StillHopeful

Hi - I want to explore a new avenue that I know nothing about. How do you test for yeast? What type of doctor should you go to? What are the symptoms? What are the treatments? Any and all info is helpful. Thanks in advance!

Can you take lemon balm with other meds? My son has been taking buspar for the past year. We are up to 40 mg and I spoke to his Dr today. He said I can go as high as 60 mg but my inclination is not to add psych meds if I don't have to. Just recently got him off celexa but his anxiety got so bad (more of a social anxiety) that I added 10 mg of celexa to take the edge off. Kathy N, can you share your dosage info and your childs weight? Thanks!

My DS12 is on homebound education that is paid for by the school district. He also refused to see the teachers for 2 months. It was very fustrating and upsetting. He would yell at them to leave and more. Finally got a special ed teacher who is very caling a patient and was a form psych. Can the school back track and keep her homeschooled? I wouldn't give up. Maybe half a day is too much and you can try again next month. Can her at home teacher work with her in the school for an hour a day to expose her to it? Then increase it up to 2 hrs ....

Wow! It makes a lot of sense. Will share with my son. He gets hyper when he has anxiety lately and doesn't know what to do with himself. I too am always telling him to calm down, breath deep. Guess I should tell him to jump around, exercise and keep moving. Thank your son for us.

Ashely -- I would make an appt with the best and most respected doctors that treats PANDAS. You may have to wait several months but that's OK. In the meantime, you can explore other avenues. Some people use supplements, homeopathy (there is someone in Australia that lots of PANDAS patients use and love). Here is the link. http://www.vcch.org/ I think your symptoms lean towards a PANDAS or PANS diagnosis. It is definitely worth checking out.

You are right. I am leary. Thanks for the advice.

Just curious -- I know I shouldn't give my son the methyl b12 on its own (due to negative reactions). Can you take the folate by itself or does it need the b12? Thanks.

Hi Ashley, Sorry about what you are going through. I am glad you found this forum. There are several members of this group who know or believe they have/had PANDAS as an adult so you are not alone. In my opinion you need to see a doctor, maybe a neurologist who specializes in PANDAS and treats with antibiotics. I would think that most of the patients would be children. If they give you a hard time about seeing you because you are an adult I would urge them to see you. Just curious if you can recall a time when your anxiety, tics, etc... improved during or right after being on antibiotics. If so, that would be a major clue. You should ask for tests such as step, mycoplasma, thyroid tests, epstein barr virus,... I am sure others will chime in with a list of more labs. I quickly googled PANDAS Australia and Dr. Russell Dale came up. I have no idea who he is or where his office is. It just may be someone for you to talk to and get information from. Here is the link: http://www.kidsresearch.org.au/research/chw-clinical-school/rdale.php If you go on facebook there is an International PANDAS page that you can join and there might be more people from Australia on there that can help you as well. Good luck to you.

Good points LLM! I am going to restart the Bs again over the weekend so I can observe him. Our son's school also has the same policy so I would have to bring the niacin into the nurse. Thanks!!

Thanks pr40...didn't think of sending him w the niacin. Good idea. BTW, no I didn't see any behavioral changes with the one dose.

Hi Pr40- I've only tried it one time with my DS. He was very hyper, it was extreme...felt out of control and was crying (he is 15) on the phone to me from school so I immediately stopped giving it. I don't want him feeling that bad again. I agree that it may have to do with their particular "cylce". I took double the amt at the same time he did (also w/o methylfolate) and got a headache. Did you give it w methylfolate? Did it only last 5 days or are you on your 5th day of giving it? Thanks.

Hi LLM -- The label says Metafolin/L-methylfolate so I think I am ok with that. Last time I tried to give DS methylcobalamin (b12) I only gave him 250 mcg of it with out anything else and he became hyper, couldn't control himself and panicky the next day in school. I brought him home and gave him 50 mg of niacin and he was much better w/in 30 mins (gave rescue remedy too). I don't want to screw this up again. I was told I should have given the methyl b15 w the folate. BTW, his homocysteine levels were fine (low side of normal), his folate was very high which believeve is due to his body not using it correctly. Not sure about b9. Is it called something else? His main issues are ocd, anxiety, tics, impulsivity, lethargy.. I was hoping the Bs could help with these issues. Thanks for your advice. It is always appreciated!!

Hi - My son has the gentic mutation for MTHFT c677t - homozygous. I am going to give him Methylcobalamin lozenges and folate. I need to start w/ very small amts. Does anyone know what the proportion should be? He is 125 lbs. The Methyl b12 is 500 mcg and the Folate is 400 mcg. I can cut the pills. Also, since I am a vegetarian (no pandas or anxiety or anything for me), I am going to try it out on myself first. I just figured I could use the extra Bs and I am alway so so tired w/ very little energy. Maybe it could help. Can't harm me right? Thanks.

Just curious about something. My son took part in a genetic study through Harvard Med. Ctr. last year. They are looking for the gene that indicates Tourette Syndrome so they can develop a blood test for diagnosis and better treatment. If they don't know what the gene is yet, how can 23andme say that you do/do not have TS? I am thinking of getting the 23andme test for my son. What exactly did it say re TS? Thank a lot.

This sounds a lot like my DS12. He doesn't have an eye roll though. He had other tics but they have improved. He also hates to read even though he is a wonderful reader and is smart. He would tell me that he was skipping lines and re-reading. He would also tell me the pages were blurry now and then. I was at a loss and it was effecting his grades. I took him to a behavioral opthamologist who said he had convergence disorder. But something about the doctor and the way he was keeping the price of his therapy made me feel uncomfortable. I then took him to his regular opthamologist who retested him and said that he did not have it. She said she could show him exercises to do if I wanted and they have someone in their office that works w/children that have this but she said he is not having a problem bringing his eyes together so it would not do anything. Around the same time I started to treat my son w/ antibiotics for PANDAS and the vision issues went away. What has not gone away is a true phobia of school and school work (he is on homebound education due to the school phobia) and I think that for my son this is what the real problem is. His hw assignment was to cut out an article. He did not have to read it or discuss it. He was going to do that w/the teacher. This is somethinbg he can easily do. He refused to do it. You would think I asked him to put his hand in a box of spiders (another phobia). I would suggest you get his eyes checked but also see if you think it is routed in anxiety. Another thing to ask the teacher about and for you to investigate is a processing problem. Is there a reading specialist in the school that could also help you look into this?

I have two boys that are diagnosed w/PANS/PANDAS. The one that was tested for the mutation is 15 years old and is 125 lbs. He is taking clexa (weaning off at 10 mg) and buspar. He is also on an elimination diet for 1 month which is making him tic more and he is having anxiety attacks/mania at night (don't know how to describe it) so I am afraid to add something new to the mix. I took him off multivitamins, omega and probiotics because they were new too and I didn't know what was making him worse. I kept the diet. This new DAN doctor sells the supplements and I spent $150 on the vitamins/supps at our 1st visit. Yesterday he told us about the MTHFR and said my son needs either to take a shot every other day or nasal spray each day. It would cost $100/month. He said that it would not work orally. He also didn't explain how this is effecting his behaviors which are (tourettes like, ocd, anxiety, tiredness, hyper, impulsive, attention issues). Another thing, his folate is high and his feratin is low. Thank you for sharing the link w/me. I am going to read it now. You certainly calmed me down. I am having a very bad day w/ both kids (plus PMS)

My son's lab showed that he is homozygous for MTHFR C677T. Can anyone help me w/ this? How serious is it? How does this relate to PANDAS/PANS - why do we test for this? Does it cause - tics, ocd, anxiety ...blah blah blah..... Can you treat orally or does it have to be injections? If orally, what should I get? I just am very overwhelmed at the moment and any easy to follow info would be helpful. Thank you so much!

Considering using homeopathy for my son's PANDAS. I have heard of a few success stories. Just wondering if anyone on this forum has tried it. What symptoms did it help with (or not)? How soon did you see results? Thanks.

I agree with JAG10 -- I think you should look into it too. A 504 can provide her with extra testing time, and it is obvious that she needs it if she has to check and recheck. If she has a diagnosis of OCD and other things (or even just the OCD) you should be able to get a 504 with a doctors note and observations from the teachers. I would work on it this year since things will get harder as she gets older and this way you will have the 504 in place. You can always make adjustments to it each year. Wondering if she can get extra time on assignments if needed too. The letters I have used are pretty general,-- My patient xyz name has diagnoseis of abc. She is being treated with 123. Her OCD rituals make it very difficult for her to finish her tests on time and focus on homework (or whatever ...). Please consider accommodations such as extra time for testing and homework assignments for her. Most doctors (neuro, psychs) have a standard letter.

Thank you John for sharing those lecures re vit D. Very interesting and it makes sense to me. I think everyone should watch them. She has a website too (drstashaGominack.com) In fact, I was low D and since I have been taking D3 my sleep has been so much better. My son's sleep cycle is so messed up. Now I have another reason to start the vit D3. I am just going to add it gradually. I am passing the info on to some of my friends that are complaining of other issues like headache and GI problems. Jag10 -- going to look intot he K2 for absorption as well. Thanks.

It can be very confusing and what works for one doesn't work for others. Right now we are using a dif vit supplement w D in it and new omega EPA and probiotics. I will conquer the vit D another day!

Are you just looking for MA state residents to take action? Is there an MA support group that you can contact? FYI I am in NY.

Hi -- My son recently went to a new doctor. He is an allergist and DAN doctor. He wants to do Serial End Point Testing on him for allergies and an elimination diet. Has anyone found that eliminating food or getting allergy shots help in their child's behavior? I mostly mean ADHD behaviors like hyperactivity, impulsivity or tics and OCD? Have you done Serial End Point Testing? My son has no known food allergies at this time and has had an allergic skin test to cats, trees, grass and dust mites. He doesn't really get stuffy or sneezy and I don't treat his allergies (since he does not complain). I don't want to put him through this if it is not worth it. Thank you very much!

That is interesting Think Gut! I was at my son's new DAN dr yesterday and he wants him to take D3, but when I said I thought my son reacts to it he dismissed it. M son is low so I think I will just watch him like Smarty did. At least we know we are not crazy! Smarty, I don'tknow what the PANDAS docs want for an optimum level of D but my son was low and Dr. T didn't seem to care too much. The DAN doc wants me to give him 2000 IU per day which I think is too high so I will add D slowly.

Thanks Tmom - I responded the other day to you but it didn't go through. There is a def disconnect between my son's capabilities and what he is doing now. Not sure if it is a cognitive thing, anxiety or what. It is due to PANDAS. He does terribly on the ELA English state exam but was in an honors english class last year. I will bring a file of his test scores w/ me and pull them out if needed. On the other hand he did very well on the math but I don't think he can do math now. We will see. I will aske for a letter from Dr T. We currently have a letter that says he has TS, Sensory Int Dysfunction, anxiety and ocd. So as far as a diagnosis goes, they all fall under OHI so I suppose we will discuss this at the meeting to see which would be more beneficial in the long run. Thanks again!