mmw
-
Posts
16 -
Joined
-
Last visited
-
Days Won
2
Content Type
Profiles
Forums
Blogs
Store
Events
Posts posted by mmw
-
-
So I haven't been on this board in a long time. Why? Because my two PANDAS are doing so great it is not a "thing" anymore. But I wanted to come back and offer hope and encouragement because most people on the boards are struggling and the success stories are off the boards living their lives.
I have a (now 18 year old) who began with PANDAS/aspergers symptoms as a toddler. It got very bad- tics, ocd, hallucinations when he had strep, and absolutely zero social skills or awareness.
What we did: turned out we had major mold in our house and did complete mold remediation. He was on Augmentin for years and that really cut back on the illness. He still struggled socially a lot, so the summer after 2nd grade we did Brain Balance. It was hard. It was not fun. But we did it hard core, taking away the left brain toys (tinu books, figures, legos, even books not related to school) and did the practice exercises an hour a day on non-center days. We tool him off gluten and dairy (I believe he is celiac but he can now do dairy). We gave a ton of vitamins and digestive enzymes because he was not growing and was predicted to be 5'1 as an adult.
Within a few months after Brain Balance we saw some social awareness. It came gradually but the improvements snowballed.
He is now a junior in high school who plays on the basketball team (He literally couldn't catch a beachball in second grade), was nominated for the homecoming court this year, has strong friendships, and is very happy, planning to study architecture in college. He is sweet and happy and doesn't remember most of the stuff when he was younger. He is very outgoing and makes friends easily.
When his totally normal sister finished fifth grade we went to Disney and I noticed her having tics. I couldn't believe it. Yep, when we got home it turned out she had a raging strep infection with only tics and separation anxiety to show for it. ABX worked for a while, but she became withdrawn and started spending all of her time in her bed. In desperation, we flew to Dr T. Her numbers were borderline low, NO ASO numbers, and he told me she would never qualify for IVIG. Ironically the son I started off talking about had severe CVID. On paper he looked terrible and Dr T. wanted to do IVIG on HIM. Nope. We saw another Dr, Dr Jill Dickerson, in Georgia. She got my daughter covered for monthly IVIG mostly based on the fact that she had a strep infection that even four simultaneous (including IV) abx couldn't touch. (The herb cryptolepis got rid of it and she still takes a maintenance dose). So she has had 1.5 g/kg IVIG for a little over two years and we are weaning her off because she is healed. My now 15 year old is completely normal and is symptom free. (It took about 6-7 months of IVIG before tics were gone).
Sorry for the lengthy post but I want to give someone the hope I was so desperate for. Your child can and will get better. Don't give up. And Brain Balance was a miracle for us (an expensive one) but I truly think it worked because we did it to the nth degree.
Have Hope!!
-
When my son was young we thought he was very sensitive and had a difficult temperament. He eventually did get tics, hallucinations, you name it every time he had strep but before that he was just a VERY difficult child when it turned out he had strep. Like having to be physically pulled out of the car at preschool. He never quite seemed to know how to act either- lots of social issues.
We treated with abx for years and did Brain Balance and all of his aspie symptoms went away. When he did have an episode of rage it turned out his younger sister had a simmering strep infection.
He is now 18, totally healed, sweetest and the most laid back guy you would ever hope to meet. It was the PANDAS. It is gone .
-
I started with just 5-6 drops three times a day and increased. It dissolves a gelcap very quickly but I fill a 000 size (big one) up three times a day (about 75 drops) and give it to her quickly before the capsule dissolves. She is doing so much better and finally healing.
I gave the echinacea every hour for two weeks as best I could. Now I give one dropper mixed with water 3 times per day.
She is 13 and 85 pounds.
The dose I am giving is on the high end but she had strep that no antibiotics could eradicate for 6-7 months. We are also doing HD IVIG for immune deficiency.
-
My daughter continued to get strep (or it never went away) on Augmentin, Zithromax, and Rifampin together.
We found an herb that knocked it out. Google Stephen Buhner (He is mostly a lyme doc) and strep. I followed his recommendations and my daughter is finally strep free. i am keeping her on the cryptolepis indefinitely.
-
My daughter had the same thing. The nurse doing the infusion said it was pretty normal- something about the fluids pooling up. She had her walk around for a few minutes and it got better. It still hurt a little the next day but not much.
-
I am usually more of a lurker and do not post much. But I believe I had Pandas as a child and have pretty bad OCD. I have had horrible exasperbations with both rifampin and clindamycin. The rifampin interacted with my OCD medicine but I had the exact same worsening with clindamycin and could find no interactions. I have had strep several times lately (I have two pandas kids) and was trying to knock it out. My dd who does not have OCD takes rifampin with no problem but was allergic to clindamycin. Right now we are having good luck with Keflex after Augmentin failed her. I can also take zithromax with no issue. HTH.
-
I sent my son, who is 11, two and a half years ago. He was borderline aspergers....no friends.....hard time with large motor skills. And tics. He had a lot of seemingly unrelated issues.
Brain Balance changed his life. It was HARD and expensive, but one of the best decisions I've ever made. He is now free of tics (He had some recur last year for a few months and then they went away again) and is a very confident fifth grader with close friends. He now has the confidence and desire to play sports and is doing amazingly well in school. BB changed him so much it is hard to explain. We began to slowly see gains and they kept coming long after the program. He started to pick up on social cues, for example. Now he is very sensitive to social cues and is extremely careful about hurting others' feelings, embarrassing someone, etc. Before, he was totally clueless. I could go on all day, but it is a wonderful program as long as you do it wholeheartedly. The exercises are hard and not a lot of fun but the changes in my child were unbelievable. We did only one three month session.
I haven't looked at this website in ages...glad I did.
-
checked there are 2 chapel hills...i doubt it would be the close one4 hrs away madision county/orange
closest city is Atlanta
next i guess woud be Birmingham AL
Fixit, go to Dr. Susan Tanner at Spherios in Roswell Ga. She is knowledgeable about tics and PANDAS and will help you. Insist on seeing her.
-
Went to Infectious Disease today. They will not help us at all. Even though last time they said they would if it happened again - which it has!!!!!
He finished Day 20 of Keflex yesterday and now we have none. I left a message with pediatrician to call me.
He said that it was a coincidence that my son got better on antibiotics and he thought that I should go back to psychiatrist. Words can not tell how disappointed and frustrated I am. He said he thought that the steroids could have altered his behavior. I was so on "my game" and so professional - non confrontational.
It sucks so much that we have to advocate for help!!
What really stunk is that the nurse told me that the Dr we were seeing and the head of the division were on the phone talking about our case - even before he saw us!! Then to be so resistant. I asked him is this the position of you or the Institution and he said it was the position of him and the Institution. They do not believe in PANDAS.
How do I find the phone numbers of the doctors that do believe in PANDAS? Who has helped you?
Hi,
I am in Atlanta also. We have been to a neuro who seems to believe in PANDAS and are due to go back Thurs. to ask for a steroid burst as we are having an "episode" right now. Do you mind my asking who you went to [neuro] and, more importantly perhaps, which ID Dr. you went to so we can avoid him or her? I have a feeling he may send us to one and I want to know who to avoid!
Thanks!
m
A
-
Can anyone recommend a good, pure multivitamin for a 4 year old boy. I need to get him started today and will buy in a store or online. THANKS!
Hi,
I don't post often but read a lot.
I represent a company called Shaklee that sells high quality gluten free, children's vitamins with no artificial colors, flavors,etc. They are called "Incredivites". They are chewable. You can send me a message if interested and I will be happy to give you the link to my website and answer any qu.
rgcamom
-
Buster,
I have a ds age 7 who I believe to be PANDAS. With every episode, [and sometimes with no symptoms] he has awoken at 4am saying he is seeing round colored lights. He had no headache, though. We just went to the neuro thinking it was seizures, but he said he had no explanation for it. This has happened since his first episode at age 3. He sees these things floating in his room and he is awake with his eyes open. it is frightening to him.
rgcamom
-
Could Pandas parents give me any info that they can about their childs situation. Did antibiotics clear all symptoms? Do you also follow a clean diet? Have you done IVIG? What supplements are they taking? What tests have you done? -IGG, Etc. , Did your childs symptoms vanish or a gradual improvement? And do your children still have tic triggers-photosensitivity (this is a big one for me) or foods or anything else that your child avoids? Has any had a steroid burst? Thank you!!!
Hi,
My son is doing well, especially after being off gluten for the past six months. It turns out he was severely reactive and we did not know until we took it away. He started having PANDAS episodes before age 3. They also occurred with sinus infections. He is on azith every 5 days. He has been on antibiotics for a good year. He still has minor symptoms, including occasional episodes that used to precede strep. It is a weird phenomenon where he wakes up during the night and sees lights and things in the dark. Even on antibiotics, he has one of these once every couple of months.
We are seeing a chiropractic neurologist who, knowing nothing of PANDAS, told me those nighttime episodes are seizure-type activity in the basal ganglia. Makes sense. I hate it that it is still happeneing, though.When symptoms have flared up, tv and car rides are definite triggers. I have him wear sunglasses in the car. We have done IGG and avoided highly reactive foods for about two years until his gut was healed by avoiding gluten.
We avoid any chemicals, preservatives, etc. I switched to all-natural cleaning products...stopped vaccinating...things I thought were nonsense before. Sorry my answers are all over the place...he takes a lot of supps, chiropractor wants me to wean off and feels most are no longer needed. My son is doing well and is finally reacting "normally" to illness. He used to never ever have a runny nose or fever, which is not normal.
How old and how severely affected is your child?
We have a supportive pediatrician and have also used an environmental physician for the testing. My son never went to a neurologist and we never had the pandas panal done. But my records of the pattern [nighttime episode, next day separation anxiety and tics, peeing accidents] then a diagnosis of strep and symptoms remitting were enough.
HTH
MMW
-
Has anyone tested negative for celiac and/or gluten sensitivity but still tried a gluten-free diet and experienced significant withdrawal symptoms?
I'm reading "The Kid-Friendly ADHD and Autism Cookbook" and it recommends getting celiac testing before eliminating gluten from the diet because there has to be gluten in the body when the test is done. DS's doctor wants to see him before she sends him for tests so she can be sure to get the right ones ordered. His appointment isn't until Aug. 8. I've read that gluten withdrawal can often cause worse behavior for a week or two before the body adjusts. I have no idea if he's got any sensitivities or if he'll have any withdrawal symptoms, and I'm just wondering what to expect. I figure by the time we see his regular dr., get the referral for tests, and then get the test results, it'll be the end of August, or later if we have to see a GI specialist first. My concern is that if any of his tests are positive, he's going to be going through withdrawal during his first week or two of middle school, which will be even worse since he's starting middle school so it'll be a whole new environment. Not an ideal first impression, know what I mean? I'm almost tempted to try him on a gluten-free diet now to see what happens, and so we'd know what to expect, and then introduce it back a couple days before the test, but it seems like that would just be too hard on him. Any thoughts?
Thanks.
Hi,
My son tested negative to the blood test at age 3. At almost age 7 after years of problems and no answers[in desperation], I took him off gluten and his lifelong major gi issues have resolved. He is a PANDAS kid, so not sure tics were affected, but hopefully the immune system is better.
Yes, he had withdrawal! He was grouchy and couldn't stand for anyone to be around him for about five days. Then he was fine. This happened with later accidental exposures. I truly believe he is celiac, because he has all of the symptoms. I took him off gluten before he could be scoped, but keep in mind the tests are not always accurate. Removing gluten has given my child a new lease on life: no more constant accidents in pants, he finally started growing and gaining weight, and the random throwing up has stopped. his motor skills are better...it has totally improved his life.
Being gf is not easy and your child has to be committed to it at that age. But my son is so careful, never wants his old symptoms to come back.
HTH
rgcamom
-
Timeoutalready,
I usually don't read this board [have minor tic issues with one of my kids so read on that one] but came across your post and want to give you some much needed hope. I am 38 years old and have had OCD since I was a kid. It got really bad in my early twenties, and I was miserable, as you are. I felt like I wanted to die, or at least be unconscious to get relief from my own thoughts! I have been on a variety of medications and I feel that luvox is the most effective. Zoloft works too, but you have to take a high dose.
I take Luvox 300 mg/day and it makes my OCD practically a nonissue. I took a lower dose before having kids and it was effective. [Pregnancy did cause flareups and each of my 3 pregnancies caused the dosage to inch up.] I also take a tiny dose of seroquel, which increases effectiveness and lowers anxiety. Give the luvox a chance to work. When you are helped by medication for the first time it is gradual. First you realize a few minutes have gone by without "worries". Later you realize a whole half hour has gone by, etc. It is almost as if they get smaller and less important in small increments. Consider taking tiny doses of xanax or klonopin to deal with your anxiety until the meds kick in.
Don't give up hope! Most people on this board seem to just be trying to get "answers" to their ocd thoughts, which we both know never satisfy the urge to ask! As far as the sexual fears, realize that these thoughts are common to all ocd sufferers, and represent whatever is most abhorrent to you. Don't fixate on the content, it is meaningless.
Anyway, I hope I can encourage you. I have been married for 12 years and my husband is understanding if I hit a blip [as I did during the pregnancies]. But my life is about my kids, friends, family, etc. Ocd is just the handful of pills I have to take at night. Only my very closest friends know about my ocd. I am completely fine.You will be too. Ocd is a horrible thing, but the meds do help. You WILL get better. Find a good psychiatrist who will keep trying until you find what works for you.
God bless You, I will pray for you to get better.
rgcamom
-
Hope,
I am usually a "lurker" only, but your post compelled me to answer, as, unfortunately, I am all too familiar with the subject!
My 6 year old son has [not officially diagnosed] PANDAS and some of his tics have occurred with severe sinus infections. I have a really good ENT who insisted we have our home checked for mold. Long story short, we did have mold which is believed to have contributed to his compromised immune system. We had mold remediation last summer, which took four weeks and unfortunately was very costly. It was almost $50,000. Ours is hopefully a more extreme case than yours but it is expensive. It is important to get a company that knows what they are doing, not a heating and air company. We went with the company that both our ENT and environmental physician use in their home.
My son is doing very well now. We have also done many other things such as cutting out toxic cleaning products, food additives, doing allergy treatment, nutritional supplementation, etc. I have gotten a lot of information and encouragement from this board!
mmw
A Post To Give You Hope
in PANS / PANDAS (Lyme included)
Posted
You are welcome! My daughter is actually on three abx, but what stopped the positive strep and tics was the cryptolepis. Her doctor is slowly weaning her off the abx. I would imagine the cryptolepis would help is he has any lingering strep issue. I am not sure what else it targets. It certainly wouldn't hurt to try. Yhe tincture is on amazon or Woodland Essence. It tastes terrible so we put it in large veggie caps and my daughter swallows them. Be quick about it, because the cryptolepis will melt the capsule in about 45 seconds or so. There is no making it ahead. I hope that helps!