What's in store for us?

[airial95]

I've been reading on here for a couple of weeks now, and even posted a couple of questions and was so appreciative of all of the support and feedback (thank you all!!) But my husband and I are still trying to figure out what's in store for us!

 

Based on all of the stories I've read here, we seem to be very lucky that we were caught quickly by our pediatrician who is by no means a PANDAS expert but seems to be pretty up to speed on the symptoms and treatments.

 

He diagnosed our 2 year old with potential PANDAS with nothing but our description (and his and his staff's own observations over the preceeding months - one of the benefits of a small family practice!) about 6 months after the sudden onset (9 months after a strep infection). The throat culture came back negative, but he didn't seem to think that much of an issue. First course of Azith. (15 days) showed significant improvements - by the end we got a glimpse of the same little boy we had before the onset. He was off for 4 days, and then the dr restarted. He's been back on only 5 days now and is showing mild improvement (not to the level of the first round, but we didn't see anything significant until day 6 or so, with our best results around day 13-14)

 

Dr. has already warned us that he may be on the abx for an extended period of time (which we also learned here too!)

 

The one thing that I haven't been able to gather from reading this forum (or the dr really) is will I ever have my little boy back? I know that he'll likely have recurrances when exposed to strep, but will he get better in between? From what I read on here it seems like there is always some lingering symptoms. We've seen glimpses of my man on the abx and are hopeful.

 

This morning he had a rough spell during drop-off/breakfast at day care. That's usually his worst time with the compulsions/meltdowns. He started off pretty good - maybe a 4-5 on Buster's scale (which is great! I have day care using it to track his symptoms too!) for his usual compulsions. He even responded well when he saw his muffin was a bit broken (a big trigger for us if it's not "just right") saying it was okay they're still "tasty". But after he got his milk and looked at the muffin again, it triggered our meltdown - not the worst he's had, maybe a 7 or so - but in the middle of the screams of "NO" with the offending muffin in his hand, tears streaming down his little face he looked over at me and said "Mommy, I want to feel better, I want to feel better".

 

It broke my heart! I just want to know will he get better!!!

[thereishope]

Yes, you will get your son back.

 

As he heals, you will see bumps in the road with bad moments mixed in with the good. The important thing is to not be in denial when you see it all come flooding back without reprieve. You may think you won't be in denial, but part is human instinct to feel that way. You know once you are told it is strep agian what you are in for and it's hard to mentally prepare for that. But the quicker you catch it (IF he ever catches strep again) the better off he, and you, will be.

 

My son has had 3 strep triggered exacerbations. I got him back each time. It was hard and we went through a lot, but I got him back. He does have slight setbacks with other triggers but nothing at all compared to strep.

[airial95]

Thanks for the encouranging words! This morning was a relatively "good" morning by comparison - but looking at his little face when he said he wanted to get better just pushed me over the edge.

 

My hubby tried to remind me that he's only two, probably only has a limited grasp on what's happening and his words most likely didn't have the meaning I'm attributing to them. But still - it was heartbreaking.

 

I'm sure you're right about the denial, but I would hope we'd be proactive there too. Immediately after his onset we were always making excuses to explain his behavior - he's bored in his classroom (he's always tested developmentally ahead of his peers), he's tired, he's not feeling well, his routine is off, etc...

 

Hopefully now that we know what the problem is, we won't fall into that trap again.

 

Thanks again for the encouragement - I needed it today!

[thereishope]

Even now when my son does something that freaks me out, I turn to my husband with the look of "does he need to go to the doctor". But my hubby reminds me that he's only 6 and he will misbehave. I've tried to remind myself more than once that if he behaved perfect all the time, then I should be worried about that too.

 

 

How long has it been since you started abx for strep?

[airial95]

Did our first run (15 days) from Jan 27 through Feb 8. The Dr wanted to see him back before he renewed, so he was off for 3 1/2 days before he started up again on the 12th. (Dr just wanted to make sure he wasn't having any adverse effects to the abx - didn't have an issue with keeping him on for an extended period like I had originally feared)

 

He just started his second 5 day run. We noticed an almost immediate backslide when he went off, but a slow prodding improvement now that he's back on (similar to the first time).

 

The Dr. wants to see him back after every 2 5-day courses, just to keep an eye on him. He's on 50 mg Azith total per day - nothing as high as I've seen on these forums. I've attributed that to the fact that he's 2 and only 27 pounds. It seems to be working at this dose - although like any parent not as quickly as we'd like.

 

We're happy with our dr's approach so far - he still hasn't ordered any blood work or tests - just the abx and a see what happens!

[colleenrn]

arial95,

 

Is the Zithromax given prophylactically or did he recently have strep? If he recently did have strep, was he only on 50mg of Zithromax? The reason I am asking is that for 27 lb., the treatment dose would be 147mg (which you would just give 150mg).

Do you do 5 days on, 5 days off?

 

Colleen

[airial95]

I messed up, I meant to say hes on 50 mg 2x a day - for 100 mg daily total. Sorry!

 

We're not doing any time off right now, it's constant for the time being (other than the short break last week). And when he was first diagnosed, there was no known exposure at the time and a negative throat culture. His last known exposure was impetigo last summer about 2-3 months before the sudden onset of symptoms. We were notified by day care of a confirmed case of strep in both my son and daughter's classes on Monday afternoon, but by this time he was back on the abx for 4 days. His improvement this time around seems slower, but is still noticeable. We're thinking it may be slower bacause of his recent exposure.

 

On his first round of abx it was day 5 or 6 before we noticed any improvement at all. It's day 5 this time around and we're already noticing some changes.

[airial95]

UGGHHHH!! Had a horribly rough night. The teachers said he had an okay day at school as far as aggression/raging but was very cranky all day. Had a couple of potty related meltdowns and an episode at snack time - something wasn't "just right" with his snack and they never could figure it out.

 

On the way home he kept worrying that "we're gonna crash" (new symptom for us!) and he was just off his rocker all night. Ate dinner well, but then kept saying he was still hungry just before bed, but all of his normal snacks that we offered didn't taste right.

 

I'm trusting you all when you say this gets better!!! This is the worst evening we've had since we started the abx!

[dcmom]

I am thinking your child has ocd/ behavoir issues and not tics?

 

After 30 days on antibiotics, if you do not see enough improvement, I would ask for a steroid burst.

[thereishope]

I don't know much about Zith dosing. Do you or anyone know if that's a prophylactic dose she mentioned or what a doc would give for an infection.

 

He will get better, but this is also an unforgiving disorder. You have to fight PANDAS to get your child back. My son had back to back strep infections. You sit there in disbelief that they can sick again so fast.That made his symptoms from the second exacerbation rather bad and he needed a steroid to jump start recovery. His "setbacks" during recovery were different than when it all came slamming back due to another infection. I'm not saying your child still has strep or has another infection but if he is sliding backwards fast or after a couple days not improving, call your doctor about increasing the meds, or consider asking for a steroid burst as suggested by dcmom.

 

Now, my son did have big setbacks that lasted a couple days during recovery and then snapped out of it, but those were different than his trademark, beginning of a strep infection, meltdowns. A lot of it is following your gut and knowing your child.

[peglem]

My daughter was on a lower "prophylactic" dose of zith for over a year- so I didn't think the behavior problems were still due to strep...but she tested positive for strep last september....We got very aggressive with abx...and finally, this last 6 weeks, things have gotten soooo much better. Wish I'd done this 2 years ago!

 

First of all, I'm wondering why the zith dosage is split into 2x/day? The way zith works- its taken up into the tissues and has a long half life- I see no advantage to giving it twice/day instead of all at once. I also think you'd see better results if you gave him a "loading dose" (usually double the daily dose for the 1st day) and then maintained the tissue concentrations with the regular daily dose. I don't know what the therapeutic dose vs. the prophylactic dose is for your child's weight, but I'd stay therapeutic until he improves and stabilizes, then try going down to a prophylactic dosage. Just my $ 0.02.

[airial95]

Unfortunately we don't know the differnce in dosage either - we're newbies! We're taking him back into the Dr. on Monday for his follow up. Last time around he didn't have much improvement until day 5 or 6. Yesterday was day 6 - and it was our worst day since we started the abx. He had a pretty good morning today though so we'll see. I forgot to mention, he's also had us putting Altabax in the nostrils to attack any strep that may be in the mucus membranes that wouldn't respond to the abx. I haven't seen anyone else mention that.

 

The teachers noticed yesterday that he wasn't aggressive at all, but seemed like he wasn't feeling well and he had 3 bouts of diarrea (which is unusual for him, even on the abx). Our 3 year old was in a cranky mood too, and he loves to take cues from his big sister (monkey see monkey do)

 

If we don't see the type of improvement we saw last time by Monday, we'll probably ask the Dr for a higher dose.

 

Anyone know what dose we should be asking for for a little guy?

[dcmom]

airial- When my daughter had her first episode of pandas- it took 30 days on full strength zith to really see an improvement. For her, it wasn't really gradual either- it was more like: first week and immediate stop of the downward spiral that she had been on- stabilization, week 2 and 3 almost no improvement, week four rapidly progressed to about a 95% improvement.

 

Don't give up on the antibiotics.

I think you can look on the zithromax website for dosing. My daughter does a daily treatment dose (something a girl her age would be on for 5-10 days for strep).

 

Once you get him better, NO immune challenges for a while. Be careful with vaccines, dental work, and exposure to illness.

[thereishope]

Did you see colleen's response about dosing.....

 

 

arial95,

 

Is the Zithromax given prophylactically or did he recently have strep? If he recently did have strep, was he only on 50mg of Zithromax? The reason I am asking is that for 27 lb., the treatment dose would be 147mg (which you would just give 150mg).

Do you do 5 days on, 5 days off?

 

Colleen

[airial95]

Wow! What a turn around today! Today was the first day that they used the new behavior log we gave them (based on Buster's system) and it was very insightful. The teachers told us he had a really good day - but when we looked at his charting, we saw that they had him up in the 6's on some spatial issues, social anxieties and repetitive behaviors but way down on his most agressive behaviors.

 

Is it sad that I'm actually excited to be able to chart his progress/setbacks now?

 

When we got home, he ate real well and played all night with his sister before one of the easiest bedtimes I can remember! Spoke to the Dr today and rather than see him Monday he renewed his abx through next Fri and will see him then unless there's a major change/setback.

 

Keep your fingers crossed that we keep improving!!!