Non- pandas DD has pandas

[dcmom]

Okay- I needed a little time to get my act together and post this. I am looking for some opinions and direction from y'all.

 

My younger daughter Julia had a clear cut pandas onset concurrent with a positive strep test this February. It has been up and down for her since then. We see Dr Latimer, sometimes Dr Trifiletti, and are considering going to Dr B in CT.

 

At the same time, her older sister Caroline, had the same strain of strep (no typical symptoms or pharyngitis- just had her cultured when she complained of a stomach ache). I don't believe she had it long or is a carrier, because when Julia was diagnosed I had Caroline swabbed- culture was negative. A week later when she was tired and complained of a tummy ache she was swabbed again, this time postitive. She did a course of amoxicillin, and got a bit better, but not completely. She was back to school for a week, and then home again for a week with stomach aches and fatigue. Did some blood tests, strep test, mono test, flu test- all negative. She did seem to get better, but the stomach aches never went away. Proceeded to the GI doc, did more bloodwork, urinalysis, and x ray, he found nothing and though it was functional abdominal pain. In the meantime, Caroline begins to be extremely anxious about the stomach aches (I mean it bothers her, but she is not doubled over in pain, has no diarheea or gas) she no longer enjoys eating or going out, and starts saying she dislikes a lot of foods she previously enjoyed. She quits ballet- something she has loved and been serious about since the age of 3- but like quits immediately she hates it and cannot go. She becomes generally more anxious and emotional, occasionally having some temper tantrums where she has a hard time calming down. She starts to have issues with kids at school- saying they are being mean.

 

So- basically I have a new kid- she was extremely confident, shiny, enthusiastic, happy, kid who enjoyed eating and going out, and was my easy reasonable child. Now she is full of general anxiety, along with anxiety about stomach aches, throwing up (which she never does), germs and illness. She is very moody and doesn't like to eat out or go out much. As I type this its a no brainer right? She has pandas? I mean I had been attributing this all to getting older (she is 9) and the stress of the sister with pandas- but it is too much right?

 

So anyway, her cam kinase was normal ? Where does that leave me? It was done about 8 mos after strep infection. All of her other Cunningham numbers, however were at the absolute highest number in the normal range. Dr Cunningham thought they were high but nothing conclusive. Dr Latimer thinks pandas is a possibility for her, she does have mild chorea. She started on daily zithromax (200mg- don't know if that is enough for a 54 lb kid) a few weeks ago. I don't really see any change yet. Am hoping to start a steroid burst this week.

 

Oh and BTW, Saturday night we could not get her off of the toilet. She sat there for an hour. We finally had to physically take her off, and hold her in our bed. This went on until midnight. She said if she got off the toilet she thought she would throw up- there was no reasoning with my once smart reasonable sensible kid. Finally I put her in the shower, and brought her down to watch TV with me laying next to her hugging her for the next hour, at about 1:30 am she fell asleep.

 

This is not normal, right? This is pandas isn't it- just milder than my other one?

 

So what dose of zithromax should she be on? How long should I give it? If I switch, to what? She actually may have penicillin allergy...and possibly cephalosporin allergy...so I might be stuck with zithromax.

 

Sorry this is so long. I needed to share with people who will understand....

[ajcire]

I don't have any big words of wisdom on this as I feel like I know nothing compared to everyone here but I wanted to offer you big hugs. I am starting to panic about my non pandas dd as well.

 

 

Okay- I needed a little time to get my act together and post this. I am looking for some opinions and direction from y'all.

 

My younger daughter Julia had a clear cut pandas onset concurrent with a positive strep test this February. It has been up and down for her since then. We see Dr Latimer, sometimes Dr Trifiletti, and are considering going to Dr B in CT.

 

At the same time, her older sister Caroline, had the same strain of strep (no typical symptoms or pharyngitis- just had her cultured when she complained of a stomach ache). I don't believe she had it long or is a carrier, because when Julia was diagnosed I had Caroline swabbed- culture was negative. A week later when she was tired and complained of a tummy ache she was swabbed again, this time postitive. She did a course of amoxicillin, and got a bit better, but not completely. She was back to school for a week, and then home again for a week with stomach aches and fatigue. Did some blood tests, strep test, mono test, flu test- all negative. She did seem to get better, but the stomach aches never went away. Proceeded to the GI doc, did more bloodwork, urinalysis, and x ray, he found nothing and though it was functional abdominal pain. In the meantime, Caroline begins to be extremely anxious about the stomach aches (I mean it bothers her, but she is not doubled over in pain, has no diarheea or gas) she no longer enjoys eating or going out, and starts saying she dislikes a lot of foods she previously enjoyed. She quits ballet- something she has loved and been serious about since the age of 3- but like quits immediately she hates it and cannot go. She becomes generally more anxious and emotional, occasionally having some temper tantrums where she has a hard time calming down. She starts to have issues with kids at school- saying they are being mean.

 

So- basically I have a new kid- she was extremely confident, shiny, enthusiastic, happy, kid who enjoyed eating and going out, and was my easy reasonable child. Now she is full of general anxiety, along with anxiety about stomach aches, throwing up (which she never does), germs and illness. She is very moody and doesn't like to eat out or go out much. As I type this its a no brainer right? She has pandas? I mean I had been attributing this all to getting older (she is 9) and the stress of the sister with pandas- but it is too much right?

 

So anyway, her cam kinase was normal ? Where does that leave me? It was done about 8 mos after strep infection. All of her other Cunningham numbers, however were at the absolute highest number in the normal range. Dr Cunningham thought they were high but nothing conclusive. Dr Latimer thinks pandas is a possibility for her, she does have mild chorea. She started on daily zithromax (200mg- don't know if that is enough for a 54 lb kid) a few weeks ago. I don't really see any change yet. Am hoping to start a steroid burst this week.

 

Oh and BTW, Saturday night we could not get her off of the toilet. She sat there for an hour. We finally had to physically take her off, and hold her in our bed. This went on until midnight. She said if she got off the toilet she thought she would throw up- there was no reasoning with my once smart reasonable sensible kid. Finally I put her in the shower, and brought her down to watch TV with me laying next to her hugging her for the next hour, at about 1:30 am she fell asleep.

 

This is not normal, right? This is pandas isn't it- just milder than my other one?

 

So what dose of zithromax should she be on? How long should I give it? If I switch, to what? She actually may have penicillin allergy...and possibly cephalosporin allergy...so I might be stuck with zithromax.

 

Sorry this is so long. I needed to share with people who will understand....

[colleenrn]

Hi. It does sound very suspicous of PANDAS. In my experience, siblings can present very differently. My oldest child had the abrupt, over night onset of OCD and tics, so she was much easier to figure out. My Next two children were more difficult to figure out b/c they have had minor tics, here and there, but their symptoms are more just being extremely emotional, hyper, fidgety, lack of attention, etc... B/c they are active 6 and 8 year old boys, it is so hard sometimes to tease through the symptoms. Are they all PANDAS symptoms? Are some just normal behaviors for little boys? And my youngest (3) is the most difficult to figure out, so I am struggling right now to determine if it is PANDAS with him.

 

What was her CamKinase?

 

My 46 lb. son is on 250mng of Zith per day and cannot go lower than that dose or symptoms worsen. When I see a flareup even on the 250 of Zith, I bump him up t 375 for about 5 days. How long has she been on the 200/day? You may want to consider bumping her to 250/day or even 375/day for a week, and drop back down. These are all just suggestions. I know how frustrating it is to try and figure this all out.

 

Colleen

[faith]

dcmom,

Just throwing this out there, since there's no tics or ocd yet, right? maybe she's too young for this, don' t know, but any possibiltity her body is starting to hormone shift and she's getting ready to menstruate soon? the stomach aches could be like period cramps, maybe it might come soon? the behaviors could be chalked up to that kind of thing, the whole 'pms" stuff, lol. but really don't know, again, I guess 9 is young for that, but you never know. I don't know much myself yet about all the PANDAS and abx stuff, so won't try to give advice there.

 

Also, she may really know her stomach is bothering her in some way and could be she is impacted, that was a problem for my son a while back and the doctor said to try Miralax, a kind of stool softener. I didn't think it was that, but it did wind up helping things along and he didn't complain afterwards. just a thought. I was thinking something was wrong, but the doctor thought at his age it was very unlikely that there was anything really wrong.

 

Faith

[Buster]

Hi Dcmom,

 

It sure does sound like OCD with physical manifestation. Have you tried the over-the-counter stuff like Pepcid or Tums? It's unlikely these will change things, but who knows. They're definitely worth a short trial. Do you think the food item is more an excuse to not eat (i.e., do you think she's having anorexia)? Is she able to express what she's worried about ... also how old is Caroline?

 

Buster

 

 

 

Okay- I needed a little time to get my act together and post this. I am looking for some opinions and direction from y'all.

 

My younger daughter Julia had a clear cut pandas onset concurrent with a positive strep test this February. It has been up and down for her since then. We see Dr Latimer, sometimes Dr Trifiletti, and are considering going to Dr B in CT.

 

At the same time, her older sister Caroline, had the same strain of strep (no typical symptoms or pharyngitis- just had her cultured when she complained of a stomach ache). I don't believe she had it long or is a carrier, because when Julia was diagnosed I had Caroline swabbed- culture was negative. A week later when she was tired and complained of a tummy ache she was swabbed again, this time postitive. She did a course of amoxicillin, and got a bit better, but not completely. She was back to school for a week, and then home again for a week with stomach aches and fatigue. Did some blood tests, strep test, mono test, flu test- all negative. She did seem to get better, but the stomach aches never went away. Proceeded to the GI doc, did more bloodwork, urinalysis, and x ray, he found nothing and though it was functional abdominal pain. In the meantime, Caroline begins to be extremely anxious about the stomach aches (I mean it bothers her, but she is not doubled over in pain, has no diarheea or gas) she no longer enjoys eating or going out, and starts saying she dislikes a lot of foods she previously enjoyed. She quits ballet- something she has loved and been serious about since the age of 3- but like quits immediately she hates it and cannot go. She becomes generally more anxious and emotional, occasionally having some temper tantrums where she has a hard time calming down. She starts to have issues with kids at school- saying they are being mean.

 

So- basically I have a new kid- she was extremely confident, shiny, enthusiastic, happy, kid who enjoyed eating and going out, and was my easy reasonable child. Now she is full of general anxiety, along with anxiety about stomach aches, throwing up (which she never does), germs and illness. She is very moody and doesn't like to eat out or go out much. As I type this its a no brainer right? She has pandas? I mean I had been attributing this all to getting older (she is 9) and the stress of the sister with pandas- but it is too much right?

 

So anyway, her cam kinase was normal ? Where does that leave me? It was done about 8 mos after strep infection. All of her other Cunningham numbers, however were at the absolute highest number in the normal range. Dr Cunningham thought they were high but nothing conclusive. Dr Latimer thinks pandas is a possibility for her, she does have mild chorea. She started on daily zithromax (200mg- don't know if that is enough for a 54 lb kid) a few weeks ago. I don't really see any change yet. Am hoping to start a steroid burst this week.

 

Oh and BTW, Saturday night we could not get her off of the toilet. She sat there for an hour. We finally had to physically take her off, and hold her in our bed. This went on until midnight. She said if she got off the toilet she thought she would throw up- there was no reasoning with my once smart reasonable sensible kid. Finally I put her in the shower, and brought her down to watch TV with me laying next to her hugging her for the next hour, at about 1:30 am she fell asleep.

 

This is not normal, right? This is pandas isn't it- just milder than my other one?

 

So what dose of zithromax should she be on? How long should I give it? If I switch, to what? She actually may have penicillin allergy...and possibly cephalosporin allergy...so I might be stuck with zithromax.

 

Sorry this is so long. I needed to share with people who will understand....

[thereishope]

I'm sorry you're going through this.

 

I have a few questions....When you went to the GI doc, did they do a stool sample for strep? Did mom and dad go and get swabbed recently? Have you tired Ibuprofen to see if it makes a difference? Is the chorea sudden onset? If not, when did you first notice it? Do you give her probiotics?

 

Along with the Ibuprofen, you could start giving her some Omega 3's to see if that helps with the OCD.Myabe cut out milk for the time being as well.

[dcmom]

Thanks for the responses- I will try to answer them all if I remember.

 

The GI doc did not do a stool test. She has been swabbed prior to and and after her bout with strep in February- all others negative. Mom and Dad have been swabbed a few times over this past year. All negative.

 

I never noticed the chorea- Dr Latimer did about a month ago at her first appt.

 

We eliminated ALL dairy for almost a month at one point- no help.

 

She is very regular as far as bowel movements go, usually once a day.

 

Interestingly, a new ped we saw thought the abdominal pain was more a sensory issue, which he said he used to term anxiety (lightbulb moment).

 

We did pepcid, prevacid and bentyl- no help.

 

Caroline is almost 9 1/2, in fourth grade. I don't see any signs of developing yet. She is my oldest, so I did (sometimes do) chalk the emotional issues up to growing up. But the fear of germs, throwing up, and not wanting to do stuff (like go to the movies) because her stomach might hurt just doesn't seem normal.

 

I don't know the eating thing- I think she just doesn't enjoy eating because she is afraid it will make her feel sick. She is eating adequately, but somewhat reluctantly. For breakfast and lunch, she eats the same thing every day. She doesn't like anything I offer for dinner (and she used to LOVE dinner). Like last night she requested spaghetti and meatballs- so I made it, but when it came time to eat she had about 1/2 of meatball and two bites of pasta. There is very little joy for her in food- which is so opposite of how she was.

[ajcire]

What does subtle chorea look like? I don't know what chorea really is but wonder if I just miss it in my ds or if he doesn't have it.

[matis_mom]

Okay- I needed a little time to get my act together and post this. I am looking for some opinions and direction from y'all.

 

My younger daughter Julia had a clear cut pandas onset concurrent with a positive strep test this February. It has been up and down for her since then. We see Dr Latimer, sometimes Dr Trifiletti, and are considering going to Dr B in CT.

 

At the same time, her older sister Caroline, had the same strain of strep (no typical symptoms or pharyngitis- just had her cultured when she complained of a stomach ache). I don't believe she had it long or is a carrier, because when Julia was diagnosed I had Caroline swabbed- culture was negative. A week later when she was tired and complained of a tummy ache she was swabbed again, this time postitive. She did a course of amoxicillin, and got a bit better, but not completely. She was back to school for a week, and then home again for a week with stomach aches and fatigue. Did some blood tests, strep test, mono test, flu test- all negative. She did seem to get better, but the stomach aches never went away. Proceeded to the GI doc, did more bloodwork, urinalysis, and x ray, he found nothing and though it was functional abdominal pain. In the meantime, Caroline begins to be extremely anxious about the stomach aches (I mean it bothers her, but she is not doubled over in pain, has no diarheea or gas) she no longer enjoys eating or going out, and starts saying she dislikes a lot of foods she previously enjoyed. She quits ballet- something she has loved and been serious about since the age of 3- but like quits immediately she hates it and cannot go. She becomes generally more anxious and emotional, occasionally having some temper tantrums where she has a hard time calming down. She starts to have issues with kids at school- saying they are being mean.

 

So- basically I have a new kid- she was extremely confident, shiny, enthusiastic, happy, kid who enjoyed eating and going out, and was my easy reasonable child. Now she is full of general anxiety, along with anxiety about stomach aches, throwing up (which she never does), germs and illness. She is very moody and doesn't like to eat out or go out much. As I type this its a no brainer right? She has pandas? I mean I had been attributing this all to getting older (she is 9) and the stress of the sister with pandas- but it is too much right?

 

So anyway, her cam kinase was normal ? Where does that leave me? It was done about 8 mos after strep infection. All of her other Cunningham numbers, however were at the absolute highest number in the normal range. Dr Cunningham thought they were high but nothing conclusive. Dr Latimer thinks pandas is a possibility for her, she does have mild chorea. She started on daily zithromax (200mg- don't know if that is enough for a 54 lb kid) a few weeks ago. I don't really see any change yet. Am hoping to start a steroid burst this week.

 

Oh and BTW, Saturday night we could not get her off of the toilet. She sat there for an hour. We finally had to physically take her off, and hold her in our bed. This went on until midnight. She said if she got off the toilet she thought she would throw up- there was no reasoning with my once smart reasonable sensible kid. Finally I put her in the shower, and brought her down to watch TV with me laying next to her hugging her for the next hour, at about 1:30 am she fell asleep.

 

This is not normal, right? This is pandas isn't it- just milder than my other one?

 

So what dose of zithromax should she be on? How long should I give it? If I switch, to what? She actually may have penicillin allergy...and possibly cephalosporin allergy...so I might be stuck with zithromax.

 

Sorry this is so long. I needed to share with people who will understand....

[matis_mom]

Okay- I needed a little time to get my act together and post this. I am looking for some opinions and direction from y'all.

 

My younger daughter Julia had a clear cut pandas onset concurrent with a positive strep test this February. It has been up and down for her since then. We see Dr Latimer, sometimes Dr Trifiletti, and are considering going to Dr B in CT.

 

At the same time, her older sister Caroline, had the same strain of strep (no typical symptoms or pharyngitis- just had her cultured when she complained of a stomach ache). I don't believe she had it long or is a carrier, because when Julia was diagnosed I had Caroline swabbed- culture was negative. A week later when she was tired and complained of a tummy ache she was swabbed again, this time postitive. She did a course of amoxicillin, and got a bit better, but not completely. She was back to school for a week, and then home again for a week with stomach aches and fatigue. Did some blood tests, strep test, mono test, flu test- all negative. She did seem to get better, but the stomach aches never went away. Proceeded to the GI doc, did more bloodwork, urinalysis, and x ray, he found nothing and though it was functional abdominal pain. In the meantime, Caroline begins to be extremely anxious about the stomach aches (I mean it bothers her, but she is not doubled over in pain, has no diarheea or gas) she no longer enjoys eating or going out, and starts saying she dislikes a lot of foods she previously enjoyed. She quits ballet- something she has loved and been serious about since the age of 3- but like quits immediately she hates it and cannot go. She becomes generally more anxious and emotional, occasionally having some temper tantrums where she has a hard time calming down. She starts to have issues with kids at school- saying they are being mean.

 

So- basically I have a new kid- she was extremely confident, shiny, enthusiastic, happy, kid who enjoyed eating and going out, and was my easy reasonable child. Now she is full of general anxiety, along with anxiety about stomach aches, throwing up (which she never does), germs and illness. She is very moody and doesn't like to eat out or go out much. As I type this its a no brainer right? She has pandas? I mean I had been attributing this all to getting older (she is 9) and the stress of the sister with pandas- but it is too much right?

 

So anyway, her cam kinase was normal ? Where does that leave me? It was done about 8 mos after strep infection. All of her other Cunningham numbers, however were at the absolute highest number in the normal range. Dr Cunningham thought they were high but nothing conclusive. Dr Latimer thinks pandas is a possibility for her, she does have mild chorea. She started on daily zithromax (200mg- don't know if that is enough for a 54 lb kid) a few weeks ago. I don't really see any change yet. Am hoping to start a steroid burst this week.

 

Oh and BTW, Saturday night we could not get her off of the toilet. She sat there for an hour. We finally had to physically take her off, and hold her in our bed. This went on until midnight. She said if she got off the toilet she thought she would throw up- there was no reasoning with my once smart reasonable sensible kid. Finally I put her in the shower, and brought her down to watch TV with me laying next to her hugging her for the next hour, at about 1:30 am she fell asleep.

 

This is not normal, right? This is pandas isn't it- just milder than my other one?

 

So what dose of zithromax should she be on? How long should I give it? If I switch, to what? She actually may have penicillin allergy...and possibly cephalosporin allergy...so I might be stuck with zithromax.

 

Sorry this is so long. I needed to share with people who will understand....

A lot of the physical and behavioral symptoms you describe for your daughter sounds so much like my PANDAS ds! He had the stomach aches off and on, a few episodes of throwing up, fatigue, germ-phobia, not wanting to go outside, spending tons of time in the bathroom...

His strep titers were all high, they also found strep in his stool. He never had any "throat" symptoms. He also had adrenal fatigue (something to check out if your daughter is feeling tired all the time), presumably from the body fighting strep so long without help. He has been on Amoxicilin, Cefuroxime, Vancomycin (this is good for clearing the GI track and can be used with other antibiotics), and now is on Augmentin (we are seeing Dr. Latimer).

[dcmom]

mati's mom- has anything worked for him? how does one test for adrenal fatigue (don't tell me - more blood- this causes hysteria, fainting and vomiting in her).

[dcmom]

As you know it is just so heartbreaking- she was so amazing- confident, happy, enthusiastic, brave, smart, etc.. so much of that is gone

[FallingApart]

OMG, Eileen! This is not good. I'm so sorry to read this post. The part you wrote about ballet sounds exactly like my daughter last winter. I know there is a significant age diff between my DD then and Caroline now, but the behavior is the same. The only positive in this is that you know what you are looking for and you have a team in place already that you can work with. THis has to be a huge emotional blow for your family.

 

I look at my youngest non PANDAS DD each day and am grateful for her. I live in fear that we could lose her too. She is so perfect and vivacious and so I understand the pain you are going through. Is there anything I can do to help?

[sf_mom]

I know your heartbreak and you will NEED to check your daughter to be assured she is o.k. Remember, we have potentially 4 children out of 5 that are PANDAS from a playdate.

 

Perhaps, try giving her some benadryl an hour before blood draw. I would test RBC, WBC, Strep Antibody Titers, IgG Subclasses and CaM Kinase 'again' (these can be done all at once). It definitely sounds like she if fighting something off and the sooner you get her help the more likely she'll recover easily.

 

-Wendy

[dut]

Hello

 

So sorry this happening. We are in the same place with our son... at least you have some of the knowledge this time and hopefully you can nip it in the bud. The food issues sound exactly like our PANDAS dd. She'll eat but has become amazingly picky. She used to be one of those kids that would eat anything. The only good thing we could find in possibly having 2 kids with this was our dd6 said it made her feel less alone thinking her brother might have it. She knows other kids get it but having another one in the family makes her feel much better.... small comfort though faced with the fear, I know.

 

We'll be thinkin of you and your children...