Need Help

[MountainMom]

We’ve been diagnosed PANS and treating since August (Lyme, Babesia, Bartonella). Immediately after starting antibiotics, saw marked improvement in symptoms despite DS (7) not being currently in a flare. However, in December he began to flare. We had a two week reprieve in February when he got the flu and has been flaring since. This flare has very different symptoms from previous flares. DS is often unable to eat because he says food tastes wrong, thinks it’s dirty, contaminated or poisoned. This seems to be getting worse. He Is very anxious and often scared of everyday objects. Our world is getting smaller and smaller. My questions are, what else can we do apart from watch his symptoms worsen?  His not eating is getting worse, is there a way to stop this? What can I do? What do we do if it keeps getting worse? We see three different doctors- all of whom are not helpful. Is that because there isn’t anything that can be done? Please help! Do all kids get better at some point? I feel like this will never end.

Thank you.

Edited April 28, 2018 by mountainmom

[yogatillmay]

Feel the pain. We are 6 weeks into our PANS debacle and its . There's are a couple of Facebook support groups for PANS parents that you might also want to check out.

[MomWithOCDSon]

Mountainmom -- is your kid still on an antibiotic regimen?  Do you use other methods (supplements, OTC meds, etc.) for helping combat the inflammation from the flare?

Yes, kids DO get better!  Mine did.  But, unfortunately, even though the symptoms and behaviors may crop up virtually overnight, the healing is rarely, if ever, that fast.  It is a matter of time as well as a matter of treatment.

If your son is not currently taking antibiotics, get him some.  If he's taking them but you see no support or improvement via them, talk to the doctor(s) about switching them up.  Unfortunately, the flu being a virus, the antibiotics are not going to be of much help there.  Did you try anti-virals?  In the end, I would go after every anti-inflammatory intervention available to you as the immune response to the flu has probably inspired a lot of fresh inflammation that's behind the flaring behaviors.  Maybe talk to the docs about a short course of steroids, though I seem to recall those are frequently not recommended when lyme and co-infections are behind the PANs.  Otherwise, ibuprofen, omegas, etc.

And if you haven't considered it before, perhaps consider some therapy for your son, too, to help him combat the worries and anxiety that can creep in during and even following flares.  Unfortunately, these OCD behaviors/obsessions can dig in and become more pervasive over time if they're acquiesced to and given room to grow.  Medical treatment should help him be more effective at using the therapeutic techniques and strategies, but he'll need them in his arsenal to begin with.

Don't give up!  Relief will come and you're very fortunate to have these doctors on your team as some folks have trouble finding even one doctor who'll help!

[LNN]

Is your son still being treated for Lyme & co? Are you working with an LLMD? My DD suffered from Pans-induced anorexia and it was terrifying. For long term healing, I'd say you need a combo of antibiotics, rotated periodically. For the near term, you need to treat this for what it is - life-threatening, regardless of trigger/cause. Google the "maudsley approach" to treating eating disorders. It may be OCD that's keeping your son from eating, but his body needs calories or you end up with a cascade of physical health problems and mental health problems.

For my DD, it took a combo of 2 antibiotics plus a month long steroid taper (starting at 60mg for a week, then 45 mg, then 30mg, then 15 mg per week). Within 36 hrs of starting this, she willing sat to eat for the first time in months.

[MountainMom]

Thanks for your replies. My son is currently on antibiotics. I think that we need to switch them- as they don't appear to be helping. MomwithOCDSon, would the flu still be active in his system? We did anti-virals right away when he the flu was active. Our Llmd still feels the Bartonella is active- based on his symptoms- though I don't really understand how they can tell. I'm going to talk to our Llmd about steroids. I have heard mixed things about steroids when Lyme is a factor....  We are on our third therapist and haven't found any to be helpful at all thus far.  I'm hoping our new one is better able to help as she works with a lot of PANS kids. It's just so frustrating. We are almost three months from when he had the flu and he is getting worse! He can't go to sleep. He's afraid of his blankets, his bed, his pillow, the floor. 

LNN, I will take a look at the Maudsley Approach- thank you.

So grateful for this board and all of you. 

[bobh]

Is there any obvious infection?  Do his tonsils look even a little suspicious, how are his sinuses?

Have you recently tried ibuprofen (for a limited time, per directions on the bottle) just to take the edge off a flare and maybe get some food into him (if it helps your child - some it doesn't)>

Another simple near-term thing you can do (if you can get liquid into him) is baking soda mixed with water.  Lyme folks have been using the equivalent in alka selzer for years and reporting some relief from symptoms, and finally now some research has shown how/why this could work for autoimmune diseases: https://www.sciencedaily.com/releases/2018/04/180425093745.htm

[MountainMom]

bobh- there isn't an obvious infection. He doesn't seem sick. I think his sinuses are fine (maybe it's the Bartonella?). We are using Aleve around the clock. It does take the edge off. Thank you for sharing the link to the research on baking soda. I will see if he will tolerate that. 

[LNN]

Mountainmom,

My son had Lyme/Pandas and a month-long steroid taper helped him immensely twice, and did nothing once, over the 5 years he battled his illness. Our LLMD isn't a huge fan of prednisone but does recognize it has it's place for Pandas kids.

Like your son, my daughter was in her darkest days yet had no definitive infections. She did have Marcons - you may want to ask about that. I may never know what exactly she was fighting, but I do know that a combo of bactrim and zith and prednisone saved her. Low dose naltrexone was also helpful. She has struggled immensely from mold issues - mold in her elementary school and now her Jr High. Prednisone isn't recommended for mold situations either, but desperate times called for desperate measures. She recently started Zoloft and although I've tried everything I could to avoid it, she does get relief and is glad she's on it. Inositol, Ashwagandha, Bacopa and looking into how your genetics affects methylation are also options for reducing anxiety.

Cognitive behavior therapy wasn't hugely helpful for my daughter, but now that she's a little older, she's having great success with EMDR. So something to keep in mind as your son gets older, if he continues to struggle with anxiety.

I know it feels like this will never end - and it is a grueling journey. But my son "grew up with" MomWithOCDSon's son - and he's now the healthy, obnoxious teenager I always hoped for, while her son is enjoying college. My daughter's journey has been harder and more complicated, but she too is making progress. So don't lose hope. Our kids do get better. But first they need to eat

[Newfie]

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.

[bigmighty]

What are you doing as far as anti-inflammatories go?  Is he taking ibuprofen or turmeric or prednisone?  The behaviors are based on the brain inflammation, so even though it doesn't solve the actual problem, reducing inflammation can help greatly with respect to controlling the symptoms

 

[Newfie]

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.

[bigmighty]

Our doc always said we would be okay to do 1.5x normal dose of ibuprofen 3x daily for a day or two, then reduce to normal dose 3x daily - like morning, right after school, and bedtime.    

[Newfie]

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 .

[bobh]

I wouldn't say "can't" - it's just that there may be an increased risk of bleeding, especially for the elderly or those that have kidney or liver disease.  It is not uncommon to have some interaction, and the decision to go ahead or not depends on the potential benefit. I have had some doctors say with a "moderate" interaction potential "I'm not worried, go ahead".

If it still worries you, the risk is quite reduced if the ibuprofen is very short term.  Make sure he doesn't have a current wound that is bleeding, and if he gets a cut or injury, take him off as soon as you know.  Even with just a few days, it could show up as a significant benefit.

The line from your doctors "but the treatment is the same, ssri and cbt" really angered me when I first heard it.  That is patently not the case, as was admitted when your doctor let you try zith for a month.  That is definitely not a treatment for ordinary OCD.

It is important to try several classes of abx - some get no result on one, and tremendous results with another.  It may also take longer than a month in some rare cases.

[MaryAngela]

Newfie—

My son was given a high dose of Augmentin over 2 years ago.  His OCD and tics were off the charts.  About 11 days in, he began to rapidly improve.  His OCD and tics were almost completely gone by the end of the 30 days.  Doctor didn’t refill right away, and he regressed, and we haven’t been able to recapture that success.  By the way, my son’s Cunningham Panel showed autoimmune encephalitis even after abx treatment and 1 IVIG.