Mayzoo
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Posts posted by Mayzoo
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Well, we will be seeing him soon looks like. After we recover from the T & A and finish the eye doc appt. Thanks to all who gave input on him.
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I have read quite a few folks whose kiddos do not wish to shower or bathe themselves or their hair. We have been there before complete with the looks of terror and betrayal if you try to force the issue. I hope this provides at least a small amount of help to someone:
A google search to no rinse body rinses:
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Thanks everyone. I love the pool idea, but besides going to Dr. T's he hasn't left the house in a month.
ChrissyD -here's to speedy recoveries for our boys.
T.Anna
DS 14.5
Well, maybe this can help till you this issue under control with other methods:
A google search to no rinse body rinses:
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DS was on Augmentin 875 2x daily for a year. He has been on Augmentin 500 2x daily for the past four months. Anybody know what's next in the reduction? What is the preferred lowest dose of daily prophylactic Augmentin? Thanks.
Check with you doc, but you can break/cut the 500's in half. After that, it is not uncommon to start going to every other day, then every two days until you are completely off if that is the goal.
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My kiddo likes this one, it is a capsule that when opened it is a bit sweet: My link
About the not wanting to wash his hands, it seems several of these kiddos have an aversion to water for washing. Maybe it is a sensory thing. Mine will drink tons of water, swim in a pool, and really enjoy a wave pool, but she does not want to wash her hands, shower or take a bath.
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Mine is 11 and tells me to "try and be patient please mommy".
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Dumb question but would he go swmming in a pool? Maybe you could book a hotel with an indoor pool?
My son has IVIG last Thursday & Friday as well, go figure. No improvement yet but a lot of old behaviors are resurfacing and definitely more rage/anxiety. I'm praying its just the beginning of his healing. I'm hoping the same for your son T.Anna.
Not a dumb question IMO. We are unconventional, but in our 18' round pool that kiddo usually loves, we wash her hair in there if the need absolutely arises. I am certain most would think this is nuts or a really bad idea, but if it works with less trauma to her and less drama for me, I will do in a heart beat. Convention be darned if I can make my child's life a bit easier. She already has sooooo many difficulties she faces each and every day, I will do what I can to make all our lives a bit easier and less traumatic.
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My kiddo has the same issues. She says the water scares her. I give her a choice between bath or shower when we must go full water clean. The choice seems to help her slightly. We usually use a wash cloth bath throughout the week and wash her hair once a week in the sink rather than a full out shower/bath. Then again mine is just 11 and has special needs including SID.
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Not yet, but I was considering them for my kiddo. Please share what your experience is when you are done if you do not mind. Thanks.
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Our two blood draws resulted in nothing positive or negative once she got over the trauma of the actual draw. Sorry, I know this is not the news you wanted to hear.
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We're you able to get your child back on the antibiotics and stable again?
We went back on sometimes the same abx, sometimes a different one, and we reached a degree of stable. We have not been back to 95% since July 2012. We were at about 70-75% percent before the T & A. Every time we gained above 85% she got sick again and would decline.
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We have tried twice in 15 months to ween off to no avail. Her tonsils and adenoids were removed today, and after a few months, we will try to slowly ween again. If that is also to no avail, we will just wait for another 6 months to a year to try again.
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I am interested in the references for these studies as well. The effect of gut health on the immune system and hormonal functioning is not really general knowledge yet. Our LLMD does not even prescribe probiotics for our DD11 who is on a multiple abx protocol. I have seen mentioned that some strains acquired at birth and in early childhood prepare the immune system for proper functioning, but really nothing else. We use probiotics to help maintain gut health, but that is as far as my knowledge goes. Is it even possible to replenish proper flora after multiple rounds of abx? Any information is appreciated.Many results show certain strains of probiotics and prebiotics helping in every corner of the body, so to speak, including nasal allergies, lung infections, skin eczema, brain hormone imbalances, blood pressure, you name it.
Some links to cover immunity and probiotics.
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I am doing our pre-surgery research and was a bit surprised to find that Omega 3,6,9 Lecithin and propolis capsules all have blood thinning properties. So, I thought I would share this in case anyone else needed to know for pre-op or other reasons. I stopped all of these 5 days prior to surgery to lessen the likely hood of complications.
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I will ask the anesthesiologist for abx during. I had not thought about that yet. The ENT said none before, after or during even though he agrees she has an autoimmune disorder. Upon a Google search, this is a new approach recommended--no abx during T & A (My link.) He is at least willing to remove them and culture them (despite his feeling a culture is a waste of time), which seems to be hard to get docs to do this now *sigh*. The pedi and the ENT says they look fine upon examination. Her strep history is:
09-11-2011 Strep (not confirmed), not resolved with abx
09-17-2011 Strep (not confirmed), finally resolved after another abx
1-5-2012 to 2-29-2012 constant strep for 55 days confirmed by rapid strep test every 7-10 days.
7-5-2012 strep confirmed with rapid strep test
10-20-2012 Bronchitis, pharangytis
We are in N-Central Texas, no where near a specialist and kiddo cannot fly due to Arnold Chiari Malformation I. So far she has been mildly to moderately affected by PANDAS since we got the first flare under control. When we can, we will make a road trip to see a specialist. We used to go to Illinois for her Chiari, but hubby is at a different job now and works 12-16 hour days every other day.
I believe I know a doc that will give her Clindamycin. If not, I have zithromax on hand I will probably give her zith 5 days before and 5 days after. She is already on Keflex, OLE, Ultimate Immunity, lecithin, Omega 3,6,9 and Propolis caps for immune support. She is about 80% of normal right now.
Thanks everyone for the input.
Article excerpt:
"Statement 8: Perioperative antibiotics
“Clinicians should not routinely administer or prescribe perioperative antibiotics to children undergoing tonsillectomy.”
Strength: Strong Recommendation"
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What abx did your ENT give to your child either pre-op, during, or post op? Are their any articles you have handy about this? I need to find information to try to change this ENTs mind. He acknowledges she has PANDAS, but he does not do pre, post or during ABX for autoimmune issues *sigh*. Kiddo is already on Keflex prophylaxis.
Thanks and I am off to google as well.
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Restless and rude could easily be from the steroid. Steroids definitely cause agitation, excitability and aggression in some people. It may even be the combo of the luvox and steroid together rather than just one or the other.
Good luck, call the doc and make sure he/she knows about both drugs in case they think it is a combo side effect.
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Love propolis. It's a staple for cuts at our house. DD7 hates the smell, though. She'd never take it internally.
Will do. I did a search on here and only came up with someone mentioning a Propolis nebulizer, but maybe the search did not catch all.
Thanks!
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Love propolis. It's a staple for cuts at our house. DD7 hates the smell, though. She'd never take it internally.
I ordered capsules, so hopefully that would cut down on the smell
. If not, my kiddo is a pretty good trooper about trying things that might help her feel better. We already take a pill for immune support (Ultimate Immunity support) and it stinks and tastes horrible--for a long time afterwards. -
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I was looking through old medical records and saw this.
"Susceptibility to tetracycline is predictive for susceptibility to minocycline, however in vitro resistance to tetracycline may or may not accurately predict resistance to minocycline"
It caught my attention because we have used mino and may try it again in future. Anyone know what this means???
THanks!
Not sure how to word this since I am short on sleep lately, but I will give a try. Since tetracycline and minocycline are closely related to each other, the premise is that if a bacteria cultures shows susceptibility to tetracycline, then there is a likely hood it will also be susceptible to minocycline. If a bacteria is resistant to tetracycline however, it may not be resistant to minocycline since minocycline is slightly different and newer.
Hope that helps.
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Hi Mayzoo.
Just saw your info at the bottom and wanted to ask about the strabismus. My DS11 also has bilateral strabismus -- it is Duane's Retraction Syndrome, which he inherited from me. Just curious if your DD's strabismus is Duane's. Also, I have always thought that some eye positions are triggers for tics. Have you noticed any correlation that way?
Thanks!
He is an ENT in Dallas and Plano TX, and we saw him today. He is familiar with PANDAS but does not appear to be thoroughly educated on it. He believes it exists, but he seems to believe too many patients are being diagnosed with this that do not fit "the criteria" (not sure which he uses). He came in a bit skeptical IMO, and asked some questions before he agreed our daughter in fact sounded just like a PANDAS case.
All we we went for was a recommendation on her tonsils, not general PANDAS treatment. He wants to go ahead and remove them (full T&A), but says he does not normally culture them, but he will if we really want him to.
Just wanted to pass on the information in case it helps anyone.
She has had hers since birth. It has always been attributed to a birth trauma. Her left is much worse, and she is almost blind in that eye as well. No one has ever mentioned Duane's, but we are going to a new eye doctor at the end of the month and we will ask about that. No one in the family has strabismus, but her daddy has a "lazy eye lid". The only tic my kiddo has is a vocal tic, and that usually only happens with a low grade fever or when she is very tired. Thank you for asking.
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He is an ENT in Dallas and Plano TX, and we saw him today. He is familiar with PANDAS but does not appear to be thoroughly educated on it. He believes it exists, but he seems to believe too many patients are being diagnosed with this that do not fit "the criteria" (not sure which he uses). He came in a bit skeptical IMO, and asked some questions before he agreed our daughter in fact sounded just like a PANDAS case.
All we we went for was a recommendation on her tonsils, not general PANDAS treatment. He wants to go ahead and remove them (full T&A), but says he does not normally culture them, but he will if we really want him to.
Just wanted to pass on the information in case it helps anyone.
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What about Keflex, or Doxycycline?
. If not, my kiddo is a pretty good trooper about trying things that might help her feel better. We already take a pill for immune support (Ultimate Immunity support) and it stinks and tastes horrible--for a long time afterwards.
Hopefully help for the unwashed masses :D
in PANS / PANDAS (Lyme included)
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I just tried the dry shampoo with cornstarch and salt on my kiddo. It was a bit messy, but it seems to have worked pretty well to get her hair clean enough. It is, of course, not as shinny as a water washing would get it, but then I did not get all the powder out yet either. I will brush it more tomorrow after some of the powder falls out from sleeping too.