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MamaBeartoCharlie

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  1. I'm sorry! This sounds like an awful lot to be dealing with. Lyme is nasty and especially so for our fragile children. I understand wanting to try steroids and IVIG to stop the progression of the illness right now. But steroids are contraindicated with Lyme, as it only further dampens his bodies own natural immune response allowing the bacteria to multiply further. Also if you search the forum you will see there are lots of stories of IVIG being ineffective because of underlying Lyme. If your paying out of pocket you may want to consider making sure his body has eradicated the Lyme (
  2. We don't have stuttering exactly but other speech issues. One is a bit of a slurred sound when my son says hard "c" sounds - my daughters name starts with a C and he says her name constantly to get her attention so it's quite obvious. It's almost like he adds a "L" so the hard "c" becomes a "cl" sound, but it's a bit more garbled. His "s"'s sometimes sound more like "sh" too. He has also started a tic where he speaks in a growl type voice sometimes. It's very strange. Some sentences will be half growl and half his normal voice.
  3. PanLymeMom, We are in Ontario but receive care through Dr Ayla Wilson, an ND in BC. We have access to Dr Wendy Edwards in Ontario as well but Dr Wilson is very knowledgable and we have chosen to consult with her to address gut issues etc in addition to just receiving antibiotics. Dr Wilson will consult by phone. She is vey knowledgeable about both PANS and Lyme. You don't need a referral and can book through her website (she is away for the next two weeks but is generally really great about fitting patients in) Dr Susan Bensler a rheumatologist at the Calgary Children's Universith wh
  4. I know the issue is obviously the anxiety and getting her there. Have you used Emla patches? We sort of did our own ERP using the patches. It used to be full blown anxiety attacks and crazy vocal ticcing beforehand and we would have to hold my son down. By having a few positive experiences with the patches it's now much easier. I think last time zero pain plus a trip to the toy store afterwards did the trick because now our daughter needs to get blood work done and my son said he wished he could go so he could have a reward! I was shocked he would actually "want" to have blood drawn. Ma
  5. Hmmm...this really has me thinking today. Our son was gf/df for years before his PANS diagnosis. The diet changes definitely helped with his early PANS flares in toddlerhood (which we didn't know were PANS then). Reintroduction of gluten and dairy in the past caused a major regression which was improved again by changing his diet. With such past success with diet changes, we followed the recommendation of the first DAN we consulted after our son received his diagnosis, to remove all grains. But in removing the grains we've found we've actually increased his intake of processed meat and vegan "
  6. My son was on Zithromax for 7-8 weeks. It was the first abx he was prescribed for his PANS. It wasn't the magic bullet for us but if you search on the forum some parents have found tremendous success with it and use it long term. It does have risk of possible heart side effects which concerned me (my son eventually developed chest pains while on it but that could be Lyme related as he had other symptoms too including tingling and leg pains). I think 3 weeks is such a short course by comparison to typical Lyme and PANDAS treatment it is likely very safe. To mitigate the possible side effects yo
  7. Thanks so much everyone for your replies! I've had trouble logging in on my mobile and living in this PANS nightmare makes it hard to get to the computer! We had strep in the house again last month at a time my son was of antibiotics. It caused a further flare but thankfully we caught it early and started him back on Keflex before my daughter even had strep symptoms. She swabbed positive the next day. The whole experience affirmed for us both that our son does indeed have PANS/PANDAS and the need for long term antibiotics! Since that flare we've since also added Biaxin to treat we su
  8. Tics have been our biggest symptom in the flare we've been in since September. DS is on Keflex and our doctor recommended he take a dosage of 50-100 billion probios/day. He was previously only taking 4-5 billion (regular adult dosage). We just started GutPro and he's not even up to the full infant dose yet but tics seem to be worsening for him. Die off or are we actually making him worse? Push through and detox or scale back? We also introduced Sacchromes Boulardi and I stopped that just to focus on a possible reaction to the GutPro. We also need/want to introduce liver drops, nystat
  9. There is a link right on the website to all the ingredients in the product. I'd never consider it otherwise! I can't see the ingredients tab on the mobile website but it's there on my laptop. So afraid to try anything new but need these tics o stop and working on the theory they may be related to not clearing toxins and knowing my little guy has a sluggish liver hoping this is a gentle way to help him.
  10. Has anyone tried this product? The whole line of kids products looks interesting to me. The NDF calm is a gentler kiddie version of Liver Life, which I've read is popular in AdS biomed. I feel like my son could use some help clearing toxins. Wondering about others experiences?
  11. I find the EDS connection interesting. I had a chiro diagnose me just based on the flexibility of my elbows. I stand with my knees locked and hyper extended and have dislocated my knees with only stretching and not tearing tendons - from a knee injury I was dx with benign hypermobilty but my chiro says it's actually EDS. I don't have overly stretchy skin but it's extremely soft. My PANS son has low muscle tone and so I suspect he may also have EDS if it's what I have. I know low tone in infancy is recognized as early warning sign for ASD as well and a correlation between ASD and EDS has been
  12. Thanks so much for sharing your stories! I do wonder if it's congenital lyme. I had a stillbirth at 25 weeks in my pregnancy before DS was born. My daughter's autopsy was inconclusive but during labour I spiked a crazy high fever and was pumped full of IV abx so I've always felt it was an infection that caused her death. She also went from developing perfectly normally to suddenly having reduced movements. She slowed the night before she died but was still moving. The next morning I couldn't feel her move and went to hospital. She was alive but had hydrops on ultrasound and still wasn't m
  13. Oh and what was the dosage schedule - she's recommended 1000mg 2x a day.
  14. Our son is currently fairly stable in terms of his OCD, anxiety and emotional liability but continues to have tics. We've had illnesses is going through the house and my daughter has impetigo on her face which I fear is strep (but my sons strep titres have been low so he was labelled with PANS and not PANDAS - coxsackie and his varicella vaccines appear to have played a major role for him). We hit a brief rough spot last week with rage etc and our PANDAS knowledgeable Ped prescribed Keflex. By the time we received the prescription he was doing much better and had a fantastic weekend (I
  15. Totally by fluke I think we've stumbled upon something helpful. On Friday we gave our son Kijuu brand pomegranate cherry juice. He had some with breakfast and to get him to drink at school DH watered some down in his school water bottle. After a terrible week (everyone in the house has been sick), he came home a new child! The only change that day was the juice, so I googled just out curiosity and apparently both pomegranates and cherries are powerful anti-inflammatories and have been shown in some research to target brain inflammation related to Alzheimer's. We experimented all week
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