JenniferG

I was just wondering if anyone here has had a Tonsilectomy. My dd7 is going in on Tues and I was wondering what to expect the following. Thanks

My dd had a +41band.

I have left Dr. T 4 voicemail messages and 2 emails. Is he OK? Has anyone heard anything?

We had a 2nd opinion with an MD in NJ...his thought was that my dd7 is immune compromised along with PANDAS and is doing some coinfection testing. So he decreased her to Augmentin 250mg one time a day and had me put her on Motrin 24/7 instead of steroids. Long story short...my mother needed emergent open heart surgery, so unfortunately, I have been a little neglectful with meds. She has been on the Motrin but not 24/7 and not the abx. She was exposed to strep over the weekend and had a VERY mild flare. And now has a fever and a sore throat ( I am taking her in tomorrow, but this is how she presents with strep). Her exacerbation is the mildest it has ever been, even on her really goods days of no exacerbation. Does this mean she is healing? I really am not sure the next step. I have been trying to get a hold of the MD for a couple of weeks with no response at all. Any thoughts?

OK,so here goes..........you know my PANDAS/Lyme story with my 3 children. Well, a light went off yesterday....I have been chronically ill. Even in my late teens early twenties, I was always "sick". Now, I am battling fatigue, joint pain, anxiety/depression. Last year I saw a slew of MD's and nobody could figure out what was wrong...my HgbA1C was elevated..but no diabetes, they thought I had a parathyroid disorder..scans were negative, carpal tunnel, knee problems, ankle pain in the AM, the list goes on. I have these little red cysts on me...which I just realized is attributed to Lyme. Should I get tested. Or, am I in the stage of diagnosing my kids where you seem to see "it" in everyone??? Any comments/suggestions would be helpful....even if it's to tell me to stop reading!! Thanks. Jen Oh yeah, the kicker, I have been on and off abx for sinus infections a lot this fall/winter. I am currently on Azith since Mond. ON Tues...I was WAY worse..high anxiety, cranky, exhausted and joint pain. Was that a herx? Because yesterday and today I feel great!!

Hi. I usually post on the PANDAS forum, but I was wondering if anyone could rec a DAN MD in CT? I have recently learned the PANDAS is a "sister" of Autism and "gut health" seems to play a huge role in treatment. Any suggestions where to start? Thanks.

Have you tried antibiotics?

Just a quick update... I restarted just the aug and kept her off the Azith. Had a REALLY good day today. Can things change so rapidly? She did complain of being very tired a couple of times today. That is unusual for her. I am still waiting for a phone call back from MD. How do u tell if it is a herx reaction or she just doesn't do well with Aith? Try another abx with the Aug? Thoughts? Thanks.

My dd7 saw a new MD in NJ this week. Changed her meds from Azith to Aug and Azith. I had taken her off all meds to sort of have a fresh start when we saw him. She seemed so much better OFF of the meds. Then I started Azith and Aug. Big change....increased anxiety, nightmares, anger/raging, age regression. So, I stopped onde day into them. She got better for a day and a half. Tonight was her First Reconciliation.....wouldn't hug or talk to anyone. Melted before we left....very anxious about the visit with the priest....calling herself stupid because she couldn't remember her "lines", saying she was going to be the ugliest girl there with the ugliest clothes..etc. I am very confused right now. Is this herxing or PANDAS or just an attidue problem!!!??? My husband is at his wits end with her. Her new MD said she is sever PANDAS (after hearing everyones elses experiences..we thought she was mild) and is testing for Lyme. Her ASO neg, AntiDnase neg, but consistent low IgE, Basos, and IgG4...which he has been studying and says this is a VERY common pattern in PANDAS. No vaccines "took" ( Hib, Tetanus and Pneumoccoal). Have an appt. with Dr. J in May. Next step....or ideas to get through the weekend???

Is there there a specific protocol for an Epsom Salt bath? My dd7 weighs 48lbs. If there is a difference, that means it was herxing? And it's Lyme? Or, can you "herx" with anything? Sorry, this is all new to me.

I thought I read somewhere that if a child does bad when starting abx, that could be a sign of Lyme. My dd7 had a change in her meds...to Azith and Aug. She is backsliding. I had her off all meds for a couple of days before a visit with a new MD. She was great!!! Once she started back up, backslid. Is this a sign of Lyme??

I was just wondering how much luck anyone has had with gluten free, casein free, dye free etc diets. And some yummy kid friendly sites would be VERY helpful!! Also, does anyone know where to find the appropriate amount of probiotics for children? Thanks

My ds3.5 has got a very vague spotted rash on his torso. It is spread out (not too many spots). I know some kids get it with strep throat. What if he isn't sick? His brother has a sinus infection and sister is getting over strep throat.

I noticed my last post is a "locked topic" with a note stating private replies only. I hope I didn't offend anyone.

We have our first appointment tomorrow with Dr. Trifiletti. Just wondering what other families first visits were like. I have sent him copies of labs. Thanks

Can anyone recommend a LLMD. We live in central Ct. Thanks!

Hi I usually post on the PANDAS wall, but have some Lyme questions. My dd7, PANDAS tested positive for the P41 band. Her PANDAS MD said we probably don't need any other testing. Last year they were negative. Should we test for anything else? Or, should I leave well enought alone? Thanks.

We saw Dr. B. Today for my dd 7 and twin ds 3.5. This may be long, sorry. We waited over an hour and half and he seemed very busy. I sort of feel like things were overlooked. I love him, don't get me wrong. She got strep on Augmentin so he said it was an Augmentin resistant strep strain and changed her to azith 250/day. She is 48lbs. Said it would be good to get her tonsils out, but didn't sound adamant. And I brought up IVIG.....we had talked about it in the passed, kind of thought that was what today's visit was for. Anyway, told me to call To check on precert and we would get her scheduled. Both twin boys were there too. He saw them. Changed everyone to azith and wants us back in 4-6 weeks. My dh is a little frustrated and both abx and IVIG scare him. He isn't fully onboard yet. Long term abx scares me MUCH more than IVIG. Spoke with my pharmacist today and she agrees. It also is quality of life. So what would come first IVIG or tonsillectomy? He also said the average amount of treatments is 3-4. Could be up to 8. I think that's what freaked dh out. So many of us struggle with the questions....any insight is so greatly appreciated. The all also have GERD and weight gain (lack of) issues. Antibiotics do not help this. Her IgG p41band for Lyme was positive and he didn't warrant any additional testing....unless she was symptomatic. ..aren't they all the same symptoms??

How can I get the Cunningham Test done? I sent out an email, with no response. Is there a new address? Can they use "old" blood.....a draw from Tuesday?

Thank you so much! This comes at a time when we are pondering IVIG. We meet with Dr. B. on Monday. Now I am very anxious for the appt!!

Does one positive band (P41) mean a diagnosis of Lyme? And does that mean PANDAS doesn't exist? How is Lyme treated? ABX? Any thoughts? Thanks!

Was your western blot through igenex? Do you have each band listed and a result next to it? LIke a +, a -, or IND? Even if the over all result says negative, if even one B. Burgdorferi specific band is IND or positive, it means exposure to the Lyme bacteria. Though 41 is not lyme specific, it is the first band to turn positive when exposed to Lyme. You could post the exact results here and someone might help you sort them out. I called and got a verbal. He said that they were all negative except band P41, that one was positive. When you say the first band to turn positive, does that mean she was just exposed? Does anyone know anything about Lyme being passed on through birth?

S part of my dd's labs are back and her Lyme Western Blot IgM is neg or absent. And her IgG P41 band is positive. What the heck does that mean? She has Lyme? Was bitten by a tick?

Thank you very much! So if that's the case,then, technically, IVIG should help....on paper anyway. Right?

I need help understanding that....