memom

We dirve 5 hours from Maine to see him. We will have our second appointment in a few weeks. Alex on this board also drives that distance and has done IVIG with him. He is kind and bright and motivated to help our kids. He is also willing to learn. Ellie

Thanks so much for your summary. It is helpful to hear what other families journey's include so we don't have to recreate the wheel every time. It is nice to hear that Dr. K. and Dr. B. are communicating. \ Let us know how IVIG goes and what dose you land on. Ellie

Coco, Thank you for this post. Also, thank you for helping to get two physicians talking who are treating a lot of our children to come together in their attempts to best treat our kids. (We especially will benefit as we are working with Dr. B. and have consulted with Dr. K. They were until now not on the same page. We have another visit with Dr. B. in a few weeks and wonder what we will hear). Dr. K. feels dd needs IVIG now with repeat expected. Dr. B. only 5 hour drive. Dr. K. plane ride. Thanks again for facilitating change. Ellie

Did anyone listen? Ellie

Harmony, Your question was whether or not the sensitivities are accurate as a test to see if an antibiotic will work. It is the most important test when care providers dealing with an infection that does not seem to be responding well to normal treatment or keeps comming back. There is a great thread that Alex wrote on this subject, I just read it. It speaks to how that even though strep should be sensitive to all cillins, that it does not take into account other bacteria that may be present. These bacteria though not part of the regular infection can produce a chemical that breaks down the antibiotic rendering it less effective to the strep you're trying to kill. That is why augmentin works when regular amoxicillin doesn't. (Certain staph strains can disable penicillins). Take a look at Alex's post. I think someone else recently reposted Alex's post of Augmentin extended release discussion. Ellie

There are two ways to test for CF carrier status. First is with cheek scraping. The second is with blood. The cheek scraping tests for the majority of common mutations (I believe the number is 98%). The blood can test for a few more rare ones. CF can be spontaneously mutating though not common. Most often both parents have the recessive gene. You can test negative in pregnancy but actually be positive. Most of the time the mothers swab is tested first, if it is negative, they don't test the fathers swab. The problem with this system is that if the mother had a rare mutation not caught on the cheek swab, it would get missed. In that situation if the father had a common mutation their baby would have a 25% risk of CF even though the cheek swab was normal. This actually happened to a patient of mine. Most of the time CF is picked up in the first few years of life. It can however go undiagnosed for years. Though it will more likely than not come back negative given a negative once, I would want my child to be retested given the health history Harmony describes. Ellie

You are a guiding light for us all. We have seen glimpses of this with steroids. Hope it is within our reach sooner rather than later. DD was around 30 at her worst. 8 after steroids/ Tonsillectomy/antibiotics. Not sustainable yet for us. Keep adjusting the antibiotics, treating brother, and another month of steroids. So want this to be a distant memory. Ellie

Thanks for posting this. What I don't know, is how long if the infection is treated effectively, will the antibody titers stay elevated? My suspicion is the ASO would drop within a month, the Anti-dnase may take longer (since it is slower to rise after an infection). Given how high you husbands are, I would agree looks like he currently has strep somewhere. Your symptoms also sound suspicious. I am glad they are gone, but wonder if you had tested your titers at that time if they would have been elevated. If they return, I would sure follow up on that. Remember that you can get joint pain with rheumatic fever. You can also get it in your urine (I was talking with a MD OBGYN collegue yesterday about a pregnant patient of hers who mentioned her child has been diagnosed with Pandas. She herself just got out of the hospital with a raging GABHS pylonephritis. She wondered if there was a connection. The MD thought probably not, I said absolutely yes! Too coincidental. I may consider getting my titers checked. I did do a throat culture this summer and it was negative. I had my 20yo sons titers checked last month (suspicious of mental health symptoms that resembled encephalitis like his sisters Pandas brain) and found them to be significantly elevated (antidnase B 473, ASO 645 both reference ranges should be less than 200). He has what we think may be adolescent onset (started 4 years ago, about the same time his sister was ramping up with Pandas OCD but not yet diagnosed). I have never had my husbands or my titers checked but may ask for it at his next blood draw. Thanks again for the posting. Ellie

Hi Judy, I don't have answers as much as I am able to relate with some of your words. I think out kids are close in age. My dd17 has mentioned her fears of life after OCD. She has mentioned how comforting it is to have everything dictated for her through her OCD (well, not everything). It is almost like an addiction. She has spent a lot of time protecting it. In the moment, it calms her anxiety, it dictates who she can like, what she wears, what she say's, you name it. What she is less able to see is all she's lost because of it. We are still trying to find our own way. In some ways, I feel like I'm the only one who it working towards her healing (and she sabotages both herself and me all the time). Some of the other suggestions are great. Good luck and keep us posted. Are there plans for another IVIG? Ellie

Hi Karen, I'm no expert, but have gone through the testing you mentioned. Those both look low give the reference ranges (and assuming those ranges are accurate for the age of your child). You physician is looking to see if there is an immune deficiency. Many of the kids on this board have and immune deficiency that contributes to their Pandas and recovery. The thought with Pandas is that it is due to an abnormal immune response. Some of our kids over respond (ramped up immune system), others seem to have under responding immune system (immune deficiency). Though it is hard, please wait for all the tests to come back then have a good sit down with the physician working with your child. The one good thing about immune deficiency as part of the puzzle, it seems like insurance is more likely to cover IVIG if it is needed in the future. Good luck. You are fortunate that the antibiotics are working for now. Ellie

Susan, Dan Gelleher is in Mass., not Maine. Thanks, Ellie

A strep culture/quick strep reports only GABHS. A throat culture will report other bacteria as well including other strains of strep (many strep strains possible). I did a throat culture on my daughter and it reported 4+ Beta Hemolytic Strep Group C (she has has GABHS many times but I wanted to see what was growing on her pitted huge tonsils when her quick strep was negative).

Hi Vickie, Here in Maine in the winter, the primary problems are animals and inside dust mite issues. Our outdoor allergins are a non issue from November till about April. She does have animal and indoor allergies, but also spring, summer and fall outdoor allergies. Her allergies seem to have been worse this fall and winter than years past but she has struggled since a baby (17years). I guess I have just noticed it a lot as she goes through boxes of kleenex. On the steroids, she stops using kleenex altogether. It is a nice break for her. Ellie

Memom - My immunologist said the same thing as Dr. B, calm the immune system. But I heard also that IVIG takes care of allergies? Have you ever heard that? I had not heard that the IVIG would not be effective if allergies were too bad. One of the other families on this forum stated that IVIG worked wonders on her childs allergies and ?asthma?. Dr. B. didn't seem to think there would be any affect on allergies with IVIG. Ellie

Dr. B. also suggested this for my dd17Pandas. It is his feeling that until we calm her immune system with allergy shots, IVIG may not last and she is more at risk of relapse as when her allergies are kicked up (and that is often), it does seem to make her OCD worse. She has had allergies since a baby and we've controlled her environment and used antihistamines to control them. When I asked the timeline for seeing results, he said 6 months. My heart sank with the idea of waiting another 6 months before considering IVIG, but on the other hand, the prospect of loosing the benefit of the IVIG (especially if we have to pay out of pocket for treatments) because of allergies is also not great. He did agree that if she started flaring with worsening OCD, he would not continue. There was another parent on this forum that also went down this path and found it worsened her childs Pandas symptoms, but I don't think anyone has mentioned it helping or a neutral effect. Please keep me updated as I have a vested interest as well. memom Ellie

Melanie, Morgan had leg pain one day on last steroid burst when she was naturally on taper down but then also forgot to take one of her steroid doses (so too quick taper for 24 hours). Resolved after 6-8 hours. Ellie

Bronxmom, Thanks so much for your post. For those of us that are wondering if IVIG is the next right decision, it is helpful to hear your story. Please keep us posted. Ellie

Because there is no standardized treatment for Pandas. Also, I believe it depends on the type of physician that is treating ie., neurologist, immunologist, psychiatrist, pediatrician etc. They seem to approach treatment with their specialty focus and relative comfort with things like med dosing.

Hi Pixismommy, I am wondering if you had testing to determine sensitivities or just just going for the healing diet approach. We went to decreased gluten with dd since October. Though I noticed a huge difference in my body, no change for dd17Pandas. I am considering getting Great Plains lab food allergy testing with IGG and IGE to really target the foods that are an issue rather than paint with such a broad brush. Such a diet will be most difficult for my kids age unless they buy into it (and they don't). They are independent, driving etc. We don't have junk in our house, but certainly have grains, rice, fruit, cheese etc. Thanks, Ellie

Though I'm not an expert, my understanding is SC is the same underlying pathology as Pandas but I don't think OCD or tics. Better accepted as a medical diagnosis (i.e. less controversy) than Pandas and you will be able to get IVIG paid for without any problem. There is a parent on this forum that had it as a child. There is hope and healing for your child. Hang in there. Ellie

Hi Gayle, DD17 120lbs. Prednisone 40mg once daily for 7d then 30mg for 7d then 20mg for 7d, then 10mg for 7d. Last time she did this, the high dose was 50mg split morning and night (30mgAM, 20mgPM), and tapered over 5 weeks. Ellie

DCMOM, I am so sorry your daughter is having a bad spell. It means it is bad for you all. The fret, worry and fear it fills us parents with when we realize we have not one, but two or more children with this is huge. Let us know how the steroids are helping. I am waiting anxiously till Tuesday to address this with Dr. K. for my older son. I am tempted to give him some of his sisters steroids but she needs them now as well. Ellie

Melanie, I think my dd17 started her steroids the same day your son did. She also had a great day on day one. She told me she had no repeating, no thoughts, first time since her last steroid treatment in October. She feels so much better on the steroids, I so desperately want someone to let us do IVIG. Are you on the 5 day or one month path? Ellie

This is a timely topic for me. You may remember I mentioned several months ago that I was wondering if my 20 year old son may have a Pandas varient that started when he was 16 (late sophmore year high school). He has struggled with mental fogginess, difficulty learning, anxiety, rage, fatigue, dilated pupils and depression since that time. The fatigue, rage, dilated pupils and anxiety over the past 4 years ebb and flow, the rest is constant. No improvement with multiple tries on meds and counselling. He is unable to be in college when he was previously a high honors student. We have tried college twice and both times he couldn't organize his thoughts well enough to get through the half way point of the semester (last time we tried was in September with an intro class that he should have been able to do with his eyes shut). Symptoms correlate with sister definate Pandas timing. Well, recently had labwork done for titers and Cunningham. Significantly elevated (3-4 times high normal for both ASO and Antid-nase), and Cam K at 156. Antineuronal antibodies 2 at high normal the others midrange. We have a phone consult with Dr. K. Tuesday given he seems to be the one who recognizes the adolescent onset and may have more experience in treating. This is our last shot with this young man. We have exausted all other avenues and have come up no better than when it all started at 16. His personality is completely different than prior to all this. He is sullen, noncommunicative, and frustrated with his life. I started him on Zith 500daily about 3 weeks ago, not much sign of improvement yet. I am hopeful we can get him back. This disease stinks. Ellie

I also have an appointment on the phone with Dr. K. Tuesday. I would love to hear what info you get as well. Ellie