philamom

Sending prayers to you all! Stay Strong!! <<hugs>>

S&S- Our llmd doesn't put any value into the test. It was ordered through a DAN doctor by my request, but not really sure he knows how to interpret it. I'll try googling the rosetta stone. thx

S&S- I did the HLA DRB, DQB Typing...never really figured it out. Here is my dd's results - can you enlighten me in any way? or anyone? I know my dd has the HLA DR4 gene from a different test done with Dr. J. DRB1 DRB1*04:01 DRB1 DRB1*07:01 HLA DQ DQB1*02:SS HLA DQ DQB1*03:JWKX Code Translation: SS 01/01/04/05/06 JWKX 02/08/32 DRB3 DRB3*- DRB3 DRB3*- DRB4 DRB4*01:ARYE DRB4 DRB4*- Code Translation: ARYE 01:01/01:02/01:03/01:03N/01:04/01:05/01:06/01:07 02:01N DRB5 DRB5*- DRB5 DRB5*-

What is the test for MRSA? Is it a biopsy? Or blood tests? thx

I agree. I thought it was an excellent introduction to the disorder. I liked how it briefly explained that the immune system is involved. And, I never watch the show, but I know they have a pretty strong audience. I'm so happy the word is spreading!!

Good idea Philly - might do that.

Crazy...huh! I wanted to go have a chat with the family but my husband talked me out of it - plus I don't know if they have children who attend my dd's school, which could make it worse for her. Many of my daughter's fears popped right back to the surface (vomiting,sneezing in tv shows,separation). Fortunately, I'm a little better equipped on dealing with them...singing songs & rhymes about barfing, and she's a little better at discussing them. But still - the hardest is the school...because the fear fo it actually makes her feel like she's going to get sick. I got her in today for an hour 1/2 - so I'm really proud of her. If I continue to fume, I might rent a costume and hide behind their tree and give them a fright one morning . Oh, that is when I can separate from dd. -thx

Thank you. I may have to toilet-paper the house! thanks for the links Nancy -plan to print & bring to doctors.

My dd has been showing signs of a strep infection since Sept 1st. She now has either a staph infection (cellulitis) or strep infection (erythema nodosum) on her leg, possibly both legs. When tested at the end of Sept, her DNASE and LFT's were significantly increased. Her ASO is normal but increasing to higher end of normal. Last week she missed entire week of school due to her leg. On Monday, she went for a full day - I was there in the afternoon for a parade/party. On the night of Halloween, my stepdaughter & boyfriend (20's) took her out trick or treating. The plan was for them to go as far as her leg could handle, and I would then drive and pick them up. They were at the end of their route, when they went to a house where some adults in costume and chainsaws jumped out from behind a tree and tombstone decoration and chased her. She dropped her candy and ran away screaming. The adults never broke performance, or offered any compassion . She came home pale as ghost - and she was oscar! Tuesday, I received a call from the school nurse at 10:30 to pick her up. Since then she hasn't been able to attend school, has severe separation anxiety, and a return fear of vomiting in school. It's hard to distinguish between physical pain (her leg - she may be fighting a cold as well) and fear. Anyway, my question, is it possible for a really scary event (for her) to open the blood brain barrier, allowing the bad antibodies to circulate? thx

Are you still dealing with the cellulitis? If so, I think it's kind of strange that both of us are from the same area of PA, and we are both dealing with it at the same time. Looks like ours is cellulitis (one DS on his toe and the other on his rear end...this isn't the 1st time.) Doc wants him having surgery...they think it probably goes deeper. We see Dr. B. tomorrow for IVIG for one of my kids, and I'm bringing it up. Do you think there could be something going around here? I know that there's been a particularly virulent strep going around PA this year. edit

Went to another doc today. It looks like were back with the Erythema Nodosum diagnosis. The reaction to her face was most likely from the Keflex.

My child(10) was also healthy until I stopped breastfeeding (14 months). Around 16-18 months, she started getting sinus infections every 4-6 weeks. They assumed it was allergy related but, mostly, testing was always negative. In between sinus infection (after being treated with abx) she was completely fine, no symptoms, until next infection. This went on until her first severe PANS episode at age five. Then she had less sinus infections but continued with PAN episodes until becoming chronic April 2009. She has always been on the lower end of chart for weight, not height.

My dd's C. Pneumoniae IGG is 1:128 (ref range is <1:64). Her IGM and IGA are in normal range. She is not being treated for it...I will inquire why at our next LLMD appointment.

We have had it several times...it can begin for any reason, (bug bite, etc) then quickly spreads through the body and is detectable by redness, pain, swelling, a fever, and gets worse quickly. Can lead to scarlet fever. Goes away just as fast with abx, sometimes a shot of penicillin is required. To avoid contamination of other family members, change all towels, sheets, and wash clothes every time they are worn. Be vigilant for the next month about this. Our whole family was infected and had to use muprocin in our noses and wash with anti bacterial soap for an entire year. Watch for pimple-like or cyst-like signs, those are the early signs. edit

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Along with "What to do when your BRAIN GETS STUCK - a kid's guide to overcoming OCD", there's also "What to do when you WORRY TOO MUCH - a kid's guide to overcoming anxiety" both by Dawn Huebner. They are great and include helpful activities. Another children's book is "Up and Down the Worry Hill" by Aureen Pinto Wagner. btw- was a DNASE Strep titer done?

I missed most of the live stream today...any interesting details to share? I was able to catch Dr. Christine Greene speak about co infections. I thought it was a good presentation.

I also use Florastor. They sell a kids version that you can mix with food/drink or sprinkle directly into the mouth. I also like Culturelle kids. Try to separate 2-3 hours away from antibiotics.

I agree! Some other websites: www.lymedisease.org (formely CALDA) www.lymepa.org (click on "Lyme Disease - The Basics) www.lymediseaseassociation.org

When I go to Quest, I sign a paper for a copy of the results to be faxed or mailed to me. You have to request this when checking in before the blood draw. I usually get the results the same day as the doc - which is great because I can then review it before speaking with the doctors office. At Labcorp, I'm pretty sure they send you a copy without requesting.

Great! I would work on arrangements now to make certain he is on abx afterwards. Maybe ask Dr. B's office if they could send him a letter/fax suggesting another 2 weeks of abx after the surgery, until your appointment with him. I would be concerned with all the bacteria being released and not being on some sort of antibiotic. Also, I recommend a probiotic if he's not already on one.

Just got back recent ASO/DNASE: ASO 98 (normal but increasing): May-35, Aug-48, Sept-61, Oct-98 DNASE 477 (High but decreasing): May-50, Sept-663, Oct-477 I still feel this lump may be strep related. Hopefully, the Keflex helps...so far(only 4 doses), nothing.

When my daughter was on Minocycline, the llmd said you can give with food even though it states otherwise. There was a thread on here where others mentioned they had to give doxy with food to avoid an upset stomach.

Cefzil is in the Cepalasporin family. Yes, it is precribed for strep. How long did he prescribe for? Until the surgery? I'm glad you got some where - good luck!!

FYI-Conference will be streaming live!! JG's Mom- Great - look forward to hearing what you learn!