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HopeinHIM

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  1. Thanks
    HopeinHIM reacted to GAmom in will Normal return?   
    My son has similar behavioral issues. We tried different things, including the Ross Greene method. But, because of his age regression due to the PANS/PANDAS, "normal" techniques didn't work.
    We ended up doing an intensive CBT program a couple of years ago and now do weekly CBT therapy. He's improved alot. It's still ongoing.
  2. Like
    HopeinHIM got a reaction from GraceUnderPressure in Bartonella, purple streaks, mold   
    My heart breaks to read this but I am also encouraged by a parent that is striving for healing and being that  wonderful fighting advocate that these poor kids so very much need.   I have two children.  Both with difficult stories.  Very similar to yours.
      Firstly, I will say there was no single organic reason for their fall .  Everyone is different so for some its treat the lyme of mold and bingo the child heals.  My oldest has the  marks and we were told too that they were stretch marks .  He is tired all the time, easily overwhelmed and tics. Our youngest was home-bound for years. What has worked for us?   1. Clean eating.  They both have detox issues so every time we treated for Bartinella/Lyme they would fall apart on even the smallest herb or anti B.  UHG So we could not do much.  When they were at their worst they were very sensitive to yeast and Molds but as they healed Mold became less an issue. NOW Most foods they eat are organic, lots of veggies and fruits, grass fed beef and chix along with cold water fish  2x a week (good for brain inflammation) We removed Gluten/dairy/soy.  The immunologist (conventional from big children's hospital) believes that certain kids suffer from innate immune responses from certain trigger foods and these three she found to cause inflammation effecting brain the most.  Huge difference for my youngest especially. 
     He is  also supper super thin and she has him on amino acid plant based or bone broth based protein shakes between meals and we use high fat organic coconut milk in can. His mind began to clear in a few months just by cleaning up diet.  2. Having Bowel movements 2x a day helped their poor detox for sure. Increased pure water and actually used fiber powder for a while until they both go now 2x a day.  3.  Good counseling because even if its caused by something outside of themselves the  chemistry is still off and the OCD and anxieties/depression are there and by learning how to deal with these emotions better help's them navigate thru these horrible waters.
     As we treated our youngest son for Bart all his emotional issues (agoraphobia, Bi polar, OCD) disappeared.  WE used low low low dose SSRI and nutritional lithium as well.  WE continue to treat yeast, bart with herbs and cycles of 5 day Tinizidol for gut bacteria.  Both are NOW able to handle the treatment bc their bodies are functioning better. Diet was a huge life style change and took me 3 years to finally own it and implement it.  Best thing we ever did. Not the cure ALL but huge piece of the puzzle for us. Now not everything that comes our way causes them both to fall apart and start over.  They are beginning to strengthen the terrain so that the genetic predispositions  don't  derail them at every turn. Keep searching, praying and never give up!!!       
  3. Like
    HopeinHIM got a reaction from mama2alex in Bartonella, purple streaks, mold   
    My heart breaks to read this but I am also encouraged by a parent that is striving for healing and being that  wonderful fighting advocate that these poor kids so very much need.   I have two children.  Both with difficult stories.  Very similar to yours.
      Firstly, I will say there was no single organic reason for their fall .  Everyone is different so for some its treat the lyme of mold and bingo the child heals.  My oldest has the  marks and we were told too that they were stretch marks .  He is tired all the time, easily overwhelmed and tics. Our youngest was home-bound for years. What has worked for us?   1. Clean eating.  They both have detox issues so every time we treated for Bartinella/Lyme they would fall apart on even the smallest herb or anti B.  UHG So we could not do much.  When they were at their worst they were very sensitive to yeast and Molds but as they healed Mold became less an issue. NOW Most foods they eat are organic, lots of veggies and fruits, grass fed beef and chix along with cold water fish  2x a week (good for brain inflammation) We removed Gluten/dairy/soy.  The immunologist (conventional from big children's hospital) believes that certain kids suffer from innate immune responses from certain trigger foods and these three she found to cause inflammation effecting brain the most.  Huge difference for my youngest especially. 
     He is  also supper super thin and she has him on amino acid plant based or bone broth based protein shakes between meals and we use high fat organic coconut milk in can. His mind began to clear in a few months just by cleaning up diet.  2. Having Bowel movements 2x a day helped their poor detox for sure. Increased pure water and actually used fiber powder for a while until they both go now 2x a day.  3.  Good counseling because even if its caused by something outside of themselves the  chemistry is still off and the OCD and anxieties/depression are there and by learning how to deal with these emotions better help's them navigate thru these horrible waters.
     As we treated our youngest son for Bart all his emotional issues (agoraphobia, Bi polar, OCD) disappeared.  WE used low low low dose SSRI and nutritional lithium as well.  WE continue to treat yeast, bart with herbs and cycles of 5 day Tinizidol for gut bacteria.  Both are NOW able to handle the treatment bc their bodies are functioning better. Diet was a huge life style change and took me 3 years to finally own it and implement it.  Best thing we ever did. Not the cure ALL but huge piece of the puzzle for us. Now not everything that comes our way causes them both to fall apart and start over.  They are beginning to strengthen the terrain so that the genetic predispositions  don't  derail them at every turn. Keep searching, praying and never give up!!!       
  4. Like
    HopeinHIM reacted to SarahS in PANDAs - Rages   
    Hi everyone,
    I'm new to this forum, but I thought I would reach out since I've read a lot of helpful advice on these threads.  My son (10 yo) started experiencing tics and depression after a bout with impetigo. He spiraled downward pretty quickly with suicidal thoughts, bad tics, separation anxiety, severe irritability, etc.  We read about PANDAS because a friend's daughter had it and found that many symptoms were similar as it seemed like he changed overnight.  We brought the idea to our pediatrician, but she quickly said it's not PANDAS because his ASO titer was normal.  A friend suggested Advil which we have been giving him and it seems to be helping.  We then found an amazing ND who was open to the idea of it being PANDAS, put him on Augmentin right away and did bloodwork.  We are also waiting for Cunningham Panel.  The bloodwork came back showing severe strep infections in the rectum and throat and a low Imuglobin A.  Our ND thinks that he may indeed have PANDAS.  We are on day 4 of the Augmentin and we can't really tell if it's helping yet.
    He has been having extreme rages that have gotten better since he's taken the Advil, but are still happening (mostly at night or when he's due for another dose).  I'm wondering if anyone has advice for us as far as how to help with the rages.  He goes absolutely crazy (and he was an extremely calm and peaceful kid before this all started - an "old soul") and it's like he's possessed.  He wants to hurt himself and he hits himself in the head and he screams and writhes around on the floor.  Very scary and heartbreaking to watch.  Any advice on how to calm him down once he starts raging for those who have experienced something similar?  It comes out of nowhere so hard to figure out how to avoid it.
    Thanks in advance for any advice!
     
  5. Like
    HopeinHIM got a reaction from saidie10 in DS having relapse 6 years after healing from tonsillectomy, 2 IVIGs, 1 year on abx...what's happening?!?!   
    Check for bartonella!  Lymes co-infection.   Our son raged and OCD out of no where.   If he is young it could be he is entering puberty and that can rock their world as well. For us it was three long years and the fear is always there. We cleaned up his diet and gave supplements based on organic urine test and 23 n me test. Best thing I ever did!!
    His ups and downs now are mild compared to before (no soy, dairy or gluten)  He tells us his brain is calm now.  We found that he was depleted of B1 and B2 as well by the test results. I thought big deal when I heard that but big change once we started to supplement.  
    Our immunologist claims that these children have innate immune response to various triggers depending n their genetic predisposition. This causes inflammation and the mental symptoms are a response to that inflammation.
  6. Like
    HopeinHIM got a reaction from mama2alex in perhaps a little advice! Post Viral Chronic Fatigue Now?   
    I have done the 23&Me for Methylation issues and we addressed some viruses with herbals but the Mold is something I only hear about. It seems daunting to me. Since this health debacle, we have moved several times so I just assumed that all of the homes couldn't be causing mold issues w him. I had our first home completely looked at when this first hit our son. I purchased a BlueAir room cleaner that takes out mold. That placed in his room as well. Are there a few good top products you would recommend for mold?
  7. Like
    HopeinHIM got a reaction from whyPANDAS in Tired-Tired-Tired   
    Going on 3rd year with PANS/Bart diagnoses for now 12 yr old and Pandas/Babs for 22 yr old. Tired, tired tired! We have done months and months of anti B's and gone to top Pans docs here on East Coast and several diff LLMD/LLND from here to Connecticut. All sincere decent doctors who seem to care but make it clear that ultimately "they just know what works completely"! My kids are guinea pigs for meds, herbs and Methly supplements on a regular bases. It's Auto immune encephalopathy, post infection encephalopathy or reoccurring encephalopathy. Pick one or all of the above! We did Anti b's until their stomachs got turned inside out (stopped the raging thankfully) then moved to herbal Byron White and Buhner protocols. Some success here and there but ultimately life is gone as we know it. My eldest can only go to college a course at a time but even at that feels tired and overwhelmed often. My little one has had NO school for 2 years now and went form straight A student to IEP special Ed a few hours a week if we are lucky. No covered dishes come to the house only naysayers and doubters. Thankful we have a supportive family that listens with sympathic but helpless ears. It's best, I find it best to just keep quiet about the illness and be vague because most people don't understand and don't want to.Including the pediatricians or GP's that we need to go to on occasion. The best (worst) part is that most of the entire medical community involved in this mess have different strong opinions and protocols. One says, " take this and that", others say "oh no that's hard on kidneys or liver" another says" give methyl B's only to quickly say stop methyl B's. Treat parasites, don't treat parasites Blah, blah blah. I actually had a phone consult with our Pandas doc who very honestly admitted that all the anti B's may ultimately not be the best for the immune systems in the long run. That's after I spend $800 for the phone consult! He clearly admitted sadly that "he just doesn't have any idea in the long haul and that we are all in the genesis of this disease unfortunately . Forget the money we spend on all of the docs, meds and herbs. The marital stress it puts on us is unbearable. I attempt to go to Gym , pray , eat right and so on but what mom really wants to spend time on herself when her children are constantly telling her "I DONT'T FELL WELL!!!" I am thankful that the raging is gone but both children are NOT thriving they are just surviving! If I had unlimited resources I would keep going and never stop until they healed but we are depleted and need to make 2016 the year that we just adjust to the NEW NORMAL!!
    Did I say I was tired?
  8. Like
    HopeinHIM reacted to BeeRae22 in Tired-Tired-Tired   
    I feel the same right now. Dd10 is raging daily again and we're throwing more abx at her. I'm ready to quit all meds and see what happens. Thing is, she was 100% toward the end of summer until just before Christmas when we had strep in the house- been flaring since and getting worse. What does that mean after 2+ years of abx and treatment? We see a respected Pans/pandas llmd who, like you said, seems to care and I do trust, but he obviously doesn't know the sure answers--so am I making a mistake by keeping my 10 year old on all of these long term abx? And trying different meds and herbals all the time? Maybe the rages are my fault because I'm "letting her get away with things" like my mother and husband suggest lately? Do "normal" kids go into a full-on hitting, kicking, biting, swearing tantrum because they have to watch the tv in the bedroom instead of the living room because their sibling is watching something? Or because their father ate the first cookie out of the batch instead of them? (Granted, she was looking forward to this after her bath tonight, and the rest of us were waiting for her to get out too, but her father didnt know and accidentally ate the first one, and like an idiot, I pointed it out to her- not using my brain! She flipped the f--k out). Is she just "spoiled"? Thing is, she was fine a month ago! Down to 1 abx and NO problems..... How do you go from that, to psychotic over a cookie being eaten?? she threw out the batch, and raged for an hour- and when I finally told her father to get the Xanax, she cried and cooperated when she realized I was serious about making her take it (I've only given it to her once, about a year ago? She didn't like that- it knocked her in her little butt!) -- but what does that mean? That I "scared her straight"?
     
    Not trying to high jack your thread- but I am in the same place as you tonight. Within the past 24 hours I've had 2 of my friends and my mother tell me that she "should see a therapist". That it seems "she can control herself". Maybe I'm the one that's crazy, I don't know. But I'm so sick and tired if more appointments, more money, more meds and no real answers. There aren't any decent "therapists" within a 20 mle radius that take our insurance that I've found... And you can't just go once to see someone-- you have to invest.... Time, money, emotions. I'm tired too. And so fed up with all of it.
  9. Like
    HopeinHIM reacted to sf_mom in Tired-Tired-Tired   
    Here is a great video on one person's success treating Lyme et al with alternative therapies. He is very relatable guy. My 11 year old son watched the video and loved it.
     
    It is a hopeful story and puts forth some very affordable suggestions.
     

  10. Like
    HopeinHIM reacted to TOaksMom in My Daughter's PANS Journey So Far   
    Although I’ve been reading this forum for a year, this is my first post. We recently went to a new doctor and I wrote up a summary of my daughter’s condition for him and had some new tests run and I thought the chronology would be good to introduce ourselves and possibly help someone. There’s so many things that we’ve tried that I haven’t written here. I would love to develop a sort of typing of our kid’s symptoms and their reactions to the different kinds of supplements, herbs, antibiotics, diets, psych meds, etc. which would be helpful for us to see trends and guide us in what might work better for our particular type of child. We seem to keep doing the same trials and errors over and over again and so much precious time of our kid’s childhoods is lost in the process. I hope that every affected child in the world is freed of this insidious disease.
     
    My daughter was born in 1997. Normal infant and toddler years except she had very loud teeth grinding/bruxism at night when she was sleeping. Dentist noticed molars had wear marks. Received all childhood vaccinations. Doctors would always comment that her lymph nodes and tonsils were enlarged during routine checkups but never did anything about it.
     
    Was very sweet and kind until around 3rd grade, 8 yo. OCD starts.
     
    10 yo, she got the TDAP vaccine. OCD increased and hoarding starts. Started getting defiant and oppositional. Would tell me to ‘go die in a hole’ if she didn’t like what I asked her to do.
     
    11 yo, gets braces. Ortho had her on prescription fluoride for about 6 months. Aggression and defiance eases and she is nice and kind again but OCD increases.
     
    13 yo, OCD issues have increased and are bad enough to see a psychiatrist. Started Prozac. Started very loud singing, very often. Extreme separation anxiety and constantly sitting on my lap hugging me and not wanting to get off. She started to develop lymphedema in both of her calves.
     
    14 yo, motor tics started. She can control them at school and out in public but she would explode when she got home. Started Abilify for the tics. Still loud singing. Got braces off. Stopped Abilify which did nothing except gain 30 pounds in two months without an increase in food intake. I see the LeRoy teenagers on the Today show. My daughter is like them. I had read something about the PANDAS connection a couple months earlier but it seemed confusing. I follow their story and am intrigued. My daughter never had diagnosed strep but would often go to sleep at night complaining of a bad sore throat but wake up in the morning and it was better. Went to our Kaiser HMO primary care Dr. to explain daughter’s condition and the possible PANDAS connection. Dr. said Kaiser does not believe in PANDAS but took throat swab and blood strep test. They were negative. They gave her the first dose of the HPV vaccine. Her arm was very sore and she couldn’t raise it for about a week after. Did not get the two follow-up doses. I’m at a loss on what to do.
     
    15 yo, loud singing turned into vocal tics, dog barking and gorilla sounds. She had dilated pupils all the time and she was always complaining she had to urinate too often. She has the PANDAS symptoms. We do one month of Azithromycin. She was much better after two weeks and then slowly got worse again. She said she loved taking the antibiotic because of the way it made her feel.
     
    May 2012, she is still getting worse. I call Dr. T. for help. We do lots of blood tests. Mycoplasma pneumonia IGG is off the chart. PANS suspected. Stopped Prozac which did nothing. Did 6 weeks of Clarithromycin. Improvement initially but then symptoms are back to where they were before. Lymphedema much worse. Slim thighs but calves look almost as big and the skin is very tight. September, did one month of Doxycycline. No improvement and got even worse than before it was started, in retrospect the dose was too low. She starts having violent rages. Tried Azithromycin again for two weeks. No improvement. I recorded her whole body complex motor tics and during playback noticed her eyes rolled back a lot. Told Kaiser doc and EEG was ordered and was normal, she didn’t tic during it. After Kaiser neurologist sees tic video, she orders MRI and prescribes clonidine. MRI is normal. Stopped chlonidine after one week, it made her worse. Sophomore year starts and she’s developing major attention issues when doing homework at night and the constant tic’g makes it even harder. It is taking her even longer to do homework, brush teeth, shower, get dressed, eat. Lymphedema is worse.
     
    October 2012, did a 5 day steroid burst. So much worse days 6-8. Better than before burst days 10-15 and then the worst ever after. I email Dr. T. and he replies that he is in the midst of the hurricane with no power.
     
    November 2012, I had noticed that eating glutamates and wheat really exacerbated her tics and rages so she started a glutamate and wheat free diet for about two weeks and got a little better. Then ate wheat and glutamates for 5 days over the Thanksgiving holiday and she got so much worse that even she noticed how bad it affected her. Started the diet again but this time it is not working as well. Did two weeks of Nystatin with the appropriate diet, no improvement. Started taking fluvoxamine for OCD, Kaiser psychiatrist ordered and it makes my husband happy that she is taking a psych med again. Slight improvement with OCD noticed but tics and attention issues seem worse. Rages are still bad. She says feels like she can never rest or be completely relaxed. She has been picking the skin around her nails during school and her fingers are raw and bloody. She keeps getting a sporadic bumpy rash on her arms and legs that goes away in a day. Bruxism/teeth grinding when sleeping is so bad she shreds her retainers and gets a mouth guard.
     
    December 2012, I email Dr. T. to let him know she’s not doing well and that I suspect that maybe even though she has never had any bowel/stomach issues with the antibiotics and she’s always taken probiotics, I suspect possible yeast issues and/or c-diff infection from all the antibiotic use. Dr. T. doesn’t reply. I know I need to call him instead but I don’t. Not sure how I would not sound like a desperate lunatic.
     
    I am desperate and search for a non-Kaiser doctor and via a Lyme training site find a local one who is an MD but also does integrative medicine. He examines her and he suspects hookworm or another parasite due to her lymphedema and orders only the Metametrix GI Effects stool panel. I’m concerned about heavy metals and yeast but he is not. The test results will take a few weeks to get and my daughter is not doing well. The OCD I can handle but when my 5’8” 15 year old motor and vocal tics uncontrollably, it breaks my heart. In desperation and after over 2 months without antibiotics, we started azithromycin and bactrim and after 10 days she had a remarkable improvement in her tics and attention span.
     
    January 2013, we have normal Blue Cross insurance. Adios Kaiser, I will not miss you. The GI Effects test results are back, only mild yeast. I tell the new Dr. about the antibiotics she started and her initial improvement but after 3 weeks she started backsliding. I also told him that when she was tested back in May for Lyme it was only the ELISA test. He orders the Igenix Western Blot. Last week it came back IGM positive for Lyme and we started Doxy. A good response but not great and added the Bactrim again and much better. Dr. suspects the Bactrim is hitting the co-infections. I also had my 18 yo DS tested and he is positive. I will post his symptoms another time. Both kids have a single C1298A MTHFR mutation. My husband and I will get tested and we have lots of symptoms but I think my kid’s Lyme is most likely congenital. Looking back now there were some infant/toddler symptoms that were overlooked. Igenix IGM is normally chronic Lyme. Before I had kids I pulled more engorged ticks out of my scalp than I can remember. It was a common occurrence in Arkansas. I feel so many emotions right now. Did my kids and are my kids really going through all of this pain because of me? I am glad we have a real PANS diagnosis but after watching Under Our Skin, the road ahead looks bumpy. Hopefully we will find an experienced LLMD in congenital, neurological Lyme. Again, I hope that every affected child in the world is freed of this insidious disease.
  11. Like
    HopeinHIM reacted to dasu in Tired-Tired-Tired   
    Very sad, but well put. It would be a good read for the naysayers if they would only read.
     
    I have I have nothing to add except that we are in similar straights. The kids are still mired in flares, exhausted, stressed out and watching all of our money fly away. Our bodies feel like they are going to break, we hardly get any time to care for ourselves. Our marriage is stressed but OK, but then we don't do anything normal couples do. We are isolated. The people that should be there for us - doctors, insurers, family, friends, church - are absent. They just bring the added burden of trying to "get them on board". There are so many that offer authoritative plans without following through - but are always looking for money.
  12. Like
    HopeinHIM got a reaction from MaryAW in Dr. Bouboulis- What to Expect?   
    As we moved through treatment, our youngest no longer shows allergies. He no longer uses any meds. Our oldest has been doing the shots along with treatment and he is having a ruff time. Their immune systems are already worn down so I really struggled with what to do. We ended up going very low and slow with him. It has been 8 months and see no improvement as of yet. As far as testing, we just removed all meds prayed and went for it. We got through OK! There are mixed opinions on treating allergies at the same time. My boys are perfect example s.
  13. Like
    HopeinHIM reacted to kim in 6 year old went bonkers as soon as we started Zith   
    HopeinHIM,
     
    I had mentioned this study on another thread recently.
     
    http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0101257
    Antibiotic Treatment Attenuates Behavioral and Neurochemical Changes Induced by Exposure of Rats to Group A Streptococcal Antigen
     
    The report of the type of reaction your neice had used to be chalked up to the dye in zithromax by some parents. It was said that it could be ordered dye free. Some parents said that helped. In addition to all of the other remarks for you to consider here, the above study points out something that I think is worth mentioning/discussing with Dr. T.
     
    Under
    Treatment with ampicillin (you can read about the details in the study) about 3/4 of the way through

     
    Both the control rats and the GAS rats were given various adjuvants such as complete Freunds adjuvant, heat killed mycobacteria h37RA, heat killed B pertussis and boosted later 2 +4 weeks. I think the control rats (no GAS antigen ) would have had a permeable BBB as did the GAS group. The control group had an increase in TH (tyrosine hydroxylase=precursor to DOPA) and D1 and D2 in the prefrontal cortex. I find that quite interesting and wonder if that could be a clue for some children who react negatively?
     
    In this study they used ampicillin ( B-lactam). Zithromax is a Macrolide, so I don't now if that would make a difference or not. For that matter the rats/kids might make a difference too, but still interesting!
  14. Like
    HopeinHIM got a reaction from nicklemama in Heartbroken--I feel like were losing ds, age 6   
    Now that I have stopped crying from reading your post, I can join in with these wise women. DO NOT GIVE UP!!. Your story was/is my story. Our son has PANS/Bart/Babasia. Many doctors and much $$ and finally we began to treat Bartinella and Lymes and he is coming alive again!! We began by treating just PANS/ cox socci. Labs said NO co infections or Lyme's so I moved on. One horrible year later I revisited the possibility of Co infections thanks to this forum. Our son can't detox so we go very low and slow on Rifampin. We have implemented lots of detox herbs along the way along with organic clean food and WATER!!! Certain children with specific genetic predispositions can not handle all the crud that is in our environment and food so they fall apart physically and psychiatrically AND (infections can push them over the edge). We were told by the best PANS docs and top ND's that Lyme's didn't seem like part of the picture. But then, one LLMD disagreed and encouraged us to treat. Our PAND doctor (who I still use for various reasons, still is NOT interested in the LYMES component)BUT I can tell you that my raging, OCD, mentally crippled child is returning. NO more raging and no more OCD. He is laughing again (thank God)He will tell me "Mom, my head is clearing and I am feeling like old me!!" Rowing Mom is giving you amazing information. Read and apply! Do not give up. Your boy is inside there and persevere until he returns. He is the child who wants to bike ride and canoe but inflammation has sabotaged his mind for now. Our 6 year old niece is manifesting the exact same symptoms as our son (your son) did and we are immediately investigating co infections. Not waiting on labs. During the 23andMe test we find that she has the same genetic mutations as our son. (detox issues, Methyl issues)
    For some children the steroid bursts and prophylactic anti B's hold them. However, Steroids can be very bad for PANS/Lyme's kids. This is a journey and no two children are the same. I have also discovered that NO doctor knows all . Each seems to have only a piece of the puzzle. It will be up to YOU to put it all together to bring him to the finish line!!
  15. Like
    HopeinHIM got a reaction from sf_mom in Heartbroken--I feel like were losing ds, age 6   
    Now that I have stopped crying from reading your post, I can join in with these wise women. DO NOT GIVE UP!!. Your story was/is my story. Our son has PANS/Bart/Babasia. Many doctors and much $$ and finally we began to treat Bartinella and Lymes and he is coming alive again!! We began by treating just PANS/ cox socci. Labs said NO co infections or Lyme's so I moved on. One horrible year later I revisited the possibility of Co infections thanks to this forum. Our son can't detox so we go very low and slow on Rifampin. We have implemented lots of detox herbs along the way along with organic clean food and WATER!!! Certain children with specific genetic predispositions can not handle all the crud that is in our environment and food so they fall apart physically and psychiatrically AND (infections can push them over the edge). We were told by the best PANS docs and top ND's that Lyme's didn't seem like part of the picture. But then, one LLMD disagreed and encouraged us to treat. Our PAND doctor (who I still use for various reasons, still is NOT interested in the LYMES component)BUT I can tell you that my raging, OCD, mentally crippled child is returning. NO more raging and no more OCD. He is laughing again (thank God)He will tell me "Mom, my head is clearing and I am feeling like old me!!" Rowing Mom is giving you amazing information. Read and apply! Do not give up. Your boy is inside there and persevere until he returns. He is the child who wants to bike ride and canoe but inflammation has sabotaged his mind for now. Our 6 year old niece is manifesting the exact same symptoms as our son (your son) did and we are immediately investigating co infections. Not waiting on labs. During the 23andMe test we find that she has the same genetic mutations as our son. (detox issues, Methyl issues)
    For some children the steroid bursts and prophylactic anti B's hold them. However, Steroids can be very bad for PANS/Lyme's kids. This is a journey and no two children are the same. I have also discovered that NO doctor knows all . Each seems to have only a piece of the puzzle. It will be up to YOU to put it all together to bring him to the finish line!!
  16. Like
    HopeinHIM reacted to rowingmom in Child seems to be healing but suddenly becoming Paranoid?   
    Your doctor should not be using rifampin monotherapy; doing so will lead quickly to bacterial resistance. It needs to be taken with another antibiotic, in our case biaxin - because DD13 is allergic to bactrim which is often used in combination with rifampin in the treatment of bartonella.
     
    http://en.wikipedia.org/wiki/Rifampicin
     
    In my opinion your DS is being undertreated and will continue to manifest psych symptoms until the infections are resolved. Rifampin does not treat babesia.
  17. Like
    HopeinHIM reacted to Surfmom in New Parents: Advice From the Trenches   
    My daughter has one of the most severe and drug-resistant cases of what falls under the big umbrella of a strep-induced autoimmune disorder that left her with severe neurological and significant joint involvement. For those who don't remember us, my daughter was an exceptional student and athlete, and world's happiest and easy child to raise - until the bottom fell out two years ago. In a matter of a days she suddenly and frighteningly developed Sydenham's chorea, tics, mutism, mood swings, joint pain and swelling. aversions, delusions, rage and host of other heart-breaking symptoms. It has been a tremendously challenging road and so as an unwilling seasoned veteran here is the advice I am giving to anyone who thinks their child has PANDAS, PANS, LYME or any other unusual/frustrating unnamed condition.
     
    1. Do NOT waste time. The first time you see symptoms that do not clear up permanently after a round of antibiotics, get real help. Any of the symptoms I have described indicate your child has neurological inflammation. For the majority of kids, this could mean your child has cross-reacting antibodies, that are attacking your child's healthy tissues. For many kids this could involve brain, heart or joint problems so you absolutely need to rule out any potential damage, especially heart involvement (this was the one potential result our daughter had). The longer you go, the more damage that can result and the harder it will be to treat. This means:
     
    2. Your child has a PHYSICAL disease with psychiatric symptoms resulting from inflammation so you need the right specialists. If your child has recurrent or ongoing flares after antibiotic treatment, and you are only seeing a psychiatrist or PANDAS doctor who has not done a full spectrum of physical diagnostics (MRI, heart ultrasound, tests for Lyme, allergies, inflammatory markers, titers, etc.) then ask your pediatrician for a pediatric neurologist referral. Remember this is PHYSICAL. I can't emphasize this enough: If you can, go see a neurologist and an immunologist.
     
    3. It's not in a name, so don't get stuck with a label. I know we all want that relief/satisfaction of saying my child has "PANDAS" or some other condition, but that can predispose physicians to start treating before a real diagnosis and plan is put forth. For example, we ran off immediately to USF for PANDAS evaluation, at which they gave us some surveys, talked to us and then tossed us some antibiotics with a diagnosis of PANDAS. Not one physical diagnostic test was done and we were foolish to go along with that. In time, they would have ramped up to IVIG, etc....but I would never have known that my daughter could have had heart damage. For those wanting a name., honestly, ( For the math-minded I think we are talking about a spectrum of autoimmune diseases that could be plotted on a coordinate plane of X and symptoms on Y, to find that our kids are scattered all over the place) I think there are as many names for these diseases as there are kids. Just call it, "Insert your child's name here" disease. I am kidding - but also not. The many presentations of these diseases explain why they sound akin to others (like Lupus) and yet different when we talk to each other here. Also, never mention diagnosis to insurance providers. Many are looking for reasons to reject claims so let your doctors and insurance companies play the coding game.
     
    4. Take meticulous notes regarding symptoms.Take pictures and video even at bad times. Trust me, you will forget. Look for subtle things like handwriting and appetite changes, sleeping changes, expression of unusual ideas, reduced speech. When first met our neurologist, I came in not with a disease name but a table of symptoms, date of onset, severity and frequency. I wanted them to diagnose without predisposition.
    5. Don't worry about the bandaids - yet. I know a lot of us sweat everything from glutens, to certain amino acids to micronutrients. Until you rule out allergies, known genetic deficiencies....don't lie awake at night and wonder whether or not you are missing some esoteric piece of the puzzle. Feed your child well, make sure they are getting plenty of vitamin D (low is usually indicative of a chronic inflammatory process), and as many nutrients as they can from real food. You are a good parent, and while the little things will help along with a healthy lifestyle, there is no magic pill. Proper diagnostics will eliminate a lot of concern about allergies and root causes so you don't waste a fortune in time and money trying this and that. We are desperate and vulnerable so read everything with a critical eye.
     
    6. Trust your gut and assert yourself. I went to FOUR doctors and had three ER visits with my daughter, shaking my head and respectfully telling them we were moving on when they told me she was probably just depressed. WRONG. (Tangents: I think our world, present and past is full of kids who are under-diagnosed for physical problems, and there is NO difference between mental health and health. It's just health).
     
    7. Your child is not your child. There is no way that sweet baby of yours would ever do the things he/she is doing if he/she was healthy. Easier said than done - but do not take it personally. That said, reasonable consequences apply. If your child is having severe outbursts, you have to remind yourself: THIS IS THE DISEASE. Say it like a mantra if you have to.
     
    8. Get healthy and fit. I have had to care for my daughter for two years 24/7. Most of you will not be like that. It's going to try your body, mind and spirit. It's going to be hard so you need to be battle prepared. At times, you are going to be scared, angry, tired, frustrated and lonely so you are going to need to be at your best like no other time in your life. Get sleep and don't worry if there are fingerprints on the appliances and the car needs vacuuming. My family has learned that no matter what, I am taking an hour a day to run or surf.
     
    9. Get brave and tough.. People closest to you are going to hurt your feelings, and give you unwanted advice. Head them off at the pass and tell them that you are on top of all the research and protocols (you need to be), that this is going to be stressful, that you are so grateful for their support, but that the things you can't have them do include _______. For me, it was advice on how to parent...like when my daughter would be defiant, or when I chose to keep her out of the public eye when her tics and chorea were severe. Doing that up front will save all of you a lot of misunderstandings down the road. The "Loving but Uninformed" in your life will give you some bizarre advice at times; take it in the spirit in which they meant it. At the same time, get soft. For me, this meant learning to accept help from other people. I have always prided myself in being able to be self-reliant, being able to do it all, but with this spectrum of disease - forget it. I have learned that letting people help is not a sign of weakness, but an acceptance of kindness that can really make a difference. The people around you who really care want to help. Let them.
     
    10. Slow down the clock. You aren't going to get it all done. At times you are going to be late to school. Sometimes you won't get to a place at all. You might even miss a major life event like a close friend's wedding, or as it is in my case...your chid might even miss a year of school. It will work out.
     
    11. Read it all, get informed, stay on top of it...and then walk away at times. You cannot live and breathe this everyday without becoming obsessed in an unhealthy way. My daughter loathes it that I pick up on every tic, and my husband got tired of my talking through the study results in the third standard deviation for the sample size of 12 for the methylation of a certain gene expression (whoa, sexy AND romantic) when we crawled into bed at night. (The main reason I come and go from this website .)
     
    12. Go out at a minimum of twice a month for the evening. The only rule: Thou shall not talk about thy child or thy child's disease. Also keep something out there a month or two away to look forward to...beach, trip to parents, buying a new sofa, camping trip. Finally, don't forget the healthy siblings and your SO. As much of a nut as I am about healthy eating, sometimes a little love and acknowledgement is as easy as a box of walnut brownies that can be mixed and tossed in the oven in two minutes...with a PostIt note alongside.
     
    After two years of IVIG, Cellcept, Rixtuximab and Cytoxan, we are finally knocking down the world's most persistent immune system and our daughter is slowly getting better. Chorea is gone, tics gone, OCD gone, moods better, tremors gone, ataxia gone, mutism gone, catatonia gone, sleep patterns good, aversions gone, eating well, engaging with the family, smiling, laughing and has some quality of life.
     
    Long story short: Treat physically and if a child like ours (who is probably one of a handful of the most profound expressions ever on this disease spectrum) can get fully back on the happy and healthy track - yours will too.
     
    I am not editing. I used to. I don't anymore. See? LOL
     
    (Ok, confession... I came back and read this AM, and gently tweaked the typos).
     
    A thousand blessings your way!
  18. Like
    HopeinHIM reacted to airial95 in Happy 5th PANDAversary to me!   
    It’s that time of year again, our PANDAversary! It has been 5 years today since we have been on this journey.
     
    It was 5 years ago today that our doctor told us about PANDAS.
     
    It was 5 years ago today that he went against what little was known about PANDAS at the time and suggested we try 30 days of antibiotics for our 26 month old son rather than sending us to a psychiatrist to medicate him, even though he was “too young” according to the diagnostic criteria.
     
    It was 5 years ago today that I looked at my husband upon leaving the doctor’s office and told him we needed to find a new doctor because “if he thinks some penicillin is going to bring our son back from being the spawn of Satan – he’s lost his mind.”
    Turns out, he wasn’t out of his mind.
     
    Every year, on our PANDAversary, I’ve shared my thoughts and reflections of the previous year. I’ve found it helpful for me to reflect on how far we have come on this journey. After reading through my previous reflections (http://latitudes.org/forums/index.php?showtopic=22212&hl=) I realized this year was different.
     
    After 5 years, I find I’m no longer even thinking about “Life without PANDAS”.
     
    After 5 years, I’m finally just enjoying living LIFE.
     
    Are we fully recovered? Nope. Not even close.
     
    There are still flares.
     
    There are still way more meds than any kid should have to deal with.
     
    There are still fights with the school.
     
    There are still lots of doctors’ appointments, blood draws, and hassles with insurance.
     
    There are still bad days.
     
    But there’s also LIFE.
     
    There are sleepovers with friends.
     
    There are football games.
     
    There are family trips to the beach.
     
    There are lazy snuggly mornings curled up binge watching Netflix.
     
    There are even some times when they’d rather be with friends than with Mommy.
     
    There is time for Mommy to do yoga, read a book, or have a beer with friends (although still not enough!!)
     
    There’s logging onto Facebook JUST to catch up with old friends! (Who knew??)
     
    This year, we decided to stop waiting to live our lives until the PANDAS is gone, we decided to start living the lives we have -
    now.
     
    Have we given up the fight? Nope. Not even close.
     
    The fight will continue, just as it always has.
     
    But we are not putting our lives on hold anymore for PANDAS.
     
    Life is too short.
     
    We may not be living the lives we thought we would before PANDAS became our reality, but we are making the most of what we have.
     
    Do our sleepovers with friends look like something out of Norman Rockwell? Nope. Not even close.
     
    Do our football games always end with having snacks with the team instead of tears and a tantrum? Nope, Not even close.
     
    Do our family trips to the beach involve a lot more crazy than your typical family? That would be an understatement!
     
    But through it all, we are finding our own happiness and creating memories that involve more than anger, fear and tears.
     
    God has given us so many blessings, and we decided it was time to start appreciating them!
     
    And yes, it took me 5 years to figure that out.
     
    It took me 5 years to grieve for the loss of the life I had imagined, and to fully embrace the one we have.
     
    Looking back on my previous reflections, I wish I would’ve gotten to this place sooner, but I realize I needed to get to this place on my own pace.
     
    I also realize that the all of the hard work and effort into helping my kids has played a big role in getting to the place we are now.
     
    Will I still be in this same place next year? Only time will tell, but until then, I’m going to try to make the best of the crazy, unpredictable life that I have. I’ll take each day as it comes, cherishing the good days, and keeping perspective on the bad ones.
     
    Folks are often asking for stories of hope and recovery. I can’t speak to full recovery, but I can share our story of hope through the chaos.
  19. Like
    HopeinHIM reacted to nicklemama in Is it just part of PANS/LYMES that the children refuse to out much?   
    The reactions to meds is herxing. Bart is notorious for the herx and the foot symptoms. Detoxing is very important when treating Lyme and coinfections. It helps the herxing.
  20. Like
    HopeinHIM got a reaction from BeeRae22 in This is a family affliction...ugh   
    Oh momslove,
    I am so sorry. I too struggle with a similar situation. Such strain on the marriage. My husband understands only to a certain extent but then holds Ds up to standards he can't possibly fulfill. I am happy at times that our child showers and brushes teeth or joins us for dinner. I see that he is trying and suffering to just survive sometimes. This causes serious mental struggles. My H just wants everything back to normal and wants to push things to get there. Its counter productive for sure. I do the best I can to educate and keep him apprised our Ds illness and that is all I can do. It's all so complicated that even many doctors don't get it!!!! This will get better so we must all just hang in there and be strong for our beautiful afflicted children. Who could possibly understand this world we are in. Persevere!
  21. Like
    HopeinHIM reacted to BeeRae22 in Desperate mom reflection   
    One year ago tonight, on New Year's Eve, I was sitting in this exact same spot, in my bed with the lights off and the silent tv on.... A desperate mother scouring the Internet trying to figure out what was happening to my daughter.
     
    She had been fine, until mid October. Then she stopped eating. She began raging. Hitting, scratching, kicking. She hated school. She was depressed. She picked her skin raw. She cried out in her sleep. She was afraid all the time. She was starving.
     
    I was terrified.
     
    Some time after midnight I came across some information about Pandas. A big, bright lightbulb went off. This was it!!! I knew instantly.
     
    We've come a long way since then. Dd is finally eating again. She is flairing this month from a cold, but I now know that she'll get through it. We're haven't reached the end of this road, but we will.... One day.
     
    I am not sad to see 2014 go. This has been the most challenging, difficult and heartbreaking years of my life. My heart goes out to anyone who might be reading this, because that means that you've been touched by this awful disease in some way. May your new year bring progress, health, love and peace to you and your families. Thank you for being there. God Bless.
  22. Like
    HopeinHIM got a reaction from momslove in This is a family affliction...ugh   
    Oh momslove,
    I am so sorry. I too struggle with a similar situation. Such strain on the marriage. My husband understands only to a certain extent but then holds Ds up to standards he can't possibly fulfill. I am happy at times that our child showers and brushes teeth or joins us for dinner. I see that he is trying and suffering to just survive sometimes. This causes serious mental struggles. My H just wants everything back to normal and wants to push things to get there. Its counter productive for sure. I do the best I can to educate and keep him apprised our Ds illness and that is all I can do. It's all so complicated that even many doctors don't get it!!!! This will get better so we must all just hang in there and be strong for our beautiful afflicted children. Who could possibly understand this world we are in. Persevere!
  23. Like
    HopeinHIM reacted to Mayzoo in Pans/Bart child always tired and weak!   
    My kiddos Coxsackie A titers went from 1:160 (IGM) to negative in five months on our herbal antiviral program. We are using Steven Buhner's EBV protocol. Her HHV-6 also dropped from 10.71 to 4.54 in the same five months. Her energy level and overall behaviours have improved drastically.
  24. Like
    HopeinHIM reacted to sf_mom in Pans/Bart child always tired and weak!   
    I definitely feel for your situation as recovery from TBI/PANS is not easy. Here are some ideas or things to look into if you haven't
    B-12 and zinc/copper ratios Iron levels B-12 deficiencies can lead to lack of iron hence anemia causing fatigue. It seems like your son is not detoxing, might be under oxidative stress from the treatment protocols or you are missing something (co-infection of 'BLO' babesia like organism, mold, viruses, etc).
     
    Vitamin/minerals levels can be checked via hair sample, blood serum or intercellular testing. It is important to know that these vitamins are being utilized by the body. SpectraCell checks the inner white blood cell for utilization of vitamins/minerals/amino acids, etc. You can give tons of supplements however if their gut is all mess up they may not be absorbing or utilizing any of it. When the zinc to copper ratios are off and copper is on the high side it can indicate heavy metals issue. Here is what the SpectraCell test covers.
     
    http://www.spectracell.com/patients/patient-micronutrient-testing/
     
    Mold will also cause the fatigue you describe. Often those with an inability to detox biotoxin's (toxin from Lyme die-off) or mold toxin's make very little headway with antibiotic therapies. HLA marker will provide you with your son's genetic ability to detox these toxin's. Shoemaker Panel will help to confirm if its mold.
     
    AND of course viruses present real problems with fatigue. For us, HD IV C has been extremely helpful in treating viral load and mitigating fatigue.
  25. Like
    HopeinHIM reacted to momslove in PANS/LYMES knowlegable therapist for child in NJ   
    My experience/perspective--for what it's worth...
     
    My DD has OCD secondary to PANS. We need doctors and therapists. We are working with doctors who seem to know what they are doing. We have had difficulty finding therapists who are knowledgable and skilled with cognitive behavior therapy, particularly ERP, which is the research or evidence based approach to dealing with OCD. We ended up going to the Mayo Clinic in Rochester, MN for an intensive week of CBT/ERP. They were kind, compassionate, and highly skilled at this. When I inquired about the therapy, I was very clear about DD's medical diagnosis AND about our reasons for seeking their services--for the therapy, not medical advise. We had to go first for a psych eval and of course, there was some discussion, but we moved on. Mayo does not "support a diagnosis of PANDAS, but will treat the symptoms" according to staff in the neurology department, BUT they are awesome in providing treatment for OCD in another department.
     
    Be clear about what you want from a therapist and ask for that. In our case, we wanted CBT/ERP. It did not matter what they thought about PANDAS/PANS or any other possible cause of the OCD. If you want something else, that's ok, just be clear about it.
     
    My weakly formed analogy is a sports analogy. The opponents include strep, myco. pneum., coxsackie, OCD, lyme, bartonella, inflammation, etc. My DD's team includes herself, myself, and DH. I also serve as general manager, selecting coaches for offense, defense, and special teams. Each coach needs to do his/her job and not worry much about what the other coaches are doing.
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