pixiesmommy

Peri is stuttering. It started about a week ago.... and coincided with her rash and not feeling well and being "I scared, mommy!!" when I would put her down for a nap. Of course, all I can think is Strep and PANDAS, but I am trying to take a breath here. She tested negative on the rapid and 72 hr strep cultures we did last Wed. She is saying all in one breath, "Mommymommmymommmy mmmm mommy mommmy mommmy LOOk... (and then telling me what she wants to say.) Today there are about a million more mommies attached and it is EVERY time she says something, not just a few times a day like it has been. It's a DRAMATIC increase and she is doing it with DADDY today as well. She is also stuttering the first word after the "mommy" or "daddy" sequence and doing a very hard blink of her eyes while saying it. Now, to rule out a couple of things, Pixie doesn't stutter and she has been around no one who stutters. Also, even though Pixie will occasionally have an eye tic now and again, she has not had a very hard eye blink like Peri is doing, so we know she is not mimicking. Pixie has not had an eye tic since IVIG either, which is about 2 months, and we have no reason to think Peri even ever noticed it, etc. I know of another little boy (whom Peri has never had contact with) who did the "mommy" thing at about 4 yrs old but he did not become verbal until 3 yrs, so I can't compare the ages/stages as well with that. He is 6 now and does it less but also has had some extensive speech and motor therapy. Anyone?? *As a side note, we are starting her on abx because I'm still concerned that her diaper rash is strep even though her throat swab was clear. The PA would not test her bottom for strep. She has rash on her bottom which started on her tummy (2 boil-like bumps that made me first think Chicken Pox as she is unvaxed... then raw bottom with some bumps, then sandpapery rash on trunk which came and went with the wind, then 3 bumps on face and now a runny nose and still a raw red bottom.) The PA prescribed Zithromax 15mg/day because she thinks she "may have a sinus infection." Whatever. I have have abx but I don't think sinus infection. She initially diagnosed her with diaper rash (duhhhhh on her face too??) Also, just to add to the craziness- she has (like Pixie, my confirmed PANDAS dd, 9 yrs old) had unexplained fevers. 2 of them now and both in the past few months. Each lasting just a few hours with no other symptoms like pain, runny nose, etc. One so high that the dr had us take her to the ER for observation, who of course sent us home with suppositories to bring it down. After the first one she didn't have any symptoms that we really noticed, other than maybe a slight increase in head-shaking (side to side) which she had been doing since about 9 months. Then that disappeared altogether and she got VERY clingy after second fever and now is "scared" of everything. Where is the hair-pulling, screaming, I'm-going-to-ram-my-head-into-a-brick-wall smiley????

We had to have "daddy" come home to take her to school because "school is boring and my teacher is mean to me." So ours started before she even GOT to school. I think it is the change in routine. Mondays suck here in general lately anyway even after a 2 day weekend, much less a holiday stuffed with crap food and too much stimulation. For the ones who are worse at/after school, here is a thought I have had- my mom has Lupus and she gets ILL (bad mood, sick to her stomach, headache, exhaustion) around flourescent lights. Do you think that could be a trigger for your kiddos too? Just throwing that out there!

It does nothing for us. It never helped decrease tics, doesn't improve mood or change anything whatsoever as far as we can tell. It will decrease fever *sometimes* but not always.

Re the eye-blinking: Yes, in fact, that was Pixie's first and only tic for about a year and a half. It started out sporadic and then became really intrusive. Doctors all gave us allergy meds and her teacher decided she was doing it for attention but finally we saw a ped neuro who asked a lot of questions about other tics she may have (we didn't realize it but she had had sniffing and throat clearing that were also tics) and we put it all together and she was diagnosed with Tourettes at that point. To get a dx of TS there has to be 2 different kinds of tics present for at least a year (vocal+motor.) There is a really high number of kids who have a least one tic during childhood who don't qualify for diagnosis of TS, and most grow out of it from what I have read. Even when we got the TS dx for Pixie, I was told that she would probably grow out of it. (The reason we were led to PANDAS with her is that we started seeing some strange behaviors that also coincided with "unexplained" fevers.)

My daughter is 9 and saw the Today show segment that was posted here as I watched it. I may have posted this already, but she immediately said, "She has TICS!" when she saw the sneezing. She also asked if Lauren had a shoulder tic. I wondered why she asked this and she asked me to back up the tape. It does look like there may have been something going on with her left shoulder during the segment, but she was also (obviously) sneezing, so it was hard to tell if it was part of that or something else. She was also pulling a good bit at her shirt, which makes me wonder if she has sensory issues (again, please understand that we were really scrutinizing this at my house because my daughter was very interested since she feels quite alone at times...) You are right when you say that a few minutes of a show can't give us a full picture though, because any of those things in isolation could be misinterpreted... the shoulder could have been due to the sneeze, the pulling at clothes could have been that she was wearing a truly uncomfortable shirt or the mic she was wired with or the attention she knew was on her making her fidgety, etc etc. But having said that, I think Pixie (my daughter) is a good observer and there may be some things that seem like a part of Lauren now that when you really stop and think may be quirks or tics that tie in with PANDAS. In some ways you are lucky (I know it doesn't feel like it at the moment) that she presented with the sneezing/tic that she did. So many PANDAS kids present with such extreme and really scary symptoms like becoming suicidal or homicidal or anorexic... really life-threatening things that carry a lot of stigma. I know that doesn't help her stop sneezing or "lessen" it.. and I don't mean to. I'm just glad it wasn't something worse and that you were able to get attention and help as quickly as you have. Please let us know how things are going. You are in our thoughts at my house!

Have the child eat something dry, like a cracker... and chew to the point they would normally swallow and then put the pill in with the chewed food and swallow it together. Sometimes a drink of water during/immediately afterward helps as well. Pixie has been swallowing pills like this since she was 4 with no problems. Some of the antibiotics can be crushed or come in liquid, but you would NOT want to do this with any extended release pills, so make sure you ask BOTH the doctor and the pharmacist to double check on any meds you can't swallow.

If you went to who I think you went to... Dr O? Then, yeah, even her Concord office back in the day was horrible. I liked her (herself) a lot, but here we are, 4 yrs later and they still won't give me Pixie's records! Boo! So sorry you are dealing with this. Too bad you can't speak directly to her... wonder what the deal is!?

I think I speak for everyone here when I say that we are sorry you had to end up here. I hope that we haven't scared you off... this board is a wealth of great people and fantastic information... and a great place to vent and just work through it all with people who "get it!" More later... I'm running out the door! (((hugs)))

Pixie has had 3. They thought they saw something on the first one, which was with a strobe for like 10 minutes in the office, so we did a 48 hr one that showed, "increased possibility for future potential seizures" which was translated to us in layman's terms as, "there is nothing there- don't worry." Those were a year and a half ago. We did another one a couple of months ago when she was having bedwetting issues and "zoning out" again and it was "fine."

I didn't see the actual show, so just the segment link to... They mentioned that it started after a cold, so I am definitely thinking PANDAS/PITAND. The mom sounded like they never thought it was an actual sneeze... she even said, "it was different, it was not productive, it was rhythmic..." I'm not sure what the skepticism is about.... ? Sounds like they are just trying to get to the bottom of it... though why it made the TODAY show after just 2 weeks is beyond me... surely there is some sort of connection somewhere with them and the producer or something. The end of the segment says to suggest help for her go to www.todayshow.com There is a "contact us" link on the left of the page.

Okay, so we are FINALLY going to celebrate Pixie's 9th b-day with a trip to downtown Chicago (we had to delay b/c of IVIG and my MIL was diagnosed with Breast Cancer....) So we are making the plans to get everyone together for this long awaited "party" and we find out that my BIL and SIL have just had the seasonal flu vaccine. The one friend who is invited for an overnight w/us may have also recently been vaccinated (I haven't yet gotten the nerve to ask, but I will....) Do you worry about this? I know that there are a million people she is around day in and day out, but these people will be sitting close to her, hugging her, playing with her... and her friend and she will share a bed that night, so obviously that is a concern. I know the H1N1 is not live if you have had the shot, but I wonder what the shed time is for the nasal spray- anyone know? I'm having a hard time finding studies, though I can find threads on www.mothering.com that say at LEAST 3 weeks for any live vax.... Anyone??? I'm worried I am going to have to either ask people not to come or to postpone again if her friend has been vaxed.

Haha.. or alcohol... or letting the kids run wild at a park... or whatever! PMed the likely suspects with my phone number

Just curious if there is anyone in my area. I know a lot of you come here for Dr K.... Would love to have someone nearby who "gets it" to maybe go get coffee when things are calm or even get the kids together when things are stable... for support for both adults and kids. Anyone?

Abx will not treat the virus (flu or cold) but can help protect against secondary infections, like strep. I just emailed Dr K with what was going on in our house and let him know how it was affecting her. We have had to increase twice now for 10 days each due to us getting sick (she typically won't show any signs of any illness other than some sore throat occasionally, fever and lethargy, but the behavioral issues are what tend to come out BIG BIG BIG time.) Here is a link my DH found regarding strep as a secondary infection to colds or flu: http://www.gannett.cornell.edu/top10Topics...at/default.html and a quote from that page: "Most people develop strep throat through close contact with someone who has an untreated strep infection. People with weakened immune systems are more likely to become infected with strep throat. This can occur when the body is battling a cold or the flu. Stress or physical exhaustion can also weaken the immune system and increase the risk of infection ." So the antibiotic increase is NOT to treat the virus, but to protect her while she is in a more vulnerable state in catching something else (like strep.) Hope that is a littler clearer than mud now... it's getting late! Oh... also, we find that putting liquid Augmentin in smoothies is not as bad... maybe try various forms of it (pill, liquid?) I know Pixie hates the taste, so I don't know if that is his issue also or if it is just the taking of all the meds and supplements- it does get overwhelming!!

her eye tic is back and she is really lethargic, but otherwise seems okay. i'm holding my breath!

She did a little bit. The rages were worse, but shorter lived. My DH has a thread on here with her post-IVIG progress somewhere...

Emailed Dr K because her throat is worse, has headache, chills. We all (except her) battled a cold or flu for the past 10 days or so that is lingering with us, so I suppose she is finally getting it. He quadrupled her abx for 10 days.

? I have never heard of this. We use magnesium....

My 9 year old daughter says, "It only hurts a minute when they put the IV in and then it is fine. Tell him that it only changed my personality a little bit, but that was a GOOD thing. I can sit and do art and write now without having to start a fight instead. I can concentrate. I feel better in my body and my brain.... clearer. I am still me, but happier and better." She knows that life for her was headed for an institution. I say that only half in jest. Our story is VERY much like yours- in fact, yours is the closest to ours that I have seen on the board so far!!! We have been through the rages too, and those only went away with IVIG (and only in the past 2 weeks, so expect some things to stick around or even WORSEN for a little while after IVIG.) Pixie did not have fears going in though, she wanted to get rid of the anxiety and was begging us to do something, anything. She has said several times, of her own volition, that she is happy she did IVIG and would do it again because she feels better and is able to act better. She is able to attend school, to sit and do art, to be creative and make more choices instead of locking up on OCD details, and has more clarity for things like word-play and making jokes, playing games, etc. Have you mentioned this to Dr K? (He is the one who did our IVIG as well) He may have some insight too on how to best explain how it will be helpful and not strip him of "who he is." Manda

((hugs)) Even simple things feel overwhelming when you have a sick kiddo. Glad it's over and you got it sent without any bumps in the road. -Manda

Red is if the lab can't spin it for the serum. Blue is if they CAN spin it. They will only use 2. When you send it back, include the ice pack and the vials, along with a history of strep (or you can email this- I did.) Put the ice pack with the vials and wrap in something like an old towel or paper towel and seal in a ziplock baggie (in case it bursts in transit so it won't soak into the box, etc.) If it seems to shake around, then tuck some paper towels or bubble wrap or newspaper- whatever- in the space. We re-used the box with the new label and it was fine. Also make sure you don't overnight it on a Friday because they are out of the office and can't receive it on Saturday and it would spoil. -Manda

We are all (except Pixie) recovering from a flu or really rotten cold. She has not been symptomatic whatsoever, but has complained the past couple of days of a sore throat (says she thinks it is due to sinus drainage) and the insides of her nose. Really complaining today about her nose and says it just feels raw and sore inside. I'm debating taking her to the dr to get a swab and I wonder if they should swab her nose or something too if I *do* go? (Man, everyone is sick here and walking into a dr office right now seems like walking into the thick of it! ugh!!!) No behavioral stuff going on with her- in fact (knock on wood!!) she is having a really great week so far. WWYD?

I was telling DH about another incident earlier (last week) where I was trying to get her to school and all she would do was lay on the floor and scream "BUT I MISS MY DADDY!!!" and I was getting exasperated with her, UNTIL I realized that it was almost like a tic and was truly separate from what was going on with her. I was able to stand back and take a breath and approach her with "I know you miss Daddy and you need to say it over and over, but you are still going to go to school. You can scream it all you want, but let me help you up so we can put on your coat and shoes while you scream it." She could hear me and actually cooperated, and repeated it and cried all the way to school. As we pulled into the school drive, she then stopped and tearfully said, "I'm soooo sleepy!" I think the sleepy was the problem, not the missing Daddy. She knows what she wants, but for whatever reason, the wrong words keep coming out of her mouth. This is really new, so hopefully it is a "flipping of the pages" type thing and will go away, but thankfully we are learning how not to just listen to her words, but try to look at the WHOLE picture too.

Realizing we are getting off topic, but I have to add this. You all may have seen me mention Pixie's "unexplained" fevers, and that is what I am referring to. She will normally be around 97 (rather low) for her temp, but then it will raise up to 99, 100, highest has been 103 with no symptoms and that lasted 10 days and the ped FINALLY saw it for herself and ran some tests for Kawasaki, Lupus, Lyme, Leukemia.... nothing came back except a SED rate of 63!!! They said this was a lab error and re-ran it, BUT she was over the fever by the time they re-ran it (of course!) she was over the fever and the SED rate was down to 14. At that point the ped refused to do any more tests, so we changed doctors (not that that got us anywhere for a couple of years!) During a "fever" she has a redder "flushed" face, sometimes with hives presenting on her neck and a pink sort of spiderwebby look to her skin and is lethargic with tired eyes, dark circles under her eyes, usually an increase in tics (especially eyes) and then AFTER the fever is done, an exacerbation in behavioral symptoms. She used to get 2 big bouts of fevers each year (with no other symptoms)- in Sept and in March. BUT now they are lower and more frequent- increasing more and more. We are now to the point where a doctor would consider her "normal" baseline to be 99 because that is the temp she is probably 4 days out of the week. The fluctuations from 97 to 99 don't fit the pattern of exacerbation from before- now she will have the behaviors no matter what. The chiro we just saw feels like Pixie has a viral pattern showing in her blood work (in addition to the strep) and that we should treat that with various herbs and high doses of vitamin D. There is enough to say about this for a whole other thread though!! Manda

Pixie had an ekg about 2.5 yrs ago because they first suspected Kawasaki's. She has periodic "unexplained" fevers that sometimes go up to 104 and have lasted as long as 10 days. She has a murmur, but things were otherwise normal, according to the ped who read it. We are looking at seeing a ped cardiologist to make sure things are still normal.