satu

We received also E:s IgG results this week and if you don't mind, I use the same topic for some questions. E has no sensitivity to cow's milk, goat's milk, yoghurt or casein, but HAS a 1+ reaction to cottage cheese and lactalbumin. Do you have any idea, why there is no reaction to milk itself but there is a reaction to one ingredient of milk? The other reactions were 2+ to celery and lentils and low reactions to peanuts, coffee (never had..), honey, oysters (never had either), olives and sesam seeds (I have been cooking only with olive oil and sesam seed oil). What would you say, which foods are "relatives" to oysters and coffee? I mean, if she never had them, where could the reaction be from?

he seems to be babbling a lot - mouth has to be in constant motion - always making up rhymes, noises (but not tics, just lots of chatter and songs, constant). Hi Giselle! I just wanted to tell that Edita was just like Hoyt in July when her OCD was very bad. We started to boost her serotonin with 5htp, SAMe and inositol and now she is SO much better. (Unfortunately we can't have the neurotransmitted tested here in Finland, but we are also supplementing under doctor's guidance.) Satu

I'm happy, that Stas is doing so well and you have found a good doctor Be well, 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

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.

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 .

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...

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

I have finally found Solgar 5 htp here in Finland but they have only 100mg capsules. Do you have any ideas what is the best way to give only half capsule? Can I open it and add to a juice or try to get empty capsules somewhere and put the other half to an empty capsule? Our doctor who is helping with vitamins is not familiar with 5 htp and couldn't tell if 100 mg is too much. 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

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

Hi, My name is Satu, I live in Finland and I'm a mother of a 9-year-old daughter. She had her first tics at the age of 6, they were quite severe, but lasted only for a couple of months. Now this summer, after almost three years, she started to tic again and had both motor, vocal and complex tics. I found this place in august and have been reading and reading since then. I have been afraid of writing because of my english, but now I decided to write, because I'm so thankful for the information you have given. Without you we could have tried the medication, because here in Finland it is the only acceptable option. But after all reading we decided not to go to see neuro and started to look for an alternative doctor and try the natural way. At first we eliminated all artificial colours and flavors and changed to organic food. Then we started to add those supplements, what you have found beneficial, magnesium, calsium, B, C, probiotics, taurine and fish oil. In october we found a wonderful alternative doctor, who told us to continue with those supplements we had started and had the blood test done. We don't have the results yet. In the beginning of november she started to tic less and less and now for the last week she has been totally tic free. Your posts are an answer to our prayers. Thank you Satu