L Haven Posted October 2, 2009 Author Report Share Posted October 2, 2009 Or else he will no longer treat my son. Whom he's seen for 6 years. I got this in an email, btw. Link to comment Share on other sites More sharing options...
thereishope Posted October 2, 2009 Report Share Posted October 2, 2009 Ooooohhhh. Not good. Tell him he's fired! My neurologist eventually blew me off. What is with these docs? Look at the situation from the outside. The neurologist doesn't know what to do and he is in over his head. It's his way of saying "I want out". He knows you won't hospitalize and that's his way of getting rid of you w/o outright saying it. Sorry if it sounds harsh, but that's what it sounds like to me. Link to comment Share on other sites More sharing options...
L Haven Posted October 2, 2009 Author Report Share Posted October 2, 2009 I actually feel much better looking at it that way! Thank you, Vickie. Link to comment Share on other sites More sharing options...
michele Posted October 2, 2009 Report Share Posted October 2, 2009 Have you seen a child psychiatrist yet? Our ped neurologist who we see for tics and ADHD suggested the psychiatrist when multiple meds were needed. I would definately look into one ASAP. You can find a new neurologist. Unless your son is harming himself or others he doesn't need hospitalized. You can get meds regulated in the hospital. We have been working on med adjustments for awhile now. Sometimes they just aren't right and need to be DC'd. It is tricky when you are taking multiple ones. We recently did this. I stopped him on the Abilify but we had to taper down. Then we stopped him on the Celexa and we had to cut it in half for a few days. Then we went off both and started over with one med Risperdal only and Clonidine at night. However if you are doing one med you can test for side effects easier. Are you getting a sense of which med is causing what side effect? I know on stimulants my son got more hyper and ticced more. I DC'd them, on Celexa he seemed angry and irritated. So I asked to DC it also. Did you start all meds at once or one at a time? I know some poeple here are seeing improvements soley on antibiotics but if your child has a spectrum disorder or an anxiety disorder/mood disorder the antibiotics may not be enough. If They have a chemical imbalance anibiotics won't fix that. Just go with your heart and do what you think would be best. You have the intuition and the mommy strength to do it. I wish we could get cured on antibiotics but I just don't think that will ever happen especially since his PANDAS has now become ananxiety/mood disorder. Even Dr. Latimer said she wishes people weren't under he impression that antibiotics will cure anything. Michele Ooooohhhh. Not good. Tell him he's fired! My neurologist eventually blew me off. What is with these docs? Look at the situation from the outside. The neurologist doesn't know what to do and he is in over his head. It's his way of saying "I want out". He knows you won't hospitalize and that's his way of getting rid of you w/o outright saying it. Sorry if it sounds harsh, but that's what it sounds like to me. Link to comment Share on other sites More sharing options...
chrisw Posted October 2, 2009 Report Share Posted October 2, 2009 Right now he is on (and has been for almost 2 years): Lorazepam, 2 mg a day Orap (shudder; this is a big gun of a drug, we agreed to it after IVIG didn't help), 4 mg a day (titrated up from 2 mg a day) Bupropion (400 mg a day) for depression. This was just upped from 300 mg. What do you think, Colleen? Lena Hi Lena, So sorry for what you are going through! I was just curious about your child's IVIG. In a previous post, you said that he experienced no relief after IVIG. Was he placed on prophylactic antibiotics after his IVIG? I noticed that you mentioned other meds but are you just now starting abx.? From what I understand, IVIG is basically going to be useless unless the child is protected from strep for at least a year. I hope the penicillan helps. Hang in there. Christie Link to comment Share on other sites More sharing options...
EAMom Posted October 2, 2009 Report Share Posted October 2, 2009 I totally agree with Colleen. Here is an article I often post. It explains about why pennicillin (amoxcillin) might kill strep in a test tube but the situation is very different in the body. http://www.entrepreneur.com/tradejournals/.../169459644.html You need the right antibiotic, and you need high enough doses....and you need to treat long term. Saving Sammy is a good example of that. Very few people on this forum have their kids on pennicillin. A good response (esp. in the middle of an exacerbation) to pennicillin is the exception, not the rule. Augmentin and Azithromycin are much more clinicially effective against both strep and PANDAS. (Azithromycin worked best for my dd and also has always cleared her strep carrier sister when she cultures positive.) I just feel that it is pure insanity to have a doctor recommend psychiatric hospitalization before they would consider treatment with the appropriate dose and type of antibiotic. I also feel that your docs were negligent to do IVIG but not ensure it was followed up with proper long-term antbiotics. Link to comment Share on other sites More sharing options...
L Haven Posted October 3, 2009 Author Report Share Posted October 3, 2009 We were never, ever told about antibiotics post-IVIG! The only way we've used abx is if we knew he'd been exposed to strep, we'd call asap and get a scrip to fill. Usuallly Amoxicillin. Link to comment Share on other sites More sharing options...
T_Mom Posted October 3, 2009 Report Share Posted October 3, 2009 We were never, ever told about antibiotics post-IVIG! The only way we've used abx is if we knew he'd been exposed to strep, we'd call asap and get a scrip to fill. Usuallly Amoxicillin. L Haven-- I am so sorry that you are going through this-- Where do you live? Can you consult with one of the doctors listed on this forum who have helped and had some experience with antibiotics? May not be a cure, but we have found it relatively benign treatment and has helped us tremendously. Why do you think the doctor is suggesting inpatient psych treatment? Is it the depression? A psych. recommended the same for my child but it was because her OCD was so crippling and severely affecting her entire functioning-- until after steroids and antibiotics there was a real change. Link to comment Share on other sites More sharing options...
L Haven Posted October 4, 2009 Author Report Share Posted October 4, 2009 T.Mom, we're in Boston. I will definitely check out the list of docs. Thank you! Lena Link to comment Share on other sites More sharing options...
lss Posted October 4, 2009 Report Share Posted October 4, 2009 T.Mom, we're in Boston. I will definitely check out the list of docs. Thank you!Lena Dr. Robert Fuhlbrigge in Boston, MA (pediatric rheumatologist at Children's Hospital Boston) Dr. Raif Geha in Boston (pediatric immunologist at Children's Hospital Boston; specializes in immunodeficiency) Daniel Geller at Mass General. Link to comment Share on other sites More sharing options...
EAMom Posted October 4, 2009 Report Share Posted October 4, 2009 Dr. Geller (psychiatrist) treated Sammy BTW. Link to comment Share on other sites More sharing options...
L Haven Posted October 4, 2009 Author Report Share Posted October 4, 2009 Thank you so much - all of you who reached out. The amount of information and experience in this forum is amazing. Best wishes for the health of all our children, Lena Link to comment Share on other sites More sharing options...
L Haven Posted October 5, 2009 Author Report Share Posted October 5, 2009 That makes a lot of sense, Colleen. Hmm. It was Dr. Fuhlbrigge who prescribed it, and I know he's thought well of on this forum. Link to comment Share on other sites More sharing options...
colleenrn Posted October 5, 2009 Report Share Posted October 5, 2009 Lena, Unfortunately a lot of really good doctors are still prescribing penicillin and amoxicillin for strep. It takes FOREVER for the AMA to finally make a change- it really does. A few years ago they were in the process of coming out with new guidelines for antibiotic treatment of strep, but it still has not happened. Although PCN and Amox work fine with some people's strep, b/c it has such a high failure rate, it really is not the best antibiotic to treat strep. Cephalosporins (such as Keflex or Omnicef) or macrolides (zithromax, erythromycin, clindamycin) are much more effective in clearing strep. IMO, I think it is best for most kids with PANDAS to be on one of these antibiotics. Colleen Link to comment Share on other sites More sharing options...
thereishope Posted October 5, 2009 Report Share Posted October 5, 2009 Someone else posted a bit back a post about the strep being resistent to amox. I think it was EAMom. I printed it off to take to the peds' office if he ever gets sick again. http://www.entrepreneur.com/tradejournals/.../169459644.html Link to comment Share on other sites More sharing options...
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