philamom

My daughter's Anti D-2 were also 16000, Cam K 136. It was done 3 years ago though. Curious if you're doing high dose or low dose IVIG?

I was there prior to remedy. She developed a swollen eye and itchy eyes nose and face. Earlier in the week she said her throat felt weird. She has been so nauseous, I didn't think. Low and behold, she is allergies to Flagyl. She has been off since yesterday. Swelling and itchiness gone, but the rash is taking some time. Throat culture today neg. she rarely tests positive. With rapid. Re did c diff culture today to see where we go next. She has been out of school for 10 days! We are considering a tutor. I don't want her to fall behind. The c-diff culture may be negative since she just stopped the flagyl. If gastro symptoms continue, you may want to reculture again in another 7-10 days. Sometimes they check by testing 3 stool samples.

No offense taken. She is the one who came up with the time period. From 2-3:00 it's hands on, so her mind is more focused on the project at task instead of worrying about a child vomiting. Basically, no academics. Then it's recess, pack-up & time to go home. Is that what you mean? But even with her deciding that, when push comes to shove, the fear is still greater and it is extremely difficult. When we meet with her teacher (the one who will be back in November - not current one) in an hour, we will discuss/include her in the plan of action. She is going to have to take on daily ERP for the vomiting, daily tutoring, and being forced to school for an hour and half each day. I hope she can handle it. I will check out anxietybc.com. Thanks!

Well, we received homebound instruction (5 hrs week) with a letter from our psychologist. Apparently, they would have challenged or disputed a medical note from one of our three doctors (like last year). Crazy! We had a meeting this morning at the school, with our psychologist dialed in via phone. The plan is to still try and get her in for an hour half each day at the end of the day (20 min of it is recess), while we work on exposure therapy for vomiting with the psychologist. If the psycologist doesn't see DD moving forward fast enough with therapy, we will then proceed with the USF program. The psychologist is familiar with the intensive program - has even had a few patients complete it and return to her for continuing therapy. I spoke with Dr. Storch on Tuesday- he is extremely polite. So, well see how it goes. Last night she cried for three hours over the fear of going in today and I finally gave her a benadryl at 11:30. And that was knowing she didn't have to go in until 2:00. So now her arrangement today, is to go in at 3:00 and have a talk with her teacher (who happens to be acting principal until Nov) and then recess. She adores her teacher. We'll attempt 2:00 tomorrow. The great thing today at the meeting- Dd's teacher/acting principal (who doesn't really know her full backgroung yet) asked why she had problems with attendance in 2nd grade, none in 3rd grade, and then problems in 4th grade, and also now. My answer: "the entire year of third grade was the only time she was on full abx for lyme treatment". Everyone else at the meeting isn't buying into the whole lyme/pandas dx, even with labs, doctor letters, picture of spirochettes in dd's blood culture. When (and if) she returns to school full days, I will turn to an advocate to help get that somatization label out of her IEP (that was declined). I don't want it to come back and haunt her in future years. uggh Thanks everyone for the advice and links! I have all the info printed and ready, if needed.

bumping...for any more feedback (good or bad)

It may be too early to reculture the c-diff if you are still on the flagyl. My daughter's OCD really increased when she had c-diff (over 2 years ago), and got even worse when on the flagyl. I feel for you! We are no longer dealing with the ocd symptoms we had back then, but it was was one of my daughters worse times. She raged and cried 24/7 during that time. Also want to ask - did you start the VSL and flagyl at the same time? My daughter didn't do well on VSL (tried it 2 times). It was a reaction I knew I couldn't work through. Just a thought - there are some who have no problems with it. I hope the homeopathic remedy continues to be successful!

Mayzoo- thanks again. momcap- someone pm'd me a link to connect with other homeschoolers. Great idea. I'm always in awe of the support from this forum!!

Thanks ko's mom. I will look into it. Mayzoo- located in Philadelphia Suburb.

Thank you for the info (never heard of an ombudsperson) and thanks everyone for the links. I have to admit, I know absolutely nothing about the process of homeschooling, about my rights regarding homebound programs -I'm little overwhelmed right now. Regarding the IEP- I never signed off on it. The school psychologist mailed me three copies (even received one on the last day of school). The report stated that she suffers from physical ailments from PANDAS & lyme, but also somatization well above the clinically significant range. edit- how do I find out who our ombudperson is?

I am calling them tomorrow. It took a little convincing my husband. Dd's therapist is very good. But the way we are proceeding with therapy now, it will take months before we see progress. Right now, the focus seems to be more on getting her to school than the vomit itself. The distraction tools and coping methods that she learned to use in school, are to try and refocus her thoughts. It's clearly not working. But the therapist is aware that ERP is eventually needed - she just wants to keep her in school at the same time, and then move onto exposing her to vomiting sounds, so forth. But this is once a week appointments.

dcmom- I would love to use the homebound program, but used it last year and I think they will now fight us on it. Last year, dd was taken off abx in the fall. She missed many days Sept-Dec due to physical symptoms. She was receiving some homebound tutoring while also still in school. Over the Christmas break she got worse. The Gerd symptoms caused her to constantly swallow the small amount of bile (or I guess vomit) that worked its way up. So she started with a severe fear of vomiting and couldn't leave the house. She didn't return to school and received complete homebound tutoring. She went back on abx end of Feb (took 3 months to get to full strength) and symptoms slowly decreased (physical and fear). She started back to school part-time end of March and slowly went in more hours everytime we increased her antibiotics. If we increased her antibiotics to quickly, she got physically sick again. By mid May, she was doing pretty well. She ended with full days in June. But as I said in my previous post, they placed a somatization disorder label on her. During the summer she was doing pretty good. No real signs of fear of vomiting (with her or other people). Then late July, she was in the back of my car with a friend who said she felt like she was going to vomit. My daughter started to panic and was in flight/fight mode. I was on a major highway and was unable to pull over - she was flipping. The girl was fine - car sick - never vomited, and I was able to finally pull over and have dd get in the front seat. It took 24 hours before she would get near her friend again, but we were in NJ where her friend lived, and she knew she had only a few days left to visit with her (until next summer). I then realized this still had to be addressed. But, the fear at that time didn't really take off (I guess since friend lives in NJ- though my daughter did play with her a few times after the incident before we left to come home), so I pushed it aside thinking I would address it after she was in school for a while. Big mistake. I read some of your posts on the subject. What you said really resonates with me. I am forcing her to school right now, and like you said about your daughter "throwing her in the fire, without giving her tools to deal with it". It's hearbreaking.

My daughter has a severe fear of people vomiting at school. She also at times has the extreme fear of herself vomiting. We have been forcing her to school, with limited tools to address it, and it has made things extremely worse. In the moment, she would rather jump in front of a car than be forced to go to school. The psycologist she is seeing is using distraction methods (that person may look like they're going to throw up but they're really just bored or tired...exc) and reward systems to get her into school. It is not working- period! She is being tormented with sitting in her class, looking at different kids to see if they look sick. She places kids into different categories- ones that look like they feel sick, ones that have mentioned they threw up in the past, new kids- she doesn't know their story-- it consumes her day and she can no longer focus on school work. The school gave her an index card to place on the teachers desk which allows her to leave the classroom for a short break. On Thursday, she told me that she uses it all the time to go the bathroom to break down and cry. But she can now no longer hold the tears in until she leaves the room and is breaking down in front of the class. This is not going over too well with the other 5th graders. We also have to walk her into school and to the classroom hysterically, just to get her in. Each day, the more we force her, she is doing less time, and the issue is getting worse. The school wants us to force her! There are some very few times during the day (for now) that seem to be ok. She can handle 2:00-3:40 because they move around the classroom and are enganged in hands on activity- oh, and recess is at 3:15-3:35. She can handle special because they leave the classroom. But even getting her in for partial hours is not working. Here some details on how this came to the surface this time. Four weeks ago she had IVIG (getting them for some time now). She was doing pretty good. The day after the last infusion she threw up in the middle of the night. Its been years. We've been dealing with a fear of her vomiting off/on through the last few years. It went ok that night- it was only in her bed so no big clean up. I kept my cool and it was no big deal. The next day she said she realized it wasn't that bad. The next few days (before school started) she went to a lot of gatherings with kids. She then started with some physical symptoms again (same as in the past- gerd, problems swallowing pills, daily headaches, daily stomachaches), so we are working on figuring out what caused the return of those symptoms as well. The symptoms are there when she's not in school as well, so it's separate/additional to fear of vomiting. The first day of school she was kind of excited and walked in by herself. But the school was 90 degrees with no ac and many of the kids were complaining of feeling sick. We forced her in the next 3 days and she stayed with only a few phone calls. After 4 days of being in school she came down with a sinus head cold and everything escalated. Then partial days. Now she now cries herself to sleep the night before any school day (2-3 hours). Anxiety begins at dinnertime. She was crying yesterday about tomorrow. We realized over the weekend we need to address the vomiting fear before addressing the vomiting fear at school. The school will not be helpful. Last year (4th grade) my daughter started with a flair right before the beginning of school year. A month later her d-nase & liver functions were very elevated. The doctors took her off antibiotics. Then she had erythema nodosum. More blood test showed positive ANA (and one time= positive DNA DS), extremely high sed rate, high c-reactive protein, low rbc/wbc, low iron. End of December she tested positive for lyme by culture. They sent us a picture of the spirochettes in blood. She was sick with joint pain, very pale, vertigo, and also the physical symptoms mentioned above. We finally got her back on abx starting end of Feb and took 3 months to get to full strength. She was on complete homebound tutoring Jan- March, backed by a 504 and doctors notes from three doctors. She was also dealing with the fear of (herself) vomiting and could not leave the house. When she started back on abx, her symptoms slowly got better and she started back to school- part time at first, then full days. By June, she was doing better, and even performed in a school talent show, solo. So there was clearly a difference. At the same time that she started back on abx, she was evaluated for an IEP by a school psychologist she never met before. I mentioned that I doubted she would need it, since she was moving forward to attending to full days. I knew it was only a matter of time. But the district insisted. Well, the school psychologist basically diagnosed my dd with somatization disorder. She called all our doctors to disagree with their diagnosis. She got the district's doctor involved in the calls as well. It was crazy- we had doctors notes and labs to back up her diagnosis. Anyhow, I don't see them being helpful this year. They feel I need to force her in and keep her there all day. They will let her call home at lunch. Sorry, for the long rambling post!

I just wanted to say thanks before the forum goes offline. I didn't have a chance to read all the posts/links yet - went to the doctor and then for a blood draw (long afternoon). I think we may be dealing with strep again. I'll post when we're back up again. Have a nice weekend. Thanks again!!

If the school district gives you any problem, PM me,and I'll give you the name of a very good education lawyer nearby. I'll take you up on that - I can tell there is going to be problems!!

Mayzoo- We are located in Pennsylvania edit- couldn't get the link to work. thx

Hi. My husband and I have decided to pull Dd 11 out of school- 5th grade. She is in a really bad spot right now (will give details later- dealing with a severe, severe phobia - she has tried to harm herself). I will not have the school's cooperation! Can someone please help me with details on how to go about this. I will need help as I don't think I'm smart enough (or patient enough) to teach the 5th grade curriculum. I am not smarter than a 5th grader I am lost- please help. Thanks in advance!

Your child should be treated with Flagyl or Vanomycin. They usually prescribe Flagyl first, and if that doesn't work move onto Vanomycin. You should increase probiotics, one of them being saccharomyces boulardi. My daughter had c-diff in the past. We give her daily Florastor, Culturelle, Integrtative Pearls, Klaire Ther-biotic detox, and at times, Custom Probiotics. About 250+billion cfu's probiotics daily. Increase probiotics slowly to avoid gas/bloating.

My Dd11 gets daily headaches. Started about year ago. Prior, she had them intermittently. No vomiting though. I'm sure you probably tested his liver functions, sed rate, c-reactive protein??

In my opinion, YES! Glad symptoms are subsiding.

KK- I've not read through all the posts so maybe this was mentioned, but I'm really suprised NO blood tests were ordered. Thats absurd. Not to say that negative blood tests rule out a diagnosis, but I would at the very least check ASO, D-Nase. I would also check for mycoplasma and lyme. Somewhere posted on here is a list of suggested blood tests. I ditto the advice for a second opinion.

Hello and thank you for sharing. Do you feel comfortable posting the brand name? Since your kids are picky (as is mine), did you mix it into some sort of smoothie? Thx again.

Regarding your appt. with Dr. J (assuming in CT), you could call to see if there's been any cancellations, or schedule a phone consult with him (does them on weekends) until your appt. date. He won't be able to prescribe without seeing your child, but can make suggestions to bring to your current doctor. My daughter had very high RMSF Igg titer when first tested in Sept 2010. It was 1:256 (ref range <1:64). Two years later she is still positive Igg at 1:64. In her case, Dr. J was not concerned with it (past exposure), and the antibiotics prescribed would cover it anyways. But with a 3 yr old & new tick bite, I too would be concerned. I hope she feels better soon.

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Has anyone tried Halo Oral Antiseptic? "oral antiseptic that kills 99.9% of germs that cause colds and flu" It works by coating the back of the throat and forms a protective barrier that catches and kills germs. Comes in a children version too. I read about it in Science Daily. Sounds to good to be true. Four days into school and my kiddo has a cold already.

ditto