ajcire
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Posts posted by ajcire
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I really do understand the injustice with all that. I do get it I think my post was misunderstood to suggest I didn't understand her intention with the post. I did get it.
Or how a doc will have no problems rx'ing long term Azith. to treat Acne (as it should be) but won't rx the same med to a child with PANDAS (b/c it is "dangerous" or "unproven" or not something CHOP would do?). So we treat to prevent Acne scars but won't use the same medication to treat (or prevent) a PANDAS child's mental illness.
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Our ENT said it was regular procedure to give IV antibiotics during the surgery. He did for both my pandas and non pandas child. It wasn't a special request from me, just how he said they do it.
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Fixit, I really do understand and agree with the gist of your post. No worries at all and certainly no hurt feelings.
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I get it.. I really do get that there are a ton of things covered that don't make sense to be covered when things of more importance are not.. It was something about the phrasing of it that just hit a nerve I think
I think as mothers we would all hand our boobs and our coverage over if it could help our kids. But if insurance would cover a tummytuck for me... well... (that was a joke... I will forgo the tummytuck too
No worries, it's all good.
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I will politely disagree with you. I am not suggesting that breasts and looks are more important than sick children. I am suggesting that I would never tell someone that the money for their implants due to a mastectomy should have gone toward my child and I'm not jealous that a cancer survivor's implants are covered. Perhaps it was not so much the point you were trying to make as the tone in the turtleneck comment... you know.. so we had to cut your boobs off.. just put on a turtleneck and get over it because my troubles are bigger than yours. If this was the case well.. there are worse people off than my child..if we go on that theory than my child doesn't deserve help like the next kid and I should understand that and just let everyone else have the money to help their more ill child. My problems not that big.
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Fixit, I know what you meant, I got the point of what you said but "put a turtleneck on and put the money towards our kids".... you are referring to people's mothers, sisters, wives, daughters... something about that breast cancer comparison didn't sit right with me. What might seem trivial to spend money on to you might not to them.
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I might be in the minority here but I did it and even though my kids numbers fell in the pandas range... it didn't really tell me anything and it didn't change any plan of treatment.
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Thanks Momofgirls. The antibodies are from the bacterial infection. 'auto-antibodies' suggest that the antibodies that were supposed to target the bacterial infection, but went awry and erroneously attack a part of the body, in the case of pandas, the brain? so if no antibodies, then no auto-antibodies, i would think.
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Glad to hear you have found your answers! I have been trying to follow all this but its all so very confusing. I have a few questions that I hope make sense.
1) Does this mean your son (or any of your kids) does not have pandas?
2) What is DNA testing for lyme? Why doesn't everyone just go to that if it's what gives more clear answers?
3) How did the dr. discover leaky gut or is it assumed based on symptoms? Meaning is there some sort of test for this? How did he discover a parasite?
4) This one might be confusing.. I'm hoping it makes sense when I actually try to put the question in words. I think you said your child does not make antibodies because he got it utero but if that is the case than what is the elevated camk measuring?
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I don't. If I was going to do that I would never be able to send them. Unfortunately there is always strep in the school. Plus I wouldn't even know. I know that when my kids have had strep I have never specifically called the school to tell them it's strep and neither do their classmates.
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Ditto to trying the 1 mg first. I just started using it sometimes with my son who will say he can't sleep and it's enough to help him. I made sure to tell him that the dr. said that after he takes it for a few days he might not need it anymore because the dr. said it will teach his body to sleep... I know that's not true but I was afraid he would start to think he needed it. In our case I used it for 4 nights and on night 5 he did ok without it. The power of suggestion....
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From what I have learned, I believe the lyme could be what is prohibiting the body from dealing with the strep and this may be why your son still has high strep titers while still on antibiotics. My son had elevated strep post 4 IVIG's and while being on the prophylactic dose of Augmentin. HIs strep titers went down only after we began treating the lyme with multiple antibiotics.
Elizabeth
I guess in the end it doesn't matter so long as the titers went down but is there really a way to know if it was from treating the lyme or more just that the combination or heavy dose of antibiotics used for the lyme took care of the titers themselves?
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You said the aso and antidbnase are high.. Can I ask what the numbers came back as on those?
Why would Dr. B not be concerned about the lyme? Does he think maybe it's not lyme or is he just more concerned about the strep at the moment?
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Pink eye is often connected to strep... Prior to my knowing about pandas, I brought my ds in to the ped for pink eye and she said she wanted to culture him because she said it was often the result of untreated strep... to my surprise he was positive for strep.
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I feel like there is no point in knowing numbers on my other 2 even if I do suspect pandas until I can figure out what the heck to do with the info I have on my first.
So sorry! Has nothing worked for your first? I apologize again for being able to keep track of people's stories.
For us, at least we know where to go for help. She may or may not respond to treatment as her brother, but at least now we understand better the whole OCD thing, we know there are some things that help, it is not hopeless. We'll just have to be a lot more cautious about the cost of different diagnostic/treatment options, as we may in this for the long haul. But I know they'll get better, eventually.
I guess what I mean is that nothing was different in the treatment of my son based on the results of the cunningham test. He scored 141 and all the other things on the test were elevated... but it didn't help me treatment wise. I guess it confirmed for me what I already know.. that something was going on. I have seen one of the big pandas doctors. I am one of the more cautious people in terms of treatment and because my son is mild I am not comfortable taking any drastic measures just yet. I know that could change in the blink of an eye.. So while I am curious what my other 2 kids numbers would be.. it will likely just make me crazy to know because I wouldn't jump on treatments based on that. I do feel better prepared to recognize signs in my others but at the same time sometimes I need to step back and remember that just because my 3 year old is throwing a fit and stubborn and repeating his request over and over.. so do many 3 year olds.. just based on the fact that they are 3. I watch my 6 year old because she has had chronic tummyaches and a few big meltdowns (but then I stop and say so do all kids at one point or another) and because she had constant documented strep throat I did get her tonsils/adenoids out. I guess I might not have rushed to do that if I didn't have pandas on the brain although in her case the recommendation came from the ped just based on the number of positive cultures she had.
I didn't mean to sound so negative.. I guess I still don't really understand the cunningham test results.
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I feel like there is no point in knowing numbers on my other 2 even if I do suspect pandas until I can figure out what the heck to do with the info I have on my first.
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I apologize if you mentioned this somewhere else already and I just missed it but what symptoms are you still seeing in your daughter?
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I think it's pretty standard to use iv antibiotics during the procedure regardless. My ENT said it was standard.. he did it for both my pandas and non pandas child.
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Philamom, I'm not sure I understand what you mean by that. What was his response to your daughters results?
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I am confused. Dr. K has only had 2/400 patients with lyme? Just from posters here aren't there more than that? Does he not put faith in the igenex test and if not did he express why?
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My son is 8 and he doesn't present and those moments of inflexibility that you describe are very common here too. We have had the exact same thing over a show and shower. It very much looks to someone on the outside just like a bratty child but I suspect just as you do that it's beyond that for my normally mild mannered son. He just gets stuck on what he is saying and can't see past it. I hadn't thought of it as an ocd thing but now I can see how it could be for my son. He too is very time fixated.
Mati's mom... that is a good point and definitely something that becomes hard to navigate through.. what is a controlled/learned behavior and what is beyond their control.. although I feel like a certain tone comes over my son when he gets like this... as if he's in a different place when acting this way.......I feel like it's like he knows he's not being logical but can't do anything about it.
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Is this more for the immune compromised kids who are continually getting sick?
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Peg, that is interesting that you said that... we have 5 pediatricians in our practice. I recently noticed that one of them is a DO and I had not idea what it meant so I had looked it up. He is the one in the group who told me that momma's know best and that if a mother comes in to him saying something is wrong and he doesn't see something wrong.. he keeps looking because momma almost always knows. He couldn't help me with pandas but said I wasn't crazy and referred me out when the other doctors there told me that I just needed to use tough love. He is willing to swab them anytime as well.. just wish he was comfortable with prescribing the antibiotics.
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What symptpms do your kids have that go with the lyme diagnosis? Physical symptoms?
On the issue of Pandas vs. Lyme. I started down the Pandas path in February and totally believed that I finally found the answer to my D!2's long term symptoms. I immediately began Pandas treatment of High dose IVIG and low dose antibiotics (in March 09). The treatment was not working and in August I consulted with Dr. B who ran a large panel of blood work - including Western Blot Lyme - which I had done at Lab Corp (not Igenex). I did not think my kids were at risk for Lyme and was shocked to find out that both of my children tested positive for Lyme. Both of my children also have symptoms to support the diagnosis. We were fortunate to be able to get in with Dr. Jones quickly and spent in excess of 4 hours in his office for our initial consultation. In the three weeks since our consultation, I have had to call Dr. Jones office multiple times with questions about my kids symptoms and treatment. I am extremely pleased with the fact that his caring staff takes my questions to Dr. Jones and returns my calls with answers in a timely manner. The cost of this is covered by the initial consultation fee. I still cannot help but wonder if there is some connection between Pandas and the Lyme. I am hopeful for answers.
going to son's pre-op appt. today for upcoming T & A
in PANS / PANDAS (Lyme included)
Posted · Edited by ajcire
That sounds strange to me. I really thought it was just standard practice to give iv during and antibiotics for a week after. The only thing my ENT did for me that he said was not standard for him was a week pre-op of antibiotics but he had no objections to doing it.