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Everything posted by coco

  1. When we first did ivig with dr k in Chicago three years ago he urged us to wait to do another so quickly. He and other wise moms before me coached me and said it can take A YEAR for the brain to heal. Not what I wanted to hear. In the absence of a stair step recovery and flares of unbearable behavior I pushed for more ivig. In hindsight I cannot say that was the answer. It was only until we did our last one 15 months ago that I see holding improvements. For us, TIME was our friend. And back then I was convinced it was my enemy and it was a very tough road indeed. There's nothing worse than when your child is spiraling and you are grasping for more help. Sometimes more is not better, and continuing to support their immune systems, gut healing, detoxing, etc can further contribute to their healing. I know each situation is different, but when you're inthe eye of the storm it is never clear what to do next. Best wishes.
  2. Nancy, just said a prayer for you. For what it's worth, my neuro who treated my Lyme said that doxy could cause suicidal thoughts, and I know your daughter has had quite a bit of it in the recent weeks. Best of luck. The despair is excruciating.
  3. Nancy, what did your doctor say about trying the iv lexafloxicin?? That is used for critical brain inflammation, I know there is a slight risk of use to young kids, but it might be worth another look for your dd. good luck.
  4. White plains/westchester ny is the closest and easiest by far, but not every carrier offers service. Worth a check.
  5. As I was getting dressed this morning I heard a snippet on the news about vaccines...something like, "new information reveals that childhood vaccines are not doing what they intended...". Didn't catch the piece. If anyone else did, I am anxious to hear (probably what we have already hypothesized!) but maybe it's the start of something.
  6. LLM and MomOCD, Soooooo well written and mirrors my sentiments exactly. I have yet to speak to ANY doctor with regards to Pandas, Lyme, co-infections, vaccinations, supplementation, viruses, etc., who have got it all figured out for each and every patient. And these are good people. The nuances and complexities of these children's journey of healing is individual, and it does take a tremendous amount of research, thesis-style, to try to spin the straw into gold. And although we are patient enough to be safe, we are fully aware of the ticking clock of childhood and of some aperture closing...so we are bold, because we feel we have no other choice.
  7. Nancy, regarding pandas kids having "too much dopamine" I think I remember Dr K(?) a while back telling us that is was "dysregulated" dopamine that was the problem. Perhaps that is why SSRI's are most difficult.
  8. Nancy, thank you for your updates. When you were talking about your daughter feeling "strong" I could hear YOU being strong as well and it felt so good to read that and feel that strength and empowerment in your voice. Healing is so hard, and you reminded me of Scarlett O'Hara when she declared to God and to herself, "I will never be hungry again!" I am deflated to read the IV had to be stopped. But she made it close to the finish line. She has a lot of very strong medicine in her, her body has taken a beating. Perhaps she she is herxing on it in addition to Luvox back and forth? I know you will be victorious, Nancy!
  9. Yay Nancy! Great news! May I ask the dosage of IV doxy? How long does the infusion take...30 minutes start to finish?
  10. Nancy, this is fantastic! So great great great to hear this! And such a quickly noticeable difference! Please keep us posted as you progress! Right behind ya, lady! ☺
  11. Crying for you!! Tears of happiness! LOVE IT!!👯👯👯👯👯 happy dance!
  12. I was talking about IV Levafloxicin, as was used in the study. I think it depends on if it is determined to be non-severe, severe, and pseudomonas risk. Now, where "chronic Asymptomatic other than neurological" falls I do not have a clue. Especially as it refers to pandas. I would think you go up the chain of strength until relief is seen?? But try to save the biggest guns for life-threatening circumstances. But if neurological is involved it must cross the BBB, IMO.
  13. Ptcgirl, what were your dds IGM/IGG mycop numbers? You need to watch the trend with IGG. IGM should drop as IGG rises, indicating that your child recently had mycop. Over several months the IGG titer will rise and then should fall. Chronic mycop IGG titers rise, fall slightly, rise again, type of pattern. The child can be Asymptomatic other than neurological. For those children it has been postulated that macrolides abx are not strong enough to reach the cerebrospinal fluid and the brain. That is perhaps why even long-term biaxin or augmentin is not effective. That is the case with my dd. I like the idea of the right abx given via IV, bypassing metabolization in the gut over a couple of weeks. IV comes with its own set of concerns, etc, but I would be willing to do if that is what can destroy this SOB. I am concerned about levofloxacin potential side effects, but I am even more concerned about not ever treating this right. I wish the answers were more definitive. Nancy, please let us know your doctor's thoughts.
  14. Nancy, go back and read a thread a few pages back entitled "mycoplasma chronically high IGG" from two weeks ago. Talks about a very recent research paper which discusses the use of it for mycoplasma in children, two weeks, via IV.
  15. Oh, forgot to ask if you are doing it at home or in doc's office?
  16. Best of luck nancy! Did you maybe think of trying IV levofloxacin rather than doxy? What symptoms does your child still have?
  17. Dr Adam Pearl in Trumbull. He is excellent. Does not know pandas, but open, eager, smart and great bedside manner..
  18. Laura, I appreciate this research, as we are in the same wet boat. I keep thinking that once she is clear of underlying infection this will clear up as well, but the lazy comfort factor surely must be a player in this. So many things have improved for our dd, I am encouraged this will as well. But I think I gotta nudge this along more. When she was first put on biaxin for mycop she was dry 9 out of ten nights for a stretch, but that was short-lived. We are still pursing lexafloxicin once Dr T gives the high sign. Right now I am in wait and push mode with him. Thanks again for sharing this.
  19. Thanks for posting this. I thought I was past this one. Eesh. Had dd tested and dr b said, "she's fine.". But this post forced me to relook and she is heterozygous A1298C only. I found the below link on an MTHFR website for any of those who have kids like mine. I have been giving her methyl folate, titrating very slowly over 3 weeks. We are at about 400mcg as of Saturday. Coincidentially, she has had 2 dry nights in the last two days, and she has also struggled with this her since early childhood. I think she seems less anxious, but it could be all the other stuff we are doing as well. Would those who know more think I should continue supplementing w Methy folate? She also takes sublingual b12. ---------------------------- There is little known about the A1298C MTHFR mutation. Or so it seems. Research seems to ignore it almost completely while the C677T MTHFR mutation gets all the attention and glory. For those who have the A1298C MTHFR mutation, this is frustrating. Symptoms exist and doctors are saying there is no correlation between the MTHFR A1298C mutation and your symptoms – right? I’d like to prove them wrong – at least for the symptoms which do correlate with the A1298C MTHFR mutation. Lets’ get started. The MTHFR A1298C mutation can be serious – especially if you are either: Homozygous A1298C MTHFR mutation Compound heterozgous A1298C + C677T MTHFR mutation My current stance on the heterozygous MTHFR A1298C mutation is that it is very common and does not seem to pose too much concern unless there are other methylation or cytochrome mutations present. Obviously, if one leads a lifestyle which is unhealthy (smoking, high stress, toxic exposures) and consumes an unhealthy diet (refined carbs, processed meats, saturated fats), then having a heterozygous A1298C mutation may contribute to symptoms of cardiovascular disease, depression, fibromyalgia and others. Ever hear this?: Your homocysteine levels are fine. You’ve nothing to worry about. I know many doctors evaluate homocysteine only when it comes to MTHFR mutations. This is absolutely incorrect. Those with A1298C MTHFR mutations do not display elevated homocysteine unless they are combined with C677T. Even when combined with C677T MTHFR mutations, the A1298C types still do not tend to have very elevated homocysteine. Why is this? The MTHFR enzyme appears to contribute function in both two major pathways: BH4 and Methylation. The area which the A1298C MTHFR mutation works appears to disrupt function in the BH4 cycle. The BH4 cycle is absolutely critical for these various functions: assists the breakdown of phenylalanine helps form these neurotransmitters: Serotonin Melatonin Dopamine Norepinephrine (noradrenaline) Epinephrine (adrenaline) cofactor to produce Nitric Oxide (NO) assists breakdown of ammonia If your BH4 cycle is not working properly due to an A1298C MTHFR mutation, you are definitely going to be expressing some symptoms either mentally, emotionally or physically – or – all together. Once you understand the biochemical effects the A1298C MTHFR mutation causes, it becomes easy to identify possible problems. I am going to list possible symptoms, signs and conditions associated with A1298C MTHFR mutations. Keep in mind this is not a comprehensive list. I will add to it as I think of more (or you inform me of ones that I have omitted). Possible symptoms associated with A1298C MTHFR mutations: hypertension delayed speech muscle pain insomnia irritable bowel syndrome fibromyalgia chronic fatigue syndrome hand tremor memory loss headaches brain fog Possible signs associated with A1298C MTHFR Mutations: elevated ammonia levels decreased dopamine decrease serotonin decreased epinephrine and norepinephrine decreased nitric oxide elevated blood pressure muscle tenderness ulcers pre-eclampsia Possible conditions associated with A1298C MTHFR mutations: fibromyalgia chronic fatigue syndrome autism depression insomnia ADD/ADHD irritable bowel syndrome inflammatory bowel syndrome erectile dysfunction migraine Raynaud’s cancer Alzheimer’s Parkinson’s recurrent miscarriages There are certain dietary, lifestyle and supplemental recommendations that help reduce the effects of the A1298C MTHFR mutation. That is well beyond the scope of this article. There are a few nuances making it difficult to simply give flat recommendations for all who live with the A1298C MTHFR mutation. Remember, if you are homozygous A1298C or compound heterozygous MTHFR, the likelihood of your family members also having MTHFR mutations is very high. Get them tested! For now, I hope this is useful for you and has shed some light into your situation. Please do post questions, thoughts and comments below – and share this with your friends and family. Please Help Spread the Word!
  20. I asked both dr b and dr t about amentadine, dr b did not offer too much, but dr t said it was used quite often in brain injury, and thought positively about it. Our conversation moved onto other things and I forgot to close the loop on that one. Next time I talk to him I will revisit.
  21. Pyroluriatesting.com. By direct access health. It's a green backgrounded website. Go to the menu on the left, find pyroluria test, then kryptarole test. It is $80 and they will send you a urine collection test kit. Complete it and mail it back (I believe it can be mailed mon-wed for specimen purposes) all easy instructions are included. Within a week you will get labs emailed to you along with ranges, results, and there is a clinician available to speak to if you have questiions. You do not need any doctor's signature for this
  22. Dr T ran: Complete CBC Vit D Ferritin Total IGG/IGA Thyroid free t3 and t4 Streptoenzyme ASO DNAS Mycoplasma IGG/IGM Amino acids ANA Histamine Parvo EBV HSV 1 Lyme panel Lyme coinfections I have a kit for some genetic testing that we are considering. Also going to to NMDA receptor encephalitis which is a separate blood draw and mailing to Spain through univ of PA. Might as well rule it out. I think that's it. I just took her this morning and am going from memory. We did do pyroluria and MTHFR and that was negative.
  23. We had our appt today with neuro and I presented the abstract and discussed the various options for treating mycop. After presenting daughters IGG/IGM history, he concurred that we were dealing with chronic mycop. Asymptomatic other than neurological/pandas. This can be due to a dysregulated immune system and/or the mycop in an of itself. 10% of all mycop affects the brain. I told him we have been on augmentin, zithro, biaxin, minocin without lasting conditions. He then suggested cipro. I wasnt against cipro, but how about we try exactly what Was done in the study? I am so done with "maybe try this and see first" and think I'd like to follow the EXACT recipe. Doctor was enthusiastic 😊 about this research paper and he went to purchase and download the entire report then and there. I believe he knew one of the doctors and was impressed with the reputation of the group doing this research. As far as I can tell, there is no other research on this. In brief, 5 children with mycop were treated in ER with macrolides. All failed to respond within several days. The prevailing thought seemed to be if you don't see marked improvement in the first several days, you are not going to see more improvement in subsequent days. EEGs showed slow frontal lobe activity among other symptoms. Macrolides were stopped and IV levofloxacin was administered at 25g per kilo for 2 weeks. All symptoms abated and normal EEGs returned. There is no research to determine if levofloxacin can irradicate long term chronic mycop, but there is no reason to believe it can't. Whether or not normal neuro functioning can occur is the million dollar question, especially for those kids who have missed developmental milestones and permanent neurological damage results. I am personally a big believer in neuroplasticity, but that's another thread...hope has brought me this far! In summary, levofloxacin has a good safety record. There was a concern that it caused muscle/tendon lesions and was not recommended for growing children, but that was 15 years ago and is thought to be quite safe today. I would recommend you read the research. We are running additional labs and the doctor will review the research in detail, but as of today he is on board with giving it a shot. I am sorry the link I posted does not work. I purchased the article from my iPhone (don't even open the laptop anymore) and only had 24-hour access. It wouldn't allow me to do some functions from the iPhone and I ran out of time to play with it anymore. However, I have the hard copy full article today and my husband has scanned it into his computer, so I will be able to email it to anyone who would like it. Just pm me. I hope this becomes an answer for so many of us.
  24. So wonderful! I can see your proud smile!! Enjoy this honor with your family!!🌟
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