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ShaesMom

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  1. So we both saw the Doc yesterday. He did a full new patient workup on her and I got a quick 15 minute overview so I could be an established patient and get treatment. I had my paper and pen out but once he started talking I never bothered to write anything down. :wacko: I should have given the paper to my husband.

     

    I liked him-he was very nice and has been treating TBI for 20 years. I don't remember his exact numbers (can you say "brain fog") but it was something like he has tested 450ish patients in the last couple of years and 370ish have come back with positive ASO & Anti Dnase B titers. He has had 5 children with high titers get their tonsils removed and 4 have completely improved and 1 is 70% improved (strep wise & raging). He uses the WB and does some other testing but does not test for the coinfections-just treats for them based on sxs.

     

    I specifically asked about MycoP because she has never been tested for it but he didn't want to test for it (I would though). I think I would also like to know for sure if she has the other infections or not.

     

    He gave me Rx's for Lyme, Babesia & yeast. He gave her Lymes, Babesia, Bartonella, & yeast. He did not say "Yes-I think you have TBI's" but would rather wait for the WB results and abx trial. I'm going to have my ASO & Dnase checked and then start on Ceftin. He gave her an Rx for clindamycin & alternating amoxicillan for the strep to start after her blood is drawn for the WB in two weeks(waiting on IVIg) and then will start on Zithromax after WB results are back if necessary.

     

    I'm very intrigued by the fact that Pixiesmommy's Doc has other patients with EE. I feel this complicates TBI treatment as did the MO Doc. The MO Doc also talked about some alternative treatments in regards to the EE that just don't jive with what I know about EE. He had never heard of EE and I had to explain it to him. So-I think I will keep the appt with the other Doc for her and get a second opinion. It also gives me hope that maybe her EE is infection related from the Lymes and may be curable. That would be a miracle!!

  2. Are you seeing dr C or Dr R? Dr. C will be very thorough, Dr. R's nurse will be very thorough but she is a little scattered. Write down your questions. Also, for now or in the future, start a binder with lab results and track dates and treatments.

     

    Good luck...

     

    Cobbie

     

    We are seeing Dr. C. I've heard good things about him. Have you seen him?

     

    I already have two 3" inch binders filled with her medical history so I think I'm prepared in that area. Last several months of sx are written down in planner so I'm good in that area too I hope.

  3. I called a Doc in MO who happened to have a cancellation for tomorrow! So, I'll be able to get Shae in for a full visit and myself for just a 15 minute visit to become an established patient. It's a five hour drive so we will be leaving after school today.

     

    So--how do I prepare for this on such short notice? What is the most important questions I need to be asking?

  4. Thanks everyone. I will look into the NAC this weekend. Her next scope isn't until May 24th so I'll call IgeneX on Monday and ask some questions.

     

    I'll call the LLMD on Monday as well. There is a Doc in Missouri who comes highly recommended from several others on a different forum so I may call his office as well.

     

    She has actually refused to hook up her feeding tube a few times at bedtime when she has been raging and even just in a "mood". So-sooner would definitely be better under those circumstances.

  5. Lets just say... I can't wait for your results either.

     

    AND, I know of one other parent 'Autism/Lyme' child who had/has swelling in the esophagus. I do not believe the child was formally diagnosed with anything nor have they recheck since original scope. The child has made slow improvements with treatment with other symptoms. He was diagnosed with Babesia/Bartonella and Lyme.

     

    If Lyme is involved I'll be curious to see if this particular disorder improves for her.

     

    -Wendy

     

    I'm with you on that thought Wendy. I think I'm going to ask her GI if they can actually test for Lyme's when they do the biopsies.

  6. By the way... do you intend to keep the feeding tube? It is a good way to administer medication if it turns out it is Lyme. I would recommend keeping it in until you figure things out.

     

    -Wendy

     

    Well the feeding tube (G tube in her tummy) wasn't really a "choice" we made per se. It is her sole source of nutrition-she does not eat any foods orally. Her meds are already administered through the tube. Her esophagus is swelling shut due to an autoimmune reaction to foods. The tube has been in place since February so that we could remove all foods and try to turn off the autoimmune reaction. We return to Cincinnati in May for another Endoscopy. If the path report comes back clean then the tube will stay in place for years while we add back 3-4 foods in their purest form over a 3-4 month period and then rescope. According to her GI most kiddos only find one safe food out of the 3-4. It is a very long process. If the scope does not come back clean then our next step is swallowed steriods for life to help with the inflammation. This sucks because we will only be putting a bandaid on the problem rather than solving it. We hope to avoid the steriod route at all costs. Swallowed steriods means that you take the medicine from inhalers and mix it with splenda to make a slurry and then swallow it. You want it thick so it will coat the esophagus. NASTY! http://www.apfed.org/

     

    LLM-So in response to your comment about diet and probiotics....No she is not on a special diet for inflammation, probiotics etc because she cannot eat food. Supplements also present problems because if I can find one that is safe it will have to be trailed. She also has 15 IgE food allergies including dairy, soy, gluten and pork. Pork is very important because pork=gelatin=gel caps which means no pills. Also products like glycerol, magnesium stearate, mono & di glycerides are pork derived. We have to have Tylenol compounded.

     

    Her therapist has suggested breathing exercises, games to redirect her brain, petting the animals etc... IF we can get her to do them they work. Unfortunately for us there is no gradual build up before she explodes. It is literally like a switch flips in her head and once that happens there is no stopping her until she is done.

     

    Iowadawn-Hi! Yes our appt is with the same physician in Grinnell.

  7. I'm guessing he might actually be referring to Selective Antibody Deficiency with your son failing the streptococcal titers (Prevnar vaccine). If I'm correct it means your son did not mount a response to some of the 14 different titers of strep. There is a lot of disagreement among Immunologists as to whether or not this qualifies as an Immune Deficiency Disease. Standard protocol is to revacinate with PneumoVax (depending on the child's age) and then retesting the titers to see if a response is mounted. Keep in mind that the vaccine is loaded with strep although supposedly not Strep A. You can find a couple of paragraphs on it here at the end of the chapter:

     

    http://www.primaryimmune.org/publications/book_pats/e_ch10.pdf

     

    The Prevnar website used to have a cute little explanation a couple of years ago: http://prevnar.org/pneumo/pneumo_iq.aspx

     

    I would get a copy of the test results.

  8. I scheduled an appt with the LLMD that pixiesmommy sees but I can't get us in until the end of June. My family cannot survive two more months of the daily raging attacks. Plus I'm really concerned about what this is doing to her brain! She is seeing a behaviorial therapist already but won't practice the techniques suggested to us.

     

    Is there anything I can start before our appt to help alleviate the bipolar like behavior?

     

    Can someone explain the EMF stuff to me?

     

    And what about mold (which she is highly IgE allergic to)?

  9. Good Luck with the ID appt next week. We saw one last week and when I asked if she believed in PANDAS I got the "eye roll" and "face grimace" in response and then a 20 minute lecture about how it doesn't exist. I was then told that there was no reason for dd to be on propabx and that there was nothing she could do to help us. She did say she believed in Lyme when I asked but would not do any testing for us.

  10. Hi Fallingapart! It sounds like you have finally found some answers for your dd-what a blessing! I'm so glad to hear that you have her on the path to healing. You are another one of those Mom's that I have thought of often as well.

     

    I don't know if we are officially on this Lyme boat just yet but I am looking into it. She was doing amazingly well and I really thought her PANDAS was in "remission" but things changed last Novemeber and have continued to get worse. She hasn't had any known exposure to strep this year that we know of and has been out of school since January so I strongly feel something else is going on. Here is the post where I try to get everyone up to speed with what's been going on...

     

    http://www.latitudes.org/forums/index.php?showtopic=13228

  11. I'm having IgeneX do the WB IgM & IgG. My GP ordered some of the co-infections and CD57. I had those drawn at LabCorp so my insurance can pay for them.

     

    I spoke to the Dr at IgeneX yesterday and he told me to wait on Shae's labs until a couple of days before her next IVIg so that will be in about three weeks.

     

    So now I wait.....impatiently......

  12. We saw something similar with my dd last winter but it was only when she was around her brother. She would be great and then within 15 minutes of being around him she would start to have major sx flares. Turned out he had strep. Took her about 7 days after we started treating him to calm down when he was around.

     

    IMO if I were you I would have a rapid and culture done on yourself.

  13. I want to respond to Zeva's original post.

     

    My dd was dx'd back in 5/09 with PANDAS, 6/09 with an Immune deficiency disease and 9/09 with another autoimmune illness called eosinophilic esophagitis. In July of 09, she received hdIVIg and has continued to receive ldIVIg every 4 weeks since. She was also placed on proabx. We immediately saw results with the hdIVIg and continued to see an improvement after every IVIg. By May of 2010, I would have had no problem saying she was in remission with the PANDAS. We did see two blips in the prior winter (09-10) but they were quickly resolved with a treatment of Omnicef. In fact, I became so comfortable with how she was doing that I stopped posting and reading because I wanted to put the whole thing behind me and move on.

     

    In November 2010 my dd became ill with some probable viral infection. Two weeks later she had a double ear infection. Two weeks later another fever and mystery infection. The following week another infection, etc.... We finally pulled her out of school in January and she hasn't been back since. To our knowledge, she never came in contact with strep this year (504 plan states school has to call us if in her grade or brother's classroom). No one in our family has been sick either this year except her. Since January her behavior has become increasingly more aggreviated and violent. She is having raging attacks that are 10 times worse than anything she had with PANDAS. No other sx's of PANDAS have returned (tics, OCD etc...). My dh and I are beside ourselves with what is going on. My gut tells me this is something more than PANDAS.

     

    So at the insistance of a great friend that I have stayed in contact with from this forum and now the Lyme's forum, I have decided to pursue possible Lyme's as a dx. WHY? Because almost 20 years ago I had a bullseye rash after camping in KS. I never developed any sx's of Lyme's myself so over the years I just forgot about it. In the years since-I've been dx'd with SAD, Fibro, IBS, RLS, brain fog, gluten and dairy intolerance, debilating fatigue, a PVC and I have experienced peripheral neuropathy, symptoms which could easily be Raynauds, problems concentrating, memory issues, etc, etc etc.....

     

    I noticed a pattern with my PANDAS dd around age 2--Everytime she became ill with any type of infection she would have significant behavorial changes. Often these changes were the only thing that would alert me to illness. She has also had unexplained fevers her whole life-high fevers of 103 that never seemed to stop her in her tracks. She also always seemed "not well". I spent the next 5 years telling my husband that I believed she had some kind of infection somewhere in her body that the Doctor's just couldn't find.

     

    So I sit here today-after three months of the worst heXX that we have lived through yet-amazed at how many sx's both of us have that could easily be Lyme's. I wish two years ago when I first started on this forum that Lyme's would have been a topic of conversation among of us. I wish somebody would have said "you know what-maybe you should test for Lyme's too just to be sure." I really wish someone would have told me 20 years ago to get treated myself but I'll have to let that one go and move forward with whatever the outcome is. <_<

     

    I ordered two test kits from IgeneX on Friday....

     

    (By the way-a large majority of the Moms who were posting on the PANDAS forum at the same time as myself are now Lyme's Moms)

  14. just curious why she's not still on the omnicef if you were seeing improvements with that abx? why switch to keflex? i do believe they are in the same family - ?

     

     

    Her Ped will prescribe Omnicef as a 10 day treatment dose only. Keflex is her Proabx. I'd love 30 days of Omnicef but the Ped won't go for it.

  15. I just keep saying to myself...this is the disease...he doesn't need psych meds...It can get so tiring! Sorry I'm really VENTING.

     

    We are starting this possible Lyme's journey so I can't offer much in the form of advice about Bartonella. I have lots of experiene with the out of control raging these days though. Your quote above is the same exact thing I have been saying to myself several times a day for weeks now. You are right - it is exhausting. My dd's rages always start at 10pm as we are headed to bed and can last for two hours. No one is getting any sleep.

     

    Hang in there and take the time to really enjoy the good moments. Sending hugs and prayers your way!

  16. She is completely no foods and meds are thru the tube as well. The purpose of the tube and elemental formula only diet is to get rid of the swelling and autoimmune reaction in her esophagus. Once the esophagus looks clean, we can start adding back 3-4 foods in only their purest form over a three month period and then she will have to be rescoped to make sure everything is still clean. And then we repeat. It's a long, slow process. Supplements, herbs, detox stuff will all have to go thru a trial period as well. If it turns out she does have Lyme's it is going to be a real challenge to manage meds, EE triggers/reactions, and herxing.

  17. Shae's having a very difficult time. The moods are starting to last 24/7. I haven't had much chance to read about Herxing yet. Is it possible that the Keflex she is on is causing her to Herx? She was on it for about 6 days prior to a 10 day dose of Omnicef (saw improvements on day 7) and then I started her back on it as soon as she finished the Omnicef. IDK, maybe I'm just grasping at straws here. She started on Keflex back in January and we took her off for a few weeks after the tube was placed. Raging was up and down until we took a break but then her anxiety was so high from the tube surgery that she just needed a break from everything stressful.

     

    She was on Augmentin back in February I believe and she had terrible raging attacks until we stopped the meds. At the time I assumed it was because of the orange flavoring in the meds. Oranges are one of her suspected triggers for her EE disease. Too many XXXX diseases to keep track of. :(

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