Almost-3-yr-old now being treated too

[pixiesmommy]

Our almost 3 yr old daughter was seen today by Dr K and we have started a 14 day course of Augmentin for her and ran titers. She had overnight onset about a week ago (same time I got some sinus/headcold thing) and Pixie's behaviors began ramping up a little as well.

 

OCD about things

Fear of pattered things

Fear of leaving house

Change in likes/dislikes

Tantrumming for hours on end (never had "terrible twos" here- totally laid back and happy kid)

Night terrors

Misc. fear of "everything" and everyone

Sensory issues to the max! (sounds, textures, tags in clothes.... ugh)

Refusal of hygiene things (hand-washing, teeth-brushing, changing clothes)

list goes on....

*Told me she could not sleep last night b/c of the voices in her head!!!

 

All in the past week. As some of you know, Pixie was NOT overnight onset, so this is new to me. But so many similarities too in the behaviors and so many of them that Pixie does not have anymore so they can't have been mimicked.

 

Dr K worked her in today before he left town and is not doing a steroid course with her, but did the bloodwork and a trial of the Augmentin and then we see him again in 2 weeks to follow up. He thinks we can probably keep her under control with abx alone, which is great news. I really don't want to do IVIG again (at least hdIVIG) unless we are really in dire straits- especially with her being so young!!

 

We're heading down the path of investigating Lyme for all of us too, but in the meantime, we can hopefully bridge the gap and Dr K will continue the abx for her as we need them.

 

On another note, she was quite a bit better today than she has been in the past week, and I have been puzzling over why this may be, since we only started the abx later this evening. We did our very first dose EVER of strep nosode last night for the entire family AND she had cranial sacral work done by the chiro. I don't know if it was just a fluke, a combo of those things or just one of them, but thought I would mention (and document for myself) those things to take into account.

 

 

SIGHHHH!!! What the heck will tomorrow bring!?

[thereishope]

I'm so sorry! Along with you, let's be hopeful it was caught quick and be able to be controlled. Can you give her Ibuprofen or a natural anti inflammatory?

[Kayanne]

I'm so sorry! I know you have been through so much already! I am hoping that the knowledge and resources you have gained in order to help Pixie will now be able to help your 3 yr old get better quickly and fully!!

 

I'll keep you in my prayers.

[pixiesmommy]

Thanks for the reminder about ibuprofen. We do give it to Pixie, but I didn't think of it for some reason with Peri. Again,

 

I'll keep everyone updated.

[P_Mom]

Sorry about your second daughter.......I remember the feeling when my second son presented with PANDAS. The "good news"......sometimes things happen for a reason...that is how I looked at it when I found I had two sons with PANDAS. Without my younger son presenting like he had...it is VERY likely my older son would have been misdiagnosed, and therefore, mistreated and most likely still ticcing today. (as per Dr. Cunningham)

And, now you know what your enemy is!

It also always brings be comfort having both kids on proph. antibiotics......that way one child is not continuously bringing home strep and affecting the PANDAS child. Also.... you caught it early...like we did...and we are managing well on antibiotics alone!

 

Was that Dr.K's reasoning behind being able to manage on antibiotics? Because you caught it early?

[sf_mom]

I am so sorry to hear your news! As you know, our 3 year old twins are responding very well to antibiotics and we hope to not resort to hdIVIG. So glad Dr. K helped immediately with antibiotics. Motrin when needed does help tremendously.

 

-Wendy

[pixiesmommy]

I think it was a combo of catching it early and it not being as severe at Pixie's was. With Pixie, we jumped right into hdIVIG because there was no getting abx into her and no time to wait. By the time we found the PANDAS dx and him, she was so far gone we were thinking we would have to institutionalize her.

[Stephanie2]

Both of my boys had sudden onset from 18 months on, so I know what that is like, especially when everyone around you is like "hello...it's just terrible two's"!!! I have to say that both of my boys were diagnosed within months of each other and we did not start treating my now 2.5 year old until he was REALLY bad (long story). Even with that said, we were able to get control of the inflammation with a 20 day steroid taper and antibiotics as needed. Oh, after the taper we went right to spironolactone and LDN to keep inflammation down. Then dropped abx to go to OLE (olive leaf). My point to all this is that my boys are now 100% and I only needed IVIG for the older one.

 

Here's hoping you have a smoother ride second time around!!

[pixiesmommy]

I don't know what the half-life of the abx are (Augmentin) but she is in control until it is time for a dose (twice daily) and then she totally loses it.

 

Today she was fighting me with full force to stay out of her carseat, and then once we got back home (from story-time) she fought me to stay IN. All too familiar. She refused meds, so I finally convinced her to drink some juice (refusing to drink- period- also familiar!) and got them in her that way. An hour or so after abx were down, she was back to her mostly normal self. She had a weird hand gesture today that scared me though- kind of flickering her hand at her mouth/nose (imagine fingers together like you would sprinkle something.)

 

Sleep last night for her was one of the best yet, so I'm still hopeful that we are improving with the abx. There is NO doubt in my mind we are on the PANDAS path though.