Progress seems to be waning...

[airial95]

Well, his surgery was on the 16th of November, so we had almost a month of repreive - which I'm thankful for!!!

 

After the first week - we saw one tic creep back up. But things were still wonderfully amazing!!!

 

On Saturday - we had a seemingly isolated OCD incident - wanting 4 donuts (donuts are a trigger, as is the number 4) - when I wouldn't give him 4 - meltdown like the old days - drooling, kicking screaming - the whole shabang. I took him to his "special chair" (sensory swing) and he stayed in there for about a half hour. When he came out, he was still crying and he came up to me and said "Mommy - I liked it better when my brain wasn't angry anymore." Broke my heart. But he seemed to be fine the rest of the day - if a bit hyper (but he had friends coming over that night so he was very excited.)

 

Sunday was good - with no real issues.

 

Monday - I started noticing some rigidity coming back in, he wanted to get his seat belts on/off before his siter, upset if he didn't, etc. I thought "uh-oh" but was still hopeful.

 

Yesterday confirmed my fears - incresed rigidity, and meltdowns wanting to "start over" when something doesn't go right. I ended up having to give him motrin after about a 2 hour series of fits. Worked beautifully - better than it has before.

 

Today I'm seeing more of the same, and worse. We had to run to the mall to pick up their X-mas portraits and he had to keep stopping (seemingly randomly) to touch grout on the tiles. I asked why - "so I can make sure they're safe for walking".

 

Dr. M gave us a 10 day refill of his abx (Augmentin suspension) to take to Buffalo for X-mas, his current rx will run out this week.

 

I made an appointment for our pediatrician for Monday to see if he'll extend us further - and possibly take us back to full dose (we've been on half for the last 3 weeks). We're also going to have his sister re-checked for strep - she's always asymptomatic, and eventhough she just got her tonsils out too - it wouldn't surprise me if she was the culprit.

 

He could've gotten me in tomorrow AM but I wanted to wait through the weekend to get my husbands opinion on his backslide - see if I'm over reacting (I'm sure I'm not). He's been out of town for 2 weeks, so I'd like to get his thoughts - I also wanted to have a few more days of data to discuss too.

 

Please keep sending us your warm thoughts, prayers and vibes - we need it!!!

[Ozimum]

I so feel for you and your boy. If it was me I'd be taking the earliest appointment I could get and I'd want him on a higher dose asap. You are not imagining this and imho it's better to not wait.

[MomtoJake]

Just letting you know that I am sending those thoughts and prayers your way!! I have only been at this for 3 months and even now I know the sinking feeling when things start going south.

[Alex]

My son is 3 months post T & A and so far we have been very pleased with his progress. It hasn't been a straight path of improvement though, including a pretty big setback when we cut his antibiotics in half. Back on full strength he made a quick turnaround and is doing really well. Maybe the same will hold true for your son.

 

Are you tracking his ASO and Anti DNase-B since surgery? We plan to do it every month for a year. So far the levels are down but not dramatically.

 

Our thoughts and best wishes with your son. Alex

Edited December 16, 2011 by Alex

[airial95]

Thanks for the support!

 

Alex, we are going Monday to get the abx increased again. After yesterday's behavior - I'm a bit miffed I didn't take the appt yesterday morning!!

 

As for his titres - we are not monitoring them regularly - he has never had an elevated titre, even with a positive throat culture, so we didn't think it made much sense to keep poking him!

 

I'll keep you posted if the increased dosaage helps!!

[Megs_Mom]

Hey - did you have a very high dose of abx around surgery (sorry, am behind on story!!) We saw a beautiful 3 weeks after surgery, and then a fall, and when discussing with Dr. L, she noted the high dose prior to surgery & then the full strenght prescription afterwards for a week. That seemed to keep us incredibly happy for a few weeks until it wore off (Azithromyacin). It's one of the things that moved us to a higher dose vs a preventative dose.

 

BTW, you are the most amazing mom. You have been so strong during everything that has happened. But sometimes that strength in all of us warrior moms, can make us doubt when things start to fall off the cliff. I always worry that I am being dramatic, especially when I know how bad it can get. So feel free to move into panic mom mode - we all do from time to time & use any tool you need (including begging, pleading, yelling, crying) to get him back what he needs.

 

That comment "mommy, I like it better when my brain is not angry" - wow, that just breaks my heart.

[airial95]

Thanks for the kind words!

 

They did do high dose abx during the surgery and for a week after - then we dropped the dose in half. I agree that it was likely the abx that caused the improvement (augmentin).

 

We are very fortunate to have a great PANDAS friendly pediatrician who is pretty good about giving us abx when we need it.

 

We decided to up his dosage our selves this weekend to see how he would react - we're already seeing a difference.