What is in your "bag of tricks" (regimens, etc) to help?

[pixiesmommy]

Just curious if we could put everything that everyone is doing in one thread. I see lots of various references in other threads, but it would be nice to have it all together.

 

So far we are:

 

Very scheduled and structured, with wall charts, calendars, lists, etc (helps transitions, helps w/OCD and ADD)

Feingold (apples and dyes are big aggression triggers for her)

CLO (just started a week ago, twice daily- heard it can help with tics)

Therapy w/psychologist who also has some background in Occupational Therapy (to help with everything, OT for SPD/SID)

Psychiatrist once/month for meds (reduced now to Abilify 3mg/day)

 

My daughter is almost 9 is diagnosed with Tourette's, OCD, SPD/SID, Bi-polar, and possibly ADD. She is also extremely gifted. She does not have a PANDAS diagnosis yet, but we hope to get one soon from Dr K. She was hosp for 10 days last summer for severe aggression toward parents and baby sister. We've suspected petit-mal seizures due to "zoning out" and limp body at times, but that has been ruled out w/48 hour EEG. She runs random fevers, sometimes with positive strep but no other symptoms (never shows on quick strep tests, only the 24 hour ones) and one ped thought she has Kawasaki but that was ruled out with an EKG. She's had workups for Leukemia, Lupus, seizures, Kawasaki, allergy tests via scratch and Meridian Stress Test (MSA), testing for giftedness/learning disabilities/Asperger's, etc. We have done urine porphyrine tests run, and her thyroid checked. So far nothing seems to significantly help, nor do we ever get any answers. The closest we have ever come to an answer was once we ran bloodwork when her fever was 104 for a week for "no reason" and neg strep test, and the ped ordered bloodwork and her SED rates were off the charts, but then they took them when she was NOT running fever and they were a high normal. The ped refused to believe it was anything other than a lab screw-up and would not order more bloodwork when she ran another high fever, saying there was no reason why her rates would change with fever. We have since changed pediatricians, obviously, because we disagree and feel it was not a lab error.

[thereishope]

1. Charts do not work for us. He actually alters them so what he wants to do. Can you imagine how that frustarted me?

 

2. Right after a + strep, I "go w/ the flow". The reasoning is gone and not really a point to try to alter behavior. Instinct tells me when it's time to intervene.

 

3. For OCD, he has residual OCD. This is not what to do during a PANDAS episode when you're experiencing meltdowns. You'd handle that differently. To give you an idea, we are 4 months since he last + strep test. Anyway, we are not doing meds. He went to psychologist who after 2 appts said the remaining OCD is different than regular OCD, thus reinforcing the remaining OCD is a result of PANDAS. She is holding off on CBT for now and I was told I knew what I was doing since I am seeing results fast. So, after only 2 appts and 2 parent visits, he is no longer seeing the psychologist. He may not even need CBT in the future.I started w/ all rituals I had to take part in. I give him a day or two warning that I will changing or eliminating it. If it's complicated w/ many layers, I wean him off it by changing it up. Otherwise, I simply don't do it w/ him or I don't allow him to do himself. I get some anxiety the first 2-3 times we eliminate it. The anxiety only lasts for about 5-10 minutes. You CANNOT give in at this point. Then, the extinction burst subsides and he's fine. Usually by day 3, the problem is gone w/ an occasional want by him to complete the now gone task. Every Monday I pick a new thing to tackle.Only one thing a week. It does sound a little complicated but it is working remarkably. Even the psychologist was amazed.

 

Let me add, during recovery shortly after a + strep, I had to a lot more weaning than straight elimination and go at a slowly pace. The first time, he had germ/dirt problems. He wouldn't touch his toys. I had to sit there and take one of his fingers at a time until he grasped a toy. But then he was fine and would sit and play.

 

4. The psychologist and myself agreed to meet (w/o my son unless needed) once a month to track progress. Because all docs are associated w/ the same hospital, she will send updates to the psychiatrist and neurologist. we are keeping a chart of his anxiety, level of OCD, how it affects enjoyment. She is leaving him as an open patient so if I should need her to see him we don't have to wait.She is also going to aid me in getting PANDAS and OCD cited in an IEP under OHI. She said I can email her whenever I want.

 

5. I've decided to go as HFCS free as possible, greatly reduce food dyes, and go as natural as organic as I can.

 

If I can think of anything else, I will add later.

[acdrobert]

Sorry for being so ignorant. but what is CLO ? We need all the help we can get for our tics !

[pixiesmommy]

Sorry for being so ignorant. but what is CLO ? We need all the help we can get for our tics !

 

Don't be silly- all the acronyms can be confusing!

 

CLO is Cod Liver Oil

 

http://www.ehow.com/how_2340544_take-suppl...s-syndrome.html

[EAMom]

Ohh! we do fish oil when we can. I like Carson's very finest fish oil. Not exactly the same cod liver oil...but a good source of DHA/omega 3's. Good for the brain in general...I can't say that it is doing all that much for the PANDAS itself.

[peglem]

We use CLO too. We ran out a couple of weeks ago and I noticed that Allie started having eye problems-very sensitive to light, squinting and rubbing her eyes a lot. When I added the CLO back in the eye problems went away the first day she was back on it.

[Guest asaxon]

Just curious if we could put everything that everyone is doing in one thread. I see lots of various references in other threads, but it would be nice to have it all together.

 

* * *

 

A long bath seems to help our child a lot.

[pixiesmommy]

Oh, that reminds me that epsom salt soaks are supposed to really help. You're supposed to start with a small fistful and work your way up to about 2 cups per tubful of water. I've read great things about it's detoxing and relaxing qualities for both chemical-sensitive kids and ADHD.

[thereishope]

Yesterday, I was on the OC Foundation website and saw they were doing a study to see how Omega 3's help w/ OCD symptoms. To be part of that study you could not be taking any supplements that helped w/ OCD. These are the supplements they listed...

 

inositol, omega 3 fatty acids, fish oil, 5-HTP, valerian root, B vitamins.

 

My son takes a gummie vitamin that contains inositol and DHA from fish oil so who knows if that's helping him overcome some of the remaining OCD.

[familyof4]

We just started seeing a psychiatrist to convince my pediatrician that it is PANDAS and not ADHD / Anxiety / OCD. (His ped refuses to give us any more antibiotics unless we have a + strep culture.) Luckily I found a psychiatrist that has PANDAS experience. My son is on a gluten free diet due to celiacs and has pancreatic insufficiency so he must take enzymes with everything he eats. The psychiatrist was worried about his absorbtion and had me triple his multivitamin and add a b50 complex to his regimen. He tested for iron and vitamin D which were both in range but on the low end. He said the B vitamins, folate, D and iron are very important for brain function. We also do the epsom salt baths. Motrin works great on him when he is having a bad day but I have been cautioned about using it very often as the rebound headaches from daily use can take months to get rid of. Right now they have cleared him of having "normal" ADHD, OCD, and Anxiety and we are just waiting for the next PANDAS flair up.

 

Heather

[pandas2boys]

Ohh! we do fish oil when we can. I like Carson's very finest fish oil. Not exactly the same cod liver oil...but a good source of DHA/omega 3's. Good for the brain in general...I can't say that it is doing all that much for the PANDAS itself.

 

We tried fish oil, and we noticed a drastic change in his tics for the worse. After a few more weeks on Zithromax, he kind of stabalized. Then he once ate salmon (high in omega 3's), and boom, he got worse again. Since then, no more fish for my son. Instead, we give him flaxseed oil, 500mg twice a day.

[pandas2boys]

Yesterday, I was on the OC Foundation website and saw they were doing a study to see how Omega 3's help w/ OCD symptoms. To be part of that study you could not be taking any supplements that helped w/ OCD. These are the supplements they listed...

 

inositol, omega 3 fatty acids, fish oil, 5-HTP, valerian root, B vitamins.

 

My son takes a gummie vitamin that contains inositol and DHA from fish oil so who knows if that's helping him overcome some of the remaining OCD.

 

Gummie vitamin.... Are you talking about the one from Shaklee? We tried that on my other pandas son, and his OCD got worse. At least thats what we think.

[thereishope]

I always feel funny saying what I give him cause it's nothing fancy. Just a plain old Disney vitamin...Walle to be exact

 

He will only take gummies.They are natural dyes too. It sounds like you're son might have a fish allergy, so it'd be best stay away from those too. The DHA in it derives from fish oil.

 

 

 

Yesterday, I was on the OC Foundation website and saw they were doing a study to see how Omega 3's help w/ OCD symptoms. To be part of that study you could not be taking any supplements that helped w/ OCD. These are the supplements they listed...

 

inositol, omega 3 fatty acids, fish oil, 5-HTP, valerian root, B vitamins.

 

My son takes a gummie vitamin that contains inositol and DHA from fish oil so who knows if that's helping him overcome some of the remaining OCD.

 

Gummie vitamin.... Are you talking about the one from Shaklee? We tried that on my other pandas son, and his OCD got worse. At least thats what we think.

[kim]

Interesting /informative article on CLO vit A & D ratios

 

http://www.etownchiropractic.com/newsarticle.asp?ID=10

[pixiesmommy]

From this blog: gfcfblog.blogspot.com/search/label/ISSUES%3A%20Strep

 

The extracts she gives are:

Olive Leaf

Oil of Oregano

 

and says she has read to AVOID probiotics and yogurt with a strep strain in it (S. Thermophilus).

 

I found that fascinating because DD used to be "addicted" to yogurt. She was eating so much yogurt at one point that it was scary and I stopped buying it. Everyone laughed and said I was crazy because yogurt is good for you. Maybe there was something instinctive going on...

 

 

---------------------

 

In another post I saw a method for washing hair and I wanted to add my own-

sometimes when we are going through a really bad sensory stage, I let DD climb on the kitchen counter and lie down with her neck on the rim of the sink (with rolled up towel) and another towel folded over her eyes (she holds it tightly in place) while I use the kitchen sprayer to wash her hair.

 

Sometimes singing while doing things helps, as does counting or counting backwards so that she can anticipate an end (such as for hair drying.) Also for hair drying, she likes to hold a towel around her neck so that her neck does not feel the hot air.

 

Another tip is to do typical things in a dimly lit room or in near dark since she is also extremely light sensitive.

 

In the car she uses noise-cancelling headphones (the kind you might use for lawn mowing) bought from Amazon. I have also read that earplugs (the wax kind for swimming) work fairly well and would be very portable. For auto-flushing toilets, put a post-it note on the sensor to keep it from flushing loudly and unexpectedly.

 

She also seems to do better with white noise at night since she is a light sleeper and we have both a fan and a white noise machine ($10 at walmart) that she uses.