Tattoomom

Interesting! My son has MycoP induced PANS. And it was an immediate reaction. Just one pill made him bonkers!

This was the generic, too.... Lamotrigine by Teva.

I was wondering if a Hematologist would?? Since we already have a relationship with one!

Just curious, what type of doctor gives IVIG?

Lamictal literally made my son CRAZY! He was angry, violent and downright psychotic after just a few days of only taking 1 pill per day. His eyes were completely dilated and glossy. It was very strange. We stopped the Lamictal and asked the Ped for a course of Augmentin, in case it was a flare, and after being good for a while, I tried re-introducing the Lamictal and he went CRAY-CRAY again! After just 1 pill! So now we know, it was no coincidence. He even told me he felt "weird" on it. I will never give him that again. The Psychiatrist really wanted him to give it a chance, but I haven't told her yet that we tried a second time. I think she was thinking the first reaction wasn't connected. Wonder why it made him so crazy? It was seriously like he was possessed. I was scared

Awesome!

Well, my "specialist" is our Pediatrician. She's been very helpful to us, but is not a PANDAS doctor by any means. She wants to see us wean down to a preventative dose, but I have no idea how. We haven't been on steady abx long (Augmentin a couple months, before that was on Zithromax a couple months and before that Amoxicillin a couple months) We yo-yo'd a lot, trying to find what works. She's a BAD case. She's also on Zoloft and Tenex. My son has only been on Augmentin a few weeks, and the difference is amazing!!!! He takes Zoloft as well. My older daughter is still struggling some. I wish she could take Augmentin... I know it depends on the individual child and case, but I wish there was something I could show our Pediatrician about long term abx benefits. Any studies on prophalxsis dosing? Anything I can email her or print out would be great!

My 4 year old daughter is on Augmentin 600mg 2 x daily. My 9 year old dd is on Omnicef (allergic to Penicillins) 250mg 2 x daily. My 11 year old ds is on Augmentin tabs 875mg 2 x daily. My questions are: How do you know when it's time to back off the antibiotics? And when you do back off, how much is enough???

Lamictal dosage-- 25MG Take 1 tablet for 14 days, then 2 tablets for 14 days, then 4 tablets everyday. Is that how it normally works? Today is day 5 and he seems WORSE! He had a completely crazy meltdown today that resulted in an hour long rage/crying/screaming/throwing/punching the couch kind of behavior. Scared me to death and makes me worry it's medication related. The Ped. hasn't answered my plea for antibiotics. I'm feeling so helpless

They're not complaining of any symptoms you mentioned, it's all mental issues. Unfortunately, the Ped didn't want to give abx for a "flare." Ugh.

DS (11.5) and DD (9) have BOTH had flares of tics, OCD, crying, rage, etc... this week. I am convinced they've been exposed to strep and are reacting since they both are affected. DD (4) is on Augmentin for PANDAS treatment so she seems unaffected. What's the protocol for flares?? Do they both need abx? If so, for how long?

Oh, I disagree with her completely! I was shocked she was that ignorant about it, considering her partner is very knowledgeable. Thankfully, we've been seeing the other Ped

Called the Ped to ask her opinion on the Psychiatrist putting DS on Lamictal and she texted me this-- Psychiatrists do this, one drug after another, so you don't know what is the child or what is the medication reaction. PANDAS doesn't cause rage and tics as much as OCD symptoms. WHAT????

Mood= Argumentative, Depressed, Defiant, Oppositional, Angry, etc....

Anyone have experience with this drug being used for mood? DS (11.5) has tics and I saw the side effect list mentions tics, and I don't want to do anything to make his tics worse, but the Psychiatrist is suggesting we add Lamictal to his Zoloft.

Thanks for sharing all of that info! I looked up LANDAU-KLEFFNER SYNDROME, but that doesn't sound like her... I'll definitely ask the Ped though. Has your child had an EEG? The reason I ask is that it is most unusual to have a child with "receptive language" delay higher than expressive. Of course, I found this out the "hard way" but the end result when this occurred with my child was he was ultimately diagnosed with Landau Kleffner Syndrome (LKS). My son is likely dually diagnosed with PANDAS. He also has Central Auditory Processing Disorder. He has mild anxiety, some quirky OCD tendences and mild tic disorder. He is much improved but it has been a long 8 year long battle with us. LKS is very rare and trying to get able providers to diagnose or deal with this diagnosis is difficult. No different than PANDAs. Anyway, one of the things with LKS is that children lose the verbal realm but do not lose the visual realm. My son when he was tested at age 8 was significantly behind receptive and expressive verbally, reading etc , however, his visual IQ was tested to be that of an 18 year old. IF she has had IQ testing- any testing that is "all over" with great highs and lows in area or doesn't make sense should be evaluated more closely. I would suggest by NeuroPsych to go over results, not just Dev Peds. I would also suggest a Neurolgy appt if she has not already been and ask for an overnight EEG. My son was ADOS negative thus did not meet criteria for Autism yet alot of his scoring looked like an Autism like profile. Don't let some egotistical doc worry you on what you should or should not be doing as a mother. He is not raising your child nor walking in your shoes daily. You can home school your daughter and still get her the help and resources that she needs for developmental delay, if that all it really is. We have 8 years of multiple specialists and only 2 have ever had any ideas and modalities that were helpful in anyway over what I was already doing, had researched or was working on to help my son get better. No doc is going to care as much as you do to do the right thing and not give up.

Fragile Child Syndrome-- It basically just means she has had a rough road medically and we spoiled her because of it. Now she expects the world to cater to her While all of this started with a horrible sinus infection, strep has been involved, so I assume it's PANDAS. Our Ped. is helping us. DD had a ton of blood work done back in May and been on and off abx ever since. We just recently switched from Zith to Augmentin, today's day 10.

Yep. 14 day supply of liquid.

Yep, it's refrigerated.

Also, if you are giving liquid some parents say that the liquid aug... Starts to lose its potency after a week or so. So by day 14 yours may not be as effective. Just a thought. Oh ok. Yeah, it's liquid. That stinks since hers is a 14 day supply

What's a good spacing since she takes it twice a day? We always pump the probiotics! I usually wait 2 hours after the abx to give the probiotics.

Scary thing is, Every single person I have talked to who has taken their child to this doctor has had a bad experience. Rumor has it that he basically does not diagnose autism because of insurance coding/payment issues. So, he will tell you your child doesn't have autism, even if they do, because diagnosing something else (like global developmental delays) will get better payment from the insurance company/Medicaid. He believes that most "autism" symptoms are created by bad parenting. Nice huh? Correct- Fragile Child Syndrome because she has had a rough road medically. She was diagnosed with Autoimmune Neutropenia at 7 months old and has had a bone marrow biopsy, been put under GA, hospitalizations, countless ER visits, hundreds of blood draws and shots at home for years to boost her white blood cell count. And she just turned 4. She was my "bubble baby" because she had no immune system and we really hovered over her (helicopter parenting!) She has been in speech therapy at our local children's hospital for about 6 months now. If our insurance changes, I will pursue Child Find with the school system. Thanks for the computer program recommendations! When did your DS start to "fill the gap?"

Thanks! I needed to hear that

the facts that you discuss her only make me think it is pandas. . my ds has factors of lots of 'labels' but not enough to be diagnosed with them. . . thankfully. the savvy behavioral ped we first saw was evaluating him on her mental checklist. .. . behaviors seem like asperger -- nope this appt is totally NOT asperger-like; coudl be hearing/auditory -- nope, just proved that wrong; etc. . then, what you describe sounds like OCD, but he's awfully young -- there's something called PANDAS. this doc reminds me of something a Lyme doc said at a conference. . . 'okay, you're saying it's not Lyme -- then figure out WHAT it is and help thse people!" i apologize if i'm wrong, but it sounds a bit like the doc is trying to lay blame on you. he agrees she's delayed and things is quite different than what he usually sees -- what is he suggesting? public school and vaccs? when i hear things like that, i just have to think. . . if only it were that easy! i know you mention you homeschool but does the school system have any type of help to offer -- through ChildFind or something that coudl help without you being in the system? We had ds eval-ed by them when he was in private kindergarten. It wasn't a helpful eval b/c he met all levels he needed to -- but if she is delayed for age, they may be able to help. just an idea. He said she has Global Developmental Delay, is Communicatively Disordered and suffers from Fragile Child Syndrome. He also told me I was not qualified enough to homeschool her with her delays, he lectured me about immunizations and said my "gentle parenting" doesn't work on "difficult children" and suggested my husband and I take his parenting classes and he promised me I would have a different child in 6 months, but I'd have to be willing to be a ######. Literally verbatim. Be a ###### to my dev delayed child? In a nut shell, he advised us to get her up to date on her vaccines and ship her off to school. That was his advice. COMPLETE WASTE OF TIME! Edited to add- *Oh, and ODD. I almost forgot that her tantrums and meltdowns are because she has oppositional defiant disorder, which I don't believe for a second!

I basically told him that he was entitled to his opinion and we agreed to disagree on a lot of things. I know we need a specialist, but that's so much easier said than done We are a one-income family and I'm a SAHM to 4 kids. We have health insurance but no PANDAS specialists within 6-8 hours of us. We cannot afford to travel far or often. It's hard. I don't know how some of you do it!