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Hello, I have a dd5, whom I highly suspect is PANDAS. I have ordered the Cunningham test, am working w/ a DAN! Dr.

I'll spare you all the details, but her background fits- OCD episodes to the max. Wax and wane with it. Obsessive thoughts have ruled her at times- to the point of non functioning. Clothing OCD- unbelievable. Never had an autism DX, but had a Sensory Processing dx (10 months of OT) and a 'social phobia' dx- started bio-med (diet, supplements) about 1 1/2 years ago. Vocal tics come and go.

We are on day 4 of Omnicef, 300 mg, 1x a day. I am taking copious notes.

Advil makes a difference to this child. I know she has inflammation- we did Enhansa before (curcumin) it was our biggest 'wow' also pulled a virus out of her body with it(month long rash)we went off it after that---

I'm impatient. I'm worn out.

She holds it together well in 1/2 day Kindergarten (but perfectionism, will cry if she feels even slightly critized) Home, she has some very wicked spells(anger, lashing out, calling names, hitting, spitting)

I am giving probiotics 2x a day, and Diflucan for yeast 1x a day (she is a yeasty girl to begin with)

I am thinking of keeping on this Omnicef for 20 days (I have studied, and read 20 days test is warranted for antibx to really 'see') and then ask for Azyth.

Can anybody give me any feedback?

It's a long road, right? I'm trying to figure out if it is indeed PANDAS, or just OCD. Strep titers pulled last Spring, of course, not high. I know 50% are in the normal range.

I'd love anything anyone has to say. I've been reading and reading and reading.

Thanks for being here.

 

Sarah

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She sounds similar to my DS7, who was 5.5 at first episode. Diagnosed a year later, in Oct 10. His titers are normal. I am very familiar w/ the hitting, spitting, name calling. It was his worst symptom, along w/ separation anxiety. I could take the ocd's, weird talk, sensory issues (diagnosed spd in June 10), inability to make a decision, age regression. When the tics started, we really got ourselves in gear and got him diagnosed, after going from dr to dr trying to figure out what was wrong w/ him.

 

He started biaxin in mid Oct and took it for 60 days. At 20 days, he was about 50% better. At 60 days, he was nearly back to himself. Currently, he's holding his own on zithro 2x weekly.(knock on wood)

 

I'd give abx more time than 20 days, but that's just my experience. There are others around here who have tons more experience than me.

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i agree with trying abx's for at least 30 days...some say longer before they saw response and longer to complete healing...

also make sure dose is high enough...

 

ie..250 azith is dose a doc would give...(and typical doses used to work for him in the past)

but i believe at this i see more at 500

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Hi, your dd sounds alot, and I mean A LOT like my dd age 7. Sensory issues, ocd, hitting, name calling, spitting, can't make decisions, but somehow holds it all together at school.....but seperation anxiety is huge so it's hard to get her to school......etc....

It's taken us a really long time to get to this point, but we finally found a local doc that called it pandas and put her on kelflex twice a day.....huge improvements! We tried Omnicef for 2 months and didn't get any results....if there were any results they were very minimal. Within 4 days of Kelflex.....huge results. Keep trying, it sounds like your on the right path. :)

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Omnicef was our first abx, worked well but took about 10 days to start seeing results. Lost effectiveness after about 2 mos but I think it was because we were new, experimenting (with the pediatrician) and weaned her down an few times. Augmentin XR is working best for her now (couldn't tolerate zith stomach aches.

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My ds 8 has SPD, anxiety,unsocial,speech delay, GI problems but like you does not meet criteria for autism. Did the whole DAN thing for 14mts with little improvement and failure to gain weight so we stopped. Anyway, developed 1st PANDAS episode over a year ago, finally got diagnosed after 2nd episode this past summer. 1st did 5day dose of steroid, saw huge improvement (80%) after day 5, then did amoxicillin for a month until I found a PANDAS DR who switched to keflex 250 x2/day (last Aug) and now he's 100% better just dropped him to keflex 250 x3/week prophylaxis, so far, so good. Hope this helps.

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Welcome.

 

When we were exploring the possiblity of PANDAS last year, we started with a 14 day dose of Omnicef. My dd7 started showing some improvement around day 11. The improvement went away about a week after stopping.

 

A month later we had our Cunningham results back in the high PANDAS range. That gave us ammunition to go back to the doctor and get more treatment. He put her on a treatment dose of Zithromax for 5 days, then a prophylactic dose until we could see a specialist (Dr. Bouboulis in CT) a couple of months later. She improved a lot on the Zithro - to about 80% by the time we saw Dr. B. Dr. B thought she was undermedicated, so he increased her back to a treatment dose for one month. That got her to 90%. He then put her back on a prophylactic dose. She got close to 100% until recently with exposure to strep. We are battling an exacerbatin now, but it's nothing like it was last year. Still, we are desparately trying to get her back on track.

 

Our daughter is now 8. Her issues are similar to your childs. Primarily OCD - germ contamination fears. Clothing - either because she thinks it's "dirty/contaminated" or because it doesn't "feel" right has always been a huge issue. She also has emotional swings. Last year her rages were very intense. ADHD like behavior is another big symtpom for her.

 

My understanding is that Omnicef works differently than Zithromax. Whereas Omnicef is supposed to be good at eradicating strep, I think it primarily works "extracellularly." So if the infection has gone "intracellular" you may need an antibiotic (like Zithromax) that goes intracellular as well.

 

Take a look at the FAQ. If you look at the top of the forum, you will see a discussion entitled "Helfpul Threads." In that discussion you will find another post with the FAQ. There is discussion about the different types of antibiotics in that FAQ. There are links to a lot of other good posts in the Helpful Thread section as well. It's a good place to spend some time.

 

AGain, welcome and good luck.

Kara

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Welcome - sorry you had to find us, but it sounds like you're on the right track.

 

I would agree with what others have posted here, try abx for at least 30 days. We started with Azith, and after 10 days saw the violence completely disappear, and after 14, the tantrums were "manageable" (a relative term to PANDAS parents). It took us about 3 months on full dose azith to get about 50% improvement, and then we stepped down the dosage for 5 months. At the end of that, we were at about 75-80% better, and switched to Omnicef (he caught strep 2x on the prophylatic azith, so the Dr's switched him). On the omnicef, I think we stalled, we got up to about 85% but that was it, and the progress was different for us than on the azith. The intensity/duration of episodes were far less on the Omnicef vs. the Azith, but the frequency increased significantly. So it was a toss up - would you rather have worse episodes farther apart, or more frequent but less severe outbursts.

 

From what I know, different abx work differently for different children. Some folks have great success with Omnicef, others don't see any improvement. Same goes for Azith, Augmentin and all of the others.

 

If after 30 days of the Omnicef you don't see any improvement, don't rule out trying another type!

 

Oh- and I'll add - take detailed notes!!! Having a log to track the severity/frequency of symptoms is extremely helpful. We have the teachers at school log issues as well. (We use a number sacle 0 being the best 9 being the worst to rate all of his individual behaviors). It helped us really quantify what was working/not working.

Edited by airial95
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Hi there,

 

The only thing I would add if it wasn't mentioned here already is checking for mycoplasma pneumonia. Omnicef is very good for strep but not myco p. zithromax or biaxin would be the choices for myco p. It is a blood test IGM and IGG.

 

If you have a good Dan! doctor, stick with them. I think it is hard to find a good one. There is alot written about how DAN! doctors are now looking at PANDAS and PITAND as the new autism or looking at it when children don't respond to the autism protocol.

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Thanks- I'm working w/ Dr. Jerry Kartzinel- I'm in North. CA he is in So. CA--

We've been working together for just 2 months- I really, really like him- he says a percentage of his patients are PANDAS, and he communicates with 'highly respected/informed' PANDAS Dr.'s. We just reached the conclusion of very possible PANDAS 2 weeks ago, after much, much studying by me, and pages of notes. Hence, the trial of Omnicef. I am waiting for the Cunningham test to be sent to me...

Have not done a IgM on my dd5- have an older panel of IgG subclasses--

I have been trying to figure out this girl for years ;-) What a ride.

I will bring up the Myco. Pneum. test up to him when we talk again in a few weeks--thank you--

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Hello, I have a dd5, whom I highly suspect is PANDAS. I have ordered the Cunningham test, am working w/ a DAN! Dr.

I'll spare you all the details, but her background fits- OCD episodes to the max. Wax and wane with it. Obsessive thoughts have ruled her at times- to the point of non functioning. Clothing OCD- unbelievable. Never had an autism DX, but had a Sensory Processing dx (10 months of OT) and a 'social phobia' dx- started bio-med (diet, supplements) about 1 1/2 years ago. Vocal tics come and go.

We are on day 4 of Omnicef, 300 mg, 1x a day. I am taking copious notes.

Advil makes a difference to this child. I know she has inflammation- we did Enhansa before (curcumin) it was our biggest 'wow' also pulled a virus out of her body with it(month long rash)we went off it after that---

I'm impatient. I'm worn out.

She holds it together well in 1/2 day Kindergarten (but perfectionism, will cry if she feels even slightly critized) Home, she has some very wicked spells(anger, lashing out, calling names, hitting, spitting)

I am giving probiotics 2x a day, and Diflucan for yeast 1x a day (she is a yeasty girl to begin with)

I am thinking of keeping on this Omnicef for 20 days (I have studied, and read 20 days test is warranted for antibx to really 'see') and then ask for Azyth.

Can anybody give me any feedback?

It's a long road, right? I'm trying to figure out if it is indeed PANDAS, or just OCD. Strep titers pulled last Spring, of course, not high. I know 50% are in the normal range.

I'd love anything anyone has to say. I've been reading and reading and reading.

Thanks for being here.

 

Sarah

For my daughter's 2nd PANDAS exacerbation, she took Omnicef. It was 150mg 2x/day. The ped who originally prescribed it said that for strep, she felt breaking it up into 2 doses was better...just throwing that out there. I know how difficult it can be to get the probiotics in if antibiotics are needed 2x/day.

 

She is currently on 150mg once a day, and will be on that indefinitely to prevent strep.

 

I am curious about the enhansa. Is this a supplement that you cannot take continuously?

 

Does anyone else have experience with a different brand of curcurmin?

Edited by Kayanne
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Welcome to the forum!I didn't read all responses so forgive me if I'm repeating things. Have you seen any improvements in that 4 days of Omnicef yet? It does have to be a miraculous turn around, but any improvement?It is a long road with setbacks here and there. You are right to take notes and chart her progress. Here's a charting system some like to use Buster's Charting System

http://www.latitudes.org/forums/index.php?showtopic=6685&hl=

 

I am not familiar with the dosing of Omnicef and what the half life is. Should it be taken only once a day?

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This is exactly what I was thinking about- that I should break up the Omnicef into 2x a day, 150 mg each, instead of 1x a day, 300 mg. I am going to try that tomorrow. I looked the 1/2 life up, I believe it said 12 hours--so yeah. I am dying to try the Zithro., patience is not my long suit. It's in the afternoon (after 1/2 day K) she is WILD/aggressive. Quiet and follows through at school. Loses it when I pick her up. Not every day- but a lot.

I am seeing some things (just day 5 now) subtle- yesterday, no longer had to wear 2-3 shirts at one time- she just put 1 on, I about fell over. I am recording some 'nice' hours--- nicer to younger sister. Not coming into our bed last 2 nights. Says 'I'm tired' throughout the day more than I've heard...but getting good nights sleep (I also use melatonin)

About the Enhansa- (I had been thinking for the last year + all her behaviors/issues were do to a leaky gut/vaccinations- which she had/probably still has, we are GFCFSF, she eats well now, proteins)

so I tried Enhansa because I was looking for more healing- it reduced her inflammation- much better/regular bowel movements, she seemed more cognitive, talking more (she has no speech issues)- then at full dose, I added a push of vitamin C, and bumps looking like chicken pox appeared (not scratchy tho, none on face) but moved down her body for 3-4 weeks-

It is a high phenol content (curcumin) and that made her hyper- yeah, couldn't deal with more hyper---and after the rash was through, I pulled her off of it---

By the way, not everyone has 'phenol' problems- I tried to combat the phenol with a No Phenol enzyme tablet, still, too hyper.

Sarah

Edited by S & S
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