philamom

Thinking of you! And sending more prayers!!

ElectroMix (makers of Emergen-C) makes water into sports water. Lemon-Lime flavor. Sodium, Calorie, Sugar free.

Sorry...I meant to post this in the lyme forum. Not really sure how to move it.

My daughter slipped me a picture last night. It's a picture of her bitten by a tick (mouth piece and 8 legs and all). Another picture of her receiving IVIG with the quote "I need an ivig". Bubbles with other phrases "help me now", "I'm struggling in school", "I have the tingles again". There are other pictures that I don't quite understand. I asked her again today if she felt the last IVIG helped in any way, she said no. I think she's begging for anything that may help right now. My heart breaks for her, like wise, for all your children.

When my dd 9 old was younger, before we knew about PANDAS, she was placed on singulair, zyrtec, exc, for chronic sinus infections. She had no signs of allergies in between infections, but figured it played a role in the chronic infections. She reacted with neuro-psych symtoms every time. The doctors kept telling me it wasn't a normal side effect from the medicine (??!). When I stopped the meds the reaction would go away in 2-5 days. Of course, this was all before PANDAS/Lyme reared it's ugly head. Sorry Kim...hope you see better days soon!

[LOL] Same picture I imagine. Hugs to you both--right here with ya!

We had our appt. with Dr. J over the weekend and there was no mention of PEX. He said to continue with IVIG if it seems to be helping. My daughter is not dealing with contamination ocd at the moment, but a SEVERE fear of losing things which then leads to significant hoarding. She also puts feelings to all objects (stuffys of course, book marks, pen caps, exc). She's so afraid it wil be left in the world all alone and that she's to blame. She has constant nightmares of robbers breaking in to steal her stuff and nightmares of our house catching on fire, again losing her stuff. The thoughts bring her such anguish. She even cries at times when others mistreat their toys. Even Dr. J felt sadness for her, which was so touching. He reminded me that it is OCD and that she does not feel good about some of her actions regarding the feelings. I get so frustrated at times.

I pulled this off of "Saving Sammy" facebook: Doctors in Australia (PANDAS): Richard Stuckey, MD 617.55 364396 Behavioural Neurotherapy Clinic www.adhd.com.au/Pandas.html Steven Mouratidis Allergy Elimination Clinic www.AllergyElimination.com.au

bumping up

The bactrim is supposed to be treating bartonella, although it is just a clinical diagnosis by Dr. J. He suspects bartonella I think because of the OCD presentation. She actually has not tested positive for a co-infection on Igenex yet, just Bb. Follow-up is not until late July. We had a honeymoon from the OCD throughout most of December and January. The suggestion to lessen the load some sounds like a good idea. You may also want to contact Dr. J's office to get his opinion. Hang in there!

Sorry laure! Is she positive for Bartonella? Is she being treated for it? Do you have a follow up appt. with Dr. J? After a nice honeymoon of good weeks from lyme treatment, we also have been dealing with increasing ocd since mid-January. Our llmd just increased her Minocin to twice a day (for Bartonella).

It is a hard call. My daughter is only in 3rd grade, but in our case failure (or extreme difficulty) leads to school refusal. I second Kayanne to be certain they would accomodate her if it ends up being too difficult.

Susan, Is your dd on the Lorzepam daily or just as needed? (can you do that) We've never tried an anxiety reducer that you take as needed but I'm thinking that may be a good thing. Tomorrow's apt. can't come soon enough. My daughter had a strong negative reaction to Ativan (Lorzepam) with a single dose. I tried it a second time with the same reaction. Good luck with your appointment!

My mother, myself, and daughter just returned from our appointment with Dr. J. I feel blessed! Happy Mother's Day!!

Momaine, I just don't know. When we did IVIG #3 in early November my daughter was really doing fantastic from the lyme treatment (started abx combo mid-Sept). We did it because our daughter was still reacting to viruses and hoped we may be able to change that from happening. We had a huge herx and finally started seing improvement again around Christmas. Then days after our appt. with her llmd in mid January she began with an increase of symptoms. Her bloodwork taken at the appt. showed an elevated streptozyme and strep was being reported in her grade. I'm not entirely certain strep was the reason. She started Minocin in the middle of December...could it have taken a month cycle to create a herx. This increase did not make her as bad as she was last year, when things were really bad, but worrisome because of the ocd returning. Her last IVIG beginning of March just stirred the pot again and we're now just getting back to where she was when we just had it done. It did not help this recent increase of ocd. But, I did notice in Febuary her face was becoming very pale again, and it did help with that. So, she may have spiraled downward even more without the infusion...I dunno. Overall, the IVIG's have helped tremendously with her constant sinus issues. She has only had one "true" sinus infection in the last year and has recovered faster from her sinus colds. edit- I should add that I can't imagine doing it every 8 weeks because I would rarely see any "good days", so I usually wait 3-4 months in between. What I need to figure out--is it helping in the overall scheme of things.

I have such an issue with this. I am accomodating because my child is suffering due to inflammation of the brain. When she is better (inflammation is lowered) she doesn't have these OCD issues. They just go away. I don't feel like people with a pandas child should be expected to just stand back and watch their children suffer. (my dd cannot do erp when she is in an exacerbation and she's better when she's not) We went to a well known psychologist who specializes in erp with children with ocd and she is the one who pointed us toward pandas because of her innabilitiy to help her. She said to me, as long as she still has an active infection, I cannot help her. When her ocd begins to ask too much of me (I do refuse to switch lights on and off for her, etc.) I do take a stand in what I am willing to do or not do. But I do things like bring her food when she can't get off the couch seems like a no-brainer if I want her to stay healthy. what do you think? Momaine- We are not dealing with severe OCD right now. Since our recent uptick of symptoms mid-January it's been slowly creeping back more & more. My daughter would always go in remission between episodes and her ocd/phobias would go away until her next episode. Then in June 2009, her symptoms became chronic. Her first 3 IVIG's helped some and then we found out she had lyme. We then started treatment for lyme and she did great (best we've seen in 2 years). Her next IVIG set us back 8 weeks (more so in other symptoms). Then in January, I think she got a strep infection and mild ocd/ other symptoms rolled back in. We had a 5th IVIG first week of March, but can't say I've seen any improvement. Her last two IVIG's caused a huge herx for 6-8 weeks afterwards. Anyway, I keep thinking her ocd will go away with the right treatment (like before) so I tend not to address it like I have in the past, but now I'm not so certain. But, my daughter's not in a severe exaberation, just back to her chronic increased baseline...mainly anxiety, emotional, oppositional, and now some increased ocd again.

This is geared more for younger kids, but my daughter will still draw pictures of her fears. If your daughter is afraid dandelions are taking over the world (like my lawn at times lol) you may draw a picture of people stomping on them (we like to add funny/strange faces) and then a picture of herself accomplishing the task. Or if she is afraid of touching them, you could draw pictures of what the dandelion may feel like (feathers, cotton balls). You could make a dandelion patch with cotton balls glued to straws in a shoebox lid. If she is afraid they will make her sneeze, you may need to address the fear of allergies/sneezing. Or is it possible, she may be afraid of bees that they attract. Just some thoughts.. A good activity book (with places to draw your worries) is "Worry too Much", A kid's guide to overcoming anxiety by Dawn Huebner.

The tindamax causes a lot of herxing in our case. My daughter takes it weekends only. I recently stopped it for 2 weekends and only one day on Easter weekend -- when she started back on it we really had an increase of the same symptoms you mention. btw, it screams Bartonella to me--especially with the tummy pains. You may want to check the Bartonella titer with Specialty Lab (division of Quest lab). They have a more specific test. You may want to do 2 days this weekend until you speak with the llmd. Our doctor said if my daughter herxed too bad we could take it down to one day's dose, but not to make a habit of it.

That is one giant leap you made! Way to go! My daughter has also had a lot of these strange irrational fears over the years. For my daughter, what I would do next is to see if she would like to make some kind of small habitat (homemade tiny bed) for the dandelion, keeping it in the baggie of course. Maybe make it a fun project to create it a beautiful home. Then see if she is willing to bring it into the house, room, exc. Also, do you know what is driving the fear? Sometimes it's so hard to figure, especially when they're not willing to discuss it. Do you think its the feel of them? Maybe she's worried about allergies?

Thank you Nancy for sharing. I too have become more accomodating...something I need to work on.

When you say GSE do you mean grape seed extract?? I had an absolutely terrible reaction to that which is why I had to stop taking theralac. I remember reading on the forum a long time ago that grape seed extract also aggravates crohns disease too. If GSE stands for something else then sorry! I'm way off topic. Is grape seed extract in Theralac? Thanks. Yes grape seed extract is in the theralac that I was taking. I have some of the children's Therelac powder in my frige. Just checked...I don't see it listed. I ask, because my daughter had an increase of symptoms when we tried it months ago, and I stopped it. Since GSE is sometimes used to treat lyme, it would explain the herx. I had the capsules as well, but I ended up taking them myself.

When you say GSE do you mean grape seed extract?? I had an absolutely terrible reaction to that which is why I had to stop taking theralac. I remember reading on the forum a long time ago that grape seed extract also aggravates crohns disease too. If GSE stands for something else then sorry! I'm way off topic. Is grape seed extract in Theralac? Thanks.

We are the complete opposite here. For 6 weeks after the ivig we deal with increased oppositional behavior, hyperness, impulsiveness..

Was your child diagnosed with Babesia? Babesiosis is now a nationally reportable disease in 2011. All states must report it. You will also no longer be able to give blood (thank goodness) if positive. We are positive for lyme by Igenex standards. Never received a call from the CDC though. We get our next set of labs done shortly.

Yeah, I also hope it gets better with treatment. My daughter only eats a handful of foods. It's torture watching her attempt to eat something she doesn't like. I could always tell it was more than just being stubborn. One Thanksgiving, after seeing my brother's kids plates loaded with food, I insisted my daughter eat a bite of stuffing. It took a good 15 minutes of her swallowing/gagging to get it down. After seeing this, I told her she didn't have to eat it, but then her ocd made her continue until she succeeded. I was mortified, while 12 people watched and worried she would vomit. Oh boy, I learned not to push new foods while eating out. Ok...too many details...sorry.