Setback today :(

[nomoz]

My daughter, 7, has been on Biaxin for just two weeks, and has had really really remarkable progress. She's being treated currently for mycoplasm.. Just last nite I spoke of her here, with fear and hope in hand. Because you never know, from one day to the next with these children. When she woke up today, she had "the look" - the red circles under her eyes, and I kind of felt it early on - not going to be a good day. And it wasn't. On a scale from one to ten of improvement, she measured in at about 3 today. She went shopping with my Mother-in-Law and myself for a dress for her Communion, and flipped out about hating God and how she's NEVER going to receive it. "God is just a big fat idiot" her familiar line returned along with one really loud "JESUS CHRIST" - along with this she acted really really hyper - not really paying much attention or interest unless she really wanted to - and settled down, finally, on our ride home. Tonite, while at a visit with my sister, she started up again, really screaming at me and her cousin. Sigh. I'm just so frustrated. I'm not looking for a miracle here - I know to expect good and bad days. But it was sooo good. And today was all too familiar on the bad side of things. I swear, though, that "look" speaks volumes. That is their body saying "Help. I'm just not right." I wish I knew how to.

Thanks, everyone.

Noelle

[Suzan]

My daughter, 7, has been on Biaxin for just two weeks, and has had really really remarkable progress. She's being treated currently for mycoplasm.. Just last nite I spoke of her here, with fear and hope in hand. Because you never know, from one day to the next with these children. When she woke up today, she had "the look" - the red circles under her eyes, and I kind of felt it early on - not going to be a good day. And it wasn't. On a scale from one to ten of improvement, she measured in at about 3 today. She went shopping with my Mother-in-Law and myself for a dress for her Communion, and flipped out about hating God and how she's NEVER going to receive it. "God is just a big fat idiot" her familiar line returned along with one really loud "JESUS CHRIST" - along with this she acted really really hyper - not really paying much attention or interest unless she really wanted to - and settled down, finally, on our ride home. Tonite, while at a visit with my sister, she started up again, really screaming at me and her cousin. Sigh. I'm just so frustrated. I'm not looking for a miracle here - I know to expect good and bad days. But it was sooo good. And today was all too familiar on the bad side of things. I swear, though, that "look" speaks volumes. That is their body saying "Help. I'm just not right." I wish I knew how to.

Thanks, everyone.

Noelle

 

I am so sorry, we have a look too that speaks volumes. With the improvement you've seen, I have to hold on to the hope for you that this is just a bump in the road, part of the healing process. I remember when my dd had her first improvement where we actually had weeks of really great stuff. It was harder to go back than before we ever saw any improvement. I hope that you will see something better tomorrow.

 

Susan

[momaine]

My daughter, 7, has been on Biaxin for just two weeks, and has had really really remarkable progress. She's being treated currently for mycoplasm.. Just last nite I spoke of her here, with fear and hope in hand. Because you never know, from one day to the next with these children. When she woke up today, she had "the look" - the red circles under her eyes, and I kind of felt it early on - not going to be a good day. And it wasn't. On a scale from one to ten of improvement, she measured in at about 3 today. She went shopping with my Mother-in-Law and myself for a dress for her Communion, and flipped out about hating God and how she's NEVER going to receive it. "God is just a big fat idiot" her familiar line returned along with one really loud "JESUS CHRIST" - along with this she acted really really hyper - not really paying much attention or interest unless she really wanted to - and settled down, finally, on our ride home. Tonite, while at a visit with my sister, she started up again, really screaming at me and her cousin. Sigh. I'm just so frustrated. I'm not looking for a miracle here - I know to expect good and bad days. But it was sooo good. And today was all too familiar on the bad side of things. I swear, though, that "look" speaks volumes. That is their body saying "Help. I'm just not right." I wish I knew how to.

Thanks, everyone.

Noelle

Hang in there. My dd had one bad day a few days ago and then is back to her new and improved state, over all. A little difficulty here and there but much improved over all.

 

Angela

[GatsMom]

My daughter, 7, has been on Biaxin for just two weeks, and has had really really remarkable progress. She's being treated currently for mycoplasm.. Just last nite I spoke of her here, with fear and hope in hand. Because you never know, from one day to the next with these children. When she woke up today, she had "the look" - the red circles under her eyes, and I kind of felt it early on - not going to be a good day. And it wasn't. On a scale from one to ten of improvement, she measured in at about 3 today. She went shopping with my Mother-in-Law and myself for a dress for her Communion, and flipped out about hating God and how she's NEVER going to receive it. "God is just a big fat idiot" her familiar line returned along with one really loud "JESUS CHRIST" - along with this she acted really really hyper - not really paying much attention or interest unless she really wanted to - and settled down, finally, on our ride home. Tonite, while at a visit with my sister, she started up again, really screaming at me and her cousin. Sigh. I'm just so frustrated. I'm not looking for a miracle here - I know to expect good and bad days. But it was sooo good. And today was all too familiar on the bad side of things. I swear, though, that "look" speaks volumes. That is their body saying "Help. I'm just not right." I wish I knew how to.

Thanks, everyone.

Noelle

Hang in there. My dd had one bad day a few days ago and then is back to her new and improved state, over all. A little difficulty here and there but much improved over all.

 

Angela

 

We're having the same experiences as Angela. I know for both my ds16 and I, those backslide days that come after a string of good days are PARTICULARLY difficult. Do your best to hang in there. Her body is doing its best to recover itself and she will forget about today likely far more quickly than you will. So sorry about what you are going through! Been there and tomorrow could be a much improved day for you both.

 

Gayle

[momaine]

they are particularly difficult to handle because all of my hope goes down the toilet for the time being. Now that I've seen it happen once, I hopefully won't panic if it happens again. I'll first try to up the Advil and then just deal with it and try not to lose hope.

 

I hope tomorrow is a better day!

Angela

[nomoz]

they are particularly difficult to handle because all of my hope goes down the toilet for the time being. Now that I've seen it happen once, I hopefully won't panic if it happens again. I'll first try to up the Advil and then just deal with it and try not to lose hope.

 

I hope tomorrow is a better day!

Angela

 

 

Thank you, and I hope so, too! Angela, what dose of Biaxin are you using? Just curious. My daughter is on 500mg daily. BTW, she's still awake tonite, back from my sister's (she stayed behind when I left -she was crying and not wanting to be around me - I am often her trigger) and she is really really good right now, eating some chicken soup... I know you all know where I'm coming from - setbacks just kill you inside, because you really want to believe in what you're doing for your child. I do have to say, I think you are right - her body is trying to recover, and maybe the surges are just part of that process.

I hope and pray for all the kids going through this, and for their families. I think this forum is a powerful one - a place where we can actually get answers, and more importantly - hope - from one another.

Thank you!

Noelle

[WornOutDad]

Glad she's doing better tonight. I SO identify with the fear of watching it all come back and being terrified it won't go away. For me, it has been really painful to get glimpes (for us so far only hours or a day at best recently) of who I know my son is without this disorder, only to watch him seized by it again. But it's what makes me keep going...I'll be thinking of you - hope this was just a "blip" for her.

[WornOutDad]

Glad she's doing better tonight. I SO identify with the fear of watching it all come back and being terrified it won't go away. For me, it has been really painful to get glimpes (for us so far only hours or a day at best recently) of who I know my son is without this disorder, only to watch him seized by it again. But it's what makes me keep going...I'll be thinking of you - hope this was just a "blip" for her.

[wornoutmom]

computer logged my on as my dear hubby, but that last post was really from me..

[MomWithOCDSon]

There must be something in the air today. Our DS13 hit a bump today, also . . . the biggest, longest meltdown we've seen in a long time. And it was over virtually nothing, too. I remember thinking, when I woke him up this morning, that his pupils looked larger than they had when I tucked him in last night, despite the lighting being identical.

 

But he did recover, and he's held it together for the remainder of the day, too. Hang in there! This saw-tooth stuff can be demoralizing, but we just have to keep our eyes on the big, long-term picture. Your DD will return to her better state soon!

[thereishope]

Let's hope it's just a bump in recovery. My son had those bumps. Sometimes they'd last for a couple days then he'd be back on track and even a little better. During recovery, they are fragile. Viruses, exposure, stress can cause setbacks. With all this Communion excitement going on, it could be adding to it. When my older non-PANDAS son was about to receive First Communion last year, my PANDAS son was not yet recovered. it was so stressful for me not knowing how it would pan out. At that time, he was still wearing his hood everywhere. well, you can't wear your hood in Church! Then I had a panic attack when I realized my non-PANDAS son would be drinking for the wine challis and I saw they forgot to wipe it after one child during practice. I debated so long whether I should tell him not to take the wine.

 

It'll be okay. Take a deep breath and take a break from excitement and planning for a couple days. let her take it in and hopefully "snap out " of her setback.

 

Keep us posted.

[nomoz]

Let's hope it's just a bump in recovery. My son had those bumps. Sometimes they'd last for a couple days then he'd be back on track and even a little better. During recovery, they are fragile. Viruses, exposure, stress can cause setbacks. With all this Communion excitement going on, it could be adding to it. When my older non-PANDAS son was about to receive First Communion last year, my PANDAS son was not yet recovered. it was so stressful for me not knowing how it would pan out. At that time, he was still wearing his hood everywhere. well, you can't wear your hood in Church! Then I had a panic attack when I realized my non-PANDAS son would be drinking for the wine challis and I saw they forgot to wipe it after one child during practice. I debated so long whether I should tell him not to take the wine.

 

It'll be okay. Take a deep breath and take a break from excitement and planning for a couple days. let her take it in and hopefully "snap out " of her setback.

 

Keep us posted.

 

Thank you for your concern and words of encouragement. Today was better - she did alot of fun things today and only acted out while she was winding down from her day. BIG difference from yesterday. I'm keeping a daily chart here, and will keep everyone in the loop.

Thank you!!!!

[momaine]

Let's hope it's just a bump in recovery. My son had those bumps. Sometimes they'd last for a couple days then he'd be back on track and even a little better. During recovery, they are fragile. Viruses, exposure, stress can cause setbacks. With all this Communion excitement going on, it could be adding to it. When my older non-PANDAS son was about to receive First Communion last year, my PANDAS son was not yet recovered. it was so stressful for me not knowing how it would pan out. At that time, he was still wearing his hood everywhere. well, you can't wear your hood in Church! Then I had a panic attack when I realized my non-PANDAS son would be drinking for the wine challis and I saw they forgot to wipe it after one child during practice. I debated so long whether I should tell him not to take the wine.

 

It'll be okay. Take a deep breath and take a break from excitement and planning for a couple days. let her take it in and hopefully "snap out " of her setback.

 

Keep us posted.

 

Thank you for your concern and words of encouragement. Today was better - she did alot of fun things today and only acted out while she was winding down from her day. BIG difference from yesterday. I'm keeping a daily chart here, and will keep everyone in the loop.

Thank you!!!!

I used Buster's chart idea and made it my own. I listed her typical behaviors and I rate them every day on a scale of 1-9. then I use excel to see them on a line graph. It makes me feel better and its quick once you set it up and play with it for a bit.

[kimballot]

I used Buster's chart idea and made it my own. I listed her typical behaviors and I rate them every day on a scale of 1-9. then I use excel to see them on a line graph. It makes me feel better and its quick once you set it up and play with it for a bit.

 

Glad to hear things are picking up for Noelle. I was wondering if there is a post somewhere with a suggested chart - or where I might find Buster's chart. I am also wondering if any of your kids have allergy triggers. Mine does and I know I we have bad days in the spring when the pollens first start and in the fall with the molds. Also have bad days after certain foods. I am wondering if anyone is charting these and seeing these as triggers. - Thanks

[nomoz]

I used Buster's chart idea and made it my own. I listed her typical behaviors and I rate them every day on a scale of 1-9. then I use excel to see them on a line graph. It makes me feel better and its quick once you set it up and play with it for a bit.

 

Glad to hear things are picking up for Noelle. I was wondering if there is a post somewhere with a suggested chart - or where I might find Buster's chart. I am also wondering if any of your kids have allergy triggers. Mine does and I know I we have bad days in the spring when the pollens first start and in the fall with the molds. Also have bad days after certain foods. I am wondering if anyone is charting these and seeing these as triggers. - Thanks

 

I'm not familiar with Buster's chart either - maybe someone can get us in the loop! BUT - very interesting you should bring up allergy triggers. My daughter spends alot of time at a dairy farm on the weekends... and, she is usually really symptomatic upon coming home, and for a few days following. This weekend was no exception - she went yesterday to the farm, and today, she was about a 5 on a scale from 1-10. My hunch is there is some allergy trigger there, in the barns, with the cows, or in the ponds.. I just don't know for certain.