BeeRae22 reacted to EAMom in need help with restricted eating, Dr. M and other things...
There is a lot of "stealth strep" around which may be one reason for the "rise" in PANDAS. That means strep w/out typical symptoms (no sore throat, no fever). Too bad nobody throat cultured her when her symptoms started (before she started abs). It's very possible strep was the trigger. My dd had a throat positive culture when we finally learned of PANDAS and we insisted on a swab (2mo. after onset of behavior change). The doc was surprised "Gee her throat doesn't look sore." She also had vaginal strep (culture) and her sister was positive on the rapid (asymptomatic carrier). My PANDAS dd never got elevated strep titers. Her only abnormal bloodwork was the Moleculera (Cunningham) Test.
Things I would recommend for now:
1) continue Azith. even increase the dose? how much does she weigh?
2) throat culture family members. If there is a strep carrier (culture positive, no symptoms) that will affect your PANDAS dd. Strep in the household must be cleared
3) start Ibuprofen 3x daily (typical dose for size). Make sure to give with food.This will help get brain inflammation down.
4) continue whatever you need to do keep her calorie intake up. You are in a much better position than we were!
5) from what you have described, your dd's symptoms sound like classic PANDAS. (Too bad nobody did a throat culture to look for strep! My dd never had elevated titers.) I ditto the suggestion (above by Kara) to test through Moleculera ("test for PANDAS") if you need to convince yourself this isn't strictly psychiatric (also may help get IVIG coverage in the future)
6) I agree with others about supplementing with zinc
Avoid steroids if you suspect Lyme or are thinking of doing the Moleculera test (steroids will affect results).
Also, you thought about getting one of those super blender things? (Vitamix?) where you can make healthy soups and smoothies?
PS my PANDAS dd also has super high cholesterol. What were your dd's numbers? (I'll have to look mine up later...I think had a thread about it somewhere)>
PS--we didn't use feeding tubes, but some do if it is bad enough and you can't get them to eat on their own
BeeRae22 reacted to sf_mom in need help with restricted eating, Dr. M and other things...
I haven't read all the responses lately so I apologize if someone has already mentioned this to you since my last post.
On of our Dr's believes SKIN PICKING and NAIL BITING is typically trigger by one of three things; Vitamin/Mineral deficiency (Calicum, B, Copper/Zinc ratios), Parasites or Yeast.
Again, I would talk with Dr. M about running the SpectraCell Vitamin/Mineral test and also a comprehensive stool analysis. The stool analysis will look for Parasites and Yeast. The SpectraCell will look for the inner blood cell utilization of vitamin/minerals and not serum levels.
At one point our older son was biting his nails non-stop. We had been doing chelation with him which depletes vitamins/minerals and nail biting started shortly after starting the chelation process. Since adding higher levels of Zinc, Calcium, Copper his nail biting has completely stopped. We were supplementing these vitamin/minerals at the time but much higher doses have helped: 120 m.g. of zinc, 6 m.g. of copper, 1,000 m.g. of Calcium. I do not recommend supplementing at these higher doses unless you have a Dr. following the copper/zinc ratios.
I am hopeful with antibiotics and perhaps some zinc you will be make some headway with the eating issues.
BeeRae22 reacted to KaraM in need help with restricted eating, Dr. M and other things...
I'm one of people LLM mentioned above.
We only had a brief encounter with restricted food intake it is was the result of contamination fears (her lips that might touch the food, the food itself, etc).
However, the father of the child featured in Niel Swidey's Globe articel (see http://pandasnetwork.org/the-boston-globe-features-pandas/) has come to our Salem Support Groups a few times. He is not on this board, but he has told me that he is willing to speak with anyone. So let me know if you want me to connect you with him. I'll need you to send me your email address though. You can PM it to me.
You seem like you are still wondering whether this is psychiatric or PANDAS/PANS. Have you considered the Cunningham test? Having those results really helped us purse the PANDAS/PANS path with confidence. And when I was in doubt, I was always able to look back. See http://www.moleculera.com/ It can be a little pricey, but depending on your plan, insurance may cover some of it. I will say, though, that it is one of the best investments we made in helping our dd.
This test does not test for any specific infection, but determines whether there are anti-neuronal antibodies attacking the brain...a sign that the immune response is mis-directed. (I'm out of practice on explaining this one, so someone else may want to chime in).
We too started with negative throat culture and a negative Lyme test. But we did eventually find Bartonella (another tick born disease). Based on that, Dr. B, and then Dr. J. treated her for both Lyme and Bartonella. With the appropriate treatment, she has returned to health. Her Lyme test did eventually show as positive (both Igenex and the LYme Culture test). So I wouldn't dismiss Lyme just because the test was negative.
Please feel free to PM me with any questions. I'm short on time in writing this today, but wanted to respond and let you know I'll help in any way I can.
BeeRae22 reacted to airial95 in Four Years - A Reflection
Year 4 – a look back
Every year I have posted a list of reflections, things I have learned through the previous year’s fight and struggles. I have found that each year it has helped me to be able to reflect on how far we have come, as well as to revisit the previous year’s reflections to keep perspective on where we have been.
I have found it helpful to even look back at each year's post to see just how far we've come - Our First year: http://latitudes.org/forums/index.php?showtopic=12108&hl=
And here are my reflections for the 4th year of our journey:
I have often dreamed of “life after PANDAS”, I learned that there is no such thing. While my children are well on their road to full recovery, our lives have forever been altered by PANDAS, and there will never be a day where PANDAS does not cross our minds, or lips. While knowing that “life after PANDAS” is a fantasy, I learned that I can use the impact PANDAS has made on our family to help others by sharing our story, experiences and support to those who have come after us. Hopefully, they will not take 4 years to find the healing we have this year. I learned that fear may cause us to doubt our best instincts, but the support of kind strangers who have become “virtual” friends over the years, those fears can be conquered. I’ve also learned that the unwavering support and advice of those friends can only carry me so far. I am their mommy, and only I can decide what is best for my children, no matter what anyone else says, even with the best of intentions. Our instincts as parents – no mater how scary - are still the best weapon we have to help our children. I learned that even the most fierce mommy advocate can get it wrong sometimes too – IVIG has been a game changer for my kids, and I regret being too afraid to try it for my son sooner. I learned to never underestimate PANDAS – just when you think you have it “under control” – it pulls the rug out from under you. Again. I learned that as we travel farther down the path to recovery, the setbacks seem greater – even though they are comparatively minor compared to the through which we had previously passed. I learned that even after living with this for 4 years, even those seemingly minor setbacks will still break your heart all over again. I learned that I am not the same person I was 4 years ago when I started this journey. The hopes, dreams and goals I had for myself, and my family, back then are hardly recognizable to me anymore. I’ve learned to embrace the woman I am now, and realize the hopes, dreams and goals I have now, while different, do not represent a failure of what I envisioned for my life, but a growth that comes from naturally giving yourself over to your family, and God, in ways those who don’t face challenges may never understand.
BeeRae22 reacted to LNN in need help with restricted eating, Dr. M and other things...
I don't want to put words in his mouth, but my personal experience with Dr M is that his training as an osteopath with a natural/integrative bent puts him in the camp that feels psych issues are medical in their causes - whether it be due to infection, nutrition, environmental toxins, methylation imbalance....
If your DD was fine and then suddenly was not, there's a physical/medical cause. People don't go nuts or turn anorexic for no reason. Especially children.
I've not had to deal with severe eating issues. Ours were mild compared to what you're dealing with. But I'd put real emphasis on getting a balance of nutrients into her, more so than calories. It's the nutrients - the B vitamins, the zinc, magnesium, Vitamin C - that are critical to neurotransmitter production and balance as well as immune system health. There are many, many nutrients involved, but these are the biggies for the immediate term. Zinc deficiency is implicated in some anorexia and is also essential to the immune system. The Bs are essential to neurotransmitters. Most commercial multi-vitamins are poor quality (e.g. they use cheaper, less than ideal forms of certain vitamins) but it's a start. See if you can get her to drink the ensure for calories and then take a multivitamin - or buy a liquid multivitamin that you can sneak into the Ensure.
Try (and I know it's hard) to no obsess about the eating. It invites power struggles and feeds into OCD behaviors if you start feeding her as a bribe to get her to eat. You can never win when you try to bribe OCD. It's a wretched, slimy bastard that can't be trusted to uphold its end of any bargain. If you get 1200 calories into her and a daily dose of the above vitamins, that's all I'd strive for. But then, I'm not the expert on the food issues. EAmom, KaraM, DCMom and a few others have fought these battles more than I have. EAmom's daughter was hospitalized for restrictive eating. You might try PMing them, as they're not on forum often anymore but are willing to share their advice if you contact them.
BeeRae22 got a reaction from Teri in Not sure what to make of this.....
So, I've posted about my dd several times now-- "daughter with emergent condition". Took her to a specialist, who agrees she has PANS symptoms and suspects possible Lyme coinfection. Well, she has now been on antibiotics for 48 hours, and for the first time in 3+ weeks she just ate something other than bread and ice cream!
So, she ate almost a whole hotdog. Now, this was one of the foods (one of the only foods) she would eat for awhile, until she eliminated that and went to strictly bread and ice cream. She was terrified to eat anything else. Not that she didn't want to, but she was terrified.
I don't want to look a gift horse in the mouth, but is it even possible to see improvement in symptoms in 48 hours? Or is this a psychological effect, having gone to the specialist and getting the "medicine that's going to make you better" ????? I have to wonder... I'll take it, either way, I've never been so thrilled to see someone eat a hot dog!!! what's everyone's experiences been with starting treatment? I'm sure I'll never truly know the answer to my question, but I sure would like to!
The doctor also told me that there might be a flare up of behavioral symptoms, and that that would actually be a good thing, because it would more accurately pinpoint the idea of a Lyme coinfection. Right ow, we're not exactly sure what we're dealing with. The Lyme test she had was negative, but I was told that that doesn't necessarily mean she doesn't have PANS. I've had several different sources tell me that there are a few different coinfection s that result in psych symptoms. The restricted eating was not her only symptom, she's had a number of other behavioral symptoms and personality changes as well.
It might be my imagination, but she seems a little more "lively" and animated today than she has been, and the school psychologist actually commented on how smiley and happy she seemed today....
Breathing big sigh of (hesitant) relief. For the first time in several months, I feel like there's hope for recovery..... What a difference a hot dog can make!
BeeRae22 reacted to Hopeny in Not sure what to make of this.....
Awesome! We did have some pretty spectacular results very quickly with antibiotics of the psych stuff, though it is a long haul don't get discouraged. I think even within 24 or 48 hours of starting Doxy, when that happened I knew we were on the right track. Lyme physical symptoms (pain, muscle stuff etc) took longer. The fastest working abx for us were Doxy, Augmentin and Biaxin. With Rifampin/Zith combo it was more like a slow but steady result. I found we had a really big improvement like 60-70% quickly and the rest has been the long haul. Of course there is hope, with the right treatment, prayer, perseverance and commitment she will get better. With Lyme & co, the spirochete changes forms and so do some of the con infections so you go up and down a bit according to the life cycle and herxing. I frequently felt like I was playing whack a mole. Sometimes it's two steps forward and one back. Just keep learning and watching.
BeeRae22 reacted to qannie47 in Not sure what to make of this.....
I am smiling for you! We all know how good it can feel to see positive changes! You will find as you navigate Pans/Pandas that each episode can be unique onto itself. Eventually, you should start to connect the dots and find some form of pattern....that takes some time, but it will bring some sense of control to the situation. I am glad that your child seems to have responded so quickly!
BeeRae22 reacted to mama2alex in Not sure what to make of this.....
Whichever it is, so glad to hear this! Sounds like you're in good hands.
BeeRae22 reacted to Mommy2MCL in Not sure what to make of this.....
Yay! I've been wondering about your daughter since your last post. I think you should take it as a sign of a positive treatment. I just wanted to add that while you may see quick progress it can also slow down so please don't be discouraged. To me as I began this disorder I had so much doubt. But each small step of progress helped to diminish that. Thank you for updating.
BeeRae22 reacted to nicklemama in Are there other diseases, syndromes or medical conditions that mimic P
My son never tested positive for anything for two years....no strep,mycoplasma pneumonia, HHV6 or other herpes viruses, CMV, EPV, Lyme. He was still considered PANS. When we finally found a local doctor willing to look more in depth again( we were originally Dr T's patient and then two Ivigs with Dr K) she found he was positive for ehrlichia and anaplasma. Treatment for those has put him in a really good place. Keep looking.
BeeRae22 reacted to dcmom in Daughter has emergent condition- I suspect PANS and NEED HELP
Can you share what area you live in?
Sounds like pandas- both of my daughters have had restrictive eating due to pandas. Fear of choking is even mentioned on Dr K's website.
Do not take her to hospital if at all possible. Get in to a pandas doc ASAP.
BeeRae22 reacted to PowPow in Daughter has emergent condition- I suspect PANS and NEED HELP
I sent you a private message, beerae22.
Top right of your screen look for the red notifications
BeeRae22 reacted to pr40 in Daughter has emergent condition- I suspect PANS and NEED HELP
if you are in CT, why not contact Yale Child Study Center and dr Lekhman? he was one of the two principlas in the NIH PANDas study.
I would call them right away.
BeeRae22 reacted to Hopeny in Daughter has emergent condition- I suspect PANS and NEED HELP
Sorry I didn't realize my mailbox was full, I pm'd you
BeeRae22 reacted to 3boysmom in Daughter has emergent condition- I suspect PANS and NEED HELP
You can try and call Dr T in New Jersey .... He gave us a phone consult right away....cost $400. But found the answer and antibiotic we needed. We are all praying for you.... This is scary, we know!
BeeRae22 reacted to Mommy2MCL in Daughter has emergent condition- I suspect PANS and NEED HELP
With her symptoms I would call until you can find someone to run the tests.
Thoughts and prayers for you and your daughter...