Humpty Dumpty fell off the wagon

[JAG10]

Hi Friends,

 

3 weeks ago, I left note dd7 had classic strep symptoms right before we were heading for a 10 day vacation. Although she swabbed negative, Dr. K managed to help me get both dd7 and PANDAS dd10 (10-11 wks post 1st IVIG at the time) on full strength Augmentin before we left for FL and then a 7 day Caribbean cruise. On the abx, dd7 improved in a couple days and I thought dd10 had dodged a bullet, but then the separation anxiety began which lasted two days and stopped. I thought, OK...that wasn't so bad, we jumped on it, no prob. By day 5, the OCD, behavioral regression, cognitive fog that makes my heart sink began and lasted through day 10 (by day 9, I was crying my eyes out and emailing Dr. K from the ship!) Day 11, dd10 was great again and then days 12-13 the same separation anxiety that started this episode ended it on the other side of this wave and we were done. This wave and crest of symptoms may sound familiar to many of you, but for us (we've been a chronic state of FUBAR for years) this was a new phenomena 12 weeks post IVIG. I would say dd10 lost a step of her progress as a result of this exposure, but is quickly back on the road to cognitive recovery this following week.

 

So, we get home last Sat., dd10 begins field hockey practice this week. Gets to see school friends she hasn't seen in awhile, wants to socialize, great! Wednesday, after her school's stationary sale, she asks if a classmate can come back to our house for the afternoon. Sure!! No sooner do we get back to our house, the two girls run out the door. I call dh to let him know we are home and I hear the wagon rolling down our street. I run out the door to yell STOP but before the words can leave my lips, the wagon flips over with both girls spilling onto the asphalt. I run out on the lawn yelling "Who thought that was a good idea?" as both girls pick themselves up, then I notice it; large drops of red blood pouring down Court's shirt. I look under her chin and there is no skin there!! Grab a towel, throw all three girls in the car and off to the ER we go. Turns out dd10 has a fractured wrist, several abrasions, the worst being under the chin, but there is no skin left to stitch. So, the rest of this week we have spent bouncing back and forth between ortho and the plastic surgeon. She will be fine, it is healing well and under her chin, so no scar would really show anyway, but I'm convinced this kid is ###### bent to get all the bad luck of a lifetime out before she's a teenager!!! She must have skidded her chin across the asphalt because her lips, mouth, teeth, ect. were fine. She has a loose primary tooth, but that was already in the works before she "Fell off the wagon" ( yes, I had to embarrass her by using that corny line at every opportunity!) {The other girl was completely fine, btw}

 

Also, Friday I took dd7 to ENT to be evaluated to have a T&A. He said her tonsils were large, but so what. So, then I go into the shpeal about her bringing strep home and getting big sis sick over again. He said that while he cannot recommend a T&A, he has respect for infectious experts in PANDAS and the ###### PANDAS families go through AND that he is willing to be the technician who removes them, but he can't "recommend" it. FINE. And he schedules her for two weeks from now. Am I crazy to do this? I really think it's just a matter of time anyway. Everyone in my family and my dh's family have their tonsils out-all of us. I was 21 when I got mine out, but I just kept getting pharyngitis.

 

So, I've spent more time talking to, visiting and emailing doctors in the past 6 months than the rest of my lifetime combined, and the last week being quite a doozy! This week I keep saying "cm'on Humpty Dumpty, time to go to the doctor again" just to try and keep a sense of humor! I'm an SLP in an elementary school and very ready to go back to work to get a break from my "vacation!"

Edited August 29, 2010 by JAG10

[momaine]

Hi Friends,

 

3 weeks ago, I left note dd7 had classic strep symptoms right before we were heading for a 10 day vacation. Although she swabbed negative, Dr. K managed to help me get both dd7 and PANDAS dd10 (10-11 wks post 1st IVIG at the time) on full strength Augmentin before we left for FL and then a 7 day Caribbean cruise. On the abx, dd7 improved in a couple days and I thought dd10 had dodged a bullet, but then the separation anxiety began which lasted two days and stopped. I thought, OK...that wasn't so bad, we jumped on it, no prob. By day 5, the OCD, behavioral regression, cognitive fog that makes my heart sink began and lasted through day 10 (by day 9, I was crying my eyes out and emailing Dr. K from the ship!) Day 11, dd10 was great again and then days 12-13 the same separation anxiety that started this episode ended it on the other side of this wave and we were done. This wave and crest of symptoms may sound familiar to many of you, but for us (we've been a chronic state of FUBAR for years) this was a new phenomena 12 weeks post IVIG. I would say dd10 lost a step of her progress as a result of this exposure, but is quickly back on the road to cognitive recovery this following week.

 

So, we get home last Sat., dd10 begins field hockey practice this week. Gets to see school friends she hasn't seen in awhile, wants to socialize, great! Wednesday, after her school's stationary sale, she asks if a classmate can come back to our house for the afternoon. Sure!! No sooner do we get back to our house, the two girls run out the door. I call dh to let him know we are home and I hear the wagon rolling down our street. I run out the door to yell STOP but before the words can leave my lips, the wagon flips over with both girls spilling onto the asphalt. I run out on the lawn yelling "Who thought that was a good idea?" as both girls pick themselves up, then I notice it; large drops of red blood pouring down Court's shirt. I look under her chin and there is no skin there!! Grab a towel, throw all three girls in the car and off to the ER we go. Turns out dd10 has a fractured wrist, several abrasions, the worst being under the chin, but there is no skin left to stitch. So, the rest of this week we have spent bouncing back and forth between ortho and the plastic surgeon. She will be fine, it is healing well and under her chin, so no scar would really show anyway, but I'm convinced this kid is ###### bent to get all the bad luck of a lifetime out before she's a teenager!!! She must have skidded her chin across the asphalt because her lips, mouth, teeth, ect. were fine. She has a loose primary tooth, but that was already in the works before she "Fell off the wagon" ( yes, I had to embarrass her by using that corny line at every opportunity!) {The other girl was completely fine, btw}

 

Also, Friday I took dd7 to ENT to be evaluated to have a T&A. He said her tonsils were large, but so what. So, then I go into the shpeal about her bringing strep home and getting big sis sick over again. He said that while he cannot recommend a T&A, he has respect for infectious experts in PANDAS and the ###### PANDAS families go through AND that he is willing to be the technician who removes them, but he can't "recommend" it. FINE. And he schedules her for two weeks from now. Am I crazy to do this? I really think it's just a matter of time anyway. Everyone in my family and my dh's family have their tonsils out-all of us. I was 21 when I got mine out, but I just kept getting pharyngitis.

 

So, I've spent more time talking to, visiting and emailing doctors in the past 6 months than the rest of my lifetime combined, and the last week being quite a doozy! This week I keep saying "cm'on Humpty Dumpty, time to go to the doctor again" just to try and keep a sense of humor! I'm an SLP in an elementary school and very ready to go back to work to get a break from my "vacation!"

Holy heck, what a week! Glad to know that dd rebounded. Hope she continues to make gains.

[thereishope]

So...you didn't have the best vacation?

 

I am so sorry this happened. I'm glad she is okay overall from tha fall. Did her PANDAS symptoms ramp up after that? As for the t and a, I can just give my opinion...and it's only an opinion. I'd wait to do that until you feel the majority of the resurfaced PANDAS symptoms are gone and gone for more than just a couple days. Not all, but some on here have experienced PANDAS symptoms post surgery and you don't want the perfect foundation there for that to happen. Have you discussed with Dr K about having a steroid burst readily available post surgery in the event anything happens?

[ajcire]

Sounds like a crazy week!

 

When I talked to my ENT about my ds I explained that I had no idea how many times he would have had positive cultures if he wasn't on antibiotics so much... and that he had several positive cultures prior to the antibiotics but that was just the ones I caught because he didn't have typical sore throat signs. He told me he had taken them out for way less a reason than that so he would do it for my son for the reason I gave... he since told me after my son went in for his that he has had a few other pandas kids comes in for it... and this time at least he knew what it was... He took his computer out and googled when I first brought my son in. My son's tonsils were small... but when he took them out he said they were small because they were a shriveled up infected mess....

Edited August 29, 2010 by ajcire

[mkur]

I have 2 boys so I can relate - lots of excitement. Sorry to hear you need a vacation from your vacation. I tried & tried to get my panda ds's t&a out but it didn't happen.

 

I would like to reiterate something that was posted earlier - put the child on abx a couple of days before the surgery. I know someone who developed tourette's syndrome after t&a surgery. This boy developed severe tics and OCD. His mother thinks he might be a panda. Knowing this, I would still try to get my ds's t&a out.

 

Good luck

[thereishope]

If your friend's child developed tics and OCD or it worsened post surgery, definitely have them look into PANDAS!

 

 

I would like to reiterate something that was posted earlier - put the child on abx a couple of days before the surgery. I know someone who developed tourette's syndrome after t&a surgery. This boy developed severe tics and OCD. His mother thinks he might be a panda. Knowing this, I would still try to get my ds's t&a out.

 

Good luck

[JAG10]

I should clarify my PANDAS dd10 has her tonsils out already. It is her non-PANDAS little sister who has the big tonsils and the constant sore throats. It was suggested that the younger ones will need to come out eventually and since there is a PANDAS sibling living in the same room with her, sooner would be better than later.

 

The vacation had its low points and high lights. A low point being dd10 was so out of it, she put her shorts on with no underwear and her shirt was on backwards and she was absolutely clueless she was walking around the ship like that. But by the time it was our last night on the boat, dd10 was getting back to her baseline and running around the ship with friends she had made. It was those days of not knowing...are we on a downward spiral with no end to it or will the Augmentin do its job and smack down that immune system back into place. It did its job, but in the meantime the parental anxiety is torturous.

 

The wagon incident is normal kid stuff that just seems like too much when you add it on top of all the other stuff we manage with our kids.

[Fixit]

of couse it panda-ora's

[mkur]

I should clarify my PANDAS dd10 has her tonsils out already. It is her non-PANDAS little sister who has the big tonsils and the constant sore throats. It was suggested that the younger ones will need to come out eventually and since there is a PANDAS sibling living in the same room with her, sooner would be better than later.

 

I understood. I made sure that my younger son's t&a were removed because of panda older brother. Their ped helped. Younger brother had speech problems & ear infections and this was given as reason for t&a. My panda ds's ptt was too high so the operation was canceled, and later when panda ds was having major problems I could not find a ENT (and I begged) to do the operation because the NIH does not recommend removing tonsils.

[ajcire]

Oops.. I missed that you were talking about your non pandas dd with the tonsils. Yeah, my non pandas kid had hers out before my pandas kid but it was easy because she had strep sooo many times within a short period of time that she met the criteria for it.

Edited August 29, 2010 by ajcire

[thereishope]

I missed which daughter it was too. Sorry! My 2 non-PANDAS kids still have their tonsils and I don't plan on removing them unless strep becomes a problem with them. They've each had strep once. But, I fully understand why you'd consider doing it. Do what you think is best. The younger they are when they have them removed, they are suppose to heal faster. Good luck with the surgery!

[Megs_Mom]

Oh, I so related to this! I am so sorry it made the vacation so rough. We had our first normal vacation in 2 years, and every single night, my husband and I would look at each other in amazement. Our memories of vacations are of screaming panic attacks, a drive home for 8 hours where she would not eat anything, and wept and raged. By the time we got home, I needed Valium. It was the worst vacation I could ever imagine.

 

Now that we are on abx, we find that attacks (so far, please let it last) only last about 5-7 days. 3 days of ramp up, give her treatment, 3 days of ramp down, and done. Nothing ever got up above a 4, between ERP tools and ABX (and Motrin!!!) You can ask my best friend, I had panic attacks myself the first 3 times - now it seems like a manageable thing.

 

I still hope for 100%, but the place we are now, is so "ok" and full of joy on 98% of the days - after such darkness, that I can't really complain.

[saidie10]

What at week!!! Surely you are at the bottom of the hill and can start to go up already and have some good times ahead!!

 

As for the T&A, I personally would do it and would remove my younger son's if a doc would do it. He has had strep twice this year and scored 179 on Cunningham's Test. I know the next strep infection will set him off again and it could be a longer recovery. Older PANDAS DS had T&A after last known strep infection in July of 2009 and has not "caught" strep again but does continue to have elevated titers, but it is clear that removing his tonsils helped!

[P_Mom]

I am just wondering if their could be any correlation between CamK and tonsils/removal?

 

Anybody have any insight? Who has had tonsil removal and had Cam K drawn atleast a year after surgery? Results? What about the ones with tonsils? Are they higher?

 

This could be just a shot in the dark....have no reason to think this other than my two PANDAS sons...

 

the one with t&A had Cam K of 112...

 

the younger with tonsils intact....162.

 

Just curious. It could give some people on the fence about t&a good reason to do it if there seems to be a trend. But, if t&a was done close to Cunningham test....I don't think that would be a good indicator. My older son had his Cam K drawn 2 years after t&a.