OCD, anxiety, please help needed!

[satu]

Hello,

 

I have written before only once , when I told how supplements helped to reduce my daughters tics and they really have helped. Edita (9 yrs) is still tic free since november.

 

But now we have a new problem which is so much more difficult than all the tics together she ever had.

 

Everything beginned four weeks ago, one sunday, when she was visiting her classmate, and saw a"scary movie 3". We would never allow her to see that film, but her friends parents did, and Edita didn't have courage to say no. When she came home, she was SO upset. She did't sleep without us, nor stayed at home alone without us.

 

I don't know how to call this, ocd, anxiety or phobias, I think she has everything in her little head and just can't understand what is happening. She is telling us, that she has different fears and thougths, which she can't understand and they are scarying her. And this is so scary for us too.

 

We saw our doctor last tuesday and she recommended GABA. We received it on thursday and had given 500 mg every morning and evening. She told that if we don't see any improvement in two weeks, we could try also 5HTP, inositol and SAMe.

 

5HTP and SAMe are very difficult to obtain here in Finland, but I think it would be possible to order somehow.

 

Have you beginned one amino acid at a time or given several together?

 

How soon have you seen improvement?

 

Edita is having fever for four days now and her OCD is VERY bad. Have you seen any connection between illness and worsening of OCD?

 

I would be very grateful of any advice!

 

 

Satu

[Chemar]

Satu

 

if your child has a fever AND the OCD is so high too I would strongly advise having a strep test PLUS a strep blood titre as this may well be PANDAS or PITANDS linked! It is well documented that sudden onset OCD like this can be related to PANDAS infection

 

as to the supplements.......

GABA is good for anxiety while 5HTP and Inositol are beneficial for OCD

If you cant get SAMe try for Methionine.

 

BUT honestly...FIRST check to be sure this isnt a PANDAS related OCD outbreak!

If so, then antibiotics are needed (check thru the threads here for related posts on this)

[satu]

Thank you so much, Chemar!

 

She DOES have strep!

 

I called the pediatrician center today and we had an appointment in the afternoon. There was a new doctor who had never heard about PANDAS and was not interested either . I wanted to give her some information, which I hade printed from the links I've found here, but she wasn't interested. She was quite sure that Edita has virus, but agreeded to make a strep test and it was positive. Now she is taking Kefalex for 7 days.

 

Now I have to read all the previous posts about strep and PANDAS to get more information, because I really don't know what to do next.

 

Thank you again .

 

Satu

[Chemar]

I am glad to hear at least you have an answer Satu! Amazing isnt it how mainstream docotrs are often so totally uneducated about important information, and how they are also so resistant to learn about it! They seem to think that just because they havent heard of something, that it therefore isnt valid!

 

anyway, at least the Keflex will beigin to do the work. However, if this is in fact PANDAS as opposed to just a strep throat infection, then you really do need to find a doctor who will do a strep titre blood test and, if that too is positive, prophylactic antibiotic treatment.

 

Hopefully you will be able to connect with a doctor who either understands about the significance of PANDAS and PITANDS or at least one who will investigate it further.

 

keep us posted!

all the best to you

[Giselle]

Satu, I'm so glad you were able to see the strep connection. My son always gets worse before he gets sick - sometimes up to two weeks before and usually for a week after! And I'm am terrified of strep - that took him out for months last year.

 

I just thought that I'd add my two cents about scary movies. I watched "The Ring" with my husband - I'd heard so much hype: that it was the best scary movie ever, etc. I don't usually like that kind of thing but as the visual effects were supposed to be good as well (my husband does visual effects for a living) we gave it a try. I could not sleep for days! I kept waking up and pulling myself as far away from the edge of the bed! And forget about having to go to the bathroom in the middle of the night. I was a mess - I would literally sprint back from the bathroom with chills of terror. I'm 42, in the business, and know it was just a movie but gosh I was toast for a good few weeks! Even now thinking of that little girl coming down the stairs all spider-like gives me the willies! Boy can movies really do it to us!!!! I hope she's feeling better about the movie. My son would have really wanted to watch the movie - he loves scary stuff - but like your daughter, is really effected by it so we never let him, although he still begs .

 

Other movies that scared the pants off me:

The Exorcist (that still effects me)

Copy Cat (Sigourney Weaver/Serial Killers)

Jaws (I was ocean crippled for many years because of it, I now scuba dive with abandon and even went on a shark dive!)

Trilogy of Terror (remember that little. . . what the heck was it?. . . with the knife?)

 

Oh and some of the Twilight Zones!

 

I'm freaking myself out just thinking about this!

 

Giselle

 

Anyone else?

[GErl]

as to the supplements.......

GABA is good for anxiety while 5HTP and Inositol are beneficial for OCD

If you cant get SAMe try for Methionine.

 

BUT honestly...FIRST check to be sure this isnt a PANDAS related OCD outbreak!

If so, then antibiotics are needed (check thru the threads here for related posts on this)

 

Can GABA, 5HTP and Inositol supplements be found in ordinary health-stores? I've been trying to find some info on the internet, but the info is somewhat scarce. Are there some specific supplements containing these substances or are they only found in medicine?

[Chemar]

Hi

they are individual supplements sold in Healthfood stores and also available on the internet

 

I order online from http://www.papanature.com as they have the best brands at lower prices and very reasonable shipping

[Claire]

Satu,

 

My son got horrible fears during strep, and they went away when the strep was treated. They say if you catch it early, it won't be permanent.

 

I have a *temporary* solution for night time fears. Melatonin. We used a 1/4 mg in a tiny bit of water just a few minutes before bed...just enough to take the edge off. It broke his fear cycle...since the night time fears lingered beyond the daytime ones, after a second round of strep throat.

 

Melatonin is a 'hormone' and a powerful antioxidant. Though it is over the counter, you might talk to your doctor to see if they have issues with it for 3-4 nights. We did it for 6 months while we lowered my son's mercury, since it had also affected his ability to sleep.

 

Good job to Chemar for calling out the strep connection right away, and what a good mom you are for being right on top of it!!

 

 

Claire

[satu]

Thank you Giselle and Claire!

 

Giselle, have you told about your sons strep last year somewhere here on Latitudes? I'd be very interested in reading, if you could send me a link. Was it more tics or OCD bothering him?

 

We are going to see a neuro for the first time on thursday. I'm hoping and praying, that she would be willing to listen about PANDAS and do a strep blood test and maybe some other blood tests, because I'm worried about Edita being so tired.

 

Edita is doing better, but still has fears and different OCD toughts, especially in the morning and in the evening.

 

We have added inositol 500 mg and tryptofan 220 mg to her supplements last week and now she is sleeping better (but not well.... I'm going to ask about melatonin on thursday, thank you Claire!). We also tried SAMe for a couple of days but stopped it yesterday, because, maybe it's a coincidence, but those days when I gave her SAMe (200mg) in the morning, she had very bad OCD thoughts also during the day.

 

I'll keep you posted when we get some testresults.

 

Satu

[satu]

We saw our neuro on thursday evening.

 

The positive thing was that she knew about PANDAS and suggested to have the ASO titers tested and orded also thyroid test and other basic bloodtests.

 

And the other positive thing was that there is cognitive-behavioral therapy available, but only in two- three months.

 

But although she was very friendly, she was a "normal" neuro and wanted to put Edita on risperdal for her OCD. I asked her opinion about more natural treatments but she was only smiling and told that there is no evidence that anything else would help .

 

We'll get the ASO results and other test results next thursday.

 

 

 

 

 

and when I was asking about the side effects of risperdal, she told that there may be very, very few small side effects.... nothing to be worried about...

[satu]

We received our test results last thursday. Her ASO titers are below 300, so it's not PANDAS.

 

On the other side I'm happy, because now she doesn't have to take antibiotics for a long time, but on the other side I feel so helpless, because I really don't know where to begin now.

 

She was feeling so much better in the beginning of last week, but saturday, sunday it was getting worse and yesterday it was a nightmare. She is afraid of EVERYTHING, any sound, any picture, makes her anxious. She has to tell me every single thought that comes to her mind, if she doesn't tell me, she feels that 'something bad will happen'. She doesn't have normal tics, but has many, many OCD related tics, which she just 'has to do'.

 

I don't know what to do .

 

She is on basic supplements (mag-cal, C, E-selenium, zinc, taurine, inositol, fish oil, probiotics) and we try to keep good diet.

 

She has had difficulties to fall asleep because of the fears, and we received melatonine on monday. I gave her 1 mg (doctor's advice) and she slept 12 hours. But yesterday she was so mixed up. I'm just thinking if it could be melatonine.

 

Chemar, does 'normal' (not PANDAS) OCD wax and wane like tics do? Are there different fears different times or is it always the same thoughts or fears?

 

I just want to find some way to help her. I know, that you all understand how painful it is, when you child is crying and telling you that 'mum, I want to get these thoughts out of my head'.

 

Thank you again for support I have received here .

[Chemar]

satu

 

I would highly recommend that you ask the doctor if it is ok to start her on 5HTP to boost her serotonin

 

It was the only supplement that calmed my son's raging OCD tics. He took 50mg 5HTP each night (makes you sleepy) and 500mg Inositol in the mornings

 

our doctor explained to us that the subtype of OCD that is prevalent amongst TS people is in some way linked to the tics so that an OCD behaviour can become a tic and vice versa. This also means that the waxing and waning occurs in the OCD too.

 

Do begin to be very diligent in watching for triggers for this satu. For my son, lack of sleep, stress and excitement are BIGGIES as are any artificial foods, as well as illness

 

Although your child may not have shown ASO titres high enough to be classified as PANDAS, yet the fact that she has had strep +ve recently may still be a significant factor

 

Also, try switching from fishoil to flaxseed oil for a week and see if that helps. My son, although not reactive to fish, is VERY reactive to fishoil supplements and simply cant take it.

Instead he has a combination of flaxseed,borage and evening primrose oil which gives an excellent balance of the omega 3 an 6

 

those are good points to maybe start with and see if it helps.

dont give up...........sometimes it just takes a while to find the right mix of supplements, or to find what is triggering things, whether food or environmental or pathogen etc

[satu]

Thank you, Chemar!

 

I asked our doctor about 5HTP a few weeks ago, and she said that it would be ok to try, but I didn't ask about the dosage. And the problem is that I can't find 50 mg anywhere. The only product available is Solgar's 100 mg with valerian 100 mg, magnesium and B6 10 mg. And it is a capsule.

 

I could order L-tryptophan 500 mg, would it be ok? Our doctor is on holiday for a month, so I can't ask her.

 

I have given her tryptophan 220 mg in the evening and she was actually getting better, but I think it may not be enough. It contains 220 mg L-tryptophan, 100 mg L-glutamine, 100 mg L-tyrosine, 100 mg magnesium and 10 mg B6.

 

We made a short holiday to Stockholm from friday to sunday and that was probably THE trigger. Too crowded, too much noise. She got so upset and was afraid of anything.

Another trigger may have been food... We haven't had any allergies tested yet, but have had milk free, wheat free diet for some weeks and in Stockholm we allowed her to eat pancaces, bread, ice cream. Although we don't know if she has allergies or not, this may be a possible trigger, too.

 

I ordered today an amino acid panel. They actually send it to US and we'll have results in three weeks. This test could be ordered without doctor's signature, but for IgG and yeast tests we have to wait for doctors signature.

[satu]

Just wanted to tell that Editas OCD is getting better every day .

 

We started her on 5 HTP (50mg), GABA (500 mg) and SAMe (400mg) on monday evening to boost her serotonin. We couldn't find 5HTP 50 mg, so we open 100 mg capsule, put half of the capsule to an empty one, and give the rest next evening.

 

We saw the difference on thursday. She wasn't repeating everything, like she was doing last week. She was able to concentrate more, and the best thing, she was smiling and laughing again! Now we see so much improvement every day.

 

She still has severe OCD, there are different toughts and fears coming to her mind all day, but she can handle them better.

Now I truly believe, that there IS hope that she'll get better.

 

Thank you, Chemar

[Chemar]

That is excellent news satu!

 

As the serotonin levels in her system begin to stabilise with the continued supplement use, so you will hopefully also continue to see steady improvement.

 

Dont forget to keep her away from those artificial foods...especially artificial colors, artificial sweeteners, MSG and high fructose corn syrup

those are, IMHO, the worst OCD triggers around!