DD7 Questions

[Suzan]

I normally post about dd8 as she is my more difficult and critical pandas child. But DD7 has had a tummy ache for a while now. Took her to the doc around 3/31 with a "everything is OK maybe it's allergies" result. She has a headache, stomachache and chest pain that comes and goes and a constant stuffy nose. She is allergic only to dust mites and is on allergy meds for it. She has a history of vaginal strep and strep throat with non-typical symptoms but has not had strep throat in years. She actually seems pretty healthy now except for this recent (past 3 weeks) symptoms. She just got a rash on her torso, face and forearms. Very itchy and patchy and rough (one patch on her torso, one patch on her face and very itchy forearms).

 

** Our Ped won't swab her without more symptoms. I'm surprised by this but dd does kick and bite and cry and scream. I don't look forward to it either.

 

** We see the Ped Neurologist in May. He'll probably be doing blood work and I can get the ASO/AntiDNASE titers redone then although she seems to be a normal-titer-even-with-positive-strep girl.

 

** Sister just had bronchitis but that's not normally contagious is it?

 

** She's gluten free and highly affected by gluten. Maybe she's been getting hidden gluten?

 

** Could it be yeast?

 

** Sounds suspect of rheumatic fever to me but no one ever thinks anything could be rheumatic fever around here.

 

Her typical pandas symptoms are very mild right now (hoarding, food hoarding, food restriction, age regression, non-verbal) but she is pretty angry at times and impulsive but otherwise seems OK but underlying "something's wrong" mom feelings going on. She's on 500mg zith 2x a week.

 

I have an unused prescription of augmentin that I am tempted to use to see if it will help. I just can't decide whether to continue to wait until something worse happens or not.

 

Thoughts? Suggestions? I feel like I keep waiting for it to explode but it does not but it's not going away either.

 

Susan

[thereishope]

Do they know if the bronchitis was caused by Mycoplasma? But, then, that wouldn't explain the rash and possible rheumatic fever. Would you be up for taking her to urgent care over the weekend and getting someone else to swab her? That way you can stay in "good graces" with your ped if you like him and tell him that the rash got worse and you didn't want to wait until Monday. That way it doesn't seem like you're going over his head.

[peglem]

I'd take her to UC for a swab if her doctor won't do it, because I wouldn't want to wait to treat until I see the PedNeuro. I'd get the swab done just before her next dose of zith is due, then give the zith on 2 consecutive days (maybe 3) to allow it to build to treatment levels in her tissues...I would want the strep (if that is what it is) documented, but it seems crazy to me to wait around for symptoms to get worse.

[Suzan]

I'd take her to UC for a swab if her doctor won't do it, because I wouldn't want to wait to treat until I see the PedNeuro. I'd get the swab done just before her next dose of zith is due, then give the zith on 2 consecutive days (maybe 3) to allow it to build to treatment levels in her tissues...I would want the strep (if that is what it is) documented, but it seems crazy to me to wait around for symptoms to get worse.

 

Thanks peglem, I give her the zith doses on Monday and Friday so I could go tomorrow although that is only 2 days since her last dose. Tonight her tummy hurt a lot. Tomorrow she will probably seem better and then I won't take her. This has been going on for a few weeks. I need to just stop and go to get her swabbed. That's what I was hoping for when I took her last to our Ped and was upset about his unwillingness to swab.

 

Vickie, dd8's bronchitis mycoplasma test did come back negative (test done 4 days before she deveoped her cough). I never did learn more about what that was all about but she is doing much better now.

 

Susan

[thereishope]

Oh, that's right. I wouldn't worry about the whatever caused the bronchitis in your other daughter doing something to dd7. You're gonna worry until you get her swabbed, so I say just get it done.

 

 

Vickie, dd8's bronchitis mycoplasma test did come back negative (test done 4 days before she deveoped her cough). I never did learn more about what that was all about but she is doing much better now.

 

Susan

Edited April 11, 2010 by Vickie

[matis_mom]

Susan,

I would not wait. Looking back at my son's records, I found he had 3 of the markers for RF in a period of a couple of months, and like you said, no one ever thinks it's rheumatic fever! That was back in 2006. I guess his PANDAS symptoms were not marked at that point. Does your daughter show any tics or chorea (this can be very subtle, my son had an eye-blinking thing that would come an go, along with joint swelling off and on).

Then about a year ago he started with the stomach aches, fatigue, OCD, etc. Pediatrician was clueless. She did at some point want to do a CBC, but he had so freaked out when they did a blood draw to test for Lyme, she took the "wait and see" approach.

My point is, the stakes are too high! A swab or a blood draw take only a few minutes. The sequaelae (sp?) of RF can last a lifetime!

If your gut is telling you something is wrong, go back and insist. If your doctor won't listen, find another one who will.

Get those titers done now, and the swab (although it will probably be negative), and see if you can get a comprehensive stool analysis to see what is going on in the gut.

You might have to find a doctor who practices functional medicine, or a DAN! doctor, but I would not wait until May.

In my experience, the neurologist is great for the neurological stuff (duh!), but they tend not to run a whole lot of tests, you'll save a lot of time if the ground-work is already done.

Don't mean to freak you out, but I don't want you too look back on this and say "I should have..."

 

Check out this link for RF

http://wikidoc.org/index.php/Rheumatic_heart_disease

[Suzan]

Mati's Mom, this does remind me though, that it is time for the every two year check up with dd's heart specialist. She has a PVC which has never been a problem but they like to monitor it. I've not been looking forward to yet another doctor appt with a specialist where they tell me, "see you in 2 years" but maybe due to all this, it would be good to get in there. I'll call tomorrow and see how long the wait is.

 

When I read the criteria in the link you posted, I start to think no, that it is not her. I thought dd8 had it but it seems it was only her pandas symptoms causing the pain she was experiencing. I imagine that is the same for dd7 but you are right, it is not good to say "if only" down the road. Our doc is a Dan! doc but maybe he is not able to see what is going on with her any more. He understands pandas but is not our primary doc to treat it. He does help us with our surrounding symptoms very well (usually anyway).

 

Susan

[T_Mom]

I normally post about dd8 as she is my more difficult and critical pandas child. But DD7 has had a tummy ache for a while now. Took her to the doc around 3/31 with a "everything is OK maybe it's allergies" result. She has a headache, stomachache and chest pain that comes and goes and a constant stuffy nose. She is allergic only to dust mites and is on allergy meds for it. She has a history of vaginal strep and strep throat with non-typical symptoms but has not had strep throat in years. She actually seems pretty healthy now except for this recent (past 3 weeks) symptoms. She just got a rash on her torso, face and forearms. Very itchy and patchy and rough (one patch on her torso, one patch on her face and very itchy forearms).

 

** Our Ped won't swab her without more symptoms. I'm surprised by this but dd does kick and bite and cry and scream. I don't look forward to it either.

 

** We see the Ped Neurologist in May. He'll probably be doing blood work and I can get the ASO/AntiDNASE titers redone then although she seems to be a normal-titer-even-with-positive-strep girl.

 

** Sister just had bronchitis but that's not normally contagious is it?

 

** She's gluten free and highly affected by gluten. Maybe she's been getting hidden gluten?

 

** Could it be yeast?

 

** Sounds suspect of rheumatic fever to me but no one ever thinks anything could be rheumatic fever around here.

 

Her typical pandas symptoms are very mild right now (hoarding, food hoarding, food restriction, age regression, non-verbal) but she is pretty angry at times and impulsive but otherwise seems OK but underlying "something's wrong" mom feelings going on. She's on 500mg zith 2x a week.

 

I have an unused prescription of augmentin that I am tempted to use to see if it will help. I just can't decide whether to continue to wait until something worse happens or not.

 

Thoughts? Suggestions? I feel like I keep waiting for it to explode but it does not but it's not going away either.

 

Susan

 

 

Susan-- "500 mg of zithromax 2x a week?

 

Is that full strength given her weight? In our d's case it was not until we tried 30 days straight...

(and then continued for over a year--still going!!!) of FULL strength antibiotics (full strength meaning it would be what she would take if she had STREP!

 

I think you may be seeing the benefit but maybe not the entire benefit possible? -- due to the dose?

[Suzan]

Susan-- "500 mg of zithromax 2x a week?

 

Is that full strength given her weight? In our d's case it was not until we tried 30 days straight...

(and then continued for over a year--still going!!!) of FULL strength antibiotics (full strength meaning it would be what she would take if she had STREP!

 

I think you may be seeing the benefit but maybe not the entire benefit possible? -- due to the dose?

 

Well, 250 mg daily is full strength for her weight so it is not full strength right now. She did full strength for months and did very well. She can't swallow pills so I did reduce her dose when she was doing better becaue crushed up zith tastes nasty and giving pills is a huge issue with us. ... So she's getting 4 pills instead of 7 a week (I also get afraid of running out of zith scripts so I reduce when I can and save the rest if she can maintain, I'm a abx hoarder!) And afraid of not being able to get in touch with DR. for a refill. I hear what you are thinking, maybe she's not maintaining, and you may be right. She is SO different than dd8 and so much harder for me to read it seems.

 

She seems to be better today (less chest pain and tummy aches) after increasing her probiotics (we didn't have much while on vacation). I'm thinking increasing her zith and the probiotics may be what she needs. I really don't think we will get a postiive strep test. But today we were getting behavior like refusing to walk in the middle of the street because she was pissed that her sister may h ave been able to do more at the checkout counter than her and falling down tantrum when I rushed her to cross the street. Then, holding my hand the rest of the day since she knew I was angry with her.

 

I do think increasing back to 250 daily is worth trying, even before trying the augmentin we have on stash.

 

Susan

Edited April 12, 2010 by Suzan

[T_Mom]

...entirely understand the abx hoarding...let me know if you need some