posted
Morgan, my 6 year old is about 5 weeks into SC. In an effort to shorten duration we are trying to dramatically improve our diet while also looking for potential allergic reactions which might exacerbate the SC. Therefore, have been doing a lot of reading on .edu sites. For anyone who does not know, you can do advanced search on google that only searches .edu sites and only relevant research will come up and you can avoid the junk.
Anyway, I have found that magnesium deficiency may be a common factor in many CNS disorders. Also found out that Vitamin C can remove some other vits. such as mag. from the body.
Have been adding lots of EFA's (Essential Fatty Acids) to assist in CNS health. Supposedly, the brain is a high % of fat. So we have added Salmon, olive oil, almonds, flaxseed oil, eggs, etc. We already had a lot of broccolli in the diet.
Does anyone have any thoughts or experiences adding DHA? I have seen the post on Vit. D, but this developed after a lot of time in the sun and constant milk drinking.
Also, I know that CNS conditions such as Autism, etc. can be linked to aggravators, possibly allergens in dairy, citrus, wheat, caffeine, etc. Any thoughts or experiences on this.
Apparently, Morgan has a light case of SC, but have read that these "light" cases can drag on for years.
Another interesting topic of study is the supportive nutrients for the myelin sheath. Have only begun to start on that. Any thoughts on that?
We can "discover" links if we all work together. BTW, our doctors had absolutely nothing to say about diet, as if there is no link between diet and CNS health. How absurd! If I were them I would be ashamed of myself!
Posts: 8 | From: chicagoland | Registered: Oct 2009
| IP: Logged
quote:Originally posted by stuart-s: Morgan, my 6 year old is about 5 weeks into SC. In an effort to shorten duration we are trying to dramatically improve our diet while also looking for potential allergic reactions which might exacerbate the SC. Therefore, have been doing a lot of reading on .edu sites. For anyone who does not know, you can do advanced search on google that only searches .edu sites and only relevant research will come up and you can avoid the junk.
Anyway, I have found that magnesium deficiency may be a common factor in many CNS disorders. Also found out that Vitamin C can remove some other vits. such as mag. from the body.
Have been adding lots of EFA's (Essential Fatty Acids) to assist in CNS health. Supposedly, the brain is a high % of fat. So we have added Salmon, olive oil, almonds, flaxseed oil, eggs, etc. We already had a lot of broccolli in the diet.
Does anyone have any thoughts or experiences adding DHA? I have seen the post on Vit. D, but this developed after a lot of time in the sun and constant milk drinking.
Also, I know that CNS conditions such as Autism, etc. can be linked to aggravators, possibly allergens in dairy, citrus, wheat, caffeine, etc. Any thoughts or experiences on this.
Apparently, Morgan has a light case of SC, but have read that these "light" cases can drag on for years.
Another interesting topic of study is the supportive nutrients for the myelin sheath. Have only begun to start on that. Any thoughts on that?
We can "discover" links if we all work together. BTW, our doctors had absolutely nothing to say about diet, as if there is no link between diet and CNS health. How absurd! If I were them I would be ashamed of myself!
posted
My daughter was dx approx 5 months ago with sc. it has been a saw-tooth recovery kinda of journey and we are not there yet.
We are strong believers of vit D--the sun does not provide a therapeutic level. we are on EFA's--for brain we are probiotics--for the candidia and gut we are on b complex-for tics we are on inosital -for OCD we are on supergreens.--for immune
we tried gluten free--too hard. My neuro told me to go get her Mcdonalds b/c she "deserves" it. That there is no link between CNS and diet
we are doing so many things that it is hard to tell what is working. I am finding the PANDAS ACN forum more productive than this one.---good to hear from you---J
Posts: 18 | From: Denver | Registered: Jul 2009
| IP: Logged
Do you record everything she eats? I'm not trying to make your life more difficult, but I'm looking for patterns. We record everything she eats and recording really good days then looking back to the past few days of meals and snacks. One thing I have noticed is that before (sometimes going back even two or three days) a really good day she has had almost no wheat and/or very little cereal.
Over the past summer we had a lot of wheat in our diet because the kitchen was being rebuilt. We had way to much wheat pasta and sandwiches on wheat bread.
It looks like there are difficult and easier versions of gluten free diet?
In the ataxia post I noticed someone wrote concerning their gluten free diet and saw their connection to a celiac related illness without digestion problems, just a CNS manifestation with malabsortion issues causing malnourishment.
Hope I am not bothering you, Lord knows your hands are full, but what is the PANDAS ACN? I know Pandas is Pediactric Autoimmune Neuro. Disorder Assoc. with Strep., but I guess I'm asking if the link is within WeMove? Somtimes I am rather blind. (No ocular celiac, Just kidding)
Nuerologists...hmnn...ours told us to put our 7 year under 50 pounds on ORAP (pimozide). First thing I find in research "not reccomended for children under 12 or 16". Second thing I find "potential malpractice cases for pimozide causing tardive dyskinesia".
Like I said before we have more access to these problems than the Pros... The patients are in our homes...Lutheran General in Park Ridge, IL. (a massive hospital) only gets one case like this a year. How are they able to do research? It is up to us.
Posts: 8 | From: chicagoland | Registered: Oct 2009
| IP: Logged
posted
sorry..took me so long.Believe it or not I am starting to wean myself off these sites. ACN is mostly a PANDAS forum..I think it is at latidudes.com . I know..I am seriously kicking myself for not journaling or charting this.
My daughter has dipped neurologically AGAIN this week. So heart breaking and frustrating for all of us.I would say she was almost at %85 normal the last few weeks.We had finished a short steroid burst and the positive effects from that did not seem to last.---J
Posts: 18 | From: Denver | Registered: Jul 2009
| IP: Logged
We've only been on a gluten free diet for a couple days and are seeing significant progress. Yesterday, Morgan played outside for 3 hours and was wanting to run. She ran a little bit, it wasn't perfect, so we discourage running. This morning she said two sentences that were perfectly normal. Typically the morning has been the worst time of the day.
She also loves the fresh fruit, nuts and vegetables.
Posts: 8 | From: chicagoland | Registered: Oct 2009
| IP: Logged
posted
My daughter has deep dark circles under her eyes and I am suspecting gluten. She is ADDICTED to PB&J...and I have not been able to find a replacement for that.
Sooo...can I ask how your daughter presents. My daughter never lost her ability to walk or speech..she has no heart complications. She has joint pains, sensory perception problems, cant wear clothes, mild OCD, mild poor coordination, EXTREME ANXIETY. WE actually have wondered if her's is SC or PANDAS..lately it seems more SC. Is your daughter on prophalaytics (sorry for my spelling...long night with her).
BTW: where do you live. We live in Denver and have found several people here with this dx..apparently there was a different strain of STEP last fall---Jenn
Posts: 18 | From: Denver | Registered: Jul 2009
| IP: Logged
posted
Oh yeah, pb&j is big here too! I just give her peanut butter on one spoon and jelly on another. She really didn't like the bread anyway and now I'm finding out why!
At the end of September Morgan could hardly walk for 2 days. Her speaking abilities were limited to one word like yes or no. Very sad. Her wrists, elbows, and knees were "cracking or popping". I assume they hurt, but she said they didn't hurt. Arms, legs, hands, and head were all making involuntary movements, which of course is partly referred to as OCD. Very inconclusive evidence of heart irregularity. No evidence of strep.
Morgan has red hair and light skin. Minimal circles under eyes, but present.
It seems like OCD is a really broad category. No sensory perception problems or anxiety. We really, really go way, way out to ensure she is comfortable and happy. It probably isn't humanly possible to spoil her more then we do. It takes the efforts of 4 people.
Yes, to the prophylactic. She is on amoxicyllin suspension. Very tasty.
Yesterday we were outside for almost 5 hours playing and then watching soccer. 3 or 4 days ago that would have been impossible.
I think pandas is a category which includes SC?
We live in Palatine which is in the NW Chicago area.
I found celiac.org and it cleared up a lot of misperceptions about celiac for me. University of Maryland site about celiac disease is very good.
I copied this sentence from their site. "The second half of the ‘Gold Standard’ is improvement of health with the gluten-free diet"
University of Chicago also had some good stuff.
Wikipedias site on celiac covers ataxia (coordination problems), myelopathy, peripheral neuropathy, and schizophrenia under Misc. Signs and Symptoms. Believe me, I'm trying to control my fury if a team of doctors at a major hospital can't dx this. If I got this right (I am a musician/teacher/handyman), well, Oh my gosh. I'm sure their licensing boards will be interesed?
For God's sake. They didn't even suggest, suggest checking out food alergies. I had to ask and the only reply was to give her yogurt.
Morgan is doing very, very good this morning. After a huge activity day that is too coincidental!
Stu
Posts: 8 | From: chicagoland | Registered: Oct 2009
| IP: Logged
posted
Interesting that our daughters have the same DX and present SO differently.
I love the gold standard quote. You have inspired me to give the G-F world another go-around. UGH (my daughter is difficult)
Well I am a pediatric occupational therapist by day..well use to be. I took a medical leave to take care of my daughter . So I know ataxia, chorea etc...and my daughter has none.But she did have STREP, milk maids grip, "dancing tounge", stuttering and much much more.
We I have heard of a Dr. in chicago that sees upward of 500 SC/PANDAS kids. After speaking with him he seems pro-PANDAS. I can dig up his info if you are interested in talking with him.
I wonder why you are not on Penicilan.---
K. good night. I've got to prepare for another day.
P.S can you believe how dead this site is...crazy
Posts: 18 | From: Denver | Registered: Jul 2009
| IP: Logged
posted
I think amoxicillin acts against a broader spectrum of bacteria and is also more soluble then penicillin.
Any info. you have on that Dr. would be much appreciated!
Morgan also had the hands thing and the tongue for a while.
Maybe a lot of people are realizing their issues are food induced and going to other sites that dicuss it? I briefly looked at celiac.com and it looked Crowded!
We picked up gluten free chocalate chip cookies yesterday at whole foods, Yummy.
Morgan is starting to remind me of a normal child. Enough so that we went to 4 locations yesterday. 2 stores, a home and a school. I'm hoping you are able to do these things too?
Stu
Posts: 8 | From: chicagoland | Registered: Oct 2009
| IP: Logged
Printer-friendly view of this topic