I think my 5 year old has PANDAS! What do you think?

[bulldog24]

Thank you for letting me register on this forum. I really need some advice and guidance. This will likely be a long post so thanks in advance for reading it.

 

I have a 5 year old son. He has been very healthy overall in his life, but he has had strep throat at least 6 times. I think his most recent infection was 8 weeks ago.

 

Since december, My son has had issues with frequent urination. He had an issue with this about 6 months prior and it was determined to be anxiety due to being picked on in preschool. The bullies left the school and things got better. I became pregnant with my 3rd child late november of 2010. When I told my kids shortly thereafter they seemed upset about the prospects of having another sibling. My son started with the frequent urination. It varies from day to day but sometimes he pees, leaves the bathroom, turns around and needs to go again. we have ruled out UTI. I assumed that this was from anxiety from learning that I am pregant. I should add that I am disabled with chronic Lyme Dz and have been very sick while pregnant. I try to hide what I can.

 

about 2 weeks ago, My son was sick on a sunday. he had a decent fever and was sleepy and lethargic. I immediately thought strep because my daughter had it shortly before, I think she had just finished abx. I took him to the doctor (his pcp was not there) they did a U/a which was normal and he had a negative strep test. I was actually shocked. The next day he seemed fine. then all ###### has broken lose.

 

Later in the week, his teacher told me that he told her that he said a swear word. But the teachers never heard it. I assumed he just realized he had a concience all of a sudden. But he wont let it go. he feels the need to confess every bad thought to me. Things include thinking of swear words, wanting to make fun of some one etc.. I mean all day. He is also seeking reassurance constantly. He is always aking am I being good? Now he is talking a lot of about genitals. Like he will say after going to the bathroom, I looked at my wiener etc.... I have asked him a million times if someone is hitting or touching him. he says no.

 

Last night he was acting out quite a bit. Not following directions being rude and acting very hyper. it took him 4 hours to fall asleep with me being there. he couldnt sit still. We did talk a bit and he confessed to me that His brain keeps telling him to say bad words. he even told me that his brain told him to cut his finger with a toy saw. When he gets these intrusive thoughts and he starts confessing all this stuff he has started punching himself in the head. This is such abnormal behavior for him. he is a kind gentle boy. I am beyond concerned. I called his doctor this am, and he was off. His office left the doctor a message to call me first thing in the am to discuss and hopefully bring him in.

 

I am experienced with chronic Lyme and I know the controversey with that disease. ( by the way I really dont think my son has Lyme)

I know that doctors dont believe in it etc. I fear the same response with this situation. I am afraid they will want to put my son in a psych ward, that they will want him on psych meds, or even take him away from me.

 

I have no problem bringing up my concerns about PANDAS. I guess I just dont know what to expect from this pedi.

 

Does anyone have any advice? What is the minimum treatment or whatever to walk away with from this apointment tomorrow? I honestly dont expect much. From my basic and quick reading it sounds like the best treatment is IVIG. It seems very drastic to me and I highly doubt this pedi is going to jump on board with that. I just cant stand to see my son suffer with this. Its very disturbing to me.

 

any advice is appreciated thank you

 

bulldog24

[peglem]

This does sound like PANDAS to me. And maybe your child's physician is one of those who doesn't believe in or know how to treat PANDAS. So you may end up having to find a new doc or going to a professional with more experience. Anyway, here's a basic treatment/dx flowchart that is kind of an amalgamation of a bunch of PANDAS parents' experiences.

http://www.latitudes.org/forums/index.php?showtopic=6688

 

I'd think you'd want to leave the appointment w/ at least a months worth of full dose abx- preferably zithromax or augmentin.

 

You may also find it useful to peruse the "Helpful Threads" thread here:

http://www.latitudes.org/forums/index.php?showtopic=3928

Its pinned near the top of the forum.

[Malke]

That all sounds very familiar. Once I realized what was going on with dd5 I decided that my strategy with the pediatrician was to:

 

1. Make my case and make it a good one -- I wrote the doc a letter outlining the classic symptoms of PANDAS and referenced the sites where I got the information (http://www.webpediatrics.com/pandas.html and http://pandasnetwork.org/). We didn't have any clear 'strep events' but in my dd's case, she had about 75% of the symptoms mentioned. After the basic symptom description, I put in *red* how my daughter was exhibiting these symptoms.

 

2. I told our pediatrician (who had only 'heard' of PANDAS but knew nothing about it) that the only way we could really determine if it was PANDAS or not was to start a trial of abx immediately and if things improved, then we had our answer. If things did not improve, we also had our answer. I also said, you know I am not the kind of person who asks for antibiotics for every little sniffle, but in this case I think it's really important.

 

3. I asked for 200mg of Azithromycin per day for 10 days. (DD is 42 lbs) Our ped mentioned the normal kind of abx used for 'strep' and the normal length of of the RX but in this case it's not as simple as that and I told her that. We were lucky to find another PANDAS-aware ped an hour away soon after who gave us 3 months more on Zith. We are in a watch and wait state right now while looking for an immunlogist and/or a integrative MD to help us zero in on what exactly is happening.

 

4. I also started dd on Ibuprophen 1 1/2 tsp twice a day to help with inflammation. It was the only thing I could think of to do while waiting for the doc to get back to me.

 

My pediatrician agreed to start abx and, 28 days later (now), I have a daughter who is in much better shape than she was when we started the abx. So, we have the answer that it is PANDAS-like and we are going forward looking for more specific treatment. She's not 100%, maybe 80%? But so much improved that now I have room to breathe and really start trying to solve this thing.

 

I'm pretty sure IVIG should come later, if other things are not working. Sounds like you may have caught it pretty early, so you may just need to watch and wait on the abx. I've read on this forum that if it is lyme and not PANDAS, then you'll see some die-off the first four or five days on the abx and then things will improve. For us, DD improved within days of starting the abx.

 

I hope this helps. The folks on this forum have helped me a lot in the last month, so you're in the right place.

 

Malke

[EAMom]

Hi Bulldog24,

 

definitely check out the links Peglem posted.

 

I agree with everything that Malke said...except for us, we had to go through several antibiotics before we got a big improvement(with Azith. 250mg/day 43 pounds at the time). So, if a 1 mo. trial of antibiotic #1 doesn't help your son, don't discount PANDAS too quickly. Sometimes it is a matter of finding the right antibiotic (and using a high enough dose).

 

Also, I would encourage you to throat culture everyone in the family, even the daughter that recently had antibiotics for strep (maybe she didn't clear), to check for carriers. Also, re-culture your son. Ask for the 72 hour culture if the rapid is neg.

 

Where do you live? Maybe someone can rec. a doc.

 

btw, I think your son sounds like classic PANDAS.

Edited February 28, 2011 by EAMom

[Wilma Jenks]

The person we work said it is not definitive wether is it PANDAS or not based on the abx. working or not. The abx. did not help in our case, so I figured it was not PANDAS, but he said he is very confident it is PANDAS, even though the abx. did nothing but speed her up. Any commments are appreciated.

[bulldog24]

Thank you all. I was given a doctors info from a friend whose child has PANDAS. I will have to travel from ma to ct to see him. I do something simillar for my lyme disease so its no huge shock. i am just so sick and pregnant, it all feels impossible. I will update what happens with the pedi tomorrow.

[bulldog24]

Oh last thing real quick.... can animals like my dogs carry this strep around?

[momofgirls]

Ok so I know you said you didn't think your son had lyme but...you may want to have him tested. Many of us on this forum have uncovered lyme as an underlying chronic infection which triggered what you know as pandas or pitands. Especially given the fact that you have lyme and the area in which you live is highly endemic. Many children with lyme manifest with neuropsychiatric symptoms yet do not seem physically ill with classic lyme symptoms. You must be considering seeing dr bouboulis in CT? He is fine for testing and can help rule out lyme but it might be a good idea to make an appt with an llmd to have him checked out. Latitudes also has a lyme forum with parents dealing with lyme induced tics and OCD. Check that forum for more information. Keep in mind these children do flare with strep as any child with pitands...chronic or acute infection of any kind can trigger a response. A lot of us have learned, its not just about strep for some kids.

Edited March 1, 2011 by momofgirls

[EAMom]

Oh last thing real quick.... can animals like my dogs carry this strep around?

 

Here is an old thread on dogs:

http://www.latitudes.org/forums/index.php?showtopic=8172&pid=67099&start=&st=#entry67099

 

It is unlikely that a dog would carry around GABHS. But, some people have opted to put their dog on a course of antibiotics (just to be safe). Culturing a dog is more problematic (and costly).

[EAMom]

Ok so I know you said you didn't think your son had lyme but...you may want to have him tested. Many of us on this forum have uncovered lyme an underlying chronic infection which triggered what you know as pandas or pitands. Especially given the fact that you have lyme and the area you live being highly endemic. Many children with lyme manifest with neuropsychiatric symptoms yet do not seem physically ill with classic lyme symptoms. You must be considering seeing dr bouboulis in CT. He is fine for testing and can help rule out lyme but it might be a good idea to make an appt with an llmd to have him checked out. Latitudes also has a lyme forum with parents dealing with lyme induced tics and OCD. Keep in mind these children do flare with strep as any child with pitands...chronic or acute infection of any kind can trigger a response. A lot of us have learned, its not just about strep for some kids.

 

I was thinking the same thing. Some of the kids on this forum have PANDAS and Lyme.

[bulldog24]

Here is an update from the visit with the pediatrician today.

 

first he said not to worry about the urinations. Basically sometimes as boys grow, they feel a drop or two of urine left behind and feel the need to pee again. His u/a was fine again. I started to explain the other things. he listened and then asked me "this happened after a sore throat right"? So I thought that was good timing to bring up my concerns. I said that you are probablty going to think I am wacky, but I said I was worried about PANDAS. He didnt look shocked, confused or mad. He replied with that it was a a difficult diagnosis to make. My son was acting very hyper in the exam room. While explaining what things my son has said to me, my son started to tell him about how he was feeling. My son also repeatedly asked me the things I have mentioned. SO The doctor was able to see for himself. Long story short-

 

He did a rapid strep test which was negative. He said he was sending another one to the lab for a culture. He ordered a bunch of blood work. Cbc, chem, thryoid, sed rate, ASO titer, lead, and iron levels. I could be forgeting something... but he explained he expects the aso titer to be positive, but he said we could monitor them for changes according to how things go. He wants my son to see a neurologist and a psychologist that has a psychiatrist in the office as well.

 

So I guess it went ok. It could have gone a heck of a lot worse. At least he knew what I was talking about. I didnt mention lyme at this point becuase I didnt want to "push my Luck" and I know we werent using Igenex so that is pretty useless... No meds for now, but he said he will have most labs back by the end of the week. I am going to give him some ibuprophen and see how that goes. I suppose I could give him some benadryl at night if he continues problems there.

 

I guess I have one question- Do children with PANDAS have elevated SED rates?

 

Thanks for all the help-

Bulldog24

[peglem]

I guess I have one question- Do children with PANDAS have elevated SED rates?

Mine did not. Except for low IgG, IgA, IgE all labs were normal except for once we had out of range neutrophils- can't remember if it was low or high though. We've done a lot of labs- sometimes blood sugar levels are wacked. But, in the face of a multitude of +strep tests (really, numerous is too small to describe it) we only once had slightly elevated ASO- it was usually very, very low.

[EAMom]

Yeah...I believe our sed rate was normal too, as well as normal (or low) ASO/anti-dnase b (even in the face of positive cultures 2mo. after onset of beh. change).

[bulldog24]

Well I thought I would update this post.

 

My pedi ran labwork and everything was within normal limits. According to the pedi the ASO titer was low and he was surprised. All cultures were negative. things stayed the same for about a week. Then especially today all ###### has broken loose. He is now obsessing over "private parts". He says he can stop looking at everyones privates, including on tv and his toys. This is through clothing but still disturbing to say the least. He is now randomly licking objects and he says his feet. He is gagging himself with juice box straws on occasion. Every word out of his mouth was an obsession today. It got really bad this afternoon. I called the pedi and asked what the heck we can do. He said he sounded OCD (DUH) and that SSRI's would be likely needed in the near future I have a problem with this.

 

I asked if we could try some abx just to see if it would help because ssris are a serious step that I didnt really want to go in. The doctor said this wasnt strep because of the neg cultures and low ASO. So he wouldnt do abx. UGH!

 

My son has also had a couple of rages. completely out of control and angry. No reason. We see a really good psychologist on monday, but its not like he can RX anything. When talking with him on the phone, he was very aware of PANDAS and said it sounded suspicious. Maybe he can suggest something to the pedi or another doctor. My next step is to take him to th neurologist (because pedi said to) and ask my Lyme doctor to test him for Lyme via Igenex. It is likely he might know a good amount about PANDAS because he works with doc j in ct. The nest step after that is doc B in ct.

The problem is that it is extremely far away and I am disabled and pregnant. I dont know if I can make the drive.

 

I have a question...

Do SSRIS help at all with PANDAS OCD in a 5 year old? I was told SSRI's are not for kids under 12. I do think he needs something to manage this, but scared of ssris. Anyone else have a 5 yearold on ssris?

[nicklemama]

Baloney on the negative titers and not being PANDAS. My DS is living proof that you can have VERY low titers and still have PANDAS. Abx has helped tremendously. I'd be VERY careful w/ SSRI's. My DS was 6.5 when Celexa was prescribed (before we knew about the PANDAS) and he became suicidal.

 

See if your lyme doctor can help you. Give the neurologist a try. You never know. You might get help there. I don't have any good track record on getting neurologists(other than the PANDAS experts) to help. We've seen two of them locally and got no where.

 

We are actually waiting on lab results to see if my DS made any antibodies to his pneumococcal vaccines.

 

Move on from your pediatrician for help w/ PANDAS.