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Johnsmom

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Posts posted by Johnsmom

  2. OCD caused by other infection besides Strep

    in PANS / PANDAS (Lyme included)

    Posted

    Thank you MomwithOCDson. I remember you from a few years back. Your explanation makes sense and yes Colitis is autoimmune. It's right in front of my face but sometimes I think I just needed to hear it again. I need to be back on this forum and converse with all the smart moms! Tomorrow we have ANOTHER IEP meeting to discuss DS and the possibility of attending school 1/2 days.

    Thank you again!

  3. OCD caused by other infection besides Strep

    in PANS / PANDAS (Lyme included)

    Posted

    We have not had any immune tests in a while. I have not been on this forum for quite a few years. Not that I didn't need to be. DS is 14 and in eighth grade and I am about to pull him from school because he can't handle it anymore. He was just recently diagnosed with Colitis. We used to ride the roller coaster but not anymore. He has had no relief in months. I know the inflammation from Colitis can be causing the OCD, anxiety and depression but my gut tells me there's more to it. Right now he is on Steroid Taper (only been on steroids twice and a long time ago) and just started on Effexor.

    The GI Doc agreed to prednisone and then to get him to immunologist after. He is 5'10 and 115 lb bag o' bones.

    Any more words of advice would be appreciated. Thank u for responding. :)

  7. MS as infection based

    in PANS / PANDAS (Lyme included)

    Posted

    WOW! This is a great article! Thank you so much for sharing!

     

     

     

     

    A TV program here just ran a segment on two doctors treating MS as infection based (Chlamydophila (Chlamydia) pneumoniae) and treating with long term antibiotics. I couldn't help seeing some parallels. http://www.abc.net.au/catalyst/stories/3572695.htm

    The following website is for one of the doctors whose wife has MS and who appears to have responded to antibiotic treatment: http://www.davidwheldon.co.uk/ms-treatment1.html

    These sort of developments are incredibly exciting but research funding isn't exactly forthcoming. I know what I'd do with a lottery win!

  8. Choline and phosphatidylcholine

    in PANS / PANDAS (Lyme included)

    Posted · Edited by Johnsmom

    DS11 had phosphatidylcholine added to IV chelation therapy. We did a total of 14 infusions in all but it wasn't added until the last few. I can't say I saw any improvements but will check my notes. LLM where we're you years ago when the doctors were making my head spin with all of this? :D

     

     

     

    Ok, you will all think I've gone overboard on supplements. I promise I'm not scouring the internet looking for yet more pills to give my kids. Someone mentioned using phosphatidylcholine and seeing improved executive function. So I got curious and found this:

    http://lpi.oregonstate.edu/infocenter/othernuts/choline/

     

    excerpts (bolding mine):

    Choline is a precursor for acetylcholine, an important neurotransmitter involved in muscle control, memory, and many other functions.

     

    Without adequate phosphatidylcholine, fat and cholesterol accumulate in the liver

     

    Choline may be oxidized in the body to form a metabolite called betaine. Betaine is a source of methyl (CH3) groups required for methylation reactions.

     

    Choline is required to form the phosphatidylcholine portion of very low density lipoprotein (VLDL) particles. VLDL particles transport fat from the liver to the tissues (see Function). When the supply of choline is inadequate, VLDL particles cannot be synthesized and fat accumulates in the liver, ultimately resulting in liver damage. Because low density lipoprotein (LDL) particles are formed from VLDL particles, choline-deficient individuals also have reduced blood levels of LDL cholesterol (6). Healthy male volunteers with adequate folate and vitamin B12 nutrition developed elevated blood levels of a liver enzyme called alanine aminotransferase (ALT) when fed a choline-deficient diet. Elevated ALT activity is a sign of liver damage. ..These signs of organ dysfunction resolved when choline was replaced in the diet.

     

    Choline, when oxidized in the body to form betaine, provides a methyl group for the conversion of homocysteine to methionine by the enzyme, betaine-homocysteine methyltransferase (BHMT). See diagram. Despite its relevance, the relationship of betaine and choline to homocysteine metabolism has been only lightly investigated in humans. (my note - this seems to be important to those with MTHFR A1298 mutations but not sure exactly how)

     

    It's worth reading the whole article, which does say most people get adequate intakes. But past discussions of kids with elevated ALT and cholesterol made this article catch my attention.(that plus it talks about methylation, so you know I had to read it).

     

    Does anyone have experiences with choline or phosphatidylcholine or lecithin (which Yasko believes plays a role in a healthy BBB)?

  9. low IgG1

    in PANS / PANDAS (Lyme included)

    Posted

    Can anyone answer her question about low IGG 1. I am very curious. Thanks!

     

     

     

    [quote name='marilina' timestamp='1320316848' post='124835'

     

     

     

    I must say that I have found numerous post regarding low IgG1.

    (this is one:http://www.latitudes.org/forums/index.php?showtopic=5162&st=0&p=36504&hl=igg1&fromsearch=1entry36504 )

    MAYBE is something that is not so common, in fact have low IgG1 is considered rare. it is interesting that PANDAS parents may experience the deficiency of these immunoglobulins.

    My daughter was also deficient in IgG1

    what I have found so far is this:

    - That an IgG1 deficiency is rare (I mean not associated with other deficiencies)

    - That being deficient in IgG1 means that you can not fight viral and bacterial infections, where viruses and bacteria have specific protein: specifically, for example, there would be problems with the toxins produced by tetanus and diphtheria. but not only ... there are other viruses and bacteria that give problems with this deficiency

    - That the IgG1 deficiency is treated as CVID

     

    My daughter has had serious problems last year with the thetanus-shot. and therefore a lack of IgG1 may explain the severe CNS-reaction that she experienced . Also explain to me the devastating reaction to DTP vaccine at 10 months , vacine that has dropped her into Autism

     

    I ask you parents: HOW MUCH low are the IgG1 in your children?

  11. Cardiac involvement in children with PANDAS.

    in PANS / PANDAS (Lyme included)

    Posted

    Thank you to everyone for responding. We are on vacation now so I have to make it brief since we've been in the car for 12 hours and I'm getting the evil eye from DH.

    Diagnosis is mild mitral Valve regurgitation and mild left pulmonary regurgitation.

    Saw APNP not cardiologist. Didn't even pronounce the name of pandas right. Left off the 's'. Didnt want anything to do with strep lab results and didn't pay much attention to the fact I have RF on both sides of family. Thinks he has exercise induced asthma. Gave us inhaler. Asked her about fatigue. Said go to different dr for that. He's fine. Come back in 3 years.

    We absolutely hated her. Even told her about DS's illnesses at age 4 and 8 where he couldn't walk.

    University of WI children's hospital is where we went and now we will be trying for an allergy/immunologist but I'm not getting my hopes up.

    DS will be 11 in August. We've been battling this since infancy. :(

  13. Echocardiogram results

    in PANS / PANDAS (Lyme included)

    Posted

    Thank you for your response. Does your child have symtpoms? Mine fatigues easily and has complained that his heart hurts. I'm really flipping out here and thinking back to those two illnesses where he was unalble to walk. (yes he's been tested for Lyme and is clean as a whistle,) He is also weak, uncoordinated and his knee and hip joints are very stiff. Guess we will just have to wait and see what the doc says.

     

     

    Yes we have mitral valve prolapse with a slight regurgitation as well, but it's very common and not necessarily due to strep.

  15. Echocardiogram results

    in PANS / PANDAS (Lyme included)

    Posted

    DS 10 echocardiogram came back showing Mild Mitral Valve Regurgitation. Long story short. He had a spell at school and we went to neurologist after an MRI was ordered. DS has complained in the past of chest pain. He fatigues easily. We now have an appt with a pediatric cardiologist.

    Dr K diagnosed DS PANDAS in 2010. I have rheumatic Fever on both sides of my family.

    Can anyone else chime in here? Could DS have had RF and it went undiagnosed? He has had two illnesses (4 yrs old and 8 yrs old)where he had a fever for two days and was unable to walk.

     

    I'm totally lost here. Anyones kiddos have heart issues?

     

    Thanks

  16. Zinc and Anorexia

    in PANS / PANDAS (Lyme included)

    Posted

    DS 10 90 lbs takes only 20 mg a day. I've been told to give zinc away from iron. Was also told with young picky eaters to use liquid zinc. If they are deficient it will be tasteless. When it starts to taste like something to them (metal) that is when it is no longer deficient.

     

     

     

    it does look like you want to avoid really high doses:

    http://jennifercopley.suite101.com/zinc-helps-prevent-osteoporosis-a145397

    Zinc Toxicity

     

    Overdosing on zinc can cause stomach cramps, nausea, vomiting, diarrhea, and headaches. Regularly taking doses of zinc that are too high can actually reduce HDL (good) cholesterol and overall immune function, as well as contributing to a variety of other health problems. Adverse effects are associated with long-term daily zinc consumption at levels higher than the established tolerable upper intake level (40 mg for those 19 years of age and older, 34 mg for those aged 14-18, and less for children).

     

    Read more at Suite101: Zinc Helps Prevent Osteoporosis: Zinc Through Natural Sources or Supplements Supports Bone Health | Suite101.com http://jennifercopley.suite101.com/zinc-helps-prevent-osteoporosis-a145397#ixzz1u99DSjWy

  20. MRI

    in PANS / PANDAS (Lyme included)

    Posted

    DS10 had some kind of spell in gym class. The local doctor ordered an MRI. He had it today and he did great! Now we are set up to see pediatric neurologist at Universtiy of Wisconsin hospital. DS was diagnosed there when he was 5 with PDD-NOS. Since then we have been to a few DAN docs, ended up doing 7 lower dose IVIG's and just had two HD with Dr K. Last HD was 12-1-11.

    We dont get to see neurologist until June 4th so im wondering what he/she will be looking for. We of course suspect seizure activity. (I know an EEG shows seizure activity only when you are experiencing one) Will the Basil ganglia be inflammed? Will the neurologist find nothing?

     

    Any advice experience??

     

    thanks!

    Ann

  22. underlying infectiion and IVIG

    in PANS / PANDAS (Lyme included)

    Posted

    Thanks worried Dad.

     

    How spaced apart were your sons IVIG's with dr k? We have been to him twice. The first dose was in June of 2010 and our son had about 2 good weeks after month 3. Then we decided to go the monthly route with another dr. We started too low and never got DS up to 1.5. We decided to go back to Dr K in Dec 2011. DS was really good after IVIG but that I attribute to the Solumedrol. Then it was up and down for 4 months until a few weeks back when DS started doing really well. Luckily Dr k was able to see him and told us to up abx when we suspected re-exposure. He also said he would get us in immediatly if he slipped. Im afraid that has already happened. :( I had to increase his abx a week and a half ago and we haven't seen much improvment. DS was on regular Augmentin after the first hd IVIG but Zithromax always seemed to work the best for him. DS always has elevated ASO but never has elevated anti DNase and dh has had elevated anti DNase on several occasions.. I'm waiting to hear back from Dr K. He usually answers right away but I have not heard for him yet.

    Again, how spaced apart were your sons IVIG's ?

     

    Thanks!

     

     

    For our ds, IVIG alone didn't last until we got the right dose of the right abx ("Saving Sammy" dose of augmentin XR). In our case, we later found that our entire family had elevated ASO, so the problem may have been that he was always re-exposed after IVIG. (We did 3 rounds with Dr. K.)

     

    So - based on our experience - I think it's crucial to find the right dose of the right abx for your child, then go for IVIG as the "big gun" to get the autoimmune response under control. That gives your child the best chance to avoid re-infection and maintain their gains.

     

    Others' experiences may be very different. Just one opinion, for what it's worth!

  23. underlying infectiion and IVIG

    in PANS / PANDAS (Lyme included)

    Posted

    Is it a waste of money to have HD IVIG treatment when there is an underlying infection? DS10 has a constant rise in ASO titers but no rise in anything else. His last HD IVIG was in December. We saw some good results about 3 months after but then he slipped. I upped his abx dosage but that has not helped. Will someone please chime in whether or not another HD will help?

     

    thanks

    johnsmom

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