StillHopeful

KO's Mom - Do you think it is OK to take Pepsid at night with other meds? Thanks!

I was also considering using NAC. I was told that it was for OCD and was especially good for tricholtillomania. There was a study done specifically for that - over 56% of subjects improved. The article I read said to take it w/ vit c & multi vitamin.

Hi Char - If I were you I would call his office and see if you could get something scheduled asap. Good luck!

Weird -- I thought I responded to this post already! I must be losing it! Thank you both for your responses.

Something that we have tried and have been successful with during an anxiety "episode" is Bach's Rescue Remedy. It homeopathic with no side effects. We use the drops and you can drop it directly on the tongue or in water. It works for my older son (DS14). They make a "candy" too but we didn't get the same results. Just FYI, this son has not benn diag w/PANS/PANDAS. He has not been tested but I suspect his has it. I have found that Celexa and Zoloft make that same son very irritable, very hyper/impulsive and a bit "foggy". We did not recognize these symptoms as being from the medication until I read something on this forum. Thought it was the ADHD and that he wasn't getting better and/or the med was not working. We did go up slowly in dosage, I just did not know what to look for. When I brought his behavior issues to the doctor's attention he dismissed it. We are now lowering the dosage on the SSRIs for both my boys and I see a clear imprv on my DS14. Not saying not to try it. Just look for the behavior issues. I also read that they can get very warm and it is hard for them to cool down (my DS12 had this problem). He is always hot but he was more uncomfortable than usual.

My son does not have the same symptoms as yours but I wanted to wish you good luck. I am sure there are others on this board and can relate and will help you.

Hi - We just got our labs back and it showed a positive result for Mycoplasma LgG Interp and Mycoplasma IgG Ab EIA >3.19. Can anyone shed some light on this? The doc said he was pos for mycroplasma and is starting him on an antibiotic. What I should have asked but didn't was, what does this exactly mean? Is this an active infection or just the antibodies from a prev infection? I don't recall my son having any severe coughing or breathing issues or severe illness. He gets strep (Anti-DNAaseB was 146 ASO 146), "normal" sore throats, lots of ear pain/discomfort sometimes infections and what I thought were normal colds 2-3 x/s per year. Obviously I missed something. Is there a test I need to ask for everytime he has ear pain or a cold? Is there a way to prevent this? Much thanks to anyone who can help interp and educate me on Mycoplasma.

Thanks Lilly sounds like you are doing the right thing for your daugher. It is not easy. JuliagFaith -- I looked at K-12. They don't have a public school program here so we would have to do the private school. Because he is not cooperating (or can't) I am going to hold of until we find out what Dr. T says and switch up the medication. Maybe that will help. Thanks.

Hi - I was told by a dr. who specializes in TS that Omega 3 fish oils should have a high EPA amt and a low DHA amt. Two good sources are Nordic Naturals EPA formulation and Omega Brite. Omega Brite can only be found on-line. EPA stabilizeses the nervous system but DHA is activating and can cause irritability and excitability. You should take 4-6 capsules a day. I have to be honest that my son does not take this because he won't take fish oil. I wish he would.

Sending prayers as well. Dr. T told us to give 2-3 pills 3 times a day. I would consult with your doctor though when you speak to him/her. My DS12 is about 100 lbs.

I agree with all of the above... I would just add that it gets very crowded in NYC this time of year (esp Rock Center) so you may want to consider that if your children have any issues with crowds. Maybe visit the tree in "off" hours. Bring snacks in case you have to wait for a table to eat, etc... Not trying to dissuade you. NYC is a wonderful city and very festive in Dec. Just don't want you to make the same mistakes I have made in the past. Check Tripadvisor.com for hotels in/out of NYC and restaurants.

MomwithOCD your story made me feel a lot better. One of the concerns I have is that he is falling out of the habit of doing school work. So I think I am going to start introducing a few mins a day and work our way up. I will also keep an eye on the Abilify. It certainly isn't doing anything to help. I suppose that when we get the blood work back Dr. T will give us a plan. Rowingmom - I did take him for an eye exam in Oct and the doctor said he had convergence disorder but I am a bit skeptical plus he only did a partial exam and said we had to go back. He also wouldn't tell me how much the therapy would be until we had the second appt. That sort of turned me off. I think is vision issue may be a symptom of PANS/PANDAS. I am wondering if it will improve when he is on the right medication. If not, I will address it. He had been tested for conv disorder before with a "traditional ophthalmologist and she said his near sighted vision is normal (he wears glasses occasionally for distance) with no other issues. So confusing. Missmom - I will keep an eye out for another flare. I am hoping it was just the stress of yesterday and the ativan I had to give him. Drugging your child for an English lesson certainly seems ridiculous.

Hi -- Just to be a bit more clear, Dr. T prescribed the Z-pak as a temporary measure since I told him it would be a while for me to get the blood draw done (needle phobia). He thought that it may help bring down some of his symptoms along with the advil. We are waiting for confirmation of the diagnosis. The psychiatrist prescribed the abilify (which initially worked for several months and then he flared and we increased it) and zoloft. He was taking a higher does of the zoloft and I recently tapered it down because it wasn't effective and I thought maybe it was making him worse (as discussed on this forum). Abilify is 3 mg. I know I should relax a bit more about school but I am concerned. He was in two honors classes and taking Italian and he may have to give those up. I feel so bad for him. All he wants to do is play on his computer. He says it is the only thing that makes him feel good. Then, I feel guilty for letting him play on his computer all day and not do any school work but he really can't do much. JuliaFaith, what are the on-line classes that your son takes? We had a note from our doctor regarding my son's diagnosis. Officially is TS co-mormid with OCD, sensory dysfunction and anxiety. The SD offered us 2 hrs of each class per week which he hasn't been able to take. So far he is owed about 30 hours. BTW -- A new symptom occured just hours ago -- separation anxiety. I was going to a TS association meeting with my husband tonight and my DS would not let me leave. Haven't seen that symptom in about 3 year. Great.

Hi - Just a quick background -- DS12 (7th grade)has probable PANDAS for 4-5 years. We only recognized them as PANDAS in the past year and just recently saw Dr. T (after going to a bunch of other doctors that couldn't/wouldn't help - you all know the drill). Current symptoms, motor/verbal tics, contamination ocd, anxiety, learning issues, lots of sensory issues, etc... Don't have bloodwork results yet. DS takes SSRI, Z-Pak, Advil, Abilify. He has a 504. This year he is on homebound instruction due to anxiety, tics and sensory symptoms. Probably has some sort of perfectionism thing happening too. DS has not been in school since the first week of Sept. He can't read or write properly. He can not concentrate properly. Finally, after many weeks of trying and after giving him a small dose of adivan I was able to get him to work with the teacher who came for his homebound lesson. The teacher had already been to the house 2 times only to be sent away since DS would not participate. DS was obviously distressed during the lesson and refused to read. He tried a little and you could see he was rubbing his eyes and said it was blurry. He asked to do grammer and the teacher obliged. The teacher happens to be very nice and understanding. Most of the lesson was circling and underlining the right answer. DS was not as sharp as usual but he did it. When it came to writing sentences he started to cry and said "That is it, I cannot do this!" and ran upstairs. This is only after 20 mins. He then yelled down a few swear words and told the teacher to leave. (Oh joy!) The teacher gave him some hw to do. It is reading a short story and typing a short synopsis. Also, he needs to finish the sheet they were working on. I do not see this happening at all. How can you teach a person who can not read, or understand what is being read to him? He also refuses to allow me to read to him. OCD? He is getting so behind in school I do not know what to do. Do any of your children have the similar symptoms? What did you do? Also, for anyone that is homeschooling (not homebound)- how do you set up a curriculum so that it works for your child but also allows them to take the right classes so they can transition back into high school? Don't realy want to do homeschooling but I may not have a choice if this continues and it still won't address any of the issues I mentioned. Thanks you very much!

Hi Deedee - I don't have an answer for you but I can relate. My DS12 is has the same issue when it comes to tactile input and pain. It has driven me crazy... constantly (this weekend in fact) buying and returning clothes, fighting over wearing a jacket, major tears over a tiny scratch..... We tried OT but the biggest change is when I started to accept him and just let him be. I realized that he was not going to be a fashion star and that he won't freeze in January with shorts on. I put this under the category of "Don't sweat the small stuff". Have you taken your daughter to OT? They can teach you The Wilbarger Protocol (brushing). Also read the Out of Sync Child if you haven't already. The brushing didn't do much for us but I thought the book was helpful. Good luck!

Derail all you want Smarty - the more anyone asks, the more we all learn! I am probably going to try the NAC but I want to taper down on the SSRI first which I think is making him worse. It certainly isn't helping with anxiety or OCD. We also, tried inositol last year (same Dr. recommended it) but I found it made no difference. Thanks Mom!

Hi - I was just wondering if anyone is using N-Acetyl Cysteine (NAC) for their children's OCD symptoms? A psychologist recommended it for my DS12 but I forgot the dosage. If you are using it please let me know if you saw any improvement and how much you are giving your child. Also, how large are the pills (ex M & M size...)? No sense in me buying it if he can't/won't take it. Thank you!

Thanks for the info. What you are saying makes a lot of sense to me from what I have seen with my own DS. He is probably having some of the side effects that you mention. He always has had issues with being too hot and not able to cool off. Did not know that was a side effect. It has been worse (even in the fall weather) but I did not put it together. Also Dr. T asked us if we were having any side effects from the SSRI and I wasn't really sure (he did not prescribe it). I don't think it is doing anything to help with DS anxiety or tics. Maybe very mildly with the OCD. In fact, his symptoms have gotten worse. When you say PANDAS kids get "activated" what does that mean? Hpeny -- Just wondering how much vitD3 you use? Thank you very much for your help.

Hi MomwithOCDson - What would you consider a low dose of Zoloft for a PANDAS patient? Thanks.

Great! Keep us posted!

Thank you for your support and for sharing your stories. I wish I could just throw my DS in the car and say, "Too bad, you are going!", which is what I used to do when he wouldn't go to an appointment, etc... Now that he is 12 and almost as big as me, it doesn't work. I also tried my own ERP over the summer and we thought we were getting somewhere. WRONG! I tried to get the school involved. So, here we are. We are going to make a plan for "reentry" to school when he is ready. I don't know... seems like we are far, far away from that. I will look into getting someone to come to our house (so far no luck). He has been on antibiotics in the past which worked to a certain extent. I was thinking of calling Dr. T. 1tiredmam -- The doctor is also a child advocate and he sent a letter to the school informing them of the situation and says we are legally covered/protected but I will confirm. I agree w you -- The key is to treat the PANDAS, then you are free to tackle the remaining issues because the child is then "available" to learn Thanks again... I am so glad I found this forum.

Is there such thing as a school work phobia or something like that??

Very interesting. I am taking my DS on Sunday to a developmental optometrist. Just to confirm I check his name on the search engine you posted LLM. Do you recall any specific test you asked for? My DS says he sometimes reads the wrong line or puts a letter in the word that isn't there. He also reads very fast and appears to be "careless" when he reads. He hates reading although is actually good at despite the reading issues. He gets very anxious when he has reading hw and if there are multiple pages/paragraphs I usually have to read to him to get it done. (what a joy) I always thought he had an issue so I thought this was a good way to rule something in or out. It also occurred to me it could be an OCD or anxiety that is causing him reading issues. Thanks for sharing.

Everyone has such great ideas. Thank you for sharing them. I am going to try to print this out so I can refer to them. Unfortuatley my DS has not been able to attend school and we are requesting home-bound instruction. Scary step for me but necessary for him. I haven't met with his school yet. I hope we don't have a huge fight about it. At this point he is not being educated so they are going to have to do something. LLM- Interesting info about the pyroluria. I looked it up on google. I have a lot of the symptoms (although no eating disorder or lack of taste). Wouldn't low zinc show up in a blood test? BTW I love your blog! I feel very similar.

WOW! Thank you for your words of wisdom and all the practical advice MomwithOCDson and LLM. I feel so much better now. I was putting way too much pressure on my DS and expecting him to handle his work "as usual" when he obviously can't. I actually feel motivated to work with him instead of feeling the normal dread! My son is also bright and very good at math. It was his favorite subject. I am going to try some of those websites that LLM recommended and see if my school dist uses any of them. It is funny that both of you mentioned a yoga ball. I guess I'll be adding that to my shopping list. Smaryjones -- interestingly enough, I was just looking at all my old supplements this am that I used during my DS last major flare up (Feb/Mar). (I think we are just towards the end of it now but it's exacerbated by school so it feels worse). Did your son like the taste of the Zicam? Did it upset his stomach? My DS is starting to get a cold (great) so maybe it will help with that.