ShaesMom Posted April 29, 2011 Report Share Posted April 29, 2011 IgeneX told us to wait until right before her next IVIg before we have her labs drawn and keep her off abx. Last night my entire family was awake until 1 am because of her raging. It started at 10:30. Luckily there was no school today so my ds was able to sleep in as were myself and dd. The attack started because it was time to hook up her G tube for the night feeding. She refused and all he.. broke loose. She ended up losing half of her calories for the day and she is already tiny and can't afford to miss calories! This is not the first time she has refused to hook up during one of her episodes. (The rest of the time she does just fine with the tube & feedings). She can't keep missing feedings! I'm afraid her body is going to shut down even more. I highly suspect that this attack was partly driven by a PANDAS reaction. We live in the neighborhood where all the kids play together after school. There is one little girl who hasn't been around a lot lately. Every single time the girl is home and dd plays with her we have a major attack that evening (I have everything written down). The little girls older sister is my dds age and good friend. Apparantly the state offices are closed today and their Mom is off work because both of these girls have already rang our doorbell to play this morning. I don't want my dd near either one them but forbidding her to play with them would mean forbidding her to play with anyone today. Anyway-back to where this post started...... On Monday I'm taking her in and having the blood drawn and then heading straight to the Pharmacy to get some abx for her. Our family cannont continue to live this way. Link to comment Share on other sites More sharing options...
pixiesmommy Posted April 29, 2011 Report Share Posted April 29, 2011 I hope my LLMD will get back with you. I know that Lyme is sometimes treated with IVIG, so if anything, maybe it will draw out more bands (I'm hoping!!!) You know my thoughts are with you and you can call anytime you want to vent/cry/talk. Link to comment Share on other sites More sharing options...
philamom Posted April 29, 2011 Report Share Posted April 29, 2011 Praying for your family and some relief soon! Link to comment Share on other sites More sharing options...
mama2alex Posted April 29, 2011 Report Share Posted April 29, 2011 Good call on keeping her away from the neighbor girls. Tough, I know, but best for all of you. Any chance you can speak frankly with their mom about needing to keep Shae from being exposed to all illness right now. I think if you say she has an immune deficiency, most people get that, from having seen it in the mainstream media and movies. Praying for you. Hang in there - I think you are close to getting help. Call me any time you need to just vent. Link to comment Share on other sites More sharing options...
ShaesMom Posted April 29, 2011 Author Report Share Posted April 29, 2011 No response from your Doc as of yet Pixiesmommy. I've managed to keep her away from the neighbor kids so far but it helped that we were at the behavioral therapist this morning. I tried to have a talk with her about my thoughts on hanging around with the little girl and was met with nothing but opposition. Why does this have to be the kid who thinks she is smarter than Mom & Dad. It's really windy here and the next door neighbors trampoline's net has blown down so that will keep them off of that today. If they can't play outdoors they all usually end up over at my house (all 8 of them and sometimes some extras). Ugh!! The Mother is one of those who tunes out/never bothers to ask about Shae's health. She was pretty nice about it at first but then once it became chronic she kinda disappeared - YKWIM. She is definitely not someone I can approach and say "dd needs to avoid playing with your dd for awhile." Link to comment Share on other sites More sharing options...
matis_mom Posted April 30, 2011 Report Share Posted April 30, 2011 (edited) The Mother is one of those who tunes out/never bothers to ask about Shae's health. She was pretty nice about it at first but then once it became chronic she kinda disappeared - YKWIM. She is definitely not someone I can approach and say "dd needs to avoid playing with your dd for awhile." Sorry but that makes me MAD! How come all the neighborhood kids have to wind up at your house when you are the one with sick kids??? If that mom can't give you sympathy, then just skip the explanation and say "we can't play today." For goodness' sake, you must be exhausted. TAKE A BREAK. Bolt the door, put a quarantine sign on it, and get some good videos to watch together or something. Or go to a park, take a long drive, whatever. I'm getting carried away here... You do what you think is best for your family. Prayers for a good weekend... Edited April 30, 2011 by mati's mom Link to comment Share on other sites More sharing options...
Suzan Posted April 30, 2011 Report Share Posted April 30, 2011 (edited) It's really windy here and the next door neighbors trampoline's net has blown down so that will keep them off of that today. If they can't play outdoors they all usually end up over at my house (all 8 of them and sometimes some extras). Ugh!! Holy cow! That sounds like what happens over here but not that many kids! That's the reason I won't put in a swimming pool ( that and I don't have any money or the right type of space in my back yard or the time or energy to take care of it ) Edited April 30, 2011 by Suzan Link to comment Share on other sites More sharing options...
FallingApart Posted April 30, 2011 Report Share Posted April 30, 2011 The neighor's dd must be a strep carrier. Our dd can identify any strep carrier based on the exact symptoms you are describing. For us, the strep carrier is grammy. We have finally gotten to the point (for now) that grammy can no longer come to our house. I can't deal with another person's visit being the reason why our dd gets set off. For us, it seems that if dd plays with a strep carrier OUTSIDE only, things will stay the same. But when they share enclosed space, ie: your home, the disaster sparks. I hope today is better for you! Link to comment Share on other sites More sharing options...
ShaesMom Posted April 30, 2011 Author Report Share Posted April 30, 2011 Sorry but that makes me MAD! How come all the neighborhood kids have to wind up at your house when you are the one with sick kids??? If that mom can't give you sympathy, then just skip the explanation and say "we can't play today." For goodness' sake, you must be exhausted. TAKE A BREAK. Bolt the door, put a quarantine sign on it, and get some good videos to watch together or something. Or go to a park, take a long drive, whatever. I'm getting carried away here... You do what you think is best for your family. Prayers for a good weekend... Thanks for the empathay. It's not just the kid that is sick-the Mom is too (me). I don't usually mind if the kids are over here most days but when it is every day of the week it just reaches a point where I feel like it is someone else's turn to babysit. Especially during the summer when I am home all day with both my kids and then the neighbor kids come over as soon as they get home from daycare. I would think my kids would want to get out of our house & go somewhere else but no they all still congregate over here. One day the doorbell just kept ringing and before I knew it there were 12 kids in the basement! I put an end to that one quickly! Link to comment Share on other sites More sharing options...
pixiesmommy Posted April 30, 2011 Report Share Posted April 30, 2011 I have my fingers crossed that he will return your email soon!! I passed your email addy to my friend Laura who has dealt with some similar issues and is a chiro. She always has fantastic ideas, and lots of knowledge about what to test for, etc. as well as being a real sweetheart and support. Hopefully we can help you "circle the wagons." Link to comment Share on other sites More sharing options...
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