Help with daily stuff

[laure]

Last time I asked for help with getting blood drawn, I had a great response. So now I ask - how do you get your kids to wash their hair? We are shooting for once a week, she NEVER brushes (like 3 months now) it looks awful, but true dirt and grease is revolting and I can't send her to school like that. She looks homeless regardless (T-shirts 3 sizes too small with holes, etc.) but she won't wear anything new. ) Brushing teeth is also a struggle, and putting cream or neosporin on raw hands from ultra-hand washing is impossible. I have to sneak in in the middle of the night to do that. No sleeping for me, but that is the least of my worries. Looking for all of your expertise in these areas. I cannot force issues, but health is my main priority right now, just hoping she doesn't die of scurvy or tooth decay before we conquer this PANDAS stuff.

[dcmom]

I will try to reply more in the AM.

 

But- my biggest suggestion is that you need medical and psychological help. We had these type of issues also, it is not easy. Antibiotics and steroids were a lifesaver for my girls. With the help of a psychologist, we worked on a plan (with LOTS of rewards) to get dressed, bathe, etc.

 

Teeth are a huge concern of mine, I admit I did a few forced brushings. Dental work can cause pandas to flare in some- so that was non negotiable for me.

[forjpj]

Sorry, can't really help much, but I feel your pain!! We have exact same issues, and I gave up!! What I wouldn't give to see my son in a nice pair of khaki's with a nice polo shirt!! Thank goodness we had my son's teeth sealed before this all broke loose. Once in a while, I can get him to brush with baking soda and water, but not often. The sticky sensation is a big problem for him so he can tolerate the baking soda better. As for shower, when he does it, it has to be in "his own" bathroom, where no soap, or anything sticky has been for quite awhile. So he will basically, just stand under the water for a few minutes. I'll take what I can get. Oh, and I had to remove the shower curtain at one point...so I would stand there with towels everywhere to keep the water off the floor. Now, I have a new shower curtain up that is okay with him, but it cannot be in the tub, so it still has to drip all over the floor. How about a good pool? The raw hands is a tough one cause you know it hurts, and it just opens them up to other infections. I'm impressed you can get cream on at night! Does she realize you have put it on when she wakes up?

[Iowadawn]

laure-

 

We can certainly empathize w/ your situation. And, unfortunately I have no new ideas that you probably haven't already tried. "When you do this...You can do this favorite activity" Charts-NOT! Stand on your head! Let's brush our teeth together, Susie-Q. Not. The hygiene stuff happens soooooo much more easily when they are not in a downswing. One idea that has worked-on occasion-if my boy happens to be staying at my sister's for a day or short visit it has worked to get him in the shower/brush teeth extra good w/ the cousins over there. There are no great answers. Hopefully, your child has a mouth with baby teeth. My boy is doing better (not great) now with permanent teeth in. Wish I could be of better help. Dawn

[kimballot]

Last time I asked for help with getting blood drawn, I had a great response. So now I ask - how do you get your kids to wash their hair? We are shooting for once a week, she NEVER brushes (like 3 months now) it looks awful, but true dirt and grease is revolting and I can't send her to school like that. She looks homeless regardless (T-shirts 3 sizes too small with holes, etc.) but she won't wear anything new. ) Brushing teeth is also a struggle, and putting cream or neosporin on raw hands from ultra-hand washing is impossible. I have to sneak in in the middle of the night to do that. No sleeping for me, but that is the least of my worries. Looking for all of your expertise in these areas. I cannot force issues, but health is my main priority right now, just hoping she doesn't die of scurvy or tooth decay before we conquer this PANDAS stuff.

 

 

Hi - I am wondering if you daughter gets OT. It sounds like her hygiene issues may be related to sensory defensiveness. OT cannot remove sensory defensiveness, but they may be able to give you some techniques to take the edge off. Also, if you are using ibuprofen for inflammation and/or any supplements for calming such as 5htp or valerian root, you might try giving her those before the hygiene event. Tpotter also swears by peanut butter for rages... maybe that would work before a bath?

 

That reminds me - she may tolerate a warm bath better than a shower as the water is not beating down on her. She will also likely do better washing her own hair than she would having you wash it for her (I don't know how old she is). She may need to wrap up in a large towel when she is done and NOT lightly rub the towel on her skin. If she is refusing new clothes, it may be the sensory piece also. You can try shopping at Good Will for some "warn in" clothes that are not completely "warn out".

 

You may also want to try some of that dry spray shampoo for between washes. It may help also.

[norcalmom]

when ds was young (before we knew he had pandas) he HATED the shower. We could get him to take a bath. When it came to hair time, we had him wear a mask (not little swimmers goggles, but a snorkle mask) he also held a dry towel over his face. while I scooped water with a large plastic measuring cup to rinse his hair. he would dunk his head (with goggles) to get wet hair wet, but wanted to rinse instead of re dunking. I thik the noise of the shower bothered him as much as the water if not more, and that is why bath worked, but as I write that I'm thinking, hey - maybe ear plugs would be helpful too? will your daughter swim?

 

Is there a comfortable beauty salon that she might allow to wash her hair for her? sorry I can't be of more help.

[pixiesmommy]

This really did come only with time for us. There were times when we just held her down and did it, if it was really bad. Sometimes music or counting would help... like it would distract her AND it would feel like there was an end in sight to the dreaded activity.

 

These are some things that sometimes worked:

 

-Standing with her to do the activity (getting in shower with her, standing and brushing teeth with her, etc.)

 

-Going to a salon and getting it done there instead (have no idea why- maybe because she was sure the water would not get in her eyes)

 

-Having her lay on the kitchen counter and play "salon" at home. Roll towel for under neck to cushion it and tilt head back into sink to wash.

 

-Various toothbrushes - electric, flashing, small, large, soft, hard, etc. Even baby rubbery ones. Various toothpastes or none at all. There are ayurvedic ones and homeopathic ones that don't have all the chemicals too. There is also tooth soap which could be fun. Some tooth soaps/pastes foam more than others, etc.

 

-Rewards, though sometimes this set us up for disaster because she could NOT do the task but would get upset that she coudl not have the reward

 

-PECS (you can google this if you don't know of them) they are little pictures/icons used for nonverbal people to show emotions or to show what happens next in the day like on a chart or you can velcro them on a vest, etc. I think it helped her feel in control if she could choose when to put the tooth-brushing and shower (by using the PECS) in her days.

 

-Playing music or singing, or parent/sibling doing something funny/silly, etc while she cooperates with hygiene. I would often sing stupid made-up songs or make weird faces in the mirror, or even draw on the mirror with soap or lipstick or whatever while she brushed teeth if she would do it. Whatever works!!!

 

Hope some of this helps. I agree with getting an OT. I have heard that Easter Seals can help with finding doctors and they offer free therapy too, but I have no personal experience with them.

[thereishope]

As for washing hair and baths, I think my son went 2 weeks once without bathing. Luckily, he has super short hair so it wasn't too obvious. Bathing for awhile was a 2 person job. They do sell water free shampoos and cleansing wipes for when she really needs it, but do continue to try to get her bathe. You never know when it will the time she is ready to do it.

 

Also, Eucerin (not the lotion but the petroleum/mineral oil stuff) helped my son's bleeding hands. Lotion can cause a burning feeling and that's why they will freak out when you want to put stuff on them. Also, some may disagree with this, I did plant the idea of wiping his hands on his pants to "wipe off gerns and contamination" in order to try to limit the excessive hand washing. I saw this as a way for him to be able to endure school better since he couldn't continually go to the bathroom. Yes, I replaced one compulsion with another, but it kind of helped him function more and helped with the raw hands. He still did excessive hand washing, but not as much as before. Now, he does neither.

Edited September 20, 2010 by Vickie

[laure]

As for washing hair and baths, I think my son went 2 weeks once without bathing. Luckily, he has super short hair so it wasn't too obvious. Bathing for awhile was a 2 person job. They do sell water free shampoos and cleansing wipes for when she really needs it, but do continue to try to get her bathe. You never know when it will the time she is ready to do it.

 

Also, Eucerin (not the lotion but the petroleum/mineral oil stuff) helped my son's bleeding hands. Lotion can cause a burning feeling and that's why they will freak out when you want to put stuff on them. Also, some may disagree with this, I did plant the idea of wiping his hands on his pants to "wipe off gerns and contamination" in order to try to limit the excessive hand washing. I saw this as a way for him to be able to endure school better since he couldn't continually go to the bathroom. Yes, I replaced one compulsion with another, but it kind of helped him function more and helped with the raw hands. He still did excessive hand washing, but not as much as before. Now, he does neither.

[laure]

Really? He does neither? That would be incredible! How did that happen for you?

[NancyD]

In addition to the great ideas here, I will just add two things that worked well for us:

 

(1) an incentive that DD wanted REALLY badly, but it had to be attainable. For her, it was horseback riding. My rule was, if you want to ride you have to come home, put your clothes in the hamper, take a shower/bath, and wash your hair before doing anything else. DD started out riding twice a week and then that grew to three times and then, before I knew it, she was riding 6 or 7 days a week and working at the barn all weekend long. And she was taking a shower and washing her hair each day. Yes, it was hard for her in the beginning and it cost me, but after a while she got used to it. Moreover, it was a healthy activity for her and it replaced OT, which she no longer did after age 11.

 

(2) Because my DD was on an IEP I could build a cleanliness goal into her IEP. She attends a wonderful private school and her counselor and I work together as a team. DD worked hard to please her counselor and teachers at school (much more than she tried to please me) so they would remind her that she needed to wash her hair that night and wear clean clothes to school.

 

When she was little I used to keep her hair cut really short (in a pixie) because she hated having her hair brushed. As she got older and wanted her hair longer I told her okay as long as she brushed it. Again, she was self-motivated.

 

Our kids need to be highly motivated to do the things they really hate doing. For years I spent my day coming up with ways to motivate her and backup solutions when they no longer worked. My daughter found an excuse for everything and could argue anyone into the ground about anything. It was exhausting and I had to choose my battles carefully. I knew that anything could tip her over the edge and into a full-blown violent rage. But, it got easier once the treatments began working. For us, it was finding the right abx and getting IVIg.

[dcmom]

Laure-

I know this is so hard. My daughters both had these issues. My little one, 6 at the time had it the worst. It definately went hand in hand with her health, and the more successful we were at treating her pandas medically, the better these issues became. When she was "healthy", we had to work a little to break some bad habits- but right now I am happy to say hygeine is not an issue at all.

 

My older one, 9 at the time, had a milder form of this- but as she sunk to crisis level it became worse also.

 

First- I re prioritized life (which I am sure you have done), and pared hygeine down to the minimum.

 

In the morning, I really only required breakfast. During the worst times she went to school in footeed pjs (luckily she was in K) and rainboots! Obviously if your daughter is 9- this won't work. For my dd the issue was comfort (sensitivity), but there was more, there was ocd wrapped around the sensitivity- where she was really worried about the possibility of being uncomfortable. So, for clothing- I would try to find the minimum that you can bear and she will agree with. Can you buy some gymboree or hannah anderson leggings and a tunic- in plain white and gray. This is the time to get her into some kind of clothing EVERY DAY- and get her out of the house in the morning EVERY DAY- even on weekends. See if you can get her to school in something halfway decent (and I really mean halfway- the minimum standard you could accept) and send her to school but pick her up prior to lunch (so she only has to do a half day in the outfit) and do a reward- lunch out? shopping trip? rent a movie? Ease her into it- but at the same time be firm that she takes the next step.

 

Bedtime should start early. Maybe don't allow tv during the day (if that is possible)- have an early dinner, then she has to brush her teeth and hair, get in PJs and lay out the outfit for the next day. Then reward her with her favorite show. I insisted on teeth. If needed, I held her down and brushed them, because like I said dental issues can cause a problem for pandas kids. I don't like to force things either- but if it comes to it, and it will cause them harm not to do it- that is the option I chose. It didn't seem to affect the outcome- in fact, she HATED when I held her down, so the next few times usually she would cooperate. It will be much harder with a 9 yr old- my daughter was 6- but TINY. You can empathize- I am sorry, I know brushing your teeth is hard, but there is no option, if you do not brush your teeth you will have cavities. I love you and it is my responsibility as a parent to keep you healthy. I did let brushing in the morning go. If at all possible, ACT rinse is helpful. I also get them in for a dental cleaning every 3 months.

 

I only required hair brushing at night before bed. (luckily she has thin blonde hair that falls into place). I would hold her and brush if I needed to.

 

We REALLY minimized the baths. At age 6- I could get away with once or twice a week- and that is what we did. I have done sponge baths standing in the tub if needed.

 

We did all of the hard stuff at night. I tried to stay very calm, nice and matter of fact with it. Your daughter will definately react to your level of frustration. We did this for months- it was okay. Mornings were hard- so she really had to do nothing other than get dressed. She got a wrapped prize every morning on the way out the door to school.

 

All of these things helped us cope- but the only thing that really helped was treatment from a real pandas doc. Both dd's needed abx, then steroids, then eventually pex. But- they are pretty well now- no hygeine issues- some minor clothing sensitivities.

 

Our psychologist was helpful in helping me to plan this stuff out, and in having someone to talk to

 

Hang in there- your daughter will get better. The hard part is, they know this is going on: two weeks before my older daughter (who had taken to wearing only old tshirts and shorts, and avoiding bathing, etc) had pex, I was in target with her and she saw a cute dress. She said maybe after pex I will want to wear dresses again. (so sad) But- she does! So there is a light at the end of the tunnel- and it doesn't have to be pex, many here get remission with long term high dose antibiotics and steroids. Have hope, and give your daughter hope too...

[laure]

Laure-

I know this is so hard. My daughters both had these issues. My little one, 6 at the time had it the worst. It definately went hand in hand with her health, and the more successful we were at treating her pandas medically, the better these issues became. When she was "healthy", we had to work a little to break some bad habits- but right now I am happy to say hygeine is not an issue at all.

 

My older one, 9 at the time, had a milder form of this- but as she sunk to crisis level it became worse also.

 

First- I re prioritized life (which I am sure you have done), and pared hygeine down to the minimum.

 

In the morning, I really only required breakfast. During the worst times she went to school in footeed pjs (luckily she was in K) and rainboots! Obviously if your daughter is 9- this won't work. For my dd the issue was comfort (sensitivity), but there was more, there was ocd wrapped around the sensitivity- where she was really worried about the possibility of being uncomfortable. So, for clothing- I would try to find the minimum that you can bear and she will agree with. Can you buy some gymboree or hannah anderson leggings and a tunic- in plain white and gray. This is the time to get her into some kind of clothing EVERY DAY- and get her out of the house in the morning EVERY DAY- even on weekends. See if you can get her to school in something halfway decent (and I really mean halfway- the minimum standard you could accept) and send her to school but pick her up prior to lunch (so she only has to do a half day in the outfit) and do a reward- lunch out? shopping trip? rent a movie? Ease her into it- but at the same time be firm that she takes the next step.

 

Bedtime should start early. Maybe don't allow tv during the day (if that is possible)- have an early dinner, then she has to brush her teeth and hair, get in PJs and lay out the outfit for the next day. Then reward her with her favorite show. I insisted on teeth. If needed, I held her down and brushed them, because like I said dental issues can cause a problem for pandas kids. I don't like to force things either- but if it comes to it, and it will cause them harm not to do it- that is the option I chose. It didn't seem to affect the outcome- in fact, she HATED when I held her down, so the next few times usually she would cooperate. It will be much harder with a 9 yr old- my daughter was 6- but TINY. You can empathize- I am sorry, I know brushing your teeth is hard, but there is no option, if you do not brush your teeth you will have cavities. I love you and it is my responsibility as a parent to keep you healthy. I did let brushing in the morning go. If at all possible, ACT rinse is helpful. I also get them in for a dental cleaning every 3 months.

 

I only required hair brushing at night before bed. (luckily she has thin blonde hair that falls into place). I would hold her and brush if I needed to.

 

We REALLY minimized the baths. At age 6- I could get away with once or twice a week- and that is what we did. I have done sponge baths standing in the tub if needed.

 

We did all of the hard stuff at night. I tried to stay very calm, nice and matter of fact with it. Your daughter will definately react to your level of frustration. We did this for months- it was okay. Mornings were hard- so she really had to do nothing other than get dressed. She got a wrapped prize every morning on the way out the door to school.

 

All of these things helped us cope- but the only thing that really helped was treatment from a real pandas doc. Both dd's needed abx, then steroids, then eventually pex. But- they are pretty well now- no hygeine issues- some minor clothing sensitivities.

 

Our psychologist was helpful in helping me to plan this stuff out, and in having someone to talk to

 

Hang in there- your daughter will get better. The hard part is, they know this is going on: two weeks before my older daughter (who had taken to wearing only old tshirts and shorts, and avoiding bathing, etc) had pex, I was in target with her and she saw a cute dress. She said maybe after pex I will want to wear dresses again. (so sad) But- she does! So there is a light at the end of the tunnel- and it doesn't have to be pex, many here get remission with long term high dose antibiotics and steroids. Have hope, and give your daughter hope too...

[laure]

Thanks for all of the great feedback. I almost cried this morning after reading some of the long posts and so many helpful ideas, and HOPE, which is what I need now most of all. We have had no psychology therapy or OT yet, since she still has 10 days before she sees Dr. B for the first time, she would never agree to it anyway right now, and you all have told me (I'm certain accurately) that she will more likely be open to this after the proper regimen of abx, steroids, etc. is administered. For now, I have to carefully, without touching her mouth, place two advil and one augmentin in her mouth, hold the juice glass up to her mouth for her, and then just get her out the door in the morning, whatever it takes...I actually could not care less what she wears (and actually never have with any of my kids) as long as she is clean. Just striving for no body odor, stringy greasy hair, or bad breath for now...

What is so hard for us is that we question our parenting, and just wondering how much emotional damage this all is doing. Like all parents we had such high hopes, and we sort of thought we had this gig figured out - brother at Cornell, sister likely attending Williams or Bowdoin next year, great relationships with both - and this poor child we are always rushing, enforcing, speaking sternly to, getting frustrated with, sighing, etc. because it is so hard to keep her on track and moving in the right direction. As much as we try to be patient, she is 9, and sensitive, and can read our reactions and expressions. So we hope, if she gets healthy one day, that the relationships can be repaired. I hope she will read a book again, and write pages and pages using up all our printer paper again (can't believe I used to get angry at her for that), and play endlessly talking to herself with her dolls again, etc. etc. I know she is still high-functioning compared to some poor kids...and my standards are dropping, believe me. How this does make me empathise even more with parents of special needs children. Maybe if this is ever all over, I can find a way to help those folks out...

[dcmom]

HI Laure-

 

You will get your daughter back- and more importantly, she will get herself back.

 

This happened to our older daughter at age 8.5. She is our oldest. We are/were fairly strict and she was thriving, she was a high achiever in everything she did, and such an enthusiastic sweet girs. YOU need to hang on to who your daughter really is- because she is there, under all of the ocd, fears, and anger. AND you will be the one to help her find herself, and remind her of what she can do, once she gets treatment.

 

My dd has really turned around. YES we still have residual issues, BUT they do not interfere with her life. She still has some anxiety, and I think some cognitive difficulty (spelling- but no problem with conceptual). BUT- we can talk about it and work on it. We let go of everything during crisis. It was basically get her to eat, and not be miserable. She was out of school for 2 months.

 

But, after treatment she went right back to school- and the teacher commented that she was immediately back on track. At home, I could tell it took a bit longer, but she is doing really well now. I have let go of a lot- eased on schoolwork, extra curriculars, room tidiness, etc. But- I try to be tough on the ocd- which means we go out if she doesn't want to, we eat out, she tries out for the school play (because she wants to) even though the anxiety is high, etc. And I am militant when it comes to a healthy lifestyle (to bed early, eating healthy with frequent snacks, limited screen time, time outdoors and family activities).

 

Oh- and one thing I wish I tried much earlier- Melatonin if your daughter has trouble getting to sleep at night (although don't use with steroids).