bulldog24

Thanks. Llm what about my daughter makes you think this? I have never heard of this.

Fightingmom- It seems we have much in common. My daughter has been doing the same thing. Perfectly fine at school or at the BArn, but gets home, and she lets me have it. I simply asked her to grab me a paper towel the other day and she flipped her lid saying things like she wishes she was never born. For some reason its harder for me to remember that this is a medical problem not her just being nasty, than knowing when my son who is 6 does it and knowing its most likely PANDAS. I feel like an awful mother and I FEEL lIke my daughter hates me. We have to try to remember they are sick and they cant help most of it. While my husband has been a saint (married 11 years ago) through my LYme and this PANDAS stuff, He has no idea what its like to be stuck at home with 2 PANDAS kids and a 7m old and be disabled at the same time. I feel like all I do is give out meds, and get yelled at by everyone. Last week was a very rough week. Could your husband sit in on some appointments with dr. B? Maybe that will enlighten him? Oh and my husband also pulled the "I am not going to sleep in our bed" BS last week because "he needs his rest"... HA I darn near blew my lid. Anywho- trying not to rant but wanted to let you know you are NOT alone. I plan on calling Dr. B offic ethis am to try to get some help for my daughter! I dont know what else he can do but cant hurt to try

Here it is 5am and I cant sleep. So much going on. My son ds 6 has severe PANDAS but doing much better, about 80% functioning! Woo hoo! We just saw dr b 2 weeks ago. I suspected my.DD 10 had a mild case of PANDAS as well, so.brought her too. Dr. B agreed, drew a bunch of blood.. He put her on augmentin for a month, a steroid taper for a stuborn sinus infection. We dont see dr b for 4 more weeks. Any way she seemed better. But 4days into steroids we had to stop. She was a wreck. She got to baseline quickly. Then seemed better than baseline. But now she seems to be getting worse. She can not control her temper. An example... i was chnging my 7m old and need a paper towel. I asked her nicely to grab me one. She flew off the handle. She said I am tired of doing everything, I wish I wasnt born. That lasted about an hour of ranting and tears. today i was going to get her a fish. But her riding lesson was late 1 hour, so plans changed. Couldnt go to pet store. She went ballistic. Calling me a liar etc etc. We just got in the car from the lesson. I am going to call dr. B office tomorrow to see what else I could do or if blood work yields any info. She doesnt have many other pandas signs, but this is so not normal. Shes on Omegas,vitc probiotics Waiting for mag, bvits and multi to arrive I guess i could do ibuprofen. What do you guys think?

Thanks for the support. I will call my tgerapist and psych and get in this week! More appointments ahhhhhhhh!

I do see a psych and a therapist. Havent been in a month so I guess its time. I am on meds too. Did I mention I am horribly afraid of planes but to get my son in the study I went. It still scares me to no end but you gotta do what you gotta do. Thanks for your advice! I just domt want my son to freak over germs. I do enough freaking out for all of us

If it were my kiddo, i would try baby gas drops its pretty benign

In my experience as a vet tech, it was bad to give ibuprofen type (made for dog nsaid, ibuprofen for dogs is toxic) meds steroids. It was for possible stomach problems like GI bleeding. Have doctors for kids said it was ok to do both? I am not in this situation atm

Magnesium and iron may help. Dont know doses mag and iron deficiency can cause this

I have had OCD since age 10. Its been in remission pretty much since getting lyme thanks to fatigue and pain. But I am having a really hard time with germs and contamination since PANDAS came about a year ago. I mean germs are the trigger so why SHOULDNT I be OCD? I am finding it hard to balance real threat vs. Perceived threat The NIH told me "you cant keep him in a bubble" But I would like to. Trying not to get my son freaked out about germs How do you all cope

any hx of lyme? not to keep beating on the lyme drum but steroids can make lyme symptoms worse, so getting worse with pain after steroids makes me think lyme

Why not??

Has he been tested for Lyme? With Lyme, When you start an abx it can cause a worsening of symptoms. Its called a herxheimer reaction. IMHO he will likely need more than a z pack. I would see if they can give him some augmentin for at least 30 days. You could also re swab his throat to see if the strep is still there

Yay!!!!!

roughly 2 patients away from being able to write preliminary results. i was told if they were overwhelmingly convincing, they would just stop the study at 16 and write it up.

Congrats! Awesome

Its possible we all have lyme. I treated aggressively while preg, zith and bicillin. Pcr of cord cord blood, placenta was neg for Lyme and babesia thru a good lab. she is too young to draw her blood. She will have my antibodies. My mommy gut (which is right 80% of time) Is that this is not lyme (yet) and its a strep issue The dog was pos for some kind of beta hemolytic strep and the baby was the only one not on abx. Lyme in my experience doesnt cause huge tonsils. (Bart might) so who knows really

Omeglicious gummies culturelle for kids

Thanks kara!

fits my 10yo odd to a T

You may be wondering what the big deal is but when the lyme community lost the doc about 3 years ago, we had little options in treatment and left us high and dry. Not to mention this doctors livelyhood was gone! Its the equivelent of losing dr. B or dr t! Now imagine how awful THAT would be

I co moderate a lyme group and this isnt a good idea imo

Hi kara. Did she know you were going to pot her info in public view? If not ask her. She is my llmd too. I have already lost one llmd from posts like this on lyme sites. Llmds in general dont like these kinds of posts. llmds are usually on private lists that get pmd

The nurse in er said " we have seen strep in kids under 1" There goes my sanity

Agree. Check into lyme, bartonella and babesia Lyme can cause pain,, bart can xause nausea, and babesia can cause paleness

I put some baking soda in her tub and her rash is better, the doc that saw us said if the culture comes back pos I should take her to the NIH