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Can't stop crying today


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This morning was so hard...bathroom OCD issues are back along with clothes issues (nothing feels right...too tight, too loose, etc) So hard to see DS8 suffering. He asked me to leave him alone because he just needed to stand there at the potty. Yes, just stand there, pants down saying he has to go but nothing is happening of course. I did and when I peaked in on him a bit later he was pointing at the sky, mouthing something, and waving his finger. When he saw me he quickly stopped. I asked what he was doing and he said he was cursing God for how he was made......we both cried together. I typically don't cry in front of him but I simply could not control myself and the sadness I knew he was feeling at that moment.

 

We r starting Zithro tomorrow...waiting on lab results and praying all the while.

 

Why do our poor children have to suffer????

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Oh Saidie,

 

I'm so so sorry I know how you feel. It is good that your son expresses how he feels yet how sad it is. I have cried way too many times in front of my children too it is so unbearable at times and just can't be controlled. Up until this point I had nothing good to report. We were at the lowest of lows. I have 3 children with pandas two are confirmed pandas/Lyme. We have tried different antibiotics and ivig numerous times and we still weren't Doing well. My two older children who are 8 just had another ivig on Monday and Tuesday. My son who was my really difficult one because he had strep, mycoplasma, mono and clinical bartonella. Well our immunologist increased his ivig this time from 1.5 kilo per gram to 2.0 kilo per gram and I don't want to jump the gun here but there is an almost immediate improvement in his behavior. No screaming tantrums no meltdowns if he doesn't get immediate gratification, I feel and pray like we are on our way to getting my old sweet natured child back. It's been 3 days of him being compliant. I can't express how i feel. I just hope it lasts. He did develop a neck tic that e didn't have before and I'm not claiming that the bump in the road is over but it's a changed personality for now. And I want to tell you how bad he was. Crazy OCD for years, banging head on hard objects due to terrible strep infection. Demanding, odd, screaming, hitting, talking back, bed wetting, I pray he will continue to heal. My daughter his twin only got the 1.5 g and she is horrible, nasty, defiant. It's unbelievable. I wonder if the 1.5 g only stirs things up but isn't enough to help. I don't know just wondering, I hope things improve for you and hopefully the Zithromax will help.

Tami

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I just wanted to say how sorry I am, and I really hope you see some relief with the Azith.

I think there is a very good chance you will-

My dd has also had an uptick of OCD and vocal tics, and it is hard.

The recent OCD was an event at school that had never really taken place-

she was obsessed for days- plagued non stop, saying she had to switch schools,

so I wrote a note to the teacher, to find out it never happened (a STOP ticket)

It is so weary making, all of it.

Sending you PV's-- hang in there--

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I cried cause its so heartbreaking your son's story....it sounds like my 13 y/o son. He was such a nice and lovely boy as all the pandas kids. He also was very religious though he has fought with God many times. Before pandas he never said bad words NOW he has said all of them to God.

He is improving like baby steps. No more tics, no more depression, he is eating twice a day though OCD maintains very severe. We are taking him to Rogers Memorial Hospital for therapy in a couple of weeks. I'm crossing my fingers this helps.

 

I know your feeling! I have cried a lot too and sometimes in front of him. I guess it's okay, we are humans...we are moms...and we love our children.

 

I wish I could give you a big hug and receive one too. I will pray for your son. ELVA

 

 

 

Saidie and Tammi Stay strong!!!

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All your stories are so heartbreaking too. I am a total freaking mess today and reading your stories breaks my heart again, and your kind words warm it. Thank you all for reaching out to me. I really needed it today. I wish nothing but healing for all of your kids...all of our kids.

 

Best to you all,

Cindy

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Have had way too many of those days over the past year or so. Sounds just like my 8 yr old dd. Clothing issues are terrible, and has stopped up our toilet countless times over the past two months. Tics are actually the least of our concerns . . . The odd and OCD far more troubling to all of us. Going to dr b in mid December. Praying it's not too late to help her. I've cried in front of her before - good and bad. Part of me feels like it's been the only time she really snaps out of it to see I'm aching for her (usually too combative, wound up, agitated to see that) another part of me never want her to us us wavering because I'm afraid it will scare her. Always want her to fell like we're in control, have the answers, and know how to get her well, even though we tell her to be patient. So, I totally get it. No roadmaps here - not something any of us ever thought we'd be dealing with. You do the best you can each day I guess. In the end, hopefully they'll look back and realize we at least cared enough to cry with them.

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I could fill the rest of this tub I sit in with water from my eyes....half a bottle of wine has helped...or has it? I know all of your words have helped. Sorry to hear the sadness abounds in others lives too. Man...tomorrow is another day.

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