philamom

Is your son on doxy right now also?

On this subject, does anyone feel chronic headaches, nausea, and feeling of vomiting could be due to yeast. My daughter is going through a physical flair, once again, and is experiencing these symptoms. She does not exhibit symptoms of adhd, giddiness, foolishness, etc. Her recent labcorp lab results are negative, but tests done in 2012 by Quest were slightly elevated. We switched insurance in January that requires us to use labcorp. LLMD and Immunologist wants her to begin doryx to address lyme/bart. She is only on Amox now for the past 14 months. In December of 2011, she had a positive culture of borrelia from Advanced Labs. They feel the Amox is just keeping the lyme at bay. Our local doctor, is concerned the symptoms may be from yeast. He doesn't rely on testing yeast through traditional labs. Waiting for OAT kit from Great Plains. I'm concerned of holding off on doryx any longer since the sunny weather is approaching us. Ran strep titers yesterday. Her d-nase went up 100 points from Jan to February. Its always confusing on what direction to take.

Oh LLM, I'm so sorry the road's a little bumpy for your son right now. I hope you get him back on track real soon. Stop thinking about them state assessment tests - I think you know that Speaking of poop-ologist, I ran 10 vials of stool tests on dd today (I think lab mad a mistake on the amount they gave me). Dd couldn't wait to put the gloves on and mix & shake them with me. She analyzed each vial and made hypothesis on what may turn up. Since she's not in school much, can I give her an A+ in Science for the year

Just received a prescription for doryx for dd (11). How bad is the sun sensitivity? Does sunscreen need to be applied to the entire body- every time she goes out? I'm so concerned I won't always be able to monitor It, and she'll go outside unprotected. I read horror stories of sun blistering on doxy. Is it the same for doryx?

I'm using it more for headaches than a flair per se, but I do notice some improvement in overall symptoms as well. Using it once or twice a day - its been ongoing.

Thank you for replying. Someone recently mentioned a multi vit from Klaire that I was going to look into - I've been very happy with their probiotic. My daughter is very sensitive to vitamins and supplements, so its always been a challenge. Hopefully, others will keep this going.

Was hoping to start a thread on what brand multi vitamin you are using and if there is a reason why you chose it. Also, can you post If you are using individual vitamins instead and why (ex- mthfr mutation). Thank you.

I don't know why, but my dd seems to do better with advil than motrin. Both are ibuprofen, so it really shouldn't make a difference.

L-lysine and vit a was mentioned for viruses at a conference I attended yesterday. The speaker also felt that all our children's Vit A levels should be checked, if I remember correctly.

My dd was on tindamax Sat/Sun (only) for 9 months - definitely saw an increase of symptoms on Sunday and Monday (or Monday & Tuesday - its been a while), but also felt she made great improvement on it. It was a love/hate relationship. We did have extreme difficulty during times of IVIG while on it though. Not the same for everyone I'm sure.

Is there a human resource person at your husbands company that can assist you?

I spoke with Dr. Storch this morning. He is out of the office until Monday. If you are still interested, you could call Monday to speak with him.

Yeah, we've been working on this (with a therapist) since Sept. In the beginning, she also asked me throughout the day if she was going to throw up...every day. Thanks again for all the tips.

Is your daughter happy at all about school when you pick her up? Would she enjoy going if it was just an hour (maybe at the end of the day- or first thing in the morning if she feels guilty)? With a doctors note you could modify her schedule as she works through this flair. Is there anything that would turn school into a positive reinforcement for the next few weeks, and allow her to continue but not bring her to the point where she is crying while in class? Even if its just attending recess. I would not worry about the academics at her age. btw- this has been my daughter every day the entire year, without the vomiting. I feel for you!

Michigan- thanks for the suggestions. did you do exposures (homework) at Disney? lol. My daughter has been viewing "rate my vomit" for a few months. She has come a long way. At first she had to peek from another room with sound off while we described the scene, making fun of it. Like, whether it was real or a fake photo. She would always say the people were faking She moved on to watch it directly in front of her. I will check out the other you tube sites. Thx. But we are still missing a component. And with winter illnesses she has regressed. One piece of exposure she hasn't done is to involve strangers. I think I recall dcmom saying her child had to walk up to people and announce they vomited - something like that? My daughter also can't go to the movies. It depends on where she is in a flair. I try to bribe her sometimes by paying her (again, only a pans parent would understand). When it was really bad, she wouldn't even watch tv. Anyone else have suggestions? Is there an aquarium near by? Sort of remember someone mentioning it?

Have you already tried the anti-anxiety medicine. You want to be certain your child doesn't have a negative (opposite) reaction to it. In our earlier days, I tried meds for a blood draw - dd went berserk and we had to cancel the appt. Don't worry about what she is wearing or the other people. I like the idea of contacting the airlines. You can also get a doctors note requesting accommodations. Does Advil or Motrin help? Maybe keep that on hand. Also, one final suggestion. Prepare for extra hours. You never know if bad weather or something else may throw a wrench in your plans. I took a 2 hour flight last Sunday that ended up being 6+ hours due to bad weather. Better to be over prepared. Best of luck. Sending prayers! edit- I only skimmed the replies and just reread about the medicine.

I know this has been posted before, but can you please give me suggestions for weekend activities. What can we walk to? What can we drive to? From Ronald McDonald House.Thank you. edit to mention we are going for a vomiting phobia (fear of herself and others vomiting - especially classmates). She does have daily nausea/headaches due to lyme & bartonella, possibly strep - elevated d-nase since January), and we will soon be switiching/adding antibiotics. But I want to do this program first.

Yes, I'm not implying that your child has PANDAS (PANS). But since you mentioned strep in the past, I'm glad you're digging a little deeper. I think the Cunningham test will be available soon. You can get a link to the lab on the PANS forum. Yes, wonderful information on this site (all forums). I don't know where I would be without the amazing support and suggestions/ideas from the parents here.

Welcome MMM. I went to CHOP in 2005 and again in 2009 (Neurology/Psychiatrist). I am so glad I went against their opinion/advice. I will try and send you a private message in the next few days. There are a few other parents here in the area. You may want to post this in the PANS section as well. I almost missed the post - as the forum has just recently been upgraded and new headings have been added. edit to mention that negative ASO & D-Nase B titers (blood tests) do not rule out a PANDAS diagnosis.

I forgot all about this. I'm trying to rearrange my schedule to come at noon. I still think the $35 registration fee will be well worth It, even if to see the last few speakers (includes Nancy O'Hara). Am I aloud to show up late if I pre register online?

Thanks Lynn. Not sure if protocol has changed, as the person I spoke to this morning said we needed to come in for an evaluation first. I'm waiting to hear back from Dr. Storch. I'm hoping that since I spoke with him in the fall I may not need to make the additional trip. He knows of my dd's psychologist, so maybe he could speak with her if needed. Glad to hear it was beneficial.

I really like Klaire ther-biotic detoxification support (50+ billion cfus per capsule). We also use Florastor, Culturelle, and Intergrative probiotic pearls.

Did you have to fly out there first (those out of area) to be evaluated, or meet with Dr. Storch?

S&S- do you use Oxy powder capsules on your kids? 2-3? Thanks (forgive me if I asked you this before).

You may want to bring "Shivy Shiv" (lol) next week. The nurses can wrap the bear in the same bright color gauze used on your son if he wishes. He can also have his bear ride on the IV machine (cant think of what its called right now).