has 100 silly bands because she can't trade them. She keeps everything! The problem is i can't keep anything in her bedroom because of a dust mite allergy. Same for you?

[Suzan]

She has 100 silly bands because she can't trade them. She keeps everything! The problem is i can't keep anything in her bedroom because of a dust mite allergy. Same for you?

 

OMG, very similar! She has 2 bags of silly bands she won't even open and so many more. She keeps the broken ones too. She hates to throw away her drink bottles or any boxes because she wants to use them for projects. She keeps her candy, bags of candy from halloween. She does not drink the last of her drinks or eat the last of her meal. If she were to lose part of her necklace like your dd, we would have to talk about it for a long time and she would cry and cry too. She can't seem to spend her money either. It has to be the most perfect thing to spend her money on so I think she is hoarding her money as well.

 

She has a dust mite allergy too. I just have her sleep in my room with none of her stuff since her sister can't sleep alone. It's easier that way.

 

Susan

[Suzan]

Wanted you to know I'm listening. Waiting is hard.

We're going through a weird time here and I'm trying to sort out what is going on.

 

Thank you peglem... it's nice to know I'm not the only one dealing with the waiting game. Trying to figure out what is strep, what is change, what is puberty, it's got to be so difficult. My dd9 had the same bed wetting issues. Last time she got strep she was wetting the bed too.

 

I'll be waiting with you! Thanks for listening tonight.

 

Susan

[matis_mom]

This is dumb I know, I just want to talk about my girls and their PANDAS tonight, but I don't have any specific questions. I just don't have anyone who will get it who are around. My Mom is out of town and I can't call her. Most other people don't know what we are going through.

 

We are in a waiting period. Waiting for the Igenex test to come back, waiting to see the ILAD doctor, waiting for the neurology IVIG follow up appt, waiting for allergy shots to do their thing, waiting to see if dd9 will need more IVIG's or if dd8 will get them. Will dd8's hoarding get worse or better....

 

Meanwhile, I found out my dd's are intolerant to dairy so we are slowly clearing out all the dairy from our house in addition to the gluten. Continuing on with abx. My daily logs sound like broken records. In many ways SO MUCH improved. Mornings are much better but could still use some help. Evenings are still hard. Lots of pain and emotions.

 

I remember over a year ago coming to this board and saying - it's probably not pandas, what do you all think? I didn't know how much it would help us to know or how long the journey would be either.

 

Susan

I hear you! The wait can be a pain, but at the same time, it can be a time to recharge. It seems you've covered all the bases, you got the ball rolling. Now try to just sit back and relax. Rejoice in the progress made. I have somewhat the same feeling about not having a clue at the beginning (also about a year ago) how long this would take, how many ups and downs there would be. I have a strange dicotomy between feeling "Yes, we can do it, he will get 100% back to normal" and just being at peace with where he is at right now, ie., not completely well but manageable, and we kind-of have a game plan. But then he flares and my heart sinks. So this is probably not helpful to you, but I just thought I'd share that.

About tough evenings (and I've just had one!), I would suggest you try your evening routine a heck of a whole lot earlier and see how it goes. They are tired, you are tired, everyone melts down (including Mom in my house!) This is a lot more common when we are out for sports, come home to a rushed dinner, and then are racing to get to bed, because my brain is fried and I just want some head space. I just decided we will be having dinner before sports, even if it means eating at 4:00pm! We'll see how it goes.

Hang in there!

Isabel

[Suzan]

I just decided we will be having dinner before sports, even if it means eating at 4:00pm! We'll see how it goes.

Hang in there!

Isabel

 

LOL, we do this too! We eat early, usually as soon as we get in the door from the bus stop we are making something for dinner. Sometimes on the weekends we are eating dinner around 4:00. DD8 will ask, is this lunch or dinner?! I say "which ever you want because you will be eating again before you go to bed!". She'll say, "let's have this be our 2nd lunch so we can still have dinner later". But they eat at 11:30 at school so they are starving by the time they get home. I think you have a good idea to eat before all that activity. I bet it will help!

 

Susan

[JuliaFaith]

 

We are in a waiting period. Waiting for the Igenex test to come back, waiting to see the ILAD doctor, waiting for the neurology IVIG follow up appt, waiting for allergy shots to do their thing, waiting to see if dd9 will need more IVIG's or if dd8 will get them. Will dd8's hoarding get worse or better....

 

Meanwhile, I found out my dd's are intolerant to dairy so we are slowly clearing out all the dairy from our house in addition to the gluten. Continuing on with abx. My daily logs sound like broken records. In many ways SO MUCH improved. Mornings are much better but could still use some help. Evenings are still hard. Lots of pain and emotions.

 

I remember over a year ago coming to this board and saying - it's probably not pandas, what do you all think? I didn't know how much it would help us to know or how long the journey would be either.

 

Susan

We are in a waiting period too. How many are there of us? After 7 mos. with not much relief, and no pos. test results to go on (except Cunningham), we are waiting to get an appt. with a Rhuematologist which could take months. Just today he was put on Naproxen for inflammation. He is on about 10 naturopathic/homeopathic supplements as well.

 

We are gluten-free as well. My ds12 wants the gluten-free frozen donuts from Whole Foods. They are so expensive but a nice treat once in a great while.

 

My goal every day is to find some little thing that brings joy. Whether it is a smile from my son or the sun peeking out of the clouds or rabbits in the yard. I also try to remember that there is something to learn from all of this and hope that that can be accomplished as well.

 

Best wishes with your waiting and treatment.

 

Julia

[kimballot]

She has 100 silly bands because she can't trade them. She keeps everything! The problem is i can't keep anything in her bedroom because of a dust mite allergy. Same for you?

 

OMG, very similar! She has 2 bags of silly bands she won't even open and so many more. She keeps the broken ones too. She hates to throw away her drink bottles or any boxes because she wants to use them for projects. She keeps her candy, bags of candy from halloween. She does not drink the last of her drinks or eat the last of her meal. If she were to lose part of her necklace like your dd, we would have to talk about it for a long time and she would cry and cry too. She can't seem to spend her money either. It has to be the most perfect thing to spend her money on so I think she is hoarding her money as well.

 

She has a dust mite allergy too. I just have her sleep in my room with none of her stuff since her sister can't sleep alone. It's easier that way.

 

Susan

 

 

Wow - you guys are SO describing my son when he was younger.... He couldn't even leave an old soda can in the parking lot without wanting to bring it home and calling it his "friend".... and the allergy piece made it very difficult because he especially hoarded stuffed animals. I did 2 loads of stuffed animal laundry every week for a while!

 

For his other (hypoallergenic) collection treasures (pokemon cards, marbles, matchbox cars, wrestling men, hockey figures, legos, transformers..etc...)I found it best to have special places for things - I used bins and I had several of those plastic 3-drawer storage things in his bedroom. I told him he had to put everything away at night. Once it was out of site, he would eventually forget about it and about every 6 months I would clean out the bin and remove the items he hadn't looked at in a while. I did not throw them away, though. They were labeled with a date and put in a special secret spot that I called "toy purgatory". They sat there in limbo waiting to see if he asked for them again. If I did not hear mention of them in the next few months, then I gave them away. There were only a few things that I gave away too quickly and, luckily, he never found toy purgatory!

 

I will tell you that he is better now, but still has things that he gets stuck on. Right now it is those little finger skateboards. Now that he is older, though, he is able to part with things for money... so he has learned to buy and sell things on ebay. That has reduced his obsessions somewhat - I think because he recognizes that if he sells it he can buy it again if he wants it, so it does not seem so final.

[matis_mom]

She has 100 silly bands because she can't trade them. She keeps everything! The problem is i can't keep anything in her bedroom because of a dust mite allergy. Same for you?

 

OMG, very similar! She has 2 bags of silly bands she won't even open and so many more. She keeps the broken ones too. She hates to throw away her drink bottles or any boxes because she wants to use them for projects. She keeps her candy, bags of candy from halloween. She does not drink the last of her drinks or eat the last of her meal. If she were to lose part of her necklace like your dd, we would have to talk about it for a long time and she would cry and cry too. She can't seem to spend her money either. It has to be the most perfect thing to spend her money on so I think she is hoarding her money as well.

 

She has a dust mite allergy too. I just have her sleep in my room with none of her stuff since her sister can't sleep alone. It's easier that way.

 

Susan

 

 

Wow - you guys are SO describing my son when he was younger.... He couldn't even leave an old soda can in the parking lot without wanting to bring it home and calling it his "friend".... and the allergy piece made it very difficult because he especially hoarded stuffed animals. I did 2 loads of stuffed animal laundry every week for a while!

 

For his other (hypoallergenic) collection treasures (pokemon cards, marbles, matchbox cars, wrestling men, hockey figures, legos, transformers..etc...)I found it best to have special places for things - I used bins and I had several of those plastic 3-drawer storage things in his bedroom. I told him he had to put everything away at night. Once it was out of site, he would eventually forget about it and about every 6 months I would clean out the bin and remove the items he hadn't looked at in a while. I did not throw them away, though. They were labeled with a date and put in a special secret spot that I called "toy purgatory". They sat there in limbo waiting to see if he asked for them again. If I did not hear mention of them in the next few months, then I gave them away. There were only a few things that I gave away too quickly and, luckily, he never found toy purgatory!

 

I will tell you that he is better now, but still has things that he gets stuck on. Right now it is those little finger skateboards. Now that he is older, though, he is able to part with things for money... so he has learned to buy and sell things on ebay. That has reduced his obsessions somewhat - I think because he recognizes that if he sells it he can buy it again if he wants it, so it does not seem so final.

I like that toy purgatory idea! And oh the stuffed animals! The thing is they each have a name and they are all related into one big family, can't part with any. Maybe they can go on an extended vacation, or move to another continent

And, I started bribing them... $1 for a box full of junk, it works!

[Suzan]

I like that toy purgatory idea! And oh the stuffed animals! The thing is they each have a name and they are all related into one big family, can't part with any. Maybe they can go on an extended vacation, or move to another continent

And, I started bribing them... $1 for a box full of junk, it works!

 

 

LOL, an extended vacation, Ha!

 

I like this toy purgatory too! I try to get her to be a part of deciding what to get rid of but normally she ends up keeping everything. Our stuffed animals are overflowing too! Every one has a memory, someplace where she got it or the person who gave it to her. She still cries over our old couch that was so nasty and old and falling apart. She wishes we never gave it away. Also, she asks where it went, what happened to it, what did they do with it, do I think anyone got to use it still, was it damanged from the rain, etc.

 

Susan

[purple66p]

I am so thankful for this board! It is so nice to "talk" to people experiencing the same issues.

 

Every box that comes into the house has some super-important, imagined use for some vague time in the future. However, we solved this one! One of my son's chores is to take out the garbage and recycling. Getting paid $5 a week is a great motivator to take those boxes out! If we give my son some kind of excuse to let go of a compulsion it sometimes helps.