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IVIG yesterday and today


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She vomited the steroid again right after I posted and we called Dr K again. Her temp is up to 102 and he wanted to take her in to the ER. He said he would call ahead and tell them what to do.

 

I'm home alone w/the baby (who is sleeping soundly upstairs) and I'm a nervous wreck waiting for DH to call. She was in so much pain and could barely walk out the door she was having such a hard time unfolding her body. I'm hoping I did the right thing now with IVIG.... the doubts are creeping in.

 

Has anyone had this happen???

 

 

Hello Manda,

So sorry your child went through this. It brought back unpleasant memories. Gaby reacted pretty much the same way - headache all night after the 2nd day of IVIG - couldn't sleep - cried all night with the severity of the headache, vomited for hours. Fever. By the next day she was better - just slight headache, a little nausea, no more vomiting - no fever. It's a nightmare to go through and it's hard to know whether it's all worth it. Her motor tics did go away at that time, although I've seen other parents post that their tics either returned or never went away. The rest of her behaviors (extreme anxiety, sleeplessness, OCD, angry outbursts) didn't start going away until 6 months later, so I can't be sure I can credit IVIG with that. Generally it's effects wear off after one month or so. She has been doing well the last 5 months - had posted before about some of the immune support I was giving her & she seems to be getting her immune system in order these days. Pat

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Manda, SO glad to hear your dear child is home today and doing better--will keep you in our prayers.

 

 

Pat: Wow-- These words in your post just really hit me after everything you had been through with Gaby: "She has been doing well the last 5 months -" That is great news today to hear, thanks for letting us know--

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I'm glad Pixie is feeling better! :wacko:

 

Our IVIG experience: my dd did great during IVIG (she got 1mg/kg 2 days in a row, which is a higher dose than Dr. K. normally uses). Dh did notice that she would get pretty antsy at about 2pm (after several hours). He thinks this is b/c she had to use the bathroom at that point! We did give both days benedryl/tylenol as a pre-med (in addition to advil at night). For 2 days post IVIG she had flu-like symptoms (low grade fever, headache--which we already knew was a pretty normal reaction) which were pretty well controlled with tylenol/ibuprofen. We also continued the benedryl. I would say for us, IVIG was pretty easy...as we were prepared for much worse.

 

Once the flu-like stuff was over, we did NOT notice an improvement in her symptoms for the first week. In fact, she was quite irritable and difficult, lots of emotional lability. Weeks 2 and 3 were much better. We're now 5.5 weeks post IVIG... week by week we have continued to see improvement. I still see "flashes" of PANDAS, anxiety, etc. which quickly pass and have had some episodes of what we suspect to be "turning back the pages" (eg the altered "taste sensation"). But overall, she is getting better, even her handwriting is improving. I wouldn't say she is 100%...but so far we are really encouraged by what we have seen and are keeping our fingers crossed that she doesn't relapse.

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She was definitely "off" today and we did see some things from her that we haven't seen in awhile and some things we've never seen before.

 

-She could not spell simple 4 letter words

-She could not write (would say she wanted to write an R but kept writing D) and seemed to be spelling things backward or with vowels replaced w/other vowels)

-Some baby talk and some accented talk

-Fixated on verbal things, like kept playing with the words "police" and "post office" and "po po" for about 15 minutes while dancing around me

-No decision making capabilities at all

-Using odd or really big words to describe things (did this yesterday too- told me her nose felt delightful)

-Tapping (last 3 days, started after first infusion again)

 

Did say her headache was a 0 or 3 most of the day!!! Fever not above 99.3 all day. Willing to take meds without a fuss.

 

One weird episode before bed- she was in a fine mood, compliant though "off" and went upstairs to brush teeth and on the way said she had to pee. Got into the bathroom and she started pushing against things and I grabbed her to keep her from falling and hitting her head. Once DH got home from his walk with the baby, he came in. She was fine once he was there and went to bed without a problem. I could see that she was fighting, but it was if she wasn't fighting ME (which was weak) but against something. I kept talking to her and she kept saying she didn't want to fight. :wacko: I'm glad it was short-lived and at bedtime because it really seemed to drain her.

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Returned home earlier from IVIG with Dr K.

 

Pixie had slight headache today with only 15 minutes left to go, so they ran a bit of fluid and ran the rest at 1pm. Headache has gotten worse since 4pm and is an 8.5 on a 10 scale, according to her and she has vomited 3 times. Temp is up to 100.9 with meds, so we put in a call to Dr K and he prescribed some steroids to help. 9pm now and she is resting, but uncomfortably b/c her back and neck are very sore and stiff.

 

The treatment itself was very smooth and he and the nurses were very sweet and answered lots of questions during our 2 days there.

 

Will update again soon.

 

Hi I wanted to know how Pixie is doing ? I havent heard anything..

 

Melanie

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It's been a wild ride here the past few days. She is "vacant" when you look at her face. She's singing and playing with words and spinning around, but there is "no one home" when you try to communicate with her. She's not hearing us when we speak half the time and we are having to force her to take meds (which is new.) The good news is, the total full-body writhing and big shoulder tic she had before IVIG is completely GONE. Vanished with the wind!! She even said today that the shoulder muscle pain she has had for months was better! She's still ticking her hands and eyes, and has a slight neck tic, but NOTHING compared to what it was.

 

New things cropping up in the way of bathroom issues. Going to bed is easier, but night waking now (new) and other odds and ends, but we are dealing the best we can. No fever, no headache today, still quite tired.

 

In other good news, we saw the immuno today for the first time (was hoping to get in with him PRE- IVIG, but that didn't work out) and he had heard of PANDAS and acted like it wasn't the least bit controversial. We were like, "She has a diagnosis of PANDAS" and he asked what her symptoms were, we told him and he nodded and took notes. Was knowledgeable about the IVIG and agreed that we should wait 3-4 months out to do further bloodwork to make sure we are really getting a true read.

 

This is what he ordered for us:

 

Diptheria Antibody IgG (DIPH7)

 

Tetanus Antibody IgG (TETA)

 

Haemophilus Influenzae B Antibody IgG (HIB)

 

Pneumococcal AB IgG (14 serotypes) (POLABR)

 

Quantitative Immunoglobulins

IgG

IgG subclasses

IgA

IgM

IgD

 

Isohemagglutinin Titer (Anti-A and Anti-B titer, CRef)

 

 

and wrote us a prescription (at my request) for 2 refills on EMLA cream and kit for when she has blood draws! YAY!

 

Of course, we can't get this done until probably January, but I have it in our binder and the appt is out of the way, so it's one more thing I can cross off our

"to do" list as far as medical investigations.

 

---

I'll keep you posted. I'm hoping we're going to see an upswing in behavior/mood soon!!!

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She's on 250 mg of Augmentin/day (1 tsp in morning) that she has been REFUSING to take (not like her, but her taste is off since the IVIG and everything tastes different.) We hid it in a smoothie this morning and that seemed to work pretty well.

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Is that considered a full-strength dose? Personally, I would want her on full-strength abs for at least a couple of weeks before putting her on a lower prophylactic dose. Esp. since we don't know if she was culture positive (or she could have strep hiding out in her sinuses, even if her throat culture was neg.) before IVIG. That is just my 2 cents.

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Is pixie on antibiotics? Which one?

 

I'm glad you found a good immunologist!

 

Pixie is taking Augmentin (I forget the dosage off-hand). She was REALLY resistant to it at first, but once Dr. K told us we could mix it with food, we've had success.

 

Pixiesdaddy (posting under Pixiesmommy's name).

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Pixiesmommy,

 

It's my understanding through our Pharmacist that they no longer make the Emla cream kits. You will be able to get the emla cream itself from the Pharmacy but you will have to order the Tegaderm Film to cover it off the internet. We have not found a local source that sells it.

 

 

Glad to hear your appt went so well today. Hope things settle down for you soon.

 

Sam

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