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gremlin44

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Posts posted by gremlin44

  1. Curious if anyone's PANS kid wears contacts? Did they cause a flare up in your child? My almost 13 y.o. is begging for them.

     

    Part of me is tempted to get them--he's ruined two pairs of glasses this year in rages, and at this point they are held together with glue until insurance is willing to pay for another pair. But I'm worried that the irritation they will cause to his eyes as he gets used to them will trigger him (everything triggers him--allergies, growth spurts, teeth coming in). Do you think that after an initial period of getting used to them then his body will accept them and it won't cause further flares?

  2. I got an email from the school nurse pointing out that the third shot in the hepatitis series is required for students in our district by 5th grade. My son just entered fifth grade this year and I had forgotten about it. She needs a medical exemption or proof of an appointment to get the shot by the end of the day.

     

    He has had 2 IVIGs from Dr. K--in summer of 2010 and summer of 2011. He still flares up when he gets sick or is around lots of sick people, but in a mostly controlled way. He is on daily Augmentin and motrin.

     

    I don't remember what the current medical advice is and what the view is on the hepatitis shot at this age in particular.

     

    Help!

  3. My son had IVIG with Dr. K under UHC (out of network) 2 years ago. It was covered.

     

    We just started the process to have another one this summer. Under UHC's current position papers, PANDAS is an approved reason to do IVIG. They have a list of ICD codes for IVIG, but none of them are ones that were used by Dr. K for the first one. He will be filling out and faxing in the preconfirmation form soon, and I want to try and make sure that we use codes that are acceptable to UHC.

     

    Anyone do a recent IVIG through UHC and know what ICD codes were used?

  4. My husband is looking at a new job and I asked him some questions about their insurance policy.

     

    We have UHC PPO and had an IVIG with Dr. K last summer...it was approved.

     

    This potential job is with a national company who offers BCBS PPO. It calls their whole health care an Allegis Group and has info on Carefirst.

     

    So, does this differ from the info that I'm seeing with peoples' plans being listed as BCBS of State XYZ? We live in Illinois but the company the job is for is national and the benefits policy says "No matter how well you take care of yourself, medical issues will arise. With Allegis Group’s CDHP, you are

    covered by the BlueCross BlueShield Preferred Provider Organization (PPO) plan.

    With our BlueCross BlueShield PPO plan, you do not need to choose a primary care physician and referrals are not necessary.

    You have access to see a healthcare professional inside or outside of the national BlueCross BlueShield PPO network."

     

    So, is this different? What kind of results have people got with national BCBS PPO for IVIG (I anticipate DS1 will need another).

     

    So confusing. We've been with UHC for 18 years now and I don't want to change.

     

    Thanks!

  5. I was away from the board for awhile, and missed out on the new things like lyme and myco. I've been reading a lot more since our IVIG with Dr. K in July.

     

    Am trying to figure out the myco P stuff. My son was exposed to strep (but did not get sick) twice around the time that his PANDAS began when he was 4. But he also had walking pneumonia twice when he was 2. Since he was 4 he's been on preventative and high doses of zithro at different times.

     

    Dr. K tested the ASos and IgGs and such, but not myco. Should I be concerned about that at this point, or does the IVIG and the initial 2 week high dosage of augmentin followed by daily maintenance augmentin take care of that? If not, how long do you have to wait post IVIG to test for myco-p? People mention the rage associated it, and that makes me curious because that has always been one of my son's issues (along with others).

     

    Sorry if this has been covered--I've been searching through the archives and trying to find a simple discussion.

     

    Thanks!

  6. We have UHC (stayed with them and are paying Cobra level payments even though my husband has a new job because as of earlier this year they claimed to be paying IVIG for PANDAS) and were worried when earlier this summer people started having problems getting IVIG coverage with them. We did IVIG with Dr. K August 6/7. We were told that the procedure codes he gave flagged a need for precertification, but of course, UHC didn't get it done in time, so we paid upfront and went ahead with it.

     

    Been checking the ins. co's website every day recently. And just today it showed up--it looks like they actually paid! Dr. K and the surgical center are both out of network, so it is 80% coverage after deductible is met

     

    The codes used were:

    279.9 Unspecified disorder of immune mechanism

    348.30 Encephalopathy, unspecified

    348.39 NEC Other encephalopathy

     

    I won't believe it until I get paper statements from them and have refund checks in hand, but WOOOOOOO!!!!!!!!!!!

  7. Has anyone seen or collected any data on the incidence of PANDAS in siblings? I have a nearly 8yo who was diagnosed shortly before he turned 4. I also have a 3 yo son....and that's who I'm wondering about. We have a clear genetic link to OCD--my father had fairly severe OCD. The 3 yo enters preschool this fall, which is where my elder son got his strep exposure. Needless to say, I feel like I'm going to be walking on eggshells this whole year, staring at his every behavior, wondering if it is the beginning of PANDAS. The older one just had IVIG, so this is on my mind a lot.

  8. Right now my 8 yo PANDAS son's obsessions revolve around urine/feces. He's constantly afraid he's soiled himself/his underwear/his clothes. Every wet spot on the floor/toilet/his clothing must be urine. He's always checking if we washed our hands, etc.

     

    Of course, a few weeks ago we had to potty train our 3 yo son to be ready for preschool this fall. So now we're always asking the DS3 if he needs to go potty, is he sure, are his undies dry, make sure you wash your hands, you need to wipe better, etc, while telling DS8 to stop worrying about his undies, they are clean, no he doesn't need to go to the bathroom again, stop wiping over and over. What a great combination!!! And my 3 yo knows it bugs the 8 yo, so he gets off the toilet and chases his big brother down the hall, naked and singing "PEE, POOP ON ME!!!", while big brother shrieks and runs away.

     

    The 8 yo just had IVIG, so I'm keeping him away from the public in general right now. I just started having a friend or two over whose parents I've interrogated as to their health status. The minute they walk in the door I have them wash their hands. And then I watch them like a hawk to make sure they don't share cups or snacks. Gee, whose phobic now?

  9. *waves* My son and I were there on Friday for our first day (the non stop talking boy in the middle cubicle.

     

    My son was not hyper before, but on Saturday he was WIRED!! Non stop talking to Lana, refusing to sit or lie down. The minute our movie was done he was up and trying to visit the kid in the other cubicle. Lana even told me to take him and his IV pole for a walk through the building, up the escalator, and around the 2nd floor. He never got drowsy from the Benedryl, never got cold, and is going full speed + 10 today. Me--I've got the headache and nausea and the exhaustion!!

  10. My 8 yo son's IVIG is this Fri/Sat with Dr. K. I'm completely comfortable with the procedure itself.

     

    What is starting to give me anxiety and panic attacks is the "turning back of the pages" total regression/symptom flashback that Dr K and many on this board mentioned.

     

    When he says a large percentage, how many?

     

    Did anyone here not have that big or long of a terrible post IVIG period? We got scheduled as soon as we could, but my son's school starts Aug 24. Terrible timing, but we couldn't get earlier and we couldn't wait til next summer.

     

    My son can get physically violent with me when he is in a high PANDAS state. He has a 3 yo brother (who he would not hurt) and I don't know how I'm going to manage restraining the oldest around him.

     

    I don't want false hope, but I keep hearing Dr. K's voice echoing in my mind "We call it a parental suicide time."

  11. Dr. K's office told me to call UHC/PPO to ask for pre approval. I called UHC and gave them the cpt codes and they said they don't need to give me pre approval/cert for this. And of course, Diane is gone for the day now.

     

    Huh?

     

    I do know Dr K and the surgical center are out of network for me.

     

    I'm just so afraid of messing this up. So basically I won't know until I get a bill, is that it?

  12. I just had an in person consult with him today. Already had a PANDAS diagnosis for my son, wanted to see if he would be a good candidate for IVIG.

     

    He told me that parents can decline the steroid burst. Because I want to get this done before school and give my son a few weeks to recover/"turn back the pages" before he starts 2nd grade, I did decline. IVIG is scheduled for Aug 6/7. He was not upset or pushy about the steroid burst in any way.

  13. I have a nearly 8 yo son with PANDAS. It has gotten considerably worse this last school year, so I was overjoyed when one day I heard via the grapvine that UCH covered IVIG. We live in the Chicago area, so we decided to go ahead and get an appt to see Dr. K.

     

    My son is supposed to see Dr. K tomorrow afternoon. I haven't been on these boards for a while due to many other life issues, but I decided to pop in tonight to read up on IVIG. And now is it correct that I am seeing that people are having problems with UHC denying IVIG coverage?

     

    What's the most current experience people are having with this? This is why we've kept our COBRA coverage (it is with UHC) instead of joining my husband's plan through his new contracting job (he was laid off from Nov-April). Augh!!!

  14. My 4 year old is now on a once a week (2 doses that day) prophylactic dose of Zithro for PANDAS.

     

    He had his first double dose day last Saturday. I've noticed this last week that at bedtime he is suddenly very thristy and drinking a lot of water. This kid normally doesn't drink much all day.

     

    Has anyone noticed a similar symptom in their child?

  15. How long after the end of the first round of antibiotics should you see the symptoms "end" (I know from what I've read that some kids have small symptoms that persist and are worked on with CBT)? Some things I read said initial episodes last 30-45 days, but I couldn't tell if that meant from the time of the first OCD behaviors or if that started from the day the antibiotics ended or what.

     

    His doctors and I would prefer not to have him on a prophylactic dose of penicillin due to his age and weight (barely 34 lbs). We have an appointment with a child therapist who does ERP on Thursday.

     

    I feel so overwhelmed and confused at this point. I don't know if I should drag him back to the doctor for another blood test for the DNAse-B--he was pretty upset by the first blood draw. Yes, it might give me an answer. But do I need the certainty of that when no one is disputing that he has PANDAS? Would I be doing it just to satisify myself considering that his treatment plan is for PANDAS? Is it safe for me to just wait and see what happens--which would theoretically show us one way or the other if it is PANDAS or just a bizarrely rapid onset of OCD in an abnormally young child?

     

    Current plan is daily probiotics and flax seed oil in his homemade yogurt smoothies. Chewable elderberry tablets to boost immune system plus chewable vitamin. Right now twice weekly chiropractor visits for him, will go to weekly after a month to boost immune system. Starting therapy on Thursday. His teachers at preschool know, and a letter has been sent out to the parents of his classmates asking them to notify the school/us if their child has strep or an upper respiratory illness.

     

    I just feel like I don't even know where to start, and yet everyone around me seems to think I should already be an expert on the topic.

  16. I'm new here and am trying to figure something out.

     

    I, my pediatrician, and a pediatric neurologist all believe my recently turned 4 yr old son (9-11) has PANDAS. However his rapid swab test and blood work came back negative.

     

    We know there was strep in his preschool class back in May. On September 6th (2nd day of preschool this year) we got a note saying that someone was sick with strep. On September 10th he was hot, tired, complained of a sore throat in the morning, stuffy headed. On September 11th he seemed mostly recovered. We figured he was just crashing after his birthday party on the 9th.

     

    On September 25th Kevin started counting in sets of 3s "1, 2, 3." As the day progressed he might repeat a word 3x ("Mom, I like Fergus. Fergus 1, Fergus 2, Fergus 3." or "Thomas, Thomas, Thomas"). He had never done this before, and it lasted all day. The next day the counting was still there, getting stronger. He had a period of time that night where he insisted he had to pee every 2 minutes for nearly an hour. The next day (Sept 27th), more counting and I noticed odd facial twitches as he was going to sleep at naptime. 28th--counting, severe facial tics at bedtime, more of the repetitive peeing. 29th--counting, sudden obsession with handwashing, chewing on his shirt.

     

    On the 29th I took him to the ped after having spent the last two days reading articles about PANDAS. He seemed to match the symptoms, especially when one article mentioned boys presenting with sudden daytime urinary urgency. My father had OCD, so he has the genetic background. The pediatrician has had a few other patients in her practice with PANDAS and she seemed to think he has it. The rapid throat culture came back negative. I asked her to do the blook draw. On Oct 2nd those results came back--negative.

     

    On the 2nd we saw a pediatric neurologist. She examined him and said that he seemed fine neurologically. She did not notice any choreiform movements or tics, though I observed several while I was there. She said she believed he had PANDAS and she had several patients with it. She said none of her patients ever came up positive on a strep titer by the time they got testedm, so she was not concerned with that.

     

    I had asked for a copy of the blood work results. Just the other day I was looking at it and noticed that only one of the 2 strep tests was performed. His ASO was 7--but she didn't test the DNAse-B.

     

    Should I go back to for another blood draw to check the DNAse-B? Did we just fall into an in between time for testing? I feel with all my heart that he has PANDAS--the onset was so sudden, the symptoms are classic. I try to read about the two different titers so that I can understand them better, but I'm so tired and stressed out from dealing with the OCD (the fights over whether his underwear are clean or not, constantly having to clkean up after his handwashing, etc) that is isn't making sense to me.

     

    The only reason I'm concerned is because we finally found a therapist who works with young kids with OCD doing CBT/ERP. When I mentioned PANDAS to him he asked about the blood work--and made noises when i said it was negative. This was before I realized that we dind't have any DNAse-B results.

     

    Kevin was on a 10 course of amoxycilin. It ended on the 8th and during that weekend his counting and handwashing were nearly gone, but he was having these bouts of 30 minute period of just manic frenzied behavior. On the 13th he started sneezing, was congested, complained of sore throat, and became feverish at bedtime while he was being babysat (99.3). We started him back on amoxycilin on the 14th on his ped's advice.

     

    Does this sound like PANDAS? How can we find the strep?

     

    Forgot to mention--he had strep twice when he was 2 1/2. He rarely gets sick, and when he does, he doesn't appear very sick at all. Whenever we do take him to the doctor it turns out he is more sick than the doctor or I expected...like walking pneumonia.

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