dcmom

Just a thought- what are/ were her pandas symptoms? Could the sleeping be due to depression, or a cover for ocd/ wanting to avoid events (school, camp, etc)? May not be the issue- Just thought I might mention.

Dr Bouboulis, Darien, CT sees MANY parents from this forum. Takes insurance, treats aggressively.

Patty- I have two girls that have had this issue (eating). It is really scary and awful. The pandas board is loaded with kids that have had eating issues. Have you explored the possibility of pandas. What has helped my kids has been: antibiotics (30 days plus of zithromax), oral steroids, plasmapheresis, ERP therapy and IV solumedrol (steroids). Both no longer (fingers crossed) have the eating issue. If you suspect pandas, I would highly recommend a pandas doc. In the meantime- try advil- see if it takes the edge off. Also- smoothies (add protein powder), meals of small bite food, eat in front of tv, keep small bite healthy snacks out and available all day. Good luck...

While I DO think some kids with pandas, can be misdiagnosed, particularly if stricken young- I do feel they are distinct disorders. I do not know much about autism, however I think that some of the "hallmarks" of autism are difficulty with expression (verbal, emotional, etc), and self stimming behavior. I do know leaky gut is many times involved, along with other physical issues. The "hallmarks" of PANDAS are OCD and/or tics. We all know there are other things that come with too. My kids have had very classic pandas. It hasn't affected their expressionism, their attention level, their ability to get along with others. With treatment, they are able to live a somewhat normal life- just struggling with ocd that hits like a mack truck, then disappears. They have been otherwise very healthy, hitting their developmental milestones on time. Does untreated pandas look like autism in a 2 year old- I am sure. I do think there is a possibility of autism being a catch all for several disorders and/or misdiagnosed illness, or difficult cases.

Kaviar- There is a great pandas- treating neurologist in Bethesda, MD- just outside of DC. That shouldn't be too far. We used to live in DC, but now live in NJ and make the 4 hour drive to MD regularly with 2 pandas kids. It is NOT easy- but believe me- you may end up wasting lots of time and money with local docs. There may be a time when you need more than abx, and it is best to have a doc on board willing to go the distance with your child. Just my opinion FWIW. Best to you....

Many families have found it imperative to have a doc experienced in treating pandas. Meaning possible traveling a far distance, paying out of pocket, etc, etc.

Cab- I agree with LLM. The book "What to do when your brain gets stuck" was very valuable to us. But, to the bigger picture: I do not know your son's story, but, I found it very important to have a psychologist on board to help us with the ocd. If/when my children could not go to the psych, then I went. It is hard, lonely and scary for the child, and the mom- it is so helpful to have someone in your corner. I assume he knows he has pandas and ocd. A good place to start is by talking to him. Tell him you know he always behaves well, and that this is out of character. Tell him you understand it is the ocd, and you can help him, with the psych, to work on it. I think initially, since it seems his issues have worsened/ changed, it is good to take a step back. Will he discuss things with you that bother him? IMHO it is important to keep him out of situations that will cause major ocd like this, without support. Oy- this is all so hard. Don't despair- we have all been there- things will get better. Also, we have found that addressing the medical cause of the ocd to be the most helpful tool we have. I assume you have a pandas doc helping you with this?

Well- if the infection engages the immune system at all, that could cause symptoms. I would continu dosing advil regularly for a few days (or the trameel ?? If it is working).

Tami- I am so sorry for what your son is going through. I completely understand the agony of losing your child to this torturous illness. I guess I should be more blunt in my posting- my point was not to tell you how well my kids are doing- but to say, if you are not seeing relief- maybe you do need to question the path a little bit. Two weeks ago, my dd7 was extremely symptomatic due to recent strep. She raged, and then was remorseful all day. She hit and kicked me, called me names. She said she hated her life and wanted to die. We could not get her to leave the house. She tried to run away several times. I sent my 10 yr old to my Mom's, to save her sanity. Last week, she receive 4 IV doses of solumedral. This week- she has her life back- for now. I don't know your son's story- but, I know Lyme treatment would not have given me back my daughter this week. My kids have been on full strength antibiotics for 2 yrs. This spring, while on 2 full strength antibiotics- they got strep. Makes me wonder what the point is. Are you in NJ? I am too. I can pm my info if you want to vent....

Tami- Don't know if I have much to offer, but I so feel your pain. I have two daughters with pandas, who have been up and down this year (onset 2.5 yrs ago). They did have strep as an initial trigger, but now can be triggered by other illnesses. We have not done IVIG, thus far, but it might be in our future. We are still dealing with the impact of strep in both of them in late April We have explored, and treated for, lyme, for at least 4 months with multiple abx in both girls, with no results- positive or negative. I was horrified every day at the amt of meds and supplements, and the result was as if they were getting placebo! So frustrating and bewildering. We are now taking a step back. I have been consulting with a few new docs (one ILADS, one not). We have begun to really think that lyme is not the issue for my kids. We have stopped the lyme treatment, weeks ago, again with no effects. My older is currently on no abx, only 12mg of zoloft, which I plan to stop next week. My younger is still on Augmentin, but if/when she stabilizes- we will stop that as well. I feel after a few weeks of no meds we can really see where we are, and give their bodies a break. I am really starting to be concerned about the unintended consequences of all these meds, with no clear picture of anything positive they are doing. Both girls still caught strep while on multiple abx- which really makes me even question the use of prophyactic abx for pandas. They got strep- it was terrible, yes- but the world did not end, and due to aggressive inflammation/ immunomodulation they are okay now. OCD is hanging around- but for the most part they are happy and able to do what they want, and life is somewhat peaceful. (My kids have followed a true pandas course, relapsing to be sure, but responsive to pex and steroids, long period of remission before relapse). What we have found to be of most help to my kids are immunomodulating treatments. PEX, oral steroids and solumedral (high dose IV steroids). Without these treatments, I have no idea of where we would be right now, to be honest. Prior to pandas onset (2.5 years ago) I had two normal, healthy, girls, with no (and one very little) anxiety. After pandas hit, both at times have been hurtling toward the point where I did not know how long I could care for them without hiring help Now, I have two kids with mild ocd and anxiety, to be sure, but who have been able to enjoy most of life, and do most of what they want- in my mind- thanks to these aggressive treatments by our wonderful docs. Every child is SO different- which is what makes this SO hard

Dedee- Maybe this is what your doc is planning- but all of those things can be given through the iv (hydration, benadryl, solumedrol, etc). Hydration through IV will be faster and higher qty- there would likely be no need to drink more than normal. If she isn't planning this- I would ask- tell her you are afraid of compliance.... Wishing you an easy day...

Fallingapart- So sorry you are having continued struggles- I have been wondering how your daughter was.... My kids have not had IVIG, and I do not think lyme is their problem, but, I will add my 2 cents: Pandas and lyme are two very complicated, new illnesses, with too little data. Doctors are researching, and doing their best, for sure- but there remains so much unknown- or we would not be here. I think the most important decision we can make as parents, is to do what works. If IVIG has continually helped your daughter- why stop? IVIG is not contraindicated in lyme, some docs use it. Who knows why it helps; lyme? pandas? immune def? unknown issues? But, in the end, if she continues to respond positively, enough to pass the risk vs reward debate- then I think you should continue. Hoping to hear better news soon....

Jenbug- Negative titers are really meaningless in your case. If you read through Buster's studies pinned at the top, you will see that a study showed something like 30% of people do not show those titers after strep. Positive titers are indicative of a recent infection, negative titers really tell you nothing. Dr T knows this very well. He also knows they are considering a name change to PANS, because other things, specifically mycoplasma can be a trigger for pandas. You really don't need to evaluate titers, IMHO, if you have had a positive rapid.

Amy- We are currently having our girl's thyroids checked. My SIL said my niece has thyroid issues. It fluctuates btwn too high and too low. Her endocrinologist said that is the typical course, and eventually she will probably need medication, How did the appt go?

Dedee- A couple of things: First- I think you said your insurance would pay for pex. Could you consider seeing Dr Latimer? It would cost you- for sure- but you could calculate, and choose your least costly option. Second- I know someone who found that their prescription plan would cover the cost of the IG- they would just have to pay the doctors' fee out of pocket. Could you check into that possibility? Thinking of you- don't give up! Eileen

Hawks- We have seen three therapists for my pandas girls. Our first, whom we loved and who was very helpful, was not familiar with pandas. She did treat children with ocd and anxiety. She was VERY open minded about pandas, and clearly saw the difference in normal ocd and pandas (severet and sudden-ness of onset, also, amazing improvement with medical intervention). Our second, was basically a pandas non believer, and we wasted a lot of the first few meetings discussing psych meds etc. She also had a blame the victim attitude BTW, I am not opposed to psych meds, and we were considering at the time, but she was a psychologist, and we were there for therapy. Our third, was very knowledgeable about pandas. It was SO great to have someone I did not have to bring up to speed, and who actually "got it". Unfortunately, she is about 1.5 hours away- just not practical. This is why we are trying FL.

Dedee- Do you mind giving me an idea of the cost of the condo? And where you found the rental? Thx Eileen

Dedee- When will you be there? We arrive August 1st.

I didn't know anything about... We are heading to Tampa Florida this summer for a three week ocd intensive. Dr Eric Storch works with Dr Tanya Murphy. They are well versed in pandas and ocd. We will be staying at the Ronald McDonald house, and having the therapy covered by insurance. We are doing a couple days at Disney after, as a reward! Something you could look into, if you are looking for intensive therapy.....

I have two girls- one has no immune def, one is low normal on a couple numbers. Dr T didn't consider her immune deficient. Looking into it further, as she has been getting sick a lot since pandas started for her at age 8.5- prior to that very few illnesses.

We saw a neurologist her in NJ (usually see Dr L)- during last exacerbation, because it was Christmas time. He does not seem to be a major pandas believer, but did agree to treat them. He did want an MRI and VEEG to rule out other possibilities. I was confident there would be no findings, and was right, however- it is not a bad thing to be positive, and insurance covered it all. I love Dr L- she truly understands pandas- but some other docs you may see down the road might feel more comfortable if you have more test results....

My kids do not react to the strep strain in yogurt. My younger daughter pretty much eats one yogurt every day. She did this prior to and since pandas onset. She has done this through her 1.5 year remission, and during exacerbation. Just no reaction, thank goodness.

michigan pandas- Well- I don't know. I don't know if we have an increase in symptoms off of antibiotics, I haven't tried yet. I would think there would be no difference. If they go downhill off of antibiotics, I might consider the possibility of a long term infection OR the fact that some antibiotics are known to have immune modulating properties. Antibiotics also no longer prevents my kids from having flare-ups- but does it make them less severe? I do not know. I am just thinking- how long can I continue daily antibiotics on two kids, without knowing they are needed, and doing the job they are needed for. I guess this is a philosophical/ conscience crisis, in a way. Am I trading in a problem now, for an unknown future problem?

michigan pandas- I don't regret having the tonsils out- but, my younger daughter had an exacerbation exactly one week later (IMHO- from the surgery). What I would request it 2 weeks of abx prior, IV abx during, and 2 weeks of abx post surgery (clindamycin if possible). We did zithromax before and after, did not help. We ended up with steroids/ pex....

Mine both had T&A done- one pre pandas onset (due to sleep apnea), one because of pandas. I def do not regret it.