peglem

Praying! What kind of a world is it, when we are happy to hear our children have immune deficiency, so they can get treatment?

Here is the forum list for helpful doctors- many are in the area you requested, most notably Dr.s Bouboulis (I probably spelled that wrong) and Triffiletti. The list gives contact information as well. I think it is an excellent idea to bring interested, supportive doctors together! http://www.latitudes.org/forums/index.php?...rs+we+have+seen

We're to the point now, where some things I just insist on, knowing we'll probably get a meltdown. The exorcist-type rages are mostly gone and a meltdown actually gives us the opportunity to help her practice self regulation and develop strategies for dealing with it. Yes, I'm a glass half-full person! We spent so many years tip-toeing around, in "don't wake the monster" mode, its real progress that the monster is beginning to get tamed.

"Store day" does help. When she checks we just say, "We go to the store on Friday." or "Friday is store day." She'll come back to it several more times, sometimes gets upset, but we stick by it- can't afford all those store trips! My daughter really has a problem w/ fixating on the helium balloons, and there have been times when our house looked like a sea of jellyfish w/ all those strings hanging down from balloons floating on the ceiling. (They last about 3 weeks) We've had to limit # of balloons before the trip and one of the reasons we prefer going to Target is that they don't have helium balloons. She likes the latex ones, too, but usually wants to draw on them or have us draw on them for her- that goes in phases, but its also an obsessive thing.

My daughter does a sort of version of this. 2 years ago,, we could not take her anywhere- her fear was so great. So, once, she began being able to go to stores (dollar store, walgreen's, target) we were delighted and took her frequently...but its turned into a bit of an obsession and she is constantly "checking" when is the next time she can go to the store and frequently refuses to do things unless there is a trip to the store involved- kind of a reverse ABA! Then, too she has things in each store that she obsesses over- balloons, OMG!!!, flashlights, dvd's. We've made Fridays "store day" and she usually has to wait. But, we've been trying to expand the list of places she can/will go, but going anywhere else usually results in a meltdown if a store trip isn't included.

I was one who got Dr.L covered at in-network rates ($35 copay to see specialist). We got it pre-approved because the local pediatric rheumatologist sort of accidentally referred us! We paid up front, but they reimbursed us pretty quickly after we submitted the paperwork.

Praying that all goes well for your little one tomorrow! And for you, too!

Yes, and something really stinks about #1- Hip, Hop Academy....we need to knock them out and push up Sophia's sweet little babies!

Pupils dilated- abnormally large for the amount of light.

Don't want to sidetrack this thread too much (too late for that, I suppose), but let me just say ABA has been the bane of my existence! Teachers who just refuse to try anything else, when that CLEARLY is not working make me very angry. But, they don't get the tolerance, because they should know better, are supposed to know better and have made it their life's calling to know better!!!

Well, I do work at being tolerant of most people and prefer to think they are not so mean, but just ignorant. I know my experience w/ my disabled daughter has drastically changed the way I see/interpret "bratty" (for lack of a better word) behavior. So, I try to cut others, who have not been subjected to my life changing experiences a little slack. I probably (pre-Allie) would have thought your insistence on these diet things were just attention getting pickiness or something (like maybe your mom should have been stricter w/ you!)....So, I guess I try to understand their lack of understanding and not take it so personal. In this instance, I don't think you should give up a family social event (its not just a meal) because of your aunt's lack of understanding- you are the only one who will lose out if you do. Just my opinion.... The only ones I really have no excuses for are SPED teachers, who by their training claim professional expertise. I figure they should at least be as good at this as I am, w/o professional training.

I don't understand how they can use symptoms to distinguish lyme from other things. There is not a single symptom on the list that is specific to lyme disease. It seems like the dx really depends on how well the patient responds to treatment. (I'm okay with that!) My daughter has never been tested for lyme, or mycoP either, and I think (though he's never told me this) her physician is afraid if testing for those comes up negative, he'll not be able to justify treatment. So, he's prescribed some treatments that seem to be "just in case its that" in the name of her strep problems (intracellular). She has responded well to them. So I may never know if its actually more than the strep...and I guess I don't care as long as she is responding to treatment.

Well, I wouldn't let her insensitivity ruin my evening. Do they have salad? You can probably find something there to eat, even if its just side dishes.

I've thought this is the case with my child for a very long time. But, I think that there may be something- some underlying problem that made my baby susceptible to that reaction when other babies did not develop problems from it like mine did.

My daughter (15yo, 110lbs) takes 500mg zith every other day, following a loading dose of 5 days, 500mg/day. She's been taking zith for @ 3 years, varying doses, and it has continued to be the abx that works best for her. But, I wanted to ask if you'd ever considered that his other issues may be PANDAS related? Sensory issues, sound sensitivity, raging tantrums, digestive problems...all common in PANDAS. If you haven't already, please visit the FAQ thread here: http://www.latitudes.org/forums/index.php?showtopic=6266 You'll get a lot of info more quickly than scanning the forum. BTW- Welcome! You'll get a lot of help and support here!

Yes, she gets 1.5g/kg every 4 weeks. Her doc just uses a solution that has low IgA. But, she also has almost no IgE, so possibly that puts her at lower risk of allergic reaction. My understanding, though, is that there is very low risk (but not no risk) for people with IgA deficiency, and the nurses who administer are very careful to watch for reaction.

Okay, breathe! Allie's IgA is MUCH lower than that! If Danny has had many IVIG treatments w/o anaphylactic shock, its probably not a problem. (Do consult Dr.J, but realize that she's read the lab results). The danger w/ low IgA is the small amount of IgA in the IVIG could cause an allergic reaction. Allie gets a solution that is very low in IgA. The other thing is, you are supposed to have high IgG levels after IVIG- that's what its for! Do you know what his levels were before he had any IVIG?

I've often wondered how you could tell with boys! Of course there are the behavioral things- the punchy giggling and hyperactivity, but it hard to tease that apart from the PANDAS behavior sometimes. Yes, that's the same doses we gave. My daughter weighed @ 100lbs at the time. Except for the yeast, she did well on it. In fact after we went back to zith and got the yeast under control, she had improved considerably. Its hard to see improvement during yeast.

Yes, that's the same doses we gave. My daughter weighed @ 100lbs at the time. Except for the yeast, she did well on it. In fact after we went back to zith and got the yeast under control, she had improved considerably. Its hard to see improvement during yeast.

Yes, its in the thread I linked above.

We,ve done both. It was after we had success with rifampin/aumentin and we wanted to do it again shortly after, but Allie's pediatrician felt that the rifampin was too hard on the liver to do it too much, so he switched to zith/aumentin for a couple of weeks. Then we just went back to the zith only. Augmentin always gives Allie massive yeast problems (vaginal inferno). Zith helps w/ intracellular organisms and aug. w/ extracellular- so that's why the combo.

I'm giving the link to that thread, since it contains info from other parents about their experiences w/ sudden onset improvement. Since that post- Allie has been up and down, mostly up and mostly improving. She has not had a really bad day since. http://www.latitudes.org/forums/index.php?...ic=8460&hl=

Jodie, Can I ask what your professional experience is? Not only am I curious, but I think it would help me to have a context for your postings.

Melanie, Has the 1g/kg been making Danny worse? Does he have a flair after each infusion?

Here's the abstract: http://www.ncbi.nlm.nih.gov/pubmed/19883419 and the text, bolding mine: But, what Danny is getting, 1g/kg, is really a medium dose, so I don't know how that would play into this. We know that that the 1.5g/kg dose is anti-inflammatory. Can you get Dr.J to call Dr.B? Also, Taurine has anti-inflammatory properties, without the tummy problems that ibuprofen can cause.