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Momwithacause

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About Momwithacause

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  • Birthday February 10

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    Texas
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    I have a son who is 3 & a half, he has PANS, his twin brother does not have it. Interestingly he DID get bitten by a tick when he was 12 months of age. He does respond to antibiotics, but is not able to stay on antibiotic treatment due to candida control issues. My interests are PANS treatment, raising healthy kids, health, fitness, happiness, & family stuff
  1. Throwing things?

    Thank you mayzoo. We are really missing that socialization piece. I have heard people comment on Respen-A doing just that, facilitating in ones own oxytocin by decreasing the over supply of serotonin, resulting in more communication & socialization. I am trying not to do to work on too many treatments at the same time. But this may be next when we are finished with human gamagobulin.
  2. I need this groups help on a topic I feel like autism and PANS may be one in the same ,,,, I have heard of other doctors thinking this too that classic PANS is an occurrence after age three, & my sons situation is before he was three with his tick bite when he was a baby.my son is now almost 4 & has a twin with typical chattery development..... We are doing oral human gamagobulin for 2 months and starting our 3rd month we now have good speech but very little desire to be social or use language in a back fourth receptive way, very little desire to socialize with his brother. We had a process of getting rid of candida overgrowth and use probiotics & Nystatin to keep it away. The funny thing is I was holding a friend of mine's little girl at a birthday party on Saturday & at 11 months of age she was attempting to have a conversation with me, it showed me something I had NOT thought about in a while, which is ....just how young the human desire to communicate can be My question is: Now trying to move forward to get receptive language and socialization, has anyone tried oxytocin or Respen-a? We will continue the oral hg , but I am just trying to see what others have done in this situation, thinking of the future. Thanks
  3. B-12 shots

    Yes we have been doing B-12 injections for 6 months. It was the first thing to bring my son's memory back. Which allowed him to learn & retain knowledge. At some points we would have too much hyperactivity, when that happened we went to every third day. Now we are back to every other day because we see a little more following simple instructions (my son is 4 and has a twin who has typical development)
  4. Throwing things?

    My son is almost 4 and has PANS ....most likely Lyme, he was bitten by a tick when he was a baby ( we used to LOVE the great outdoors) anyway, & we spent the day in the hospital because they wanted to make sure it was not a poisonous snake bite. Recently I had facial palsy for 2 months & a fever so now I am being blood tested for Lyme also, I now am a fan of the great indoors. That's our history. Iam not on here very much, I do a lot of research at night when my kids are sleeping. My son was throwing his iPad when he could not get to a new program like going from ABC Mouse to Super Why Spelling Fair. I did not want to take it away from him because he has learned how to be very gentle, I remind him of the word gentle & he now slows down & laughs a little. So, when he would throw it , I would get on his level and say. "Gentle, gentle, this is your iPad, no throwing it or I take it. " I would explain this to him three times, then hand it back and show him how to navigate back & fourth or if a learning program is way over his head I do it with him,,,,, if he can't calm on that program after 20 minutes I put him on a program that he is more used to. BUT now his patience for new learning has really gone way up lately I need this groups help on a topic I feel like autism and PANS may be one in the same ,,,, I have heard of other doctors thinking this too that classic PANS is an occurrence after age three, & my sons situation is before he was three with his tick bite when he was a baby. We are doing oral human gamagobulin for 2 months and starting our 3 month we now have good speech but very little desire to be social or use language in a back fourth receptive way. Maybe this will come? Does anyone have this situation? And has anyone tried oxytocin or Respen-a? We will continue the oral hg , but I am just trying to see what others have done in this situation.
  5. Any info on Dr Rao in Plano?

    I am in Texas too! In the DFW area and just watched the Lyme video posted by another member. And my husband & I have just realized we were at the hospital with our son for three hours because of a bite he had when he was 18 months of age (that was 2 years ago) the bite was sooo strange looking it was a huge red welt with a circle all the way around it an inch outward. It was so odd that we were afraid he had gotten bitten by a small snake. We were given Tevan (STRONG antibiotic cream) and told that it was most likely a spider or a tick but they were not sure. So I looked up tick bite last night & it is a red welt with a red circle around it. I handed the computer to my hubby & he said "Oh man, that was it" We never even thought of Lyme disease becasue until yesterday I thought it was only in the North East part of the US ....I had never heard of anyone here in Texas mention Lyme disease. So I then looked up Lyme disease in Texas & many Texas Lyme disease sites came up saying that it is becoming an epidemic here in Texas. My son has been diagnoses with PANS but the pathogen had not been found. He is cured when on anitbiotics (Cefdinir) BUT then ends up with an extremely bad YEAST infection as soon as the time for Diflucan ends. Nysatin & probiotcs dont do the trick when he is on antibiotics. Then he regresses when the antibiotc round is over. We have done this twice with our DAN doctor. I want to see Dr. Rao & get him tested for Lyme & go fourth with IVIG since we are not able to maintain intestinal health on antibiotics, My DAN said that IVIG would be done by an Immunologist & I notice that Dr. Rao is an Immunologist. Thank you Texas members for sharing this info on Dr. Rao, I was not finding info on him. Also please watch this video (it's in french with subtitles and the Dr. in the video is Dr. Luc Montaganier- Nobel Prize winner in medicine. https://www.youtube.com/watch?v=yOno_2m_8LY here is the video!
  6. Yeast...go off abx to treat?

    Hi Frikfrak: I just posted that we may be treating with ORAL IG instead of Abx because of a serious yeast battle that my son has had for 2 years. He is 3.5 years old & partially verbal but not converstaional with abx. We can not keep him on abx because of this bad yeast problem so we are thinking that Oral IG or IVIG will end up being the treatment. When my son was on abx he had to have diflucan. Off antibiotics what works for us is Nystatin, Sacchamores Balardii (yeast that eats yeast but does not colonize& gets pooped out) & Fivelac have been our daily routine! works like a charm unless on abx
  7. My doctor wants us to try Oral IG. It is the IVIG used but not with needles, We are told to give him a childs does of Pepsid to stop stomach acid and the oral amount is small & given every other day for many months. It is expensive $600. a month and I am fully aware of that. Background: My son is 3.5yrs old, and is in & out of being with us.He has some OCD, it used to be EXTREME. He talks some but not conversationally. He did 20 days of Cefdinir 2 different times. On both occasions he did speak conversationally. And permanently lost some of his worst OCD & separation anxiety symptoms. It was amazing!!! So his conversational speech & socialness did go awa when we stopped the Cefdinir. He has a bit of a yeast Candida battle going on since he was a baby & so we could not keep him on long term antibiotics. I give him Sacchamoyers Ballardii & FiveLac & Nystatin to help that battle and that does work BUT it is not enough when he is on antibiotics. and I am nervous about long term antibiotics with long term Fluconizole/Diflucan. IS that a true concern? The Candida problem is reason we are thinking very seriously about the Oral IG because if he had to be on antibiotics for a year or two I think it is not recommended to be on Diflucan that long. I saw a post from doctor McChandless saying ORAL IG works well for some kids. Are there any families out there that have had experience with Oral IG, Please let me know!!! Thanks,
  8. Help with PANS

    sf_mom maybe I am where you were 3 years ago? I am learning as I go. Neglase score I do not know. I am intreged by GcMAF am wondering if the gains are permanent or if they slip back. I can't seem to find many parental testimonials on this just 2. To answer your question he is on diflucan/ fluconazole & omnifer/cefdinir because he has had an ongoing battle with yeast/candida since his toddler diarrhea at 12 months old ,,, so we cannot give omnifer/ cefdinir without fluconazole or we end up with a yeast nightmare ... My DAN cycles the antibiotic treatment, some of his patients if young enough possibly get better after a certain amount of cycles. I know we started with an immune deficiency because a mosquito bite used to some times end up with us at the hospital , but not lately thank god. I hope your children are doing great, I'm sure you have been through quite a bit. after a cycle it takes a while for his OCD, Seperation anxiety & loss of language to occur. That really is the reason I ask you & this group, I know this group is knowledgable about PANS & PANDAS if it keeps reoccurring do you go do IVIG. What are your thoughts on fecal transplant. What are your thoughts on IVIG ?I am just trying to have a game plan Thank you
  9. Help with PANS

    Rachel thank you for telling me about your son, i don't seem to hear about other kids doing the vocal tic, so it's so puzzling to me. My son being 3.5 is just starting to talk so he speaks a little bit & yet HAS the knowledge of what he wants to say for example he will say "I see a squirrel, (then he will say) "& over there are 2 squirrels" So he understands tenses & his twin who is nuerotypical still says I see 2 squirrel , so it's interesting , but in between speaking "our language" he will make noises a little like a dolphin. We have only been on the Methyl B-12 injections for four months my son had a series of blood tests at Labcorp which showed that he need methylation therapy & had a B-12 deficiency . like you are seeing the injections have helped our sons energy too without hyperactivity. They have not made his vocal stimming more, as a matter of fact he used to vocal tic 50% of the time. We had a noisy household. I was just on the phone with a friend who has twins one of her sons is receiving DAN treatment & she is about to have the 23 & me test. Is your son still taking Intuniv? Is it something that is needed long term? Was it a good fit for him? Pr40 believe it or not before methyl B-12 injections his vocal tic were even greater,thank you for helping Maybe I need to be patient at let things WORK but as a mom I am so excited about the speaking he's doing that I just want to keep the forward momentum going in the best way possible
  10. Help with PANS

    I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet. After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store. Currently he is on his 3rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful. Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.
  11. Autism Maybe PANS

    Thank you Nancy I will post this on the PANDAS Forum You have been so helpful & I will see if there is a PANDAS Practitioner in my area My doctor is versed in PANDAS. We have traveled to see him, & would have to travel to see him in California or Florida since we are in Texas Thanks Renee
  12. Autism Maybe PANS

    I don’t post very much because when my twins are home from pre-school the minute I open the iPads they both grab one & jump on ABC Mouse. Background: my son is 3.5 years old he has had PDD-NOS since he was 18months maybe longer. He has a twin brother & they were initially both verbal at 16 months then one progressed verbally & social and the other had terrible diarrhea & stomach problems for many months & he then did not progress, he actually regressed for a year. I see a DAN that was in California but is now in Florida & my son is on Methyl B-12 injections, DMG, Digestive Enzymes before meals & cod liver oil & Probiotics. No dairy no wheat and limited carbohydrates is his diet. After 60 days of Methyl B-12 & DMG he began to talk, he can spell and writes things to me with his ABC sets that I bought him. He ACES the spell curriculum on ABC mouse (more than his Nuerotypical brother), but he is not social and he still vocally stims very loudly 3 times a day for an hour each time. So 3 hours a day. At that time it is very difficult to pull him out & back with us. This usually happens when people are at our house or if we are in a store. Currently he is on his 3rd round in 6 months of Fluconazole & Cefdinir. He makes big social & verbal gains when he is on this course. He can communicate better and stims a little less. Two days ago I accidental missed his Fluconazole and he had trouble communicating the next day, so now I am thinking the Fluconazole is the most helpful. Where do we take this? I need advice? IVIG? Stem Cells? Fecal transplant from brother? GcMAF? What could replace these medication rounds OR do the medication rounds sometimes help workout the problem for good? Please let me know.
  13. Sacc. B and Bravo Probiotic

    Sacc B correct is a benicial yeast that is known to kill Candida.I had been buying it from Florestor now I buy it from Jarrow, better price seems to work great also. I use it for myself Keep us posted on the Bravo Probiotic, Let us know if it works better for you then the Sacc B Culturelle combo. I know it is expensive how much did it cost? Does it seem difficult to make? My son is on Fivelac. That works really well for us, better for him for yeast control then Culturelle (but I like your SaccB Culturelle idea). Right now he cannot be on Sacc B because he is taking antifungals & antifungals kill Sacc B
  14. I am relatively new to this group, but I do look up answers a lot in the last few months since there are so many knowledgeable people on here. Question: DMG, Enhansa, Methyl B-12. My son is 3.5 and on DAN treatment for 4 months & doing well. He is on Methyl B-12 injections prescribed by his DAN & DMG. I recently upped his DMG slightly due to parents mention of gains from DMG.... & BAM my son went from labeling things with one word to using 2 or 3 word phrases, & kind of role playing when he plays like his Nuerotypical twin. So then he seemed yeastier, I had to use Lotrimin in his diaper, which I hadn't needed to do in a while. So I added a tiny bit of Enhansa to our regiment to counter balance the yeast. Enhansa is supposed to boost Glutathione while still being an antifungal. OK that works but one day I used a tiny bit too much & he was itchy everywhere, so backed it down to 250mg twice a day. He is 35 pounds. He also take AFP Peptize & Tri-Enza before meals. Does DMG come in an injection, would that keep the progress yet keep the yeast-beast away I would love to find that right combination for my child (that puzzle piece) & what is Deplin? Any help is appreciated
  15. Hello Hrosenkrantz: Thank you for your reply. Its good to know that it at one time worked. Did you find another treatment after that ended up being effective? Yesterday was day 4 on Cefdinir and I was noticing a regression. Staring off, rock throwing obsession full blown, not trying to communicate & talking gibberish to the light fixtures. These are things he had stopped doing after the fluconizole I am wondering if there is a Strep Die-Off regression then maybe he will move forward once the strep is more under control? Or if he has a Virus instead of Strep? If you or anyone knows, Please let me know!
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