JAG10

DCmom, Your plan sounds perfect to meet your girl's current needs. We do have to be the Olympic champions of parents here. One of the hardest components of this is the inconsistency of who you are parenting at any given time period. I've used the 3-2-1 magic program with my 8 and 11 year olds as well. We've also used the chips when things were really bad, I wrote values on poker chips. It's a little tedious, but does work. I'm reading an interesting book on different generations. We are Generation X or the MTV Generation born 1965-1980. We are extremely independent and somewhat cynical. The next generation, Millenials are very different from us. They are used to a lot of praise and step by step guidance, love to "check-in" a lot. These are folks born in the early 80's to 2000. The next generation, Generation Z (until they can think of something catchier) are our children. There is a lot of hope for this generation. That they will be as tech savvy and great problem solvers like the Millenials, but with the Xers independence and work ethic. So...... We are up to the challenge and so are our kids! Jill

So sorry, Lisa! Something is certainly going on with him. I had a similar experience with my dd11 a week before her ivig in April, I think. She had a friend spend the night (little sleep) and woke up all goofed up the next day. I thought it was the lack of sleep, but it just kept going. I reported to Dr B what happened, and this is when he added the Bactrim bcs her Bartonella was questionable. By the time we got home from IVIG, my younger dd8 was exhibiting symptoms too, it was strep. It will be interesting to see if you observe any change when you begin the prednisone pre-treatment in a couple days. It is so hard to watch this unfold. The ivig will get him back on course. He is sick, he can't help it. You and your dh are doing everything you can at this point. You have a few more days to get through. Maybe plan a couple fun things to get his and your mind off of the symptoms. I know, easier said than done. A good friend on this board sent me a card once that said "when you feel like you're at the end of your rope, tie a knot, hang on and swing." Well, at least hang on. Prayers & hugs Jill

Dr K recommended a T & A for my younger dd. Very similar to what others are reporting; tonsils did not appear problematic upon office exam, but quite indicative of chronic infection upon removal. The ENT removed them solely on Dr. K's recommendation. My older dd's were removed years ago, kissing tonsils that resulted in terrible snoring, questionable apnea.

I was asking a question of immune system load that can be made up of bacterial, viral and environmental. Could allergies tip the load scales of what the child's immune system can handle making them more susceptible to strep infection and therefore giving a seasonal appearance. I'm not confusing bacteria vs virus vs environmental. Abx are effective in slowing down bacteria so that the immune system can do its job. Abx do not impact viruses or allergy, but it remains the job of the child's immune system to handle all the "invaders" that are identified.

One thing I heard about Dragon Speak is that it is "one speaker" specific. So, it can adapt to the patterns of one person only and can't be used by someone else. There are apps as well you could use for trials.

Also, if they learn cursive in 3rd, sometimes that helps with the flow and reduces reversals. Sometimes it just complicates matters. Type to Learn is a good keyboarding program for kids.

Via our small sample here, we see more of our children with an increase of symptoms at certain times of the year (NOW). It made an impression on me that my dd11 had a pandas episode the exact same time last year as this year (within the same week.) Pardon me if this is a "duh" point for some of you as my dd has only within the last year become well enough for me to notice any patterns. Is there really a strep season? Isn't strep all around us everywhere? Is it that early August brings my dd some seasonal allergies with very mild "allergy symptoms" that lowers her body's ability to defend itself against strep? I mean, if she is asymptomatic to strep she could be asymtpomatic to allergies too? I guess the histamine conversation got me thinking....maybe the histamine cascading is her allergy symptom? So strep is one gang, "The Streps" and usually the police (her immune system) can keep the Streps in check in the neighborhood with the help of some National Guard Reserves to back them up (prophylactic abx.) But when the A-gang (allergies) come to town, the two gangs set each other off and the police can no longer keep the peace, they need the full National Guard (abx-full strength) to slow down the Streps so the police can handle the A-gang and keep both from destroying the city. When the A-gang leaves town, the police are able to keep the Streps under control again. So, how do we know the Streps are even there? For us, titers; plus....why would abx help allergies alone? Alright, perhaps that makes no sense! Plain speak- Is it more likely allergy season that leaves the door open for strep issues if you see a seasonal pattern for your child? If that is true, how does that impact treatment/management plan?

Have you asked your school district for an assistive technology assessment? Depending on your state and how the school system is set up, often the SLPs and/or OTs are responsible for the process of determining which device will be most appropriate and with what software. I will say this....typing in 3rd grade is no easy road either. I've had students with significant dysgraphia who begin introduction to a Dana/Neo/Alphasmart and it takes a couple years to develop the skills for typing that will outpace the weakest writer. Does your child have a 504 or IEP? If so, you can ask for scribing accommodations during specific assignments or tests. Is an OT involved? If I were you, I would definitely pursue this through the school. There can be trials of different devices with the teacher and therapist keeping data to determine which device and accommodations result in the most effective learning.

Kathy- please let us know what he says. I'm going to have dh ask him similar histamine related questions when they go 8/31. Those articles are very interesting, but I found myself going yeah, yeah, Yes! Now what? The last one posted by Peg on the H3 and CNS is from 2006....where have they taken this since?

Peg, What test is run to determine histamine function/dysfunction??? Lots of folks here have commented on histamine issues both hyper and hypo histaminic responses. I remember EAmom referring to histamine cascading and we have that too, me and my girls. We have the hyper histaminic response to insect bites, which I've referred to ad nauseum. Nancy mentioned Dr T looking into histamine and I'd love to hear an update on what he has discovered.

So far, no yeast problems. Ironically, when first on this board describing dd's symptoms of silly, goofy, intoxicated behavior, folks would jump all over me about yeast. It wasn't yeast as that behavior has virtually vanished with abx and ivig. She does have histamine issues though. Histamine cascading when running or standing in one spot too long.

Bees-What are you referring to when you write comorbidity? P16- prior to your 10 year remission, did you react to viruses, allergies or anything like that?

Laura- this is excellent work! How do we get it pinned up top? On the spouse issue, does anyone else experience this....you have an intense conversation with your spouse about the concepts surrounding biological infection resulting in behavior. They seem to get it and for the most part, are on board with the treatment plan, helping when/where you ask. You are clearly the conductor of this orchestra, he, idk-the stage manager doing what he is told? Life tramps on and something happens, maybe-hopefully, it's even an improvement in an identified behavior and hubby innocently comments "Yeah, she's really maturing." Maturing???? She is not "outgrowing" this. This is not a matter of Leo the Late Bloomer, dear. Your dd has an illness. Yadda, yadda, yadda. Okay, so when things are bad, he gets it. When I re-educate him, he gets it. But, his default position does not reflect that he gets it at all. Maybe it's denial, probably. But this scenario has played itself tired and I have come to accept it and not argue about it too much. He never gets in my way of getting her the treatment she needs. He follows directions when his help is asked for. Would I be worried about her if I dropped dead, yeah- so to Laura's point take care of you. He is an amazing father, but I have not succeeded in changing his default position, especially in the behavioral, you can't physically see it, types of behavior and his view sneaks out without him even knowing it. I've had to let it go.

I don't think even baby steps worked with the symptoms my dd was exhibiting at that time. I'll phrase it this way; it would not be ethical for a therapist to work with someone who is drunk or high. They're not really aware of what is going on, can't hold a thought in their head for long, and it just isn't productive at that stage. We went through the evaluation and 4 sessions of CBT when the therapist concurred....$1000 later. I just think many Peds and psychiatrists don't know what the heck to do with these kids and know therapies can't "harm" them. Well, when you need to prioritize financial resources as well as your emotional time and energy, it can be harmful if it is "wasted" when the child is not able to utilize the strategies or vocabulary being discussed. I just think it is worth considering to give yourself permission to give the medical angle some time to work to get the child in a place where they are more aware IF you have a kid who exhibits those types of cognitive symptoms, not everybody does so it might not be something all can relate to.

I hear ya! And I genuinely hope this helps your baby girl turn a corner. Hopefully, someday soon, these scientists and docs are going to figure out what makes one kid suceptible to strep vs Lyme vs Mercury and some poor kiddos get the combo meal. It all stinks! But GOd gave us our children for a reason, he has faith in us and wants good things for our children's lives. Your dd is too young, but for my dd11 and dd8, we just bought Soul Surfer. AHHHHH! What a terrific movie and story!!! Just can really help the "why me" discussion and how to persevere and embrace the path that God has intended for each of us. Make sure you watch the special feature documentary Heart of a Soul Surfer , It is absolutely phenomenal!!!!!! Highly recommend this flick!!!

Ok, I would journal or chart his behavior daily and try to use some kind of numeric judgement to make it as objective as possible. It really, really does help when you are trying to determine what the heck is going on with your kiddo. If numbers don't work for you, list out all his possible behaviors and rate si-slightly improved, I-improved, NC-no change, SW-slightly worse, W-worse...something like that. Tics are easier to measure objectively as well. You will feel better prepared with data. This brings another thought I have had about strep exposure and ivig treatments at the Darien center..... those kids are constantly cycling through the one bathroom there between the IV and the dextrose drip. I'm kind of phobic with the hand sanitizer after handwashing once back in our cubicle when we are there. Jeez, I never used to be a germaphobe!!! We are there week after you this next time. Your husband got my dd's lunch last time we were there, so sweet! I never know if I'm not being friendly enough or respecting folks' privacy Hang on...

TH Thank you so much for your input!!! My dd has not been one to articulate intrusive thoughts much at all, so how do you ever know? She has, however, exhibited the verbal diarrhea you describe with your dd that I thought was anxiety? IDK, like when you are nervous on a first date and don't shut up because the silence is too uncomfortable??? But my dd11 did just start seeing a therapist and I am going to float your idea by her. Perhaps overtime, she can determine if the genesis of perseverative conversation or being hyper-verbous is general anxiety or r/t intrusive thoughts. Very thought provoking, thank you!!! Jill

S- I hope the Lyme dx and treatment brings your family health and wellness, truly. I think it is also important to put out there not every child with PANDAS has Lyme related illness as well. In the end, parents have to trust their instincts because they can receive a lot of conflicting interpretations of Lyme as well as PANDAS. Even though I did not have a strong suspicion of lyme/Bartonella (3 neg WB, 2 from Igenex), our doc wanted to do a trial of Bactrim in response to an "unexplained" uptick in behaviors (which we later determined was asymptomatic strep.) We tried the Bactrim for 4 weeks with NO changes in behavior, no rashes, nothing but some headaches and nausea. Turns out the Bactrim in combo with Zithromax put my dd11's liver into a tail spin with liver enzymes in the 300's and 700's when they should be, and previously were, in the 20's. So giving Lyme treatment a try is not without risk, but there are many kids on these exact same abx whose livers are just fine.....maybe it's bcs they really need them and my dd didn't, who knows! I've always thought I was one of those parents who was not going to let labels get in the way of me getting my child the help she needs. I didn't let "bipolar" scare me, though it was wrong; I didn't let lyme/bartonella scare me though that was wrong too. None of us can afford to presume anything, but you do have to trust your instincts and a certain degree of skepticism is healthy. It sounds like you are trusting your instincts. I just wanted to offer a balance to the i didn't want to hear it either part of your post and restate that Lyme and PANDAS are not synonymous; maybe that wasn't what you meant. But for newer folks, that needs to be made clear.

From your lips to God's ears Dawn! I'll see Melinda's crossed fingers and double them!

Jen- my girls have never seen Dr L, so I have no practical advice, sorry. I have felt your frustration and helplessness before and just wanted to send a little support your way. I hope you definitely get through to her before the weekend. Maybe someone has an email address for her out there? Hang on...

My dd tried CBT at U of Penn right before PANDAS treatment 20 months ago. I think it depends on the state the child is in. My dd, at that time, was in no shape to take advantage of CBT. Her awareness level, her behavioral regression....she was so sick with pandas she was in a perpetual state of what could have passed for intoxication (and NO it was not yeast!) I've just started her in therapy as she is now at a point where she can participate and benefit. It is not pure CBT, but elements of CBT I'm sure will be utilized to address some social anxiety associated with the potholes of preteen girl behavior and just the emotional baggage of all this, the ups and downs, all the doctors, ect. Anyway, my only point is that in my dd's case, we had to get her to a certain point medically before we felt any therapy could be successfully utilized and worth the investment of time and money.

Lisa, What is ds's current abx regimen? Something is causing his uptick. Is there room to increase the abx dose or change to a different one before you go back to Darien? If your boy is one that doesn't swab/culture positive or show typical signs of illness to give you a clue, sometimes the only way you'll know if it is an infection is by response to abx. Viruses totally stink, but usually there are some symptoms. Have you tried emailing the nurses? If you decide to give that a try, keep it short and sweet with one or two main questions you want them to run by the doc. If he's in camp, he's exposed like in school, no? Just because you aren't hearing about circulating infections doesn't mean they are not present. Heck, I'm floored when my own in-laws fail to let me know and I have to stumble upon the Augmentin in the fridge! It's actually to the point where I find myself doing an abx surveillance everytime I go into someone's kitchen! My SIL has discovered my youngest nephew needed 4 different abx to clear strep. She wasn't going back to the doc's because my nephew was still symptomatic either; she only took him back because of my girls otherwise she wouldn't have realized what difficulty he was having clearing the infection. I definitely have one eye on that boy! If you get the doc to increase his current abx or change to a different abx before you go back in a couple weeks, and there is no change, that is still valuable information, no? Idk, it can't hurt to run it by them. Sorry Jill

We doubled up her Augmentin starting Saturday and she has started to pull out of her backslide. Not to jinx her, but we slammed the strep (who knows whether exposure or infection), slammed it down fast and hard and she has turned the corner from crying I went an aisle away in a store to the slumber party is on! The skin picking issue is very interesting to me.... I know Nancy has shared with us Dr T's theories regarding histamine being low. I still believe my girl has a hyper-histaminic response related to the auto-immune process. Not only was she starting to pick at her skin over the weekend, but also complaining of histamine cascading just from standing, not even running or exercise, just standing. Perhaps I should consider Claritan or something? Idk. The perseverative thought issue is not what is considered "classic OCD." But it is OCD just the same. Saturday we as a family had a conversation about Cookie Monster getting the ax and being replaced by Veggie Monster. She has brought it up over and over again....she wants to make her Halloween costume a voting box of Cookie vs Veggie monster, on and on the conversation went, in places where it didn't fit, like a preschooler who learned how to tell her first joke....really cute when you are four, pathetic at 11. Thank goodness, she's giving Cookie Monster a rest! Dr B suggests remaining on full dose until she sees him again at the end of the month, fine! She is also no longer complaining of the swimmers ear. One day at a time. Thank you for the well wishes. Slam down the beast fast and hard!

My dd11 came home from camp Friday informing me her counselor was not there that day because he had strep and that she should let her mom know two other campers did also. Honestly, I'm impressed they read the health form I filled out. We were at our new peds office for well checks Friday also and both girls got cipro-something for the swimmer's ear. Saturday, she starts....the skin picking we haven't seen since May 2010, the separation anxiety (she actually cried in Costco today and has been my shadow), the OCD rigid thinking and perseverative conversation, she's hopping and thumping periodically and said she wanted to cancel her sleepover at our house next weekend because she thought she was too young to handle it (something she's been looking forward to for awhile.) She was taking 875mg Augmentin (5'5", 125) once daily, so I've doubled her up on that until I can reach Dr. B's office tomorrow and see if there is anything else to do. Last summer, she had her first IVIG in May and made huge improvements until a sudden spiral that occurred Aug.13. I know this because we were on vacation and her sister started with symptoms a 5 days before. I almost feel like I can time this with the irritating cicadas' arrival for crying out loud! Last year, it lasted for 11 days from start to finish, increasing from prophylactic dose to full strength on the vacation. But I remember her being hit with a succession of exposures/infections (early/mid Aug to early Oct.) She never "swabs positive", but last year we were able to confirm the strep with a baseline from July and a marked rise in both ASO and anti DNAse B in early October. Here is something interesting; my girl with the previously chronically dilated eyes who have been normal the past several months; her eyes are not dilated now, they are remaining normal, which I see as a good thing. Interesting how easy it is to see these obvious behavioral changes once your kid gets to a place where they are no longer a chronic hot mess. She goes for IVIG Aug 30. I'm thinking she should stay on treatment dose abx until at least October and perhaps this will be one episode instead of a series. Interestingly, my other dd8 is on zith and so far so good. Cicadas really irritate me....and so does strep. Thanks to 911RN I can't get the picture of antibodies with 6-packs of beer in her brain out of my head! Anybody gotta tissue?

Hey Alex, Where have you been hiding?? How are ds's teeth? All perm teeth grown in? Sorry this dance continues for your family. Just had an appt with new ped for both girls and it was unfortunately predictable. All I got out of it was scripts for both girl's swimmers ear. And lectures about vaccines and meningitis. Grrrr. Thank goodness I had a letter from Dr B for both girls. I love the way they taut their vaccination rate in the waiting room. Do they get some type of monetary bonus from insurance companies for high vaccine rates? I'm not a big conspiracy gal, but it sure has me wondering. Oh yeah, and he recommended therapy for all we've been through (sigh) Missed you. Hope to see you around more. Jill