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NVAmom

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Everything posted by NVAmom

  1. Hi All, ds12 and dd8 had follow up with Dr L today. Both have had significant setbacks since our last visit. She said they both need IVIG - 1/month for 6 months. Insurance does not cover Dr L nor ds12's zith.... let alone IVIG. My husband is up for a change in insurance in June and wondering who covers IVIG. Also curious to help in appealing to our current insurance company. Thank you!!!
  2. I was there on Monday too. I sent you a PM.
  3. Thanks All! I feel better knowing I'm not the only one that goes in determined to say one thing and end up saying everything I didn't want to say.
  4. Both kids to GI dr this AM. Dr ' what exactly are they taking antibiotics for' Me 'an autoimmune disorder' Dr 'What is it called specifically' Me 'pandas' - usually call it post infectious encephalitis after strep and follow up further questions by saying pandas....frustrated 'pandas' came out first Dr 'you realize that's highly controversial. how exactly were they diagnosed. Can't even remember exactly what I said at that point. Mentioned Dr L & Dr Cunningham tests. I said I would like the doubters to explain why my Ds's ODD did not respond to a fistful of psych drugs but went away with antibiotic treatment and no longer takes any psych drug. Dr:' your here for GI issues so lets stick to that' Really??? Didn't you bring it up? Sorry for venting.... Just tired of needing to 'validify' my Children's health issues to school, friends, family and anyone else. Why couldn't I have said post infectious encephalitis ....
  5. My ds started Augmentin in Oct 2009. Initially we saw slow, steady progress. However, Fall 2010 He seemed to have plateaued. He switched to Zith in Dec and we saw further progress. He was switched by our immunologist. Our neurologist commented that zith was better for inflammation bug augmentin is better strep protection. I asked about doing both. She didn't want to do that because he is better than his baseline and was concerned there wouldn't be anything left to use if he really needed it. My dd takes Augmentin. Initially seemed to progress but has been steadily losing ground after getting sick and brother having the flu. Made a little progress after steroid taper but now worse than when she started augmentin in Oct. She gets her tonsils out on Monday so I'm praying that helps. Hope that helps.
  6. My ds was getting canker sores all the time. Each time caused an exacerbation of pandas symptoms. We saw lots of drs for it. I was told it was an autoimmune response.Tried lots of different things until he started valtrex 2x/day. If he gets a sore it is increased to 4x/day. He was getting sores at least 2x/month. Since starting valtrex in Nov he's only had 2 sores which were not as bad and healed quicker than before valtrex. The immunologist said he doesn't understand why the valtrex helps but agrees that it does.
  7. We have not pursued IVIG. However, our dr said PANDAS is a clinical description of symptoms- not a diagnosis for coding. According to our dr the codeable diagnosis is Post infectious Encephalitis after Streptococcus. Hope that helps.
  8. WOW! I know what a struggle it's been for you guys. I'm praying the progress continues and soon your will have the same progress to report for your other dtr,
  9. One more ditto. I agree that you may end up saving money in the long wrong. I know it seems like a lot of money...and it is... BUT dr L is not a typical dr. Especially compared to those that take insurance. You will be amazed at the amount of time she spends with each patient. (which means be prepared to wait a loooong time in the waiting room but sooo worth it) However, it's not just the money. I honestly could not handle 1 more in-network dr dismissing my concerns and acting as if my husband and I needed parenting skills. I'm not as strong as some on this forum. Even though I knew deep down my child was sick and it was not parenting skills you can only hear it so many times before you start to wonder if you are crazy. After seeing dr L and being treated with compassion and respect I realized paying out if pocket was worth it. Then when I started seeing healing after starting treatment with Dr L it reaffirmed our decision again.
  10. Thank you for taking the time to share that healing is possible. I pray he continues to be symptom free.
  11. After reading the posts I started thinking that i had not checked my ds12s wart recently. He showed it to me probably mid-June. I brought it up at his well child check up end of July. The ped looked at it and confirmed it was a wart. She offered to freeze it. I asked if this would cause a response to the immune system. Of course than answer was, yes. Since it was on his foot (outside of foot right above his arch) and not bothering him I did not want to risk freezing it and eliciting an exacerbation of pandas symptoms. I asked ds to see ihis foot this AM And it was completely gone! Curious if it had anything to do with the valtrex he's been taking since Nov for recurrent canker sores or just a coincidence.
  12. Great point forpj! Definitely trust your instincts! I know your apprehension though. I need to request a 504 plan at school for my dd. They thought I was crazy when I requested it for my ds when the school only saw minimal difficulties with his school work. Now I'm going to request it for my dd and they see no problems.
  13. Ds12 started treatment for the flu on Saturday. Physically he is recovered with the exception of a lingering cough. No fever since Sunday. BUT now the rages and OCD is in overdrive (worse than it has been in the last year) My question is...do you send your pandas kids back to school as soon as the illness passes or give extra time for the immune system to calm down? He has not been back to school yet. Thanks for any input!
  14. I have 2 children. Both have been diagnosed with pandas by Dr L. However, in our situation they had / have very different symptoms. Dr L said there is a high incidence among siblings. Which makes sense, if Pandas kids have a genetic predisposition than it makes sense siblings would often be positive for pandas too.
  15. At my dd8's first appt with dr L I brought up the ? Of removing her tonsils. Dr L said she did not want to Jump the gun but wanted to wait and see how things went. I brought it up at dd8's follow up visit and she looked at dd's tonsils again and said we should look into removing them. So, I don't think she automatically recommends it for everyone.
  16. Thanks everyone for your responses! We are home now. She gave a script for tamaflu (swab was negative but she said it's not very reliable), oral steroid and inhaled steroid. Hoping he does ok tonight. A little nerveous. His fever is 102.7 and he had ibuprofen 1.5 hours ago.
  17. At urgent care with ds 12 -waiting on dr. Sore throat yesterday, fever last night. Woke up in middle of night and couldn't breathe. Went outside in cold air - breathing much improved. Now crying when he coughs because it hurts and temp is 101.5. My question is: I read croup can be caused by Mycoplasma pneumoniae. So is there anything specific I should ask about for treatment? His current pandas treatment is 500 mg Azithromycin and valtrex 1 gm ( due to recurrent canker sores) per day. Would myco p be a different treatment? Thank you!
  18. DS was 7 being evaluated by psychiatrist due to severe separation anxiety. 'what do you mean he won't stay at a birthday party or at a friends house without you? Aren't you the adult? Tell him he has to stay and then leave' unfortunately, We knew nothing about pandas at the time...so.... I left another appt with a professional that was suppose to help my son...Feeling like it was my fault just like I felt after leaving all the other appts with all the other professionals.
  19. 1st symptoms -2 years Correct Diagnosis and treatment begun - 11 years Not sure what normal is for ds as he has had pandas 90% of childhood. However, since treatment : rages and separation anxiety are almost nonexistent. Tics and OCD continue but no longer control his day. Hand writing slowly improving. Hope that helps
  20. Thanks! Just called and they don't take our insurance. I'm beginning to feel like our insurance card is one of those fake credit cards you get with the junk mail. Looks real but actually useless...
  21. Does anyone know of a PANDA friendly Pediatric ENT in either VA, DC, or MD? Dr L referred us to one at Georgetown but they are not in network for our Insurance and we have no out of network benefits. UGH.... Thank you
  22. I agree with making an appt with an expert and then canceling if your dtr no longer needs it. As long as you cancel the week before there should not be any cancellation fee. Better to call for the appt today and find you don't need it 2 months from now....then be in a crisis and call to schedule an appt and find you have to wait 2 more months. In terms of seeing a neurologist....remember Dr L is a neurologist. I wouldn't dismiss the local dr because they are a neurologist. I would call ahead. Ask if they treat pandas, and if so, how do they treat pandas. Sometimes you can get them to help you fight the insurance to pay for appts with one of the experts. Granted....it takes a very honest and compassionate dr .....because they have to be willing to say 'I don't know how to treat this and don't know of any local dr's that do' but there are some out there. I pray you can find what is right for your dtr.
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