Newfie

Hi Mary Angela, Thank you for your response.How is your son doing now?I was just wondering what dose of augmentin did he take that was effective and also was it augmentin xr or just the regular one.My sons psychiatrist gave me a 30 day prescription of azithromycin to try ,after 17 days I did see a decline in his tics,no change in ocd then he got a cold and tics returned .His pediatrician and psychiatrist refuse to give him anything else other than Prozac which he currently takes 40 mg.I am waiting for a referral to see an infection control specialist and a neurologist but I’m not hopeful they will do anything for him.My husband wants to take him to the states and see a specialist there but I want to hold off and see if we can get some sort of treatment closer to home and less expensive.

Hi Lulu4, I’m glad your daughter is doing so well.I was wondering if you could give me some advice.My son also has the restrictive eating ,he lost 15 lbs in 6 weeks ,has terrible ocd and tics.I live in Canada and finding treatment here is very difficult.My sons pediatrician and psychiatrist just want to treat him with Prozac and aren’t willing to do anything else for him.The Prozac does seem to be helping but hate the thought of him being on it and possibly long term.I don’t know if I should listen to them or make a trip to the states to see Dr.Latimer.How many ivig treatments did your daughter have? I can’t seem to find any information on whether a child can get better on their own or will not treating this cause permanent damage.That is what scares me the most .I can’t take him off the Prozac because he just regresses right back to not eating and he can’t go through that again.I don’t really know where to turn.Any advice would be appreciated.

I just looked it up yesterday and apparently you can’t give ibuprofen if you’re on Prozac .We see his pediatrician on Monday,June 25th so I’m going to ask her if she can start treating him with antibiotics or maybe try steroids.If not,we will have to head out of the province to get some help for him.Thanks so much .

I haven’t given him any anti inflammatories.Right now he’s just on Prozac but doesn’t seem to be helping and will probably need to be increased.Its been 18 months since he got sick and no one ever mentioned anything about pans/pandas to us until I discovered it online and he has pretty much all the symptoms.He also has a genetic predisposition to pans/pandas,I have hypothyroidism and my dad had rheumatic fever.I just feel like I don’t know where to turn for help.His Dr.s are treating him for a psychiatric illness and I know in my heart it’s not the right diagnosis.I took him off the Prozac last summer and was hoping that he would be fine.But as soon as the medication was out of his system he regressed right back into spitting out his food,rages,terrible ocd and tics.This tells me that he actually does have ocd and anxiety or he has pans and the brain inflammation is still there but the Prozac was helping the symptoms to some extent.The Dr.s don’t treat pandas here only the symptoms which I think is terrible.My child’s psychiatrist did try him on a month of azithromycin 400 mg but we didn’t see any difference,maybe a slight decrease in his tics but no change in ocd.Its very difficult living with my son since all this happened.He really believes his family,parents and sisters are poison.If anyone talks by his food he refuses to eat it,covers his face when we are close to him or when driving in the car.His sisters don’t understand this is an illness and they just get mad so with him so it’s a pretty toxic environment.I have to see the pediatrician on June 25 so I will see if she’ll try him on augmenting 875mg twice per day,he can’t swallow pills so cannot go with the XR version which would probably be more effective.I’m hoping we see some improvement because I think his Dr.s probably think I’m crazy.I have spent hundreds of hours researching pans/pandas ,watched every lecture I can find on you tube and searching this forum for information .I feel like I know more than his Dr.s do and I even had to tell them what blood work to order.I’m not sure if we should spend the $1200 and order the Cunningham panel,Im just scared that where it’s been so long ago since he got sick then perhaps the readings maybe low for pans/pandas and he won’t get the help he needs.Do you think I should try him on the ibuprofen and see if it makes a difference?I did read somewhere on this forum that you need to give a higher dose than the bottle says,my son is 90lbs and is 12.Once again thank you to everyone for responding to this forum.I have learned so much ,it’s nice to know there are others who know exactly what you’re going through and are there to offer advice and support.

Hi worried mama, I am also living in Canada and I am looking for someone to treat my son.I did contact a Dr. In Ontario but she had a waiting list of 1-11/2 years which is crazy and isn’t putting anyone else on the waiting list.There is also a Dr. Ayla Wilson in B.C that treats a lot of pans/pandas kids . Just wondering if you have found anyone to treat your child yet?It’s so hard to believe that so many Canadian families have to travel to the states to get treatment.

Hi everyone, First of all I’d like to thank all of you who take the time to write in and share your stories,offering advice and support.I have spent countless hours on this site and it’s been so helpful.I live in Canada and unfortunately it’s very difficult to find someone that will actually treat this terrifying and heartbreaking condition.On Dec.13,2016 my 11 year old son was perfectly healthy other than some tics that he’s had for several years which were mild and didn’t bother him too much.He started eating some fish and said he thought he swallowed a bone.He wasn’t choking,seemed fine and I just told him to drink something and thought he’d be fine.Well,within the next hour he had a major panic attack so we took him to the children’s hospital where they done an X-ray and no bone was seen.As the days went by he got worse,slowly stopped eating,had panic attacks,rages where he’d punch his head,beat up my house and cry so hard because he couldn’t eat and was starving.We made several visits to the hospital,saw an ENT specialist and nothing came of it.My child also had severe ocd where he thought all his family members have germs and he wouldn’t come near us.We finally took him once again to the hospital and they finally admitted him,he had lost 15 lbs in 6 weeks.Prior to this he’s never shown any signs of anxiety or ocd and normally loves to eat.They diagnosed him with ARFID,ocd and anxiety and put him on Prozac.Pans/pandas was never mentioned and I had never heard of it before.He spent 8 weeks on a children’s psychiatric unit and still wasn’t eating much when he was discharged on March31,2017.He did slowly start to eat again and is eating fine now but still has very bad ocd,can’t sit to the table with us,covers his face when we’re near him and has to use plastic utensils to eat.His tics are also very bad,he has tried clonidine but didn’t seem to help.Hes currently on Prozac 30 mg but may need to be increased because it doesn’t seem to be helping too much.I discovered pandas 6 months ago while I was doing some research on sudden onset,ocd and anorexia.I couldn’t believe that this was probably what caused all my child’s problems.However,when I asked his paediatrician and psychiatrist about pans/pandas ,they said it’s possible he may have it but the treatment is the same,ssri and cbt.Ive took so much information to these Dr.s about this condition and how it needs to be treated so they did some blood work but no signs of infection.The psychiatrist did give me a month of azithromycin to try but didn’t see much improvement.Im hoping to try augmenting soon and see if that will help.I emailed Dr.K and he said my sons symptoms fit perfectly with a diagnosis of pans/pandas.I’m scared of just leaving him without treatment because he may not get better and all his Dr.s want to do is keep increasing the psychiatric meds.I tried to get an appt. in Ontario with a paediatrician that will treat but there’s a 1 1/2-2 year wait.I really believe this is what my son has because there’s no other reasonable explanation of a healthy child suddenly developing ocd,anxiety and anorexia.I tried weaning him off Prozac last summer and the psychiatrist was fine with this but by the end of September,the ocd was back then he stopped eating again.So,he was put right back on the Prozac.He was doing well last fall on 20 mg,mild tics,ocd was fairly controlled so we decided to go to Florida on holiday.When we got there,I came down with a very sore throat and cough.My son didn’t get it but his symptoms went crazy,terrible behaviour,tics increased where he was spitting hundreds of times a day and barely ate anything on the cruise.I then had to go ahead and increase his Prozac to 30 mg.So,now it’s June,the 30 mg isn’t working so I guess it’s another increase to 40 mg,he’s 12 and weighs 90 lbs now.I’m hoping that the augmentin will improve his symptoms but if not try another antibiotic,omnicef or cefdinir.I’m so sorry for such a long post.I feel mentally exhausted from dealing with this,always researching for more information but don’t seem to be getting anywhere with it.I may order the Cunningham panel but I know he’s not in an active flair so I’m not sure if that will affect the results.We may end up taking him to the states to see a specialist.If anyone can offer any advice ,that would be great and much appreciated.