Just need some support

[peglem]

You guys are always so good at reviving my spirits. Right now I'm just so tired of fighting this disease. Allie's doc wanted to try something less potent (and safer) than the rifampin. I can appreciate that...but its not helping and this crap has been going on for over a month. I just want her to feel good again. I'm supposed to report back to him on Tuesday. That seems like a long time right now. We're having some home renovations done right now, its been needed for years and years. I've worked so hard packing up the kitchen so the old cabinets can be torn out...she keeps getting into the boxes and taking stuff out and spreading it all over the house. She's so volatile right now- I won't stop her, but its wearing trying to keep up with it all + I still have a bunch of stuff left to pack and get out of the way. I'm just worn to a frazzle.

[saidie10]

I've missed a bunch of posts recently so I am sure I am not caught up but thought I would drop in and send some positive thoughts your way. Stay strong...sounds like things continue to be difficult right now, but keep fighting.

[matis_mom]

You guys are always so good at reviving my spirits. Right now I'm just so tired of fighting this disease. Allie's doc wanted to try something less potent (and safer) than the rifampin. I can appreciate that...but its not helping and this crap has been going on for over a month. I just want her to feel good again. I'm supposed to report back to him on Tuesday. That seems like a long time right now. We're having some home renovations done right now, its been needed for years and years. I've worked so hard packing up the kitchen so the old cabinets can be torn out...she keeps getting into the boxes and taking stuff out and spreading it all over the house. She's so volatile right now- I won't stop her, but its wearing trying to keep up with it all + I still have a bunch of stuff left to pack and get out of the way. I'm just worn to a frazzle.

I know renovations can put any family on edge! Can you go away somewhere for a few days?

 

About Allie, it stinks to have to wait til Tuesday. I would go back Monday and say "DO SOMETHING!" Other than that, I don't have much to offer, except prayers and cyber hugs!

[thereishope]

Peg, we all have moments when we feel we're reaching the breaking point. It's a crummy (to say the least) feeling to see what it can be like then to get pushed backward. Remember the good days she was having. Remember she has it in her to fight this disorder (and she's proved that) and you have it in you to help her. I know what it feels like to have that break for a small amount of time, then get slammed back down. When you actually almost got use to the chaos, but then suddenly you feel you can't do it anymore since you had a taste of what it can be like when it's better. Keep fighting for her. Remember your goal of taking her trick or treating this year. Remember how she was starting to want to overcome her fear of elevators. Use that to find that inner strength and fight for what you think and know your daughter needs. Look at you daughter and say to yourself " She needs me to fight for her. She wants me to fight for her.". Would Latimer be able to help with any suggestions to the doctor since you saw her before?

 

Know we are all here for you. Maybe not physically standing there with you, but emotionally and spiritually.

Edited September 26, 2010 by Vickie

[caring mom]

Oh Peglem, I'm so sorry!! You have unbelievable inner strength to be able to deal with this situation in the way you have!! I can't imagine what it must feel like to watch your child literally undo hours of work right before your eyes, have to maintain your composure, and then clean it up and start all over again! I would be in a loony bin in by now and I shudder to think of what I would want to do to my dd. I also think your doctor needs to know what you are dealing with before Tuesday - you've given this medication more than a fair amount of time to work and it's just not cutting it! Please know that I am thinking of and praying for you and Allie!!

 

Caring Mom

[tired mom]

I am right there with you fighting this for what seems like forever. I know that whenever dd's symptoms started to ramp up anything out of place would through her into a full blown rage. I know they say don't enable your child but they also don't live with it.

We get sucked into the OCD world. My daughter would throw things all over the house if she felt it was not placed the way it should be. The renovations and change may be hard for her to handle. I know how difficult it is for you. This disorder sucks everything out of us. I hope your kitchen comes out beautiful and remember things will get better again.

[sptcmom]

hey Peg. Stay strong. Its really hard trying to get on with regular life with all this going on. We recently had our basement renovated and it was a nightmare. After two weeks of ###### we just got one of those outside storage units called PODS and dumped all extra stuff in that little hosue on wheels and locked it up. We rented it for 4 months so its still locked up until we have everything set.

Big hug and best wishes- Jodie

[KaraM]

You will get through. Remember the eye contact games you were playing in the car, too.

I will keep you and Allie in my thoughts.

Kara

[Joan Pandas Mom]

I am keeping you and Allie in my thoughts and prayers Peg. Do you ever feel that when OCD/PANDAS can't do much more to bother you then BAM, it does? It's frustrating to have something undo what you just did. I know with me, I REALLY NEED some sort of organization in all this chaos. The organization is something I can somewhat control. Then OCD undoes it, AGRRR. This too shall pass Peg and you will find a way. It is just so very frustrating going through it.

[peglem]

I am keeping you and Allie in my thoughts and prayers Peg. Do you ever feel that when OCD/PANDAS can't do much more to bother you then BAM, it does? It's frustrating to have something undo what you just did. I know with me, I REALLY NEED some sort of organization in all this chaos. The organization is something I can somewhat control. Then OCD undoes it, AGRRR. This too shall pass Peg and you will find a way. It is just so very frustrating going through it.

We had the sort of thing Allie is going through right now for years. We used to think this state of things was remission. She was like this when she got a 242 CamKII on the Cunningham test. And my biggest worry, always, has been that when I pass, family members will not be able to take care of her and she'll end up drugged in an institution. Not an irrational fear at all. But when I saw what real remission looked (and felt) like, it was a huge burden lifted off of me. My first and constant thought was, "now I can die in peace." Not that I'm anywhere near death (God willing). I know this will pass.

Maybe a different abx regimen will work for her and we'll find we have more options than rifampin. I've been looking it up and the doc was straight up about the dangers. If Allie had TB they would consider it worth the risk. But, they don't see these behaviors as a medical danger worth the risk of the medication. We're supposed to identify physical, medical symptoms (not behavioral) to justify treatment.

As far as the renovations go- the chaos is not so big a problem for me as the fact that all the decision making/errand running/clearing the way has been left up to me. My hub's mom lives with us and both he and she are big pack rats. So, though they will not initiate clearing/packing, whenever I do, they get in the way, making sure I'm not getting rid of anything they want to keep, even though they have forgotten they've even had this stuff for 10+ years.

[melanie]

Hi Peg

 

When was her last IV? I need a date..How many good days between the Ivs does she have? Danny has had 11 IVs and has had many good months and then sprinkled in them bad months.Months when I wanted to die.Months when I thought all of this is crap and the people on here are crazy and Im just grasping at straws. Then theres months (like this one ) when hes amazing!! I remember he was having a bad few months and you kept posting how good allie was doing .I was je;ous.But I was sooo happy for her..Our immunologist insists that weather change screws with our kids and that barametric pressure effects them. Hang in there It can get better again and It will...

 

Melanie

[wornoutmom]

Peg - sometimes I think the hardest part of this disorder is watching the "remission" fade away. Knowing what your child could be - was, and feeling like it's so damn unfair that it didn't last. Worrying that they won't get back there again. It's too hard to accept "this is the way it is.." when you know it has been/could be again better. And (I find) the grief at watching the downfall is wrenching..

[Joan Pandas Mom]

I have the same fear with Jared. What is going to happen to him when I die? His father died (my ex of 12 years) 2 years ago. Jared's care is all up to me. I only recently got to the point when I start to think that way to just try to stop it in its track and think of something more positive. I feel your fear. I have to hold on to God has a better plan for these kids.

[Stephanie2]

I'm so sorry, I'm always so worried about what would happen to my kids if my husband and I get into an accident, etc. I don't think anyone would be able to keep up with their care the way I do. Surely they would remit into a very aggressive form of autism, I would roll over in my grave.

 

Oh and I had to laugh about trying to get rid of things...I have to wait until my husband goes out of town to get rid of ANYTHING!! I have to go as far as bringing it to good will or burying it very deep into the garbage cans!!! Ugh...

[momto2pandas]

Hang in there, Peg - I've been so amazed and what you guys have accomplished. To me, you seem to have the patience of a saint and I always greatly admire the perspective in your posts. I'm glad that you come here for support.

 

 

I'm sorry if I'm off here, but is the deal that she was doing so great on rifampicin, but then had to go off for fear of its side effects? This is interesting to me because I had very aggressive PANDAS at Allie's age, as you know, until I was treated for TB and got two years of isoniazid and some period of something else that I couldn't remember the name of, but that Dr. T told me must have been rifampicin because isoniazid is apparently never prescribed for TB without rifampin. It was during that period of treatment that I finally managed to recover. I haven't heard much about other cases of use for PANDAS. I wonder if Allie might benefit from isoniazid, which like rifampin, works against mycobacteria? Do you know what infection you're fighting? I assume that she's been tested for TB - I didn't even know I had it until a routine prick test and then the follow-up that ensued. Interestingly, isoniazid also has been found to have antidepressant activity...but I don't know if that has to do with its antibacterial activity or something else.

 

I'm no expert on these drugs...just a thought.