I am just SOOOO frustrated and broken down here

[tantrums]

I think my own feelings and actions wax and wane as much as DS's do. But these past few days, I'm just NOT doing well. Just a reminder since I'm not a consistent poster - DS just turned 7. He began in NOvember with tics, sep anxiety, rage attacks, etc... a couple of weeks after H1N1. Our ped and immunologist were wonderful in working with me and dxing pandas although both were admittedly at a loss as to what to do. Ped did rx long term ammox which helped tremendously. saw the neruo in february who was useless and said he "just" has tourettes. At that point, he was sliding downhill again.

 

During the past month or so, he has just been on a downhill path seemingly no matter what we do! Have tried different abx (using Dr. T now as well), have gone gluten free, using supplements, started counseling. NONE of it seems to be doing any good. He is full force with the sep. anxiety, is having panic attacks. He is once again doing things we haven't seen since November - breathing deeply so that he can hear himself. He thinks he is going to stop breathing and die and needs constant reassurance that he will survive. He is frequently washing hands and panicking that he touched poisons. He will not sleep alone. He is physically attached to me every second we are home (thank GOD somehow he doesn't yet fight going to camp!), screams and yells if anything doesnt go his way. He is trying to break his bones, rip out his tongue and banging his head.

 

I feel like I live in a group home. My job is to oversee group homes for autistic children. Then I feel like I'm going home to it at night. I am taking ativan now. Have discovered wine and am chainsmoking (outside only of course) like nobody's business. We are going on vacation on saturday and I don't want to go!!! I'm sure it will be ######!

 

After vacation, we are seeing the rheumatologist at CHOP. Dr. T also said we can try the steroid burst after our vacation. He is immuno deficient so IVIG is a good possibility here and I am seriously considering it now.

 

Thank you for being here. I hate sounding like a whiner. But it's just one of those days I think!

[Suzan]

Hi. I just wanted to give you a great big cyber hug! I am right there with you. I am confused and headed downwards too. I just gave up wine to start my diet and I am really suffering from it. Just earlier today I was saying I didn't think I could make it without the wine!!

 

My 8 yr old is about to break me and I'm getting confused about whether it's PANDAS or Celiac or both. I don't know if I'm making the right decisions. I feel like I won't survive it all.

 

So if it helps, you are not alone. I feel your pain and frustration. I am sorry!

 

susan

[tired mom]

It is so hard to think that things will ever get better when your going through a rough patch. It sounds like your headed in the right direction and soon you will have some "normalcy" back in your life.

[ajcire]

Tantrums...don't have much to offer but big hugs... hang in there.

[Kayanne]

I'm so sorry you're going through this right now...((cyber hugs)) and prayers...

 

CHOP -- Pittsburgh or Philadelphia?

[tantrums]

Thanks everyone. Seriously - I'm at work and hardly doing anything. Just have NO energy at all in me. Luckily I have to go to a meeting soon. I'm better at field work. I enjoy my clients.

 

CHOP in philly. Dr. Terri Finkle. Her resume is impressive. Hope that means something.

 

Yesterday, we had counseling. Today we have the nutritionist. Next week the dentist since we need to do that more often. Then the visit to CHOP. I'm tired of the appointments, the drama, the fights...

[Fixit]

I Feel your pain...seriously!!!!!

Neuros S)*&()*&^%%%$%%$!!!!!!!!!!!

they say the same about my ds....

real quick...we did see a beautifull 4-5 days, 21 days post burst in March...

I don't want to say too much now...we are on taper...and Please EVREYONE,, PRAY for my DS, or send GOOD ENERGY that it STICKS...

i will fill in some other time...

also first camk at 105, second at 160...

going to see doc L early august and discuss the 2 very different results and not ruling anyone out, as i canceled my first appoint with her as i was afraid whe wound't believe me...

Please try to let it out and get back on the horse!!!!! FIGHT with MOMMY Tiger claws...as someone once told me!!!!!

[tantrums]

Think I'm feeling like a zoo tiger. Caged and declawed.

 

I'm sure I'll get it back. I get like this sometimes. I'm just so tired from lack of sleep and no energy to deal with anything. I'm sure I'll eventually get back up and at it and moving full force to beat down the panda

 

Best of luck on that taper!!! And to everyone else!

[matis_mom]

Hi there,

I feel your frustration! I am so sorry things are going downhill.

I am sorry to ask this but have you and the rest of the family been checked? Every single time my ds has taken a turn for the worse it has been because one (or more!) of us had strep. We just found out both my husband and I have elevated ASO, and I just got a positive of the rapid! So, if you have not done this yet, go check everyone out. In our family, except for one time back in October, no one has had any symptoms, so just because everyone is feeling OK, that does not mean anything.

I would also be good to check anyone your son is in daily contact with (sitter, grandma, etc).

Hope you do get a break while on vacation (an that might be a piece of the puzzle: my son was actually better while at Scout camp, and got worse when he got home, so I knew someone must have it!).

Isabel

[tantrums]

He is currently laying on the floor outside the bathroom yelling that he has to poop. But he is afraid to go into the bathroom.

 

There is not enough wine in the world!!!!!!!!!!!

 

How do you get everyone checked? Do you just ask the family doctor to order it for everyone in the house?

[peglem]

He is currently laying on the floor outside the bathroom yelling that he has to poop. But he is afraid to go into the bathroom.

 

There is not enough wine in the world!!!!!!!!!!!

 

How do you get everyone checked? Do you just ask the family doctor to order it for everyone in the house?

This brings back memories. One summer, back when my daughter was still "just autistic," she was afraid to go down the hallway where both bathrooms and all the bedrooms are located. She was also a little stripper that summer, so we ended up with a lot of messes right before the entrance to that hallway. Don't remember how she got over it- just one day started going to the bathroom again.

 

I'm so sorry this is happening, sorry the wine doesn't really make it go away! Can your son say why he's afraid of the bathroom? I hate to suggest this, because it kind of feeds the OCD, but can you make some kind of magic talisman that will protect him in the bathroom. Sometimes, when you're in just barely surviving mode, you can trick the OCD with a sort of counter OCD.