Suspect PANDAS, seeing OCD/Tics... all new for me

[KAS]

Hello. I am about 2 days into this research, as our 5 year-old daughter has recently had issues with licking her hands/fingers, and I am starting to log some OCD behaviors; such as, this morning, she stirred her cereal 10 times "for it to taste better," and told me how she counted her bites from one to ten, then back to one, and then there was only three left, so I counted them to three." Last night (and past few nights) she has had a hard time going to sleep, stating: "I have a not-so-good feeling" or "something isn't just right." I know I am preaching to the choir here, but it is so disheartening to see my precious angel suffering, and to know that there is very little I can do (or can I???).

 

Her finger/hand licking has been just over a week I believe, and they are beginning to get raw. Of course at first we told her, "Don't lick your hands...yuck!" Obviously this was not hte thing to do, as it exacerbated it and I came to realize she had no control over this.

 

Why I am considering PANDAS? She has had skin infections since the very beginning, usually under her left arm. I believe it to be "hot tub folliculitis" as she gets it after she takes a bath, or after we go to a pool sometimes. She has always needed antibiotics to help her heal from these skin infections, so she has had quite a few over the years (I need to gather my info together it seems!). Um, so last week the hubby treated her with a bath, and two days later she got the infection. She began her licking at that time. We put her on Keflex (Cephalexin) and it helped with the rash pretty quickly (now resolved). It is the suspension, so she is most likely getting the red dye as well. I have been reviewing some of your posts and have gotten all sorts of ideas (overwhelming!) to go on.

 

Yeah, so we are waiting for better health insurance to kick in on April 1, at which time we can go see our favorite pediatrician. I am hoping that he is able to direct us to the proper ???neurologist??? or ????infectious disease specialist???? or ???Immunologist???? based on these concerns and their proximity to the infection.

 

What specific blood tests could I be requesting???

 

Also, for those of you with PANDAS kids, how often is your kid symptomatic following an infection/illness?

 

Her Immunoglobulin G was low when I asked for her blood tests in December (asymptomatic, not fighting an infection then). I didn't have any ASO or whatever, checked.

 

I ordered some of the books recommended on this site and others, the one about the diet elimination, the home/school environment, and OCD child....maybe some more, I don't recall. I unplugged our "screens." I threw away the Easter candy. I also started logging the behaviors. ANd I've researched. That is it so far.

 

I am just physically and emotionally drained by all of this. I am a worrier and trying to just ask God for guidance and peace about it all. I prayed over my sleeping child last night after she finally fell asleep and plan to do so each night, for her well-being, and for her to have a sense of peace through this all. It is spring break for her preschool now, so I am hoping that she will transition back into preschool without separation anxieties (she has never ever had any separation anxiety before) and that her hand/finger licking isn't picked up by the little radars of other kids, and that her teachers are good about not drawing attention to this (I have already contacted them).

 

Please lend me any advice at this stage, as to what specialists to involve (in Denver), and if you have any advice about school or activities or how we can comfort her at night. I am just crushed at what this might mean for her in the future but so want to go about it the right way.

 

THank you all so much, and I do look forward to hearing your wise advice.

 

Blessings,

Sara

[ilovedogs]

Hugs to you! I don't have a child with OCD but he has tics that just started out of the blue a few months ago. I,too, spent last night in prayer as I really saw an increase in his tics yesterday. Just wanted to let you know that there are other moms out there who are trying to find answers and who pray for their children nightly!

You'll get plenty of answers here from others who are familiar with the PANDAS. Hang in there, it sounds like you're already making some positive changes. This is the first year that my ds didn't get Easter candy and you know what? He didn't even notice and didn't say boo about it! I was shocked. I guess he's adapting to this healthy eating program better than I thought!

[faith]

Hello Sara and welcome,

Did the ocd behaviors improve when on the Keflex or no? or did that just start recently? Does she display any tics? (blinking, sniffing hands, throat sounds)?

 

It doesn't sound as though her ocd is that bad, YOU know they are behaviors, but others will not notice that right now as such, especially her peers, so try not to worry too much about that. My son has quite a few tics and is in third grade, but I have seen that kids at young age do not focus on what each oher is doing so much. Just wanted to offer that.

 

Faith

[KAS]

Hello Sara and welcome,

Did the ocd behaviors improve when on the Keflex or no? or did that just start recently? Does she display any tics? (blinking, sniffing hands, throat sounds)?

 

It doesn't sound as though her ocd is that bad, YOU know they are behaviors, but others will not notice that right now as such, especially her peers, so try not to worry too much about that. My son has quite a few tics and is in third grade, but I have seen that kids at young age do not focus on what each oher is doing so much. Just wanted to offer that.

 

Faith

 

Thanks, Faith. I was considering the hand/finger licking a tic...is that correct? She doesn't do eye blinks, did some throat clearing yesterday when she said her throat was hurting, and I don't think there has been sniffing. Just the licking and the putting her fingers in her mouth quickly, then looking at me each time to see if I noticed.

 

I would say that no, the OCD has not improved with the Keflex...but probably gotten worse; what does this mean? I'm curious what happens once we stop the Keflex in a couple of days (10 day course). I'm also looking back and am certain that the night I gave her a peanut butter wrap for dinner, her finger licking and hyperactivity was terrible during story time before bed. Man.

 

Hyperactivity plagues us at present...

 

Thanks, Sara

[KAS]

Hugs to you! I don't have a child with OCD but he has tics that just started out of the blue a few months ago. I,too, spent last night in prayer as I really saw an increase in his tics yesterday. Just wanted to let you know that there are other moms out there who are trying to find answers and who pray for their children nightly!

You'll get plenty of answers here from others who are familiar with the PANDAS. Hang in there, it sounds like you're already making some positive changes. This is the first year that my ds didn't get Easter candy and you know what? He didn't even notice and didn't say boo about it! I was shocked. I guess he's adapting to this healthy eating program better than I thought!

 

THANK YOU. I'm sure it gets easier to process after the initial realization kicks in, but I am going through teary times. I am already prone to tear up as I am awaiting hip scope surgery on myself and have been in such pain for 15 months now. I'm guessing that my daughter has been worrying about this, too....poor gal! I'm excited to get onto a healthier eating program (though we aren't doing too bad now...). I can't wait to get that book.

 

Right now we are having issues with her wanting to be first, prettiest, best, when playing with her little sister (3 y.o.). Does anyone have advice on that, or sibling issues?

 

Bless you all!

Sara

[kim]

Sara,

 

Hi and welcome.

 

I'm not sure that this means anything, but look at the two articles on this page. One is the 3rd study down

 

edit (opps forgot the link) http://lib.bioinfo.pl/meid:10708/pmid

 

 

Ferritin levels and their association with regional brain volumes in Tourette's syndrome.

 

Daniel A Gorman, Hongtu Zhu, George M Anderson, Mark Davies, Bradley S Peterson

 

RESULTS: Ferritin and serum iron were significantly lower in the Tourette's syndrome subjects, although still within the normal range.

 

the other one is the 5th I think

 

Effect of iron restriction on outer membrane protein composition of Pseudomonas strains studied by conventional and microchip electrophoresis.

 

Ildikó Kustos, Márton Andrásfalvy, Tamás Kustos, Béla Kocsis, Ferenc Kilár

 

 

Is it possible that your daughter is low on iron/ferrin and that's why the Pseudomonas aeruginosa are picking on her? Find everything you can on these subject before you ask a Dr. about it. I think many have a tendency to "blow you off" if it wasn't their idea (not all...some are wonderful!). I may be totally off base here too. I just searched a couple of things quickly and this popped up. Looked reasonable to investigate a little further?

[KAS]

Sara,

 

Hi and welcome.

 

I'm not sure that this means anything, but look at the two articles on this page. One is the 3rd study down

 

 

Ferritin levels and their association with regional brain volumes in Tourette's syndrome.

 

Daniel A Gorman, Hongtu Zhu, George M Anderson, Mark Davies, Bradley S Peterson

 

RESULTS: Ferritin and serum iron were significantly lower in the Tourette's syndrome subjects, although still within the normal range.

 

the other one is the 5th I think

 

Effect of iron restriction on outer membrane protein composition of Pseudomonas strains studied by conventional and microchip electrophoresis.

 

Ildikó Kustos, Márton Andrásfalvy, Tamás Kustos, Béla Kocsis, Ferenc Kilár

 

 

Is it possible that your daughter is low on iron/ferrin and that's why the Pseudomonas aeruginosa are picking on her? Find everything you can on these subject before you ask a Dr. about it. I think many have a tendency to "blow you off" if it wasn't their idea (not all...some are wonderful!). I may be totally off base here too. I just searched a couple of things quickly and this popped up. Looked reasonable to investigate a little further?

 

Kim, thank you. She has had low iron as a baby. ??? Do you have some web links to these studies? I would very much appreciate it! You may be onto something here!

Sara

[kim]

Sara,

 

I had realized I forgot the link so I edited the last post. It's there now, sorry.

 

Sara, I don't have any experience here so I hope others will help out. I'm not sure that the reg. test that they typically do to check iron levels is adequate. You may need a more sensitive test. Just gather as much information as you can, so your Dr. see's the necessity of whatever testing you want. It's so helpful when they see things in writing. I'm finding more and more that WE have to EDUCATE them on this condition.

[KAS]

Sara,

 

I had realized I forgot the link so I edited the last post. It's there now, sorry.

 

Sara, I don't have any experience here so I hope others will help out. I'm not sure that the reg. test that they typically do to check iron levels is adequate. You may need a more sensitive test. Just gather as much information as you can, so your Dr. see's the necessity of whatever testing you want. It's so helpful when they see things in writing. I'm finding more and more that WE have to EDUCATE them on this condition.

 

Great, thanks so much! I appreciate the time it took to look this up for me. I've got my sister-in-law (PA) so hopefully she can find out more about this, and I'll of course do some researching as well. It seems there's always something to be researching. What did people do before the internet??? LIsten to their PCP and just suffer and wonder?

 

Sara

[ad_ccl]

you said she was clearing her throat when she said her throat was sore - have you had a strep test done?

[KAS]

you said she was clearing her throat when she said her throat was sore - have you had a strep test done?

 

She is saying it's better now. A week ago when we went in for the skin rash, I had him check her throat, and his visual scan of it was alright, as it is now, but I should have had a strep test done, huh? At this point, wouldn't it be gone due to the Cephalexin? Thanks,Sara

[evie]

Hi Sara,

 

Welcome to the board. You are in the right place to help you find some answers. Everyone here is just wonderful!

As a PANDAS mom myself, I can relate to what you are going through.

 

Just a note on the Keflex. Sometimes you need to try a few different antibiotics in order to find the one that works on improving the symptoms. Zithromax seems to work well on many kids (not on my son, though).

 

Good luck and if you have any questions - feel free to holler!

 

Evie

[ad_ccl]

my sons throat also looked fine -but the test was positive. A throat swab would not help you out now but you can still do the blood tests - ASO strep titers - and that will show if your daughter has recently had a strep infection. I would suggest you get that done.

[KAS]

Hi Sara,

 

Welcome to the board. You are in the right place to help you find some answers. Everyone here is just wonderful!

As a PANDAS mom myself, I can relate to what you are going through.

 

Just a note on the Keflex. Sometimes you need to try a few different antibiotics in order to find the one that works on improving the symptoms. Zithromax seems to work well on many kids (not on my son, though).

 

Good luck and if you have any questions - feel free to holler!

 

Evie

 

So the Keflex worked for the rash; if we get the ASO strep titers done and it shows she has strep, are you saying then, that some other antibiotic might help with these OCD/tic symptoms, even if she doesn't have the sore throat? Just still trying to piece this all together. THANKS! Sara

[evie]

That's pretty much it. Many of us have found that antibiotics help reduce the actual PANDAS symptoms. I find that just the actual exposure to strep for my son triggers a PANDAS reaction, even if he does not test positive to strep with a throat swab. In such instances, the only way we can get him back under control is to put him on a course of antibiotics - strictly to treat the symptoms. We usually find that the symptoms go away within the first 48-72 hours of treatment.

The hard part is finding the right antibiotic that works. We have cycled through so many different ones, Augmentin, Keflex, Cleocin, Zithromax - just to name a few.

The frustrating part is that even if one worked one time, it doesn't necessarily mean it will work a second time.

 

Good luck with everything. I hope that everything works out!

 

--Evie!