Any ideas? My non pandas dd

[ajcire]

I don't know what to make of this and my imagination is on overdrive. My 5 year old dd is the one in my house who tends to get strep with classic symptoms. She has been more difficult lately but nothing crazy out of range of any 5 year old. That alone would not have me concerned but with my ds's history and my eyes wide open I now am remembering a month ago when my dd who is normally like a camel told me that at school for several days in a row she used the bathroom and then had to go again (not an upset belly). She had been going a bunch more at home but it stopped within a few days and still didn't concern me. The past few nights she has been giving me a hard time about bedtime (that was the piece with my ds that clicked our puzzle together). She keeps saying her throat hurts and her belly but I have had her to the dr. and they always do the culture if the rapid is negative. She is complaining sporadically but is acting not sick. She is more clingy to me and emotional but she was always on the more dramatic side. The past 2 days she is saying she wants me to drive her to school, doesn't want to go on the bus but really has no reason. This child loves school and loves riding the bus. She just keeps saying all the time that she doesn't feel good but they don't find anything. Last night she woke up 2 times hysterical about this. She is wishy washy on it being her throat. I really think she just knows that it is a way to get me to come into her.

 

What would you do with a child who keeps saying she doesn't feel well but nothing is showing up and I am not even sure if she is telling the truth now or if its' just become something she is saying. In the past she has been right... a sore throat usually equalled strep. I always take her if she says it hurts.

[thereishope]

Is your 5 year old dd PANDAS? When did you last take her for a strep test? And she's saying her belly hurts? I remember someone on here saying their daughter or a friend of theirs complained about an upset stoamch for months. They finally figured out she had strep in her gut. But I can't rememebr what test you do for that. Maybe someone else knows?

[ajcire]

Hi Vickie (It's Erica... I did a name change... I hate to confuse things but hated that I had used my name like that)

 

My 7 year old ds is my pandas kid. MY 5 year old dd does not have pandas to the best of my knowledge. I am getting nervous now though. She had her last strep test the end of last week. She always says her tummy hurts. They just keep telling me to do elimination diets to see if it's that and I confess that I have not done that because it seemed like such a long shot to me and she is picky to begin with.. was worried about what she would eat if I eliminated wheat or dairy (my ped said to pick one to start with first) I had asked my ped about strep in the gut and he said he had never heard of strep causing constant tummy ahces.. he said he knew tummy aches were a symptom of strep in kids but without strep he didn't think it would be related. He's a nice guy but I am guessing he is wrong on that?

 

Is your 5 year old dd PANDAS? When did you last take her for a strep test? And she's saying her belly hurts? I remember someone on here saying their daughter or a friend of theirs complained about an upset stoamch for months. They finally figured out she had strep in her gut. But I can't rememebr what test you do for that. Maybe someone else knows?

[thereishope]

You guys! I already had a hard time keeping everyone straight! Don't be mad if I continously ask for history reminders:)

[thereishope]

I'm actually finding it easier to pull up old threads using google. I need to go grocery shopping, so I don't have time to search out the specific one I wanted, but here's one quote froma thread...

 

 

http://www.latitudes.org/forums/lofiversio....php?t5650.html

 

 

"mati's mom

Oct 21 2009, 02:27 PM

 

My PANDAS son never tested possitive for strep or had any throat symptons. A stool analysis revealed strep in the gut. Watch out for any GI symptoms, or just not feeling well. My 5-yo (he is not the one with PANDAS) complained of just "not feeling well" off and on for about a week, until I finally took him in. He had strep. I guess we are all used to the throat ache, high fever thing, but it can present in other ways. "

[Megs_Mom]

My dd always has stomach ache when she gets sudden onset OCD. She is not normally a kid that ever has a stomach ache, so we thought it was "worry", but had her tested for all kinds of autoimmune disorders - including Celiac. An odd result ended up in our doing an endoscope for her stomach & intestines, where they did not find evidence of Celiac, but did find quite a few Peptic Ulcers (no h. pylori, no use of nsaids). We got Previcid for her & it really helped - cut the stomach aches out & a lot of the complaints about tasting throw-up - which I also thought were "anxiety", not real. It did not cure the OCD, but it did eliminate a trigger that was pretty constant in her life at that time.

 

We asked the GI guy this week about the possibility that strep in the gut might have caused these - and sadly he was not up on this - he said strep cannot survive in the gut . I know a lot of people have posted the opposite here lately, so I need to go find some studies and send them his way. I was not prepared for the appt, as I really thought this would be more common knowledge. I had asked if we could plan to do some additional testing (stool, etc) if she has another sudden onset, but he was not able to discuss.

 

We are currently adding pro-biotics to her daily regimin for Dec & Jan, so we will try to wean her off the Previcid starting in Feb.

[colleenrn]

I would tend to think she has strep, just not culturing out from her tonsils- could be so many other places. Given her symptoms, I would be very suspicious. My daughter frequently complained of a stomach ache when she was younger and had strep and frequently tested negative for strep, but symptoms resided with antibiotics.

 

When was the last time she took any antibiotics? Would your doctor let you try a course of antibiotics and observe any changes in behavior? If not, maybe try to get a stool test for strep and/or perianal swab to look for strep there.

Colleen

[Debbie1]

I don't know what to make of this and my imagination is on overdrive. My 5 year old dd is the one in my house who tends to get strep with classic symptoms. She has been more difficult lately but nothing crazy out of range of any 5 year old. That alone would not have me concerned but with my ds's history and my eyes wide open I now am remembering a month ago when my dd who is normally like a camel told me that at school for several days in a row she used the bathroom and then had to go again (not an upset belly). She had been going a bunch more at home but it stopped within a few days and still didn't concern me. The past few nights she has been giving me a hard time about bedtime (that was the piece with my ds that clicked our puzzle together). She keeps saying her throat hurts and her belly but I have had her to the dr. and they always do the culture if the rapid is negative. She is complaining sporadically but is acting not sick. She is more clingy to me and emotional but she was always on the more dramatic side. The past 2 days she is saying she wants me to drive her to school, doesn't want to go on the bus but really has no reason. This child loves school and loves riding the bus. She just keeps saying all the time that she doesn't feel good but they don't find anything. Last night she woke up 2 times hysterical about this. She is wishy washy on it being her throat. I really think she just knows that it is a way to get me to come into her.

 

What would you do with a child who keeps saying she doesn't feel well but nothing is showing up and I am not even sure if she is telling the truth now or if its' just become something she is saying. In the past she has been right... a sore throat usually equalled strep. I always take her if she says it hurts.

 

This is so similar to how PANDAS started for us with my son a few years ago. Urinary frequency, some mild separation anxiety and constantly complaining that he doesn't feel well were his only symptoms at the beginning. When was the last time she was positive for strep? I would have her recultured and titers run if your PANDAS child tends to have high titers (and maybe even if not), give a trial of antibiotics and get her an appointment with the PANDAS doctors that follow your other child. Not meaning to scare you, but if it were my child, I would be as thorough as possible given the family history.

[ajcire]

I just wanted to update that I took dd to the ped today and he sent us for a ton of labwork. He said we should rule out lyme and mono and other such things, ran a celiac panel and some other stuff. He doesn't treat my ds for pandas but is the one who is willing to culture, do blooddraws and does believe it is real.. just doesn't know enough about it to comfortably treat it... so he knows my concern is that this might be what is going on with my dd. He did the strep titers tests as well because he felt it couldn't hurt to have it.. he said it should be elevated since she had strep within a few months.

 

So at least I have started... can't take her to a pandas dr. yet because financially I need to take care of our ds who I know is pandas first. My ped was talking to me today about how many children he is seeing with non medical behavior/school issues who need to see behavior therapists or some kind of therapist but that so many of these doctors have gone off insurance that it's a real problem for parents... we were talking about how it really puts families in tough situations because you have to treat your children. I told him that is why I think he should learn all he can about pandas and treat my children with insurance!