Brief Update

[nojo]

Hi all, I haven't posted in a while, we've been quite busy with our journey. I wanted to let you know we've had some improvement, and how that has happened for us. A quick history: I have 2 daughters, dd8 has pandas, dd7 does not. Both daughters constantly test positive for strep. They are 14 months apart in age and very close, so they share everything, if one gets sick, the other gets it. The difference is that the younger daughter never got as sick.

 

DD8 has severe asthma. Missed 5 months of Kindergarten because of asthma. Had rages, OCD, sensory issues, eating issues, urinary frequency, constant strep infections. We constantly tested positive for strep ( no rise in blood markers, always positive rapid test, sometimes negative on long term culture though). Saw Dr. Latimer, had Cunningham test, scored around 172ish, found out had the choreform (sp) movement in hands, also had blood work done, showed igg deficiency. We had already missed 2 weeks of the first nine weeks of school due to illness this year. The school we were in initially refused to work with us, even to give her a 504 plan for her asthma (which was obviously very clearly documented). My husband and I had charted all of our illnesses just for the past 2 years, and positive strep tests (10 in the last calendar year alone), which antibiotics were used, for how long etc. We decided to not use our energy to fight the school system, and focus on getting her healthy. The only time she was healthy was when she was not in school.

 

We withdrew both of our girls from elementary school the day before Thanksgiving and began homeschooling. We were told it would do no good to keep our younger daughter in, she would just bring the germs home. We wanted to try to heal in the least invasive way possible. She is sleeping at least 12 hours a night. We got a season ski pass to try to build up her lungs and stimulate her appetite. We are eating healthy foods when hungry (and not on a time limit). We are doing our school work in about 3 hours a day. We are finally not sick, so she can go outside and play with other kids after school. We've only had one major asthma flare up this winter ( and one round of prednisone). We had spent months and months on prednisone the winter before, essentially treating the PANDAS, b/c of the asthma. We actually did test negative for strep on the rapid test recently. It is slowly changing, but she'll put on clothing and shoes (a variety of outfits without a fight). My husband I and just noticed, we don't fight at dinner, she eats food. Different foods. I haven't had to wrestle her to the ground and hold her down in months to control a rage.

 

I know we aren't healed. We just went on a girl scout camping trip for the weekend, and by the end we were on the nebulizer and antibiotics. One of the girls had strep ( of course we found out later). My daughter tested negative, but the dr. and I could tell, she had the look... We were just early and could see the signs. Hopefully we caught it early. After one dose of antibiotics, her coloring changed. This may just be a band-aid for now... but she is a different child. We aren't keeping her from other children, we're just not keeping her in the sealed building with all the germs all day.

 

I know this isn't a feasible for all, but for us, it is helping. We also just got a good check-up for her lungs too!

[thereishope]

I'm so glad you are seeing improvements! Sending your child to school while they are in an exacerbation or the early stages of healing is so hard. There are "silent threats" everywhere (illness). For your family, it seems pulling them out was a good decision. I know I am very anxious for summer break to get here.

[dcmom]

Thank you for your update!

 

I am so glad you are seeing improvement! Bravo for taking (somewhat) drastic steps to help your daughter heal, and have a normal life.

 

I often think homeschooling is what my kids need. School can feel like such a rat race sometimes, up early, in school all day, homework, and then maybe an activity. My kids both seem to need more sleep than they used to as well, and always feel like I am waking them before they are ready on school mornings. I would love to give them a day off here and there, but for them with ocd it is a slippery slope, so we try to get there everyday. No matter what I do, someone at school is ALWAYS being diagnosed with strep. My kids both REALLY love and thrive at school, that is why I keep them there. But, I have been lucky with our school- I can take them out for a week at a time (when strep is going around), and the teachers work with me.

 

I can't wait for the summer!

 

Do you think it is the exposure to strep that was causing the pandas and asthma?

 

Please continue to update us!

[nojo]

Thank you for your update!

 

I am so glad you are seeing improvement! Bravo for taking (somewhat) drastic steps to help your daughter heal, and have a normal life.

 

I often think homeschooling is what my kids need. School can feel like such a rat race sometimes, up early, in school all day, homework, and then maybe an activity. My kids both seem to need more sleep than they used to as well, and always feel like I am waking them before they are ready on school mornings. I would love to give them a day off here and there, but for them with ocd it is a slippery slope, so we try to get there everyday. No matter what I do, someone at school is ALWAYS being diagnosed with strep. My kids both REALLY love and thrive at school, that is why I keep them there. But, I have been lucky with our school- I can take them out for a week at a time (when strep is going around), and the teachers work with me.

 

I can't wait for the summer!

 

Do you think it is the exposure to strep that was causing the pandas and asthma?

 

Please continue to update us!

 

Honestly, I don't know exactly why it is helping. I'm not really sure if we were constantly reinfected, or if we just could never get well. Deep down, I know something isn't right with her immune system, and the way her body responds to strep still but it is a balancing act with what my husband and I are willing to do. I have fairly good records that I've charted the trends, but some information that would help is incomplete. Whenever she was around other kids (starting with a one week summer camp last summer) the whole strep cycle started again. We would test positive on the rapid test, negative on a long term culture, but also not show up in the blood work as having strep. I knew she still had strep, especially since her sister would have strep rash. The strep in turn would flare her asthma, and the cycle would continue. Once it started at the camp in July, it didn't stop until after we withdrew from school

 

We did consult an immunologist, who said although technically she failed igg levels, she did mount a response to vaccines so they didn't recommend ivig at this time. They didn't retest pneumo titers, she had failed that 2 years prior and been revaxed. We did not push for further testing or ivig at that time because we wanted to give her a break.

 

My thought at the time was if I don't want to add anything into her (like ivig) the only other thing I can think of was to keep her away from the germs. Since my previous charting seemed to back this theory up, we thought it was worth a try. Besides, the swine flu was rampant, and with her asthma alone, we were in the high risk group. We figured if it didn't work, hopefully at least the girls would have good memories of this year and the time we spent as a family.

 

My hope is for the long term as she heals the germ exposure won't be so devastating. I do hope I'm not kidding myself though. My fear is we're just avoiding the bigger immune issues that ultimately we can't just hide from everyone.

 

I honestly don't think she had the stamina for school. She still hasn't really gained weight she hasn't lost anymore. She's stable. I really think the extra sleep is helping too. Both girls still got to school for girl scouts, and don't miss going to school at all. They love the home schooling ( I'm surprised a little, I used to love school).

 

Anyhow, hope that can help someone else.

[bronxmom2]

Hey nojo, I did something similar-- pulled my kid from school in October. I am so glad I did.

It made a big, big difference. First, his immune system is not under constant attack.

Looking back, he was sick from the time he started preschool at age 3.

 

Also, his extreme excitability made school torture for both of us-- he was in a gifted school where good behavior was expected. Neither of us felt accepted. When I tried the regular school around the corner, it was worse because he was so bored.

 

And so many of these kids have learning differences. School focuses on the two things that are often agonizing for PANDAS kids: math computations and handwriting. My son will read about history all day, but they're never allowed to do that in school.

 

Perhaps I am wildly overprotective, but in my heart I know I am doing the right thing for him, even if it means taking the whole family off the grid.

 

Good luck on continuing recovery. Is your child off antibiotics? Mine is still on them, and I am doing the bimonthly IVIGs with my son. He has the same IGG deficiency so many of these PANDAS kids seem to have. (As do I.) At first the IVIG seemed to make him worse. Now (3rd treatment) he is definitely better.

[nojo]

Hey nojo, I did something similar-- pulled my kid from school in October. I am so glad I did.

It made a big, big difference. First, his immune system is not under constant attack.

Looking back, he was sick from the time he started preschool at age 3.

 

Also, his extreme excitability made school torture for both of us-- he was in a gifted school where good behavior was expected. Neither of us felt accepted. When I tried the regular school around the corner, it was worse because he was so bored.

 

And so many of these kids have learning differences. School focuses on the two things that are often agonizing for PANDAS kids: math computations and handwriting. My son will read about history all day, but they're never allowed to do that in school.

 

Perhaps I am wildly overprotective, but in my heart I know I am doing the right thing for him, even if it means taking the whole family off the grid.

 

Good luck on continuing recovery. Is your child off antibiotics? Mine is still on them, and I am doing the bimonthly IVIGs with my son. He has the same IGG deficiency so many of these PANDAS kids seem to have. (As do I.) At first the IVIG seemed to make him worse. Now (3rd treatment) he is definitely better.

 

For us, we started with the constant illness as soon as we started preschool also. I remember asking if we should pull out, and the doctors originally told us no, that it was normal to become a little more sick when you start school, but finally, this year we had 3 different doctors tell us what we were doing wasn't working, and we needed to pull out of school.

 

Our daughter got RSV twice in one year when she was 2, both times resulting in hospitalization. The kids that get RSV that bad they don't know if that damages their lungs and cause asthma, or if their lungs are already weak and susceptible to the RSV virus. She started getting strep from the first week of school, which would in turn weaken her, and cause flare ups. She also was found to be highly allergic to mold, and we tried switching schools after we found out the preschool had flooded once during a hurricane. (When she went in that room while already starting to get sick, she ended up in the emergency room. It was only later that we could piece together everything).

 

From the charting when she was on homebound for Kindergarten, we could see the vast improvement. She was out for 3 months, came back to school, and only made it for 2 weeks before getting really, really sick again. It was devastating because she was so strong going back.

 

Currently we are off antibiotics prophetically. I'm not sure I fully agree with that decision, but I've agreed to try it. Since we are avoiding most exposure, it has been ok. I am very quick to put her on at the first sign of illness or exposure. I've signed her up for art camp this summer (3 hrs in morning for 1 week), and I'm seriously thinking of going on antibiotics for the week. Ironically, we almost have more social interaction now that she isn't so sick all the time. I'm even thinking of signing up for an extra curricular activity.

 

I think the hardest part is that we live in a neighborhood where everyone walks to all three levels of school. It is hard to be different.

 

Sorry to ramble, there aren't many who understand. I've realized we've come along way when we were able to actually go try on clothes yesterday, and she ate food without fighting for every bite. But, we still have a way to go, and it always is so tenuous. When do you ever not worry about a relapse? When are you not watching for every little sign?

[Doug]

Hello, do you have a web site that you use for homeschool?

My daughter is 10 weeks post IVIG and she was pulled out

from school also..

We are going to try Kindergarten or test into first grade this fall

but who knows if she will make it..we pray that she does.

I am just thinking about what I may need to do if I need to homeschool her

Thanks,

Tracie

[thereishope]

Doug, how old will your daughter be for the next school year?

[bronxmom2]

Hi Doug,

We subscribe to a few courses through the k12.com website. I don't know if it's the best, but it's fine and it was the easiest thing to do. I personally fall on the "unschool" side of the spectrum (just because my son has such an unruly but powerful mind-- as do all our PANDAS children I believe)-- he spends about 2 hours every day reading and another two hours lost in a fantasy world of play-- but I did need some guidelines to follow, especially in math and science.

I think it might actually be free in a few states. Check their website.

 

If you live near a city there is probably a local homeschool group that you can join. This has been invaluable for me. I joined an elist and I get a constant flow of emails listing events we can go to. Of course we live in NYC so I am lucky. Next week our plans include: A full day of foam sword fighting in Central Park one day (a full day of social interaction, but outdoor, where I feel he is "safer"); a tour of Yankee stadium; a tour of the Lower East Side tenement museum; and a civil war reenactment at Grant's tomb.

 

This is SOOO much better than school. Plus we can sleep in.

[nojo]

Hello, do you have a web site that you use for homeschool?

My daughter is 10 weeks post IVIG and she was pulled out

from school also..

We are going to try Kindergarten or test into first grade this fall

but who knows if she will make it..we pray that she does.

I am just thinking about what I may need to do if I need to homeschool her

Thanks,

Tracie

 

Hi, Sorry for the late reply, we were gone for the weekend. I have found the book "The Well Trained Mind" to be very valuable. It is written by Susan Wise Bauer, and she talks about classical education at home and it lists many resources. I think we would be considered eclectic in our approach. She has also developed some actual teaching materials, we used some of her materials for writing and grammar. We use a program called Singapore math, and I just ordered a core curriculum from a religious company called Sonlight. There is also a book call 100 Top picks by Cathy Duffy that was very helpful, not just in choosing curriculum, but in determining your child's learning style and your learning/teaching style.

 

The one thing that I think really helped us was I started slowly, and as we grew more comfortable, I added in more subjects. We are able to get our work done in 2-3 hours a day, 4 days a week. My children really do enjoy it. Homeschool associations are also a good resource.Feel free to email me if you want more information. I was really scared at first, but it has been very good for her health, and I do enjoy my girls. My husband can also see a difference in how they are learning.

 

Noelle

[Doug]

Doug, how old will your daughter be for the next school year?

she will be 6