DD8 is backsliding fast

[thereishope]

My Ibuprofen bottle says a 75 pound person can take 300 mg.

 

I think the age of when someone gets their period would be more genetic. I was no where near 100 pounds in the fifth grade. I think I was like 10 years old. I have an 8 year old boy and he's already showing thinks like underarm hair! It's so weird!

[Suzan]

My Ibuprofen bottle says a 75 pound person can take 300 mg.

 

I think the age of when someone gets their period would be more genetic. I was no where near 100 pounds in the fifth grade. I think I was like 10 years old. I have an 8 year old boy and he's already showing thinks like underarm hair! It's so weird!

 

Thanks for the dosing. I guess I could have looked at the bottle I'm sure what she is going through is not hormonal changes yet. Today I feel fairly certain it's OCD. She said she wiped a lot at school and took a lot of time in the bathroom. This morning she seemed OK. I don't know whether to wish for strep or OCD, lol. She is still not well but at least she had a good morning.

 

Susan

[ajcire]

What did Dr. T suggest?

 

 

My Ibuprofen bottle says a 75 pound person can take 300 mg.

 

I think the age of when someone gets their period would be more genetic. I was no where near 100 pounds in the fifth grade. I think I was like 10 years old. I have an 8 year old boy and he's already showing thinks like underarm hair! It's so weird!

 

Thanks for the dosing. I guess I could have looked at the bottle I'm sure what she is going through is not hormonal changes yet. Today I feel fairly certain it's OCD. She said she wiped a lot at school and took a lot of time in the bathroom. This morning she seemed OK. I don't know whether to wish for strep or OCD, lol. She is still not well but at least she had a good morning.

 

Susan

[Suzan]

What did Dr. T suggest?

 

No word yet. I'll try to call him soon if I don't hear back.

 

Susan

[Megs_Mom]

What did Dr. T suggest?

 

No word yet. I'll try to call him soon if I don't hear back.

 

Susan

 

Hey Susan - how is she doing? I may have missed if you updated after talking to Dr. T - sorry, lots of travel & work lately!

 

I found an old post about urinary urgency/frequency - it has some good info from both a "coping tools" strategy & a medical cause side of things. http://www.latitudes.org/forums/index.php?...inary+frequency I hope I just posted that right. I guess I'll know when I send this note!

 

If you want a slightly different or more extensive example that you can try at home, I'll be happy to email you my files on this topic. We've had it more than once! I still feel like there is some true medical "feeling" that starts this, but the OCD turns it into a nightmare. It's really hard to do anything when you are rushing to the restroom - and repetitive wiping can be a really painful experience. Hope this is helpful.

[Suzan]

Hi! I have not heard back yet from Dr. T but I have requested the increased dose of zith and/or clindimicin from him. I hope to hear by the weekend. He agrees that she needs higher doses and needs to stay on it so I don't think there will be any trouble once we get the new script. She is doing better though, I guess what I did increase is finally working. The wiping has not been an issue yesterday or today so it looks like it's not strep and was OCD. I have not looked at your link yet but I will later today. We go to see Dr. O on the 15th so I am anxious to update her on our trip to NY.

 

Thanks for checking on us!

 

Susan

 

Hey Susan - how is she doing? I may have missed if you updated after talking to Dr. T - sorry, lots of travel & work lately!

 

I found an old post about urinary urgency/frequency - it has some good info from both a "coping tools" strategy & a medical cause side of things. http://www.latitudes.org/forums/index.php?...inary+frequency I hope I just posted that right. I guess I'll know when I send this note!

 

If you want a slightly different or more extensive example that you can try at home, I'll be happy to email you my files on this topic. We've had it more than once! I still feel like there is some true medical "feeling" that starts this, but the OCD turns it into a nightmare. It's really hard to do anything when you are rushing to the restroom - and repetitive wiping can be a really painful experience. Hope this is helpful.

[momtotaylor]

for my daughter (and I believe MomtoT) it was a behavioral or psychological response to strep (pandas). It was ocd and/or sensory related. There was no wetness (or no more than normal) after wiping, and certainly nothing in the underwear (although she would change the underwear constantly).

 

It you find wetness in the underwear (I would say more than a drip- which could be normal) then it it something different than my dd had.

 

BTW, I think this is very common, it was mentioned in a pandas study where kids had urinary frequency and exessive toileting rituals...I have to see if I have that and link it. For us this was the MAJOR and first symptom of first episode- that ped totally missed. Oy..

 

Let me know how it goes Suzan...

 

Hi Suzan and dcmom....you are right, this is still one of the things that has stayed with us. Even though she is doing well at the moment, her potty rituals still stick. There is definitely nothing in her underwear, but she just feels "wet". She also changes them on occassion at this point. (Not as often though.) Most people can run into the bathroom and be out within a minute. We have come a long way, but after going she sits and drips for about five to ten minutes and wipes a few times. If we are in a rush and I try to hurry her along and wipe for her she gets very upset and says she is not done dripping yet. At first, she would not even wipe herself, but now she does. This has remained with us for over a year!

 

Suzan, were you able to take her for the swab? I will be thinking about you guys....

[Megs_Mom]

Here is the original ERP post, so you don't have to click through. In retrospect, this was one of the most annoying for my daughter - but in the end, one of the "easier" ones to do a baby step plan that worked for her in about 15 days. It was much harder to deal with mental rituals, and ones that did not bother her as much or take up as much of her time (such as spitting germs).

 

My daughter found that symptom (the frequent urge to pee) one of the most frustrating - it made her mad that she had to keep going & nothing came out. It is OCD (so long as you have already checked for infection), and can be treated by ERP (Exposure & Ritual Prevention) therapy (I am always, for a PANDAS child, suggesting ERP for 2 reasons - 1. to help with the final 10-20% of OCD remaining after medical intervention and 2. to help keep the child more in control during a sudden onset, so that they have some practice and a little bit of control over their own brains - to make that onset a little bit less terrifing and more understandable). ERP therapy is a form of CBT therapy. Everyone that does CBT however, is not trained in ERP. It is a kind of Behavior therapy. I like to think of it as retraining the brain to take over for the renegade OCD part.

 

The clue to OCD is a “repetitive behavior that usually causes anxiety if you can not do it”. So if you try not to pee, and that makes you anxious, then it is OCD. If you pee once, and very little comes out – then the next time, try delaying. If that causes anxiety, even though you both know that he does not need to pee, then that is OCD. It’s a compulsion – which is, by its nature, difficult to give up because it stops the anxiety. Two things will stop anxiety for a child with OCD – time spent NOT doing the compulsion – or doing the compulsion. Doing the compulsion is much easier, but unfortunately, it trains your brain to want more, usually in a shorter time. Not doing the compulsion will slowly stop the urge to do it – but they have to be able to take the anxiety that it causes. So there are tools to help this, and you need to have very good rewards to motivate them to take the anxiety. Rewards can be very varied – if you need ideas for this, let me know.

 

We actually found this one of the easiest symptoms to treat, as Meg was very frustrated by this feeling, and it was interrupting her life pretty extensively – and was therefore very motivated, even early on (she could work on this one even before we found PANDAS and gave her anti-biotics. However, it would come back the next time & we'd have to start again). I can email you my file for this if you’d like. Basically, it was a matter of agreeing with Meg on a plan that she was comfortable with, and taking baby steps. The trick is to deal with the anxiety that “not peeing” creates, for longer & longer times, until the urge goes away. So the ERP tool that we used was “delay” and the techniques were “time” and “coupons”. The first thing we did was to track the number of times she peed and when, for 2 days. Once we had this baseline, then our goal was simply to reduce this by 1. We agreed on the number, and then agreed on a reward. I gave her coupons for “peeing” that she needed to turn in before going to the bathroom. Having her turn in the coupon into a box was a delaying tactic, because usually she would just bolt to the bathroom. I praised her each time she used the coupon box. It also allowed her brain to think about how many times she had peed.

 

At the end of the first day she had beaten her goal by a lot (from 50 down to 45 – the goal was only 49). So then we set a goal for the next day of 44. We always tried to go for an improvement, but in very slow steps. We made a big deal out of the success at the end of the day, by telling dad & by picking a prize from the prize box. Once we got down to around 10, we agreed that a reasonable number of times to pee a day, that would not be OCD, was 5. So that was the ultimate goal. At that point, we saw much slower progress, but still steady – and then added new delaying tactics. So before peeing, she might be asked to set a timer for X (1-20 max) minutes, and then go. That way, she was pushing the anxiety further out. During this wait time, we would agree on something fun that we might do such as a short game that we only play during “bravery work” or reading or take a short walk outside – whatever that will help pass the time. But we don’t do this as a distraction, we acknowledge the anxiety/need, but then “do what we want to do anyway”.

 

Towards the end, we had a couple times at bedtime that were hard. She was afraid that she would pee in the bed. So we did a few nights where we put down a towel and wore old jammies, and agreed that we would just fix the bed if it happened and never tell anyone. This took her a few nights to build up her courage about. We would pee on purpose at 8:15, and then go to bed without peeing again. We had to slowly work this down from about 3-4 times towards the end of the program. In teaching this program, it was important to first “externalize” the OCD – make it something acting upon Meg, instead of something that she really wanted. This was tough for a 3 and 6 year old to get, but usually just tool 4-5 days of practice, and she would start to get it. We would ask all the time “is this something Meggie wants to do, or something the worryman (her name for OCD) wants you to do”. I would also say things like “it looks like OCD is really being mean to you right now, and I am very sorry about that. We can learn together to beat him up, when you are ready to try”. Sometimes, it can still take her a little time to know which is which, but in general, she is extremely good at knowing if she is giving in to a compulsion, or if she wanted to do something. She is very clear at age 8 now, about what a compulsion is, and why giving in to it will just cause the anxiety to come back the next time.

[dcmom]

momtotaylor- glad to hear all is still well with you! It is so strange that Taylor still has this issue- it has been a near constant (although 100 times better) for Julia also. Julia is also still resistant to panties unless extremely necessary. Ugh!

 

meg's mom- that was a great post, thank you. I am planning on starting Julia with an ERP psychologist in the near future. We all just need a little break first.

 

Just to add more to this urination issue: this was Julia's first, longest, and one of her biggest issues. She has taken the opposite approach as Meg- she goes to the bathroom as infrequently as possible to avoid the uncomfortable issue. I require her to go before school, or before we go to an activity- other than that she is on her own. I probably should set several times a day, and give her a prize for that. Since pex, this issue was pretty much gone, and her potty avoidance had eased. However, over Christmas break she started going multiple times each time she goes to the bathroom. She will leave the bathroom, and then in a frustrated huff run back "why does this have to happen to me?" and try to go more (which she doesn't). It has been at a really low level- although this morning she REALLY resisted going to the bathroom.

 

Time to start the prizes I guess.

 

Another topic: Does anyone else's child really refuse to let you (or themselves) brush their hair?

 

Suzan- I hope things continue to go well at your house

[thereishope]

My son did not like having his head touched or hair brushed. That's when I considered myself lucky that's he's a boy w/ a crew cut! His hair did get pretty bad, though, when I wasn't able to cut it for months.

[Megs_Mom]

momtotaylor- glad to hear all is still well with you! It is so strange that Taylor still has this issue- it has been a near constant (although 100 times better) for Julia also. Julia is also still resistant to panties unless extremely necessary. Ugh!

 

meg's mom- that was a great post, thank you. I am planning on starting Julia with an ERP psychologist in the near future. We all just need a little break first.

 

Just to add more to this urination issue: this was Julia's first, longest, and one of her biggest issues. She has taken the opposite approach as Meg- she goes to the bathroom as infrequently as possible to avoid the uncomfortable issue. I require her to go before school, or before we go to an activity- other than that she is on her own. I probably should set several times a day, and give her a prize for that. Since pex, this issue was pretty much gone, and her potty avoidance had eased. However, over Christmas break she started going multiple times each time she goes to the bathroom. She will leave the bathroom, and then in a frustrated huff run back "why does this have to happen to me?" and try to go more (which she doesn't). It has been at a really low level- although this morning she REALLY resisted going to the bathroom.

 

Time to start the prizes I guess.

 

Another topic: Does anyone else's child really refuse to let you (or themselves) brush their hair?

 

Suzan- I hope things continue to go well at your house

I would suggest reading "what to do when your brain get stuck" with her - a very fun workbook for kids. Then attack the part that bothers her - the going multiple times. Use the plan above - once you break down one part of it (the multiple time) it all gets easier. Start on a weekend so she is not worrying about school stuff (or friends!!!) and can be private about it with you.

 

We have the hair thing - ours is sensory & has never gone away. Not sure that it ever will. We did Occupational Therapy along the way & she brushes her own hair now. Somedays she looks a little interesting, but at least it is brushed. I can now touch it enough to put in a braid most days. We also still have some residual clothing issues, stuff feeling wrong, but she learned a little habituation exercise that gets her into what she wants to wear 99% of the time. Takes about 3 minutes to do it - and we only see this sensory issue 1-2 days a month, usually if my dh dries her clother on hot . Cheap Target stuff shrinks up easy. But I can't resist $4 for a shirt!

[faith]

Hi! I have not heard back yet from Dr. T but I have requested the increased dose of zith and/or clindimicin from him. I hope to hear by the weekend. He agrees that she needs higher doses and needs to stay on it so I don't think there will be any trouble once we get the new script. She is doing better though, I guess what I did increase is finally working. The wiping has not been an issue yesterday or today so it looks like it's not strep and was OCD. I have not looked at your link yet but I will later today. We go to see Dr. O on the 15th so I am anxious to update her on our trip to NY.

 

 

So you did go back to the 500 mgs. level? just wondering? and you feel she's better? interesting.

 

Faith

[Suzan]

So you did go back to the 500 mgs. level? just wondering? and you feel she's better? interesting.

 

Faith

 

It took about a week but she does seem much better. I'm still cautious. I increased her to 500mg/250mg alternating days (basically increased every other day). I think if I would have increased back to 500mg daily I would have seen a faster improvement but I'm scared of running out of abx before getting the new scripts.

 

Susan

[faith]

thanks, let us know if it stays better, (and of course if it goes bad again if you don't get the additional script in time). I really wonder 'why' the higher dose seems to do the trick. if you get any explanation from Dr., please pass it on.

 

Faith

[momtotaylor]

momtotaylor- glad to hear all is still well with you! It is so strange that Taylor still has this issue- it has been a near constant (although 100 times better) for Julia also. Julia is also still resistant to panties unless extremely necessary. Ugh!

 

meg's mom- that was a great post, thank you. I am planning on starting Julia with an ERP psychologist in the near future. We all just need a little break first.

 

Just to add more to this urination issue: this was Julia's first, longest, and one of her biggest issues. She has taken the opposite approach as Meg- she goes to the bathroom as infrequently as possible to avoid the uncomfortable issue. I require her to go before school, or before we go to an activity- other than that she is on her own. I probably should set several times a day, and give her a prize for that. Since pex, this issue was pretty much gone, and her potty avoidance had eased. However, over Christmas break she started going multiple times each time she goes to the bathroom. She will leave the bathroom, and then in a frustrated huff run back "why does this have to happen to me?" and try to go more (which she doesn't). It has been at a really low level- although this morning she REALLY resisted going to the bathroom.

 

Time to start the prizes I guess.

 

Another topic: Does anyone else's child really refuse to let you (or themselves) brush their hair?

 

Suzan- I hope things continue to go well at your house

 

dcmom....Julia and Taylor seem to be the same in that they resist going until necessary to avoid the "wetness" feeling. I also insist on going once before school, before any activity and then before she goes to bed. (On a weekend, she is on her own unless we go out somewhere. I do insist that she goes before we get in the car. So there are times that she will sleep all night and then not go to the bathroom until 2:00 PM.) I never thought of setting times throughout the day and giving her a prize! That is actually really a great idea! Thanks.

 

On the hairbrushing issue....she doesn't like it, but I would not say that it is a full blown refusal. She will whine and complain, but in the end we get it done without much issue. Brushing is as far as we can go though. I can count on one hand the number of times that we have worn a ponytail or anything else in her hair over the last year!