qannie47
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Posts posted by qannie47
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Hello everyone. I have not posted in awhile. We have been very fortunate in that DS has been in good shape. No major flares in 2 1/2 years, with just a couple blips on the radar. I have come to the conclusion that the blips are caused by food/sensitivity/inflammation. Dairy/Gluten/Egg. I came to this conclusion because his non-Pandas twin has similar issues with one key difference. When both have consumed these allergens, my non-Pandas child behavior symptoms go away in a couple of days when returning to a clean diet. Pandas son will morph into what looks like a minor Pandas flare for up to 4 weeks. Hence, my theory is that the inflammation is enough to reap some havoc with his Pandas. If I can right his body, perhaps he will achieve even another level of better.....
So. I followed a child his age who went thru this very rigorous Ancient Chinese allergy therapy that includes accupresssure while digital signals are sent into the body via a cuff and had been "cured". He can now eat everything. No issues. No IGG or IEG symptoms. It has been 9 months, and he is still good to go.
I have pulled the trigger. I am wondering if anybody has done this kind of therapy with good/poor results. The monetary commitment is a bit overwhelming.
Below is a video that explains it. (kind of)
Allergy Video for PC
<https://www.hightail.com/download/bWJyYURCbEFubHk5TE5Vag>
AAT Video for Mac <https://www.hightail.com/download/bXBacHBCbEF6RTgxWjhUQw> -
If your children have demonstrated a positive relationship to Tics/Strep in the past, I would definitely treat with antibiotics if swab indicates Strep. Pandas is about a glitchy autoimmune system and misguided autoimmune cells. The abx will shut down the immune system as well as treat the infection, and that is what you want. Pandas is a chain of autoimmune events, the symptoms being the end result of an infection. That is why you do not always see the Pandas symptoms until days or weeks after an infection...
Hope this makes sense.
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First, prayers to you and your family. If the hospital does not believe in Pandas, that makes it more difficult. Perhaps instead of using the name Pandas, use the term auto-immune disorder. Cite observations that when your daughter gets sick with a cold, stress, etc....she gets worse. If she has windows where she is/was non-symptomatic talk about those. Share insights to all the clinical research studies that are starting to link mental health issues to the autoimmune system. Try not to get too emotional. They will hold that against you. It is hard, I know. If they decide to run some tests, see if you can lean them to run some Pandas tests without the association.
Can you have her transferred to a hospital that believes in Pandas?
Also, remember, if they can stabilize her with western psych meds that is good....at least in the short term while you search for answers....
Hope this helps...
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Out of curiosity..I clicked on the links on first post...will cooks Facebook/pandas page has not had a new post since may/2015. The last post also is a disclaimer...big shocker. The other link no longer exists............
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PR40...my non-pandas son, was Vit C depleted due to food intolerance issues. He had nosebleeds and his gums bleed until we increased his vit c. (he came up low on vit c on a blood profile). We were not even worried about the gums/nose bleeds ( secondary concern), but pleasantly surprised that both went away when we began supplementing vit c.
your post rung a bell...hope our experience helps....
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Email him an outline of symptoms in advance.
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Have you given her a dose of steroid to knock off headache...the headache can be debilitating....a dose of prednisone may be necessary...Dr k said thermation initial brain Imflanation afyer ivig. That could speak to some of the behaviors you are observing.
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I will say upfront that I don't have a personal experience with clonidine. I do have a friend though whom started with a low dose for sleepand she kept having to increase dose for desired effect/sleep. It got to the point where her dose over the corse of 1 year increased rather dramatically and she was totally dependent on it to sleep. The new dose required was leaving her groggy the next day. It took her brain several weeks to adjust when she decided to go off and try other approaches. Many nights of no sleep even without cold turkey.
So there is a concern about brain addiction. That being said, you have to weight the benefit of any drug to decide if the benefits outweigh the neg. Your child may have a completely different reaction to clonidine and the temp fix could be very beneficial. I know my one son whom has add...it took me a long time to pull the trigger...I was afraid of putting a drug with thay classification into my son's system...turns out to have been a game changer for him in a positive way. Follow your gut...
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Has he ever been on Augmenton before? Typically, you will either see a beneficial response/reduction of symptoms or no benefit, not an increase of symptoms. If he has never has Augmenton before, perhaps he can't tolerate it?
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Dr k's research indicates that abx alway/eventually fails over time with pans/pandas
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Amoxicillin is a different version of penicillin..a generic..is what I have been taught. Penicillin should be more effective... if abx is failing..that is typically a red flag/sign that ivig is indicated...unless it is not pandas or pans..
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WOOOOOOOOWHOOOOOO
SO Glad to hear the great news!!!
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CALM: magnesium with Calcium. magnesium is a wonderful muscle relaxer, as I suspect you already know. Give her 2 HEAPING TBL dissolved in hot water and cooled with ice cubes. I use this for tic reduction for my adhd child whom can be a bit ticcy from concerta.
I tried it once because I was curious...It knocked me out....
Give 10 min before bedtime...
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I would also have your water tested
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Thank you for sharing Broo100.... It is so emotionally supportive to hear good news. I too decided that part of the battle was combating the inflammation!!!!!! It is all about the inflammation....
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What bacteria? Strep?
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I would go back on abx for a couple of weels but have her tested for strep first. If you don't want to do abx and no strep..motion 3x a day for a week has help us in the past.
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Turmeric will help with inflammation.
Benedrill will help calm him down. It will also help with some of the reactions that can come with ivig. Dr. k gives benedrill right before ivig..
The fact that he stated 3 weeks of no abx before ivig causes a pause in me. I have a feeling that there is a good reason behind this
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My kids did the genoomind gene_cept dna test. It was not expensive. It will tell you by type/brand that your child will react best too. I would do this first.
I am not sure how well stimulants would work when flaring..however...if impulse control is a major problem than they could be helpful.
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Fill the prednisone script to have on hand. At the first sign of any headache...give it to him. The second time around, I waited 4 hours to fill script after headache appeared, and the headache got too out of control and took days to go away..... The first time, when I administered immediately, it went away instantly and stayed away.
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I was told that there can be false negatives. The best way to tell if you are unsure is to remove these from diet and if you obtain positive results you have your answer. Both my sons did test HIGH for one or both. When I cleaned up their diet, I saw improvement within days....not even a week. My one son, he has been clean from both gluten and casein for about 1 1/2 years. I was told that when healing occurs, the body has a chance to eventually digest these proteins. I have been testing the waters with him. So far, it appears, that he has indeed started to digest on his own, hence, no stomach problems or psyche issues. (not pandas child) I think that this is due to his immune system forgetting....as well.....
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The OATS test will give a very general guesstimate in my opinion. It does not actually measure transmitter levels... Yes it is the Genecept test done by Genomind. If you are interested, PM me, and I send you a copy of my son's results so that you can see what it actually looks like, results wise...
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While we were and are still experiencing a very positive outcome from 2 IVIG about 19 months apart, what I would have liked to see in this publication is a percentage. How many kids received 1 or 2 IVIG's and how many of those experienced a positive/long term outcome. We were not cited in the report, yet I feel IVIG played an important part in my ds's healing.
Also, what I found most remarkable were the similarities with regard to my ds and the timeline of the first and 2nd IVIG. Somewhere around 1 year and 18 months...My ds fell into the tail end of that timeline at 18-19 months. Not sure at all what that means, but there sure seemed to be a pattern.
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Flaring again...thought I was done here
in PANS / PANDAS (Lyme included)
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Beerae22 I wish I had the magic words. Something that could wash away the dread and heartbreak when we as parents realize once again it is not over. Hope. That is what keeps me going after I have a good cry and pull up the bootstraps AGAIN, as I know you will. I try to tell myself that I have come to terms and have accepted that our Journey will not be truly over with for some time. Yet, when long periods of time go by and I see a happy 100% back to baseline child, I start to believe that it is indeed over for good this time around. Hope. Hope is what makes those period of times when our children are in remission so much more miraculous and Hope is what gets us through when the sky has fallen once again.
Don't forget Hope.