jenbug

Beeskneesmommy---You are a great mommy! We all have those moments when we yell and whatnot (or at least I know I do). Just remember to give yourself some slack!As far as the behaviors, not sure what to say except that my ODD who has had this crap forever seems to have more of the bad behaviors "engrained" into her more so than the others as she has had it longest. It might take a few years to get him back on track though--hang in there, you are doing just fine!

My mom told me that at first too, until she noticed the huge behavioral changes in my son when he was on treatment of abx, etc. I think most of us have been told that by someone or another along the way. This used to bug me a lot,and still does once in awhile, but I just have to tell myself that I am a mom and have to be an advocate for myself and my children. Hang in there and follow your instincts! It is super hard when a loved one is going against us or our instincts as moms. Maybe if you feel you are doing this too much, take a step back and try to conserve your energies for the most important at the time. I find limiting myself to the computer to once a day on this stuff and changing my thought pattern if I get too "obsessed" with it. It is hard though, when you are watching your child suffer, to not want to focus on it all the time because it is your child!

Okay, my DS and I have strep AGAIN (although mine wasn't swabbed or confirmed)! This is the second confirmed case for him in the last 3 months! We are currently working with a team consisting of his ped, my doc, and Dr. T (who has been very helpful). Anyhow, The doc is talking tonsil removal now. His behavior symptoms have just shot out the roof the last few days to a week. he just was on 2 rounds of abx for M pneumoniae. That finally took care of that and then about 3 weeks or so later-BAM strep again. I am sooo tired of this! Plus, my mom died about a monmth ago. She was only 52. Her mom died at 42 of cancer. The doctor or ME whatever said she died of cardiopulmonary arrest and immediate was cerebral anoxia (complete lacck of oxygen to brain). She had a lump on the right side of her neck. In her journals though, she complained about neck pain, headaches, stomach aches and increased saliva for the last 4 months or so. We didn't do autopsy since that was against her religious beliefs. Since her mom died of cancer, I am thinking it was a tumor. She also was a smoker (both were) and had copd. We are waiting to get more bloodwork done to confirm some weird immune stuff for me. My oldest has IgA deficiency and my son is a bit low, but not below normal totally. Mine is low on both IgA and G and I am wondering if it is possible that me, mom, and gma had immune deficiency CVID that caused their early deaths? I know nobody here can answer that for sure, but I am just numb from all of this and I am sick again too right now. I have canker sores, sore throat, headache, hives, nausea, fever of almost 101 for the last 5+ days. The pcp put me on 2 g of amoxicillin for 7 days. So far, the fever is still here. I am just frustrated rigtht now. I need to keep pushing forward with this but I am too tired to do anything right now.

pandas16--Nope, haven't heard of it! Please explain! All I know is the bloodwork came back with high eos and baso and neutro (I would have to get it out to check for sure) on the kids. Also had high IgE. They are highly allergic to something. They have all been on soy or special formulas. S&S---good luck with it! i hope you see positive results.

Anyone tried parasite cleanses? If so, what have you used? I just bought some Wormwood stuff we will try. Not sure if we have parasites (well, besides Lyme) but some of the bloodwork from the kids came back indicative of possible parasitic infection.

Wow, that is also strange about the rubbing of eyes causing breakouts! When I was pretty young, around 5 or so I would get dermographism whenever i would lie down to go to sleep. Itchy everywhere and wherever I scratched or evern slightly rubbed it would puff up. My sister and I would play tic-tac-toe on my skin!

JuliaFaith--Really? That is interesting, because I have been told that my liver enzy,es were elevated once during a pregnancyt and I think even once before that with no reason why it would be. What can you do for that?

None of us have yet been formally dxd with Lyme, but I have one positive specific band IgM 23 I think that was pos. Anyhow, all of us have had a few EIs here and there, but my baby had tubes in at 1 year and had constant infectin from about 6 months until then.

LLM--thank you for your insight! After weighting the risks, etc, I decided to do the short course of pred. It is just a Medrol-dosepak with just 6 or 7 days, and the first day is only 24 mg which tapers from there, so not too bad. I am sorry about your loss as well! tpotter--I have had hives like this since I was pregnant with my son (about 4.5 years ago). They were there fairly constant until a shot of prednisone this winter for a bad flu where I couldn't breathe well. They pretty much stayed away until about a week before mom passed. Then, just when I got home they flared bigtime! I know stress causes some of them, not all though. I haven't been to allergy tewsting yet. Still juststarting down this whole road of pandas, lyme, immune deficiency stuff. As a side note, mom's neck swelled shut and shut off total oxygen to her brain....She had COPD, but I am wsondering if she had an allergic reaction to something...never will know for sure, as we didn't do an autopsy as that was against her wishes.

I have just broken out with hives again, and they are the huge ones that are about orange to grapefruit-sized. My pcp is putting me on Medrol-Dose pak. I still haven't gotten in about the Lyme as my mom just passed away last week. I have heard steroids are bad for Lyme? I have been on them several times due to these huge hives.

I really don't, but here is some info on staph in general, both positive and negative types. http://emedicine.medscape.com/article/228816-overview#a0104

Yay Kim! I am so happy to hear this! What an inspiration

yeah, I am thinking they may have had the worst case ones on there. I relate to Dana most as well.

I had no idea about this! Thanks for the info

My husband and I are halfway through that movie (got too tired to finish last night). OMG! I can't believe how severe it can get or how many ppl are afflicted with it! I also made an observation that I thought was important, but maybe it is just my tv resolution, LOL. I noticed that most of the ppl on there that have Lyme have a malar-type rash and some on the chin. My ODD12 and I BOTH have a similar rash that gets worse in the summer, but is not an actual burn...just a dark pink tint no matter how much sunscreen we put on. it also appears even in winter when either of us is flushed from hard cleaning, exercise, etc. Am I just nuts to see this, or has anyone else experienced this very mild malar-type rash? The movie was very sobering. I cried for awhile afterwards.

Priscilla--WOW! I am glad she is okay! That definitely would be one of the most scariest things ever! iowadawn--it must be common then! That is unfortunate. Her counselor is confused as we have had her in therapy for about a year and she is on 2 meds (wellbutrin and fluvoxamine). She is going for a psych eval on the 27th and I will mention Lyme although not sure what reaction I will get! SF Mom--Both DD and I have about 90% of the bartonella symptoms. That is scary, because neuro is a big part of our problem!

Wow! Sorry to hear poor little gal is suffering with so many infections! I hope they can get it cleared up ASAP! I was just reading about #s 3 and 4--those are nasty critters that can really cause probolems in immunodeficieny people...I guess the others all can too.

Wow! Sorry to hear poor little gal is suffering with so many infections! I hope they can get it cleared up ASAP!

Wow, that is very interesting, espeically since my children and myself included failed many of those titers!

I was just wondering if anyone has experienced using multple herbals or natural treatments while on prescription drugs that recommend not to be? I ask, because my ODD and I are both on 2 psychiatric drugs for anxiety and depression OCD, Tics, etc. They all (1 especially) say not to mix with herbals due to potentially deadly side effects. .

Wow, that Myco P is more common than realized I think! My DS3 is battling it right now and I just got over it. My son does get pretty bad behavioral symptoms while infected though. Within 2 to 3 days of abx he seems like a much different child. Glad to hear your ds does not react to it!

Can most of these supplements be taken with SSRIs/psychiatric drugs? I know the one my ODD are on you cannot mix any herbs with it. I am hoping after enough treatment we can maybe wean off them. My daughter is on fluvoxamine (Luvox generic) and generic Wellbutrin and I am on Luvox and BuSpar (all for depression and anxiety and severe OCD.

Wow! That is scary thinking those things can happen with Lyme and/or co-infections. What are the treatments usually involved? I know some abx, but isn't IVIG used too? My ODD has IgA deficiency and it looks like I may have CVID as well.

My ODD12 has extreme beh. problems, including threatening the s word a few times. We are in the process of evaluations and such, but I am just wondering if anyone has had their child become violent or suicidal due to Lymes? I know it can cause brain fog and anger attacks, but can it go as far as the s word or actual threatened violence? My daughter threatened me today and that is why I am wondering.

Tamistwins--we are currently seeing Dr. T from NJ, and he is a specialist in PANDAS and he has been wonderful! However, we are just starting on this whole journey and I just wondered what other's experiences had been with mycoplasma. I was fearing it would take more than 10 days, but Dr. T did put refills on there, so I was wondering if it would take longer. Dedee--There isn't anything like that around here. We will just wait it out as we are out of town on vacation until this weekend.