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mdmom

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Posts posted by mdmom

  1. Figured out the cause of the eye blinking tic....I think LLM would call it "over methylation."

     

    We had doubled methyl-B12 dose and Thorne's Methyl Guard at the advice of our LLMD. I backed off the Methyl Guard dose first and the tic didn't get better. Then we cut the methyl-B12 dose in half and the tic resolved.

     

    We never had to remove the sulfasalazine, which has helped immensely with the GI pain.

  2. My DS16 has been receiving home & hospital instruction services through our school system since May 2011. Prior to this, he was being transported to a special needs school 50 miles from home. After he was properly diagnosed with PANDAS/Lyme/CIVD, etc. in April 2011 we realized that he was being constantly exposed to infections. He has an extensive IEP because of his Asperger's diagnosis.

     

    DS could have never tolerated the aggressive treatments we have done and have the stamina to attend school. He is still not physically well enough to go. I'm not sure when he will be able to return.

     

    In our state, home instruction must be ordered by a doctor and monthly updates from the doctor are mandated. Also, my son is able to stay on home & hospital because of his physical illnesses. Our state (and maybe it's a federal guideline too) is that a child can only receive these services for more than 60 days if a physical illness keeps them from attending school. If the illness is psychiatric, a school system must find placement for the child that addresses their psychiatric needs. So if you are thinking about asking the school system you probably should steer clear of mentioning psychiatric symptoms. Stick to the physical symptoms (e.g.. fatigue, muscle weakness, joint pain, headaches, lack of stamina, sleep disturbances, etc).

     

    He receives 12 hours of instruction per week. His IEP also dictates that he receive counseling services, so a social worker comes twice per week to work with him on his emotional/social goals. The biggest challenge is boredom. He is finished with school by 11:30 each day and we have strict rules about use of electronics (he is not allowed to use the computer or video games until after 3:00 and after homework is completed). So he spends his free time reading and playing with Legos. He admits he is lonely.

     

    Another other challenge we have is that I am not able to leave the house during his instruction hours. A parent or someone over 18 must be present during this time. I am unable to work outside the home because of this arrangement.

     

    The benefits are that he is able to learn without the stress and distractions of school and his exposures to new infections are greatly reduced. We require that anyone coming to the house to teach or spend time with him be well. All of our friends, family and support people know to stay away if they have even the slightest sniffle. The implications of catching something new are just too great for him until we can get his immune system stabilized.

     

    Is this set-up ideal? No, far from it. He is missing out on social opportunities and he already struggled socially. But my husband and I along with the treating doctor believe that his health is first priority. And when he is well enough he'll catch up socially. He has been able to maintain 2 friendships through all of this and he does outside activities when he feels well enough to do so.

     

    Hope this helps.

     

     

  3. DS16 had a PANS episode last Sunday (extreme anger, threatening to hurt himself or others, screaming, scrunched face). It only lasted 10 minutes, which is a far cry from his episodes years ago. The Thurs. before he complained of a sore throat and Friday he had a red ring around his mouth. Both of these mild symptoms we have identified as his presentation of strep. Sure enough, we checked strep blood levels (ASO and Anti-DNase) and they are both elevated. ASO is always elevated, but the Anti-DNase is sometimes normal.

     

    We have aggressively treated for everything under the sun since April 2011. He has been consistently on IV combo abx since Jan 2012 and started monthly HD-IVIG Jan 2013. How could this child get strep? The doctors and I think he is carrying it, perhaps in his tonsils.

     

    I know many of you have gone down the T&A path already and for some reason I am dragging my feet on this. Being 16 I am told the surgery will not be a walk in the park for him. I never belabored the decision to put a central IV line in or start IVIG, both big decisions. So I'm not sure why I am uncertain about this one.

     

    Needing encouragement here.

     

    Also, for those of you that have had T&A done, do you know if insurance will accept a chronic strep dx from just blood tests? He has not had the typical strep throat dx that usually would justify the procedure.

  4. Hey, smart, resourceful people.....

     

    I know this not a PANS or Lyme issue, but my complex DS16 (see my tag line) was just evaluated by a physical therapist and he is suspecting Marfan Syndrome. My son is 6'2" (74") with an arm span of 77". He is skinny and his trunk is in disproportion to his long skinny arms and legs. He has very long skinny fingers and thin gangly toes that look more like fingers. His joints are loose and he is hyper-flexible.

     

    I am not sure who could rule this diagnosis in or out. Marfan Syndrome can involve cardiac issues, so it's probably something I should investigate further.

     

    And I thought the diagnoses list was already too long... :(

     

    Would appreciate hearing anyone's experiences.

     

    Thanks.

     

     

  5. Both my DS16 and DD14 have been taking Circumin 500mg BID for 5 months now. It is compounded by a specialty pharmacy at a high price of $60 per child per month. Not sure if it is helping or not b/c they take so many other supplements and meds.

     

    I noticed that some on this forum use over the counter Turmeric instead of Circumin.

     

    Is there a difference? The OTC Turmeric would save me A LOT of money and we are running low on resources after 2.5 years of aggressive treatment for both children.

  6. Just a warning about the CVID dx (or any primary immune deficiency dx). Many insurance companies require a vaccination challenge test to be done in order to confirm the dx. Usually the pneumococcal titers are tested first (either 14 or 23) and then the Prevnar or Pneumovax vaccine is given. 3-4 weeks later the titers are drawn again and there should be a 3-fold increase in titers; if there is not, a person is considered to have a primary immune deficiency. This is standard practice of treatment among immunologists.

     

    Be informed of your doctor's protocol in this area. Some will vaccinate and think it is no big deal. For some kids (not suggesting all) with PANDAS/PANS vaccinations are a big deal.

     

    We fought our insurance company when they wanted to see our son vaccinated to prove his CVID dx when we had multiple PANS docs telling us he could no longer receive vaccines because of his history. It was a long, hard, ugly fight.

  7. Thanks for the ideas. We removed dairy 4 years ago and the GI distress immediately went away and stayed away. The GI distress started after a trip to FL for the Rothman program. If it's not a flare of a old lingering infection, we are suspecting a new infection that he picked up in FL (he waded in the Gulf of Mexico, fished and drank some local water) and we were there pre-IVIG tx knowing he had an immune deficiency.

  8. I will share my DS16's history and maybe you will find something useful in here.

     

    Dx with PANDAS at age 13 but symptomatic from age 4. We consulted 4 doctors well-versed in PANDAS and all of them independently told me that my son would need IVIG to recover because his case was so chronic. However, our insurance company would not pay and we could not afford the treatment. The 5th doc we consulted is an LLMD (lyme-literate medical doctor) and this doc dug deeper and found infections beyond strep - Lyme, Babesia, Mycoplasma, Bartonella, viruses. Some of these infections were diagnosed clinically (labs showed negative on many infection panels) but I trusted the doc to treat based on clinical symptoms. It was 2.5 yrs ago that we started treating aggressively for infections. We also addressed diet (low sugar, gluten and casein free, organic), methylation, ERP therapy at Rothman, lots of supplements including probiotics. My son has slowly made progress. This doc also found an immune deficiency - his total IGG levels are low with 2 out of 4 subclasses of IGG being low.

     

    While we treated infections, I appealed our insurance company multiple times to get IVIG covered for my son's immune deficiency dx. They eventually approved it and he started on monthly IVIG this past January.

     

    After the 5th IVIG (1.7g/kg), he tested positive for some of the suspected infections and he started responding with more physical symptoms - seems physically sicker and psychiatrically better. The IVIG treatments seem to be giving his immune system a fighting chance and I believe he is finally on his way to clearing the deep-seated infections that were lingering for so long.

     

    Every child's story is different. We are one of the unfortunate cases where my son went very long without being properly diagnosed.

     

    Even though we had to wait 2 years from first PANDAS diagnosis to first IVIG treatment, I have not regrets. Knocking down the infection load was a key part of my son's treatment as well as treating other issues mentioned above.

     

    Have you completely addressed infections? tested immune function?

  9. My DS16 has PANS++ (read my tag line for the rest). Although tics are a hallmark symptom of PANS, this has not been a big issue, as he has only had a subtle eye-blinking tic that has come and gone over the years. This past week the eye blinking in his right eye has gotten so bad and frequent that the muscles around his eye are very sore.

     

    The only things I can think that might be affecting him are:

     

    He had IVIG#8 2 weeks ago.

    He started on sulfasalazine for GI issues 1 week ago.

     

    I was worried about him starting the sulfasalazine knowing that he could have a CBS mutation (we haven't tested). Could this make the tic worse?

     

    He does take 1800mg of NAC daily. Would increasing NAC help? We use it for liver detox but -I am digging into my memory here - I believe I have read here that others use it for tics.

     

    Any ideas?

  10. The FluMist vaccine pushed my son over the edge - it set off his worst PANS flare. Other parents on this forum have reported flares from the FluMist as well. Hopefully others will chime in with their opinions. I cannot offer an opinion in the flu shot, which is not a live virus.

     

    My DS16 completed all of his vaccines at age 5 albeit for boosters and we will no longer vaccinate because the risks are too high for him.

  11. Deedee...

    My DS16 was constipated from birth. I nursed him, fed him well when he moved to solid food. Constipation lingered until age 12 when we ended up at a GI doc who said he would have to be hospitalized to be "cleaned out." At that time, I was working with a holistic doctor who urged me to change our family's diet. She recommended a gluten and casein free diet. I complied 100% (we went cold turkey) and my son's constipation went away within days. That was 4 years ago and he is never constipated.

     

    Have you thought about an elimination diet? Gluten and dairy happened to be our culprits. Perhaps your daughter has food intolerances?

  12. cobbie....

     

    We are in the same boat. The tonsillectomy idea has come up twice for us in the last 2 months - and this is after treating aggressively for Lyme, co-infections, yeast, viruses, etc. for 2.5 years. The integrative dentist we saw last week did ART and found strep. This just confirmed the bloodwork that always shows elevated ASO and Anti Dnase-B. The dentist also asked me if he still has his tonsils - at the same time that he was looking down my son's throat! He is the 2nd doc that said you can hardly see the tonsils. Theory is that they are pitted from chronic infections and probably necrotized.

     

    Not sure what to do. We have plenty of supports on board if we move forward with the surgery - my DS16 has a central IV line and is always on abx plus we give him IV nutrition on days that he can't eat (due to chronic GI issues), so he could give the throat a rest during recovery. But I know it can be a rough surgery for teens and adults.

     

    Have you made a decision yet?

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