New here - 7 YR old develops OCD - 5 days after flu mist

[Aggie103c]

I'm so sorry your family is going through this ScaredMommy. I also live in CT. My 15 yo ds was diagnosed with PANDAS last December. He had an appointment with Leckman at Yale last June. The IVIG study is now closed if that is the study you were looking in to. I ended up cancelling the appointment even after completing 27 pages of paper work and sending it in. One of the nurses called to ask questions before the appointment. I told her I wasn't sure if this appointment was appropriate for my son because his worst symptoms were anxiety and depression and that he had PANDAS. She said "now now, don't put all of your eggs in the PANDAS basket". I had already wasted a lot of time with docs who didn't know anything about PANDAS and didn't want to take a chance. I told I was looking for a doc to administer IVIG and she said Leckman will evaluate and if he thought the patient had PANDAS he would refer to Dr. B in Darien. I don't want to confuse you, but I think the more information you have, the better you can make decisions. MY son ended up having IVIG with Dr. K in Chicago. He is not better yet, but I suspect he has Bartonella also. We are seeing a LLMD in Berlin, CT tomorrow. If you want his name IM me.

Best of luck to you,

Aggie

[airial95]

I see you've gotten lots of good responses here already. My son has not reacted to any vaccines in the past - except the flu vax, so you are not crazy, the connection is real.

 

As for the counting- my son also used to count, or require things to be in quantity by age. His onset was at 2 years old, but the counting came with a later infection at 3 years old, and lasted until he was 5. For him, it was especially critical with food - everything had to be in quantities of his age. We didn't eat peas for years - no way I was putting them in tiny piles of 3!

 

While you are trying to figure out your next steps, try to give your son ibuprofen, the standard dose for his age. This may help alleviate some of him symptoms. It has been very helpful for us. It reduces the inflammation in the brain that is the root cause of a lot of the symptoms. It may give you, and him some temporary relief while you are waiting to see a doctor.

 

As for CBT - it has been very helpful for both of my PANDAS kids. But I will caution, it was only helpful AFTER we had addressed the medical side of things. When they were at their worst, I don't think it would have done anything. Now that they are doing better, when they do get a new infection/flare, they are able to use the tools that they gained in CBT to help mitigate what they're experiencing, which makes it WAY less severe.

[rowingmom]

I am overwhelmed by your responses! You are all very lucky to have the support of this group as I am I. I will continue to research all you've provided me and present to our pediatrician in hopes she will help me navigate the system as it relates to obtaining appointments and possibly I can convince her to draw blood tests now.

 

Thank you!

 

If your pediatrician refuses to acknowledge PANDAS/PANS please seek the help of one of the specialists mentioned here. Don't waste time trying convince a doctor with a closed mind. Some of these doctors will acknowledge the possibility of PANDAS/PANS, but won't treat beyond the recommendations of the IDSA (Infectious Disease Society of America). Often our children require longer and more specialized treatment.

 

Many of the PANDAS specialists are just that; specializing in autoimmune reactions produced by strep infections.

 

If you get an inkling that your son is perhaps struggling with infections other than strep please consult with an ILADS (International Lyme and Associated Diseases Society) trained LLMD (Lyme Literate Medical Doctor). They have experience with many vector-borne diseases (lyme, bartonella, babesia, ehrlichia, mycoplasma, RMSF, anaplasma) and realize that these infections occurr more frequently than the IDSA will admit.

 

LLMDs will often diagnose clinically because the presence of any one of these bacteria, especially bartonella or lyme, can be very immune suppressive. Most testing for bacterial infections is dependant on antibody reaction and is therefore not a good indicator of presence/absence if the immune system is not functioning properly.

 

Our daughter's autoimmune reactions (please check my signature line) were the result of a bartonella infection. PANS is not always caused by streptococcal infection.

 

Welcome to the forum. You are in a good place.

Edited October 30, 2013 by rowingmom

[LNN]

I am in CT and can give you some suggestions on doctors. I sent you a PM - look in the upper right corner at the top of the forum. You'll see a little envelope icon. Click on it to read your messages.

[ScaredMommy]

Thanks everyone for your input and sharing your stories and advice. I have a lot to learn. I did also complete the 51+ pages for Dr. Leckman and I'm waiting to hear back. I would welcome a 2 hour eval with him vs. a 30 min appointment with a Psychiatrist that happens to be available to see my son this week. So I took what I could get for now. I'll keep following up with Dr. B's office to push for an appointment too. My son is functioning fine right now despite these new OCD symptoms. It has not (yet) affected his daily life even if he stops to count 15 different times during the day. It is mostly done when he is not interacting with us or others. We've adapted to his SPD. He DOES still have REALLY bad days, but there are REALLY great days too. I'm not certain at this point there is a connection but I did get very emotional last night reading your stories, seeing how much more your children are suffering or have suffered. In my heart I want to believe this new development is just a phase that will pass. You have all made me see that I am doing the right thing by researching and seeking answers. I still feel like that crazy Googler but thank you for supporting me and giving me advice.

[sf_mom]

One major medical occurrence i missed in my story above. At the age of 5 he had a swollen neck lymph node 3CM. He had no other symptoms. A few days earlier he had fallen at bouncy house and did hurt his neck. We were sent by our ped for an ultrasound which noted the size and many other small nodes enlarged as found them suspicious. We had an appointment the next day at a children’s cancer hospital. His SED rate was elevated, some blood work out of range but after a chest xray (normal) and multiple blood draws over a month, everything returned to normal. There was never a known cause.

 

 

You got a lot of great responses and advise. One thing that stands out in my mind is the swollen neck lymph. This particular symptom is an indication of Bartonella. Is there any possibility he was bit by a tick prior to this event? Definitely put Bartonella at the top of your testing list for when you see a PANS Dr.

Edited October 30, 2013 by SF Mom

[ScaredMommy]

Hi all,

To those I haven't replied to directly, thank you for taling the time to talk to me. I'm still soaking all this information in.

We just returned from the appointment with a Psychiatrist. Although she didn't really talk to my son, she did listen to his full history and took many notes along with taking my own written recap of his medical history. She didn't dismiss PANS or PANDAS but admits she doesn't see it in her practice. She did offer to contact my pediatrician to recommend blood work!! I do feel like we accomplished more than what I initially thought we would! So I am very happy to have the ball rolling. She said that OCD does NOT come on suddenly and she possibly didn't believe me when I told her it did. She feels like OCD isn't a terrible thing to have and most relates to superstitions one might have and it often leads to perfection and success. That is...given some CBT therapy to help guide the thought process in a young child. She said that this type of therapy is more successful in an adolescent though, but she doesn't feel it would hurt and might really help if it is true OCD not PANS. She said the majority of true OCD is genetic and can present in this form in a young child even if there is no family history - but there is anxiety and depression in the family. She mentioned medication as a future option for true OCD and wasn't at all pushing that for now. Our next appointment will be just my son and her and we'll go from there with further recommendations after that and test results.

[rowingmom]

Good luck with your next appointment. Please keep the possibility of an infection-based autoimmune/inflammatory brain reaction in mind. Please also remember that children with PANS/PANDAS can react negatively to normal doses of psych medications.

[ScaredMommy]

Should I ask for specific blood work or should I expect that all of this will be covered with titer and a lyme check? I’m not at all familiar with the terminology. My assumption is that neither this doctor nor my pediatrician will initially look that extensively considering their admission of lack of knowledge on the subject, but I could be wrong. This at least will open up further conversation with his dr. I do agree on the meds, and right now I wouldn't even consider it. Thank you.

[rowingmom]

A simple lyme test will not indicate the presence/absence of coinfections: bartonella, babesia, ehrlichia, mycoplasma etc. Bartonella is especially implicated in the development of psychiatric symptoms. The absence of lyme does not infer the absence of coinfections.

 

http://www.onehealthinitiative.com/publications/Breitschwerdt%20J%20Neuroparasitol%20Review%202012.pdf

 

http://www.schallermd.com/articles/bartonella-and-psychiatry.html

 

 

Edited October 31, 2013 by rowingmom

[JoyBop]

It sounds like you had a very productive meeting and that she will help where she can. However, I would be very put off by a psychiatrist saying that OCD isnt a bad thing to have and simplifying down to a single, mild manifestation. Perhaps she was trying to make you feel better, but many families and lives have been shattered by OCD, and there are many, many manifestations. If she is willing to call your doctor and recommend bloodwork, that is very very helpful.

 

Is your child on abx yet?

 

FWIW, we went to a psychiatrist when life became so unbearable that DS was suicidal. Although this psychiatrist had only seen one other case of PANDAS, she insisted we go for a strep test and BINGO!!! She does not know a lot about PANDAS herself but has guided and supported us through the system. She even gave DS CBT personally when we kept loosing our therapists for reasons that were out of our control. CBT IS very effective on young children. I have seen it make a difference even in my 4yo, who was 3 at the time she received it. I will admit its extremely hard to find a therapist adept at administering it to young children, but please dont believe that its only for adolescents.

 

In any case, I would use her as a stepping stone until you get to the PANDAS specialists and go from there.

 

We see a PANDAS psychiatrist that I have to travel 2 hours to see, and also see our local one who doesnt know PANDAS but supports us and follows PANDAS docs recommendations. DS is on a lot of meds to help with symptoms even though we know they are just a crutch and not a cure. We also see PANDAS Ent, infectious disease and immunology.

 

KEep up the great work!

[ScaredMommy]

I posted a few months back regarding my 7 year old and the sudden OCD that started within 5 days of receiving the flu mist. All symptoms of OCD lasted 6 weeks and are now just a memory. My son finally had his follow-up with a LLMD to get the results of his blood work. He is negative on the IGeneX IGM yet showing positive bands 18+, 41++ and IND on 31, 34, 83-93. IGG shows Positive results with bands 18++, 30+, 39+, 41+++, 58+ and IND on 31, 34 & 83-93. He also has a High Mycoplasma Pneumoniae IGG of 3.47 (IGM is normal 197). Streptozyme positive (negative) A titer 1:200 High. He has never had strep that we are aware.

 

The Dr. we saw was very thorough, yet we left his office even more confused. This could be PANS or it might not be. He recommended my son start detoxing with supplements after the holiday's as if it's PANS we might initially see a flare with symptoms returning and he warned they might be worse than they were in Oct. We have never used supplements in the place of antibiotics or for anything else. This feels a little like hocus pocus to us and likely our pediatrician would agree. I would have never have suspected my son had Lyme and was quite shocked to hear the results today. He doesn't have any symptoms of Lyme.

 

We are on a very long wait list to see Dr. B with hopes to get an appointment sometime this spring. Since my son's blood work indicates Lyme, the LLMD doesn't think at this point we need to push for the appointment with him. I'm not sure what to do since he isn't symptomatic now. I'm also afraid to start detoxing if there is a chance he will get worse than before.

 

Thanks in advance for any advice.

 

 

[rowingmom]

Did your Lyme Doctor test for coinfections?

[PowPow]

What tx did he get to end the 6 weeks of symptoms?

I have a different opinion of many (most) on this, but if it feels like hocus pocus (&he is doing well) , perhaps you should hold off. Maybe it is hocus pocus.

If he was on abx, maybe you can get into another PANS doc sooner and get him on daily abx.

Go with your instinct.

[ScaredMommy]

He was tested for many, many things. One thing he wrote down next to a WA1 IGG AB, IFA was Babesia Duncani and the result is <1:256. Not sure what that means and I can't recall what he said about that. I can't even tell what lab many of these test are from. The EHRLICHIA CHAFFEENIS & ANAPLASMA PHAGOCYTOPHILUM both SHOW <1:64 for IGG and IGM is <1:20 and the interpretation says "see note", yet I don't have a page with notes. The appointment was supposed to be 45 mins but he spent 2 hours with us. It was overwhelming and he talked a lot about things we know nothing about. He said we could try antibiotics but in his opinion, they could do more harm then good and if it was his daughter he would go the herbal route 1st. I keep circling back to what caused the OCD. Was it PANS and he said possibly that the existing Lyme in his body is at a level that he was able to fight and the flu mist sent him over the edge. With the flu out of his system, this explains why he is not symptomatic. He was never on antibiotics during this type or any treatment. He also said he doesn't have Lyme disease since it isn't showing active in his system. After taking the herbs he wants to further test the Lyme to see if a bug can be grown in the lab. We don't go back for 2 months.

 

Powpow, I would be interested in hearing your opinion on this.