I think it might be back.....

[bgbarnes]

Behavior is going down a bad spiral- pretty out of control yesterday-vacillated between wanting to be touched and not. Defiant, argumentative, loud, repetitive in his words, easily in tears, highly emotional over the littlest thing, meltdown over homework....let him sleep in- he said he body hurt all over this am....let him rest- he stayed with maid and I went to work...Came home early after noon- had a low grade fever- had a major meltdown over homework- refused to do his spelling, before I put him to bed early- yes I changed his alarm clock to trick him.....told me 27 times no about something- what escapes me at this point b/c I was keeping track of how many times he said it. Then he said that he could not go to sleep without reading the other books at least 10.....I think if I hear there is not point one more time I am going to scream today....Got him in an Epsom salt bath and calmed him down....Snuggled him and I think he is probably asleep now. Looks like I am antibiotic shopping tomorrow.

I want to cry and scream right now

Brandy

[peglem]

So, is he on an abx right now? Sorry, sorry, sorry....relapse is the pits!

[mama2alex]

I'm so sorry! My son relapsed last week 5 months post IVIG. We upped his Azithromycin to 500mg per day immediately (he's 65 lbs). Took him to the ped, but she is not fully on board and discouraged us from a throat culture. I was tired and caved, but regret it now as he was saying his throat was a little sore. She didn't see redness though, and he's never had a postive throat culture, and she still doesn't fully get it. Symptoms have waned significantly over a week on higher antibiotics. Checked in with Dr. K and he said to run ASO and anti-DNase B "NOW!" We ran titers yesterday and are waiting for results. Depending on what Dr. K says, we will consider another IVIG.

 

I guess my main point is, jump on this, don't wait!

 

So, is he on an abx right now? Sorry, sorry, sorry....relapse is the pits!

[bgbarnes]

Since the Dr's office FORGOT to run his titers when we were in there the first time....maybe this is a good time to check....we are not on antibiotic- Dr was waiting to see Cunninghams test- but oh yea- they did not send it for a month! I am too new to this and have not graduated to in your face with the Dr Mom yet.....So I am going to start with a phone call to immunologist first for a script.

 

I have SOOOOOOOOOOOO much to do at work right now- I have to get an entire office ready to move by the 28th....how the Heck am I going to do that when I can't get a full day in the office?

BRandy

[thereishope]

I am so sorry. It's such a horrible feeling to see that explosion and know it's back. Yes, you need an antibiotic, but you know that. If he can take Ibuprofen, give that now too. Hopefully, it will ease things...even a bit.

[bgbarnes]

I got it- the immunologist who FORGOT to do 1/2 the blood work called it in- I asked for Omnicef because he did REALLY well on it last time. 500 gm a day and he is about 70 lbs.....He is still running about a 99 fever which may not sound like much but he NEVER RUNS fever and generally runs about 96.8-97. He had a great day at school and has been fine at home but I am not taking any chances....

I did get the pediatrician to write a note for the school saying that he suspected PANDAS-sent it off to the B***H principal. Who when I told her ds was home yesterday responded with hmmm of course....It makes me mad- it is my right as as parent to decide to hold my kid back and she is making me jump through hoops- I have resented her taking my attention off of getting my son well- and I don't like her and she is violating my civil rights.

I decided to hold my ds back because he is so young and missed so much school. He has such anxiety over writing/spelling (last night the real meltdown was about absolutely refusing to spell his words before his quiz today) and 3rd grade is writing intensive- I want to take a year to figure this PANDAS thing out- if we have to leave town for IVIG- I don't want to worry about school. IF he is exacerbated i won't send him to school- no one wins and I just think we need time to beat thins thing and heal.... DS is academically gifted in most areas and the school is REALLY resisting it- But he is also one of the youngest in the class and in our school district almost everyone holds back summer birthdays- so kids are a year older than my ds.

Keeping my fingers crossed we caught it fast enough!

Brandy