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Everything posted by ShaesMom

  1. The stress is really starting to get to me. I had a McD's cheeseburger for lunch today-I haven't had gluten or cheese in well over a year. Looks like I'm in for a fun ride this weekend. And my husband thought my brain fog was bad two days ago........
  2. Can't be of any help just wanted to send lots of hugs and prayers your way!!! I hope she wakes up tomorrow and all is well again. ME
  3. Thanks for all the kind words! My time away from ACN has actually been spent on the forum for EE and learning how to manage it. The ID Doc appt today was a total waste of time. We were there for less than 5 minutes when she started on her PANDAS speech. I immediately interupted her and asked if she believed in it. She rolled her eyes and grimanced and said "We'll get to that later." Of course by the time she was finished it was quite clear that she did not believe in PANDAS. The rest of the appt did not go any better. It was obvious that she had made her mind up before even seeing us that she was not going to do anything for dd. At one point she made a comment that led me to believe that she might have even thought I was there looking for more abx. She never took the time to ask any questions about what has been going on for the last six months. In fact, she never really took her nose out the lab results she had copies of. And she kept checking her pager every time it went off!!!! Anyway, by the end of the appt I was angry and extremely rude to her. I told her I would send her copies of the labs when someone else found the infection that was causing dd's on going sx's. She had the nerve to tell me to bring her in the next time she had a fever and maybe they could help her! And she had the nerve to discount her leg pain because "there is no redness or swelling and she seems to be walking just fine." The good thing is she got the "Mommy Warrior" in me all fired up again and I'm ready to go to war!! I did a lot of reading last night on Lyme's sx's and the connection with gluten intolerance & Fibromylagia (both of which I have). I have so many of the other symptoms myself that I made an appt with the GP on Monday to sign the Igenex form. I can't do much for Shae right away since she has IVIg tomorrow but I figure I can look into whether or not I have Lyme's. The bullseye rash I had was years before the kids were born. My husband seems to think it all makes sense and for once is on board without any convincing. In fact, he "lovingly" told me tonight that my brain fog has definitely been back in the last few weeks. Apparantly it was quite bad yesterday. I know my leg/muscle pain has been back with a vengenance as well. So it looks like I'm back for the long haul!
  4. Thanks Wendy. She is scheduled for IVIg on Friday.
  5. We met and exceeded our deductible in January and copay in February! And now that she has a Gtube and is formula only she qualifies for the Medically Handicapped waiver program.... So bring on the tests-they shouldn't cost me a dime at this point. What test do I need to request for the MycoPlasma (pneumonia ?)
  6. Will the tests you recommended tests for the coinfections as well?
  7. Sadly-I'm back after almost two years. I see lots of familiar names from the PANDAS board-good friend Suzan, KeithandElizabeth, SFMOM, mama2Alex and pixiesmommy (WOW!) to name just a few. This time I need your help and advice. Shae has had major setbacks in the last six months and we are back in that place where as a family we are emotionally drained and feeling out of options. I'm exploring Lyme's based on Suzan's gentle encouragement to do so and because about 19 years ago I had the infamous bullseye rash on my thigh after a camping trip to Kansas. I also remember brushing off a teeny tiny tic from that leg when we were camping. In the last eight years I have had my own health issues arise but that is for another time. We have known/suspected since the age of 2 that something was going on but couldn't convince the Doctor's. It took PANDAS to finally get the ball rolling. Just to get you up to speed where/what has been going for the last two years: 1/08 First signs of PANDAS-10 day abx tx cleared up sx 1/09 Separation Anxiety starts-other sx's show up over next few months 4/09 ASO titers 1200 5/09 Dx'd with PANDAS by Dr. K. PropABX started 6/09 Dx'd with Selective Antibody Deficiency-low Strep titers 7/09 HD IVIg sx's start improving 8/09 Start monthly LD IVIg - sx's improve every month 9/09 Dx'd with Eosinophilic Esophagitis (EE) Autoimmune illness of the esophagus usually caused by food. 10/09 Skin Testing-remove +IgE allergens from diet-total of 11 at that time Winter of '09/10 minor PANDAS sx's when exposed to strep or other infections. 10 day abx of Omnicef clears up. No biggy! 5/10 Remove gluten & soy based on positive gluten intolerance results & Mom's intuition on the soy. BIG improvements. She actually has the best summer of her entire life and no health issues. Also remove Peanuts & fish as they are common EE triggers. Postive blood work for EBV-no treatment by Doctor. 11/10 Endoscopy still shows EE. Picks up an infection the first week of November and another a week later. No longer the happy, funny kid. 12/10 I have Shingles the first week. She continues to pick up an infection with fever every week. Separation anxiety starts again. 1/11 Blood test + for Chicken Pox virus-Immunlogist assumes it is because she had two rounds of the vaccine at a younger age. Only attends 5 days of school this month because she is constantly ill with fever, headache, leg pain. Separation anxiety continues & minor raging starts. We officially pull her out of school. 2/10 Move her bed into our room because she is no longer sleeping at night. No more separation anxiety but she is with me every moment. Raging continues as do headache,leg pain etc... G tube placed in her tummy and no longer eating foods orally due to EE. Receives formula via Gtube. 3/10 Headaches improve once food is removed. Anxiety & Raging continue and start to escalate. She is becoming more violent. States she is unable to control herself but knows what is happening. She can't stop herself. Very remorseful afterwards. Leg pain & fatigue become worse. No longer riding her bike again & always asking for Aspercreme. 4/10 Omnicef given but it takes 7 days before we see any changes. Returns to happy self for three days. After rx is stopped-raging starts again. She has been on and off abx since November. Omnicef, Bactrim, PENVK (propabx until Jan) Keflex (propabx in Jan), Augmentin (SEVERE EE reaction to this med). Unfortunately, inactive ingredients in meds are one of her EE triggers so we have had lots of issues with meds in the last year. She has developed problems to Erythromycin, PenVK, Advil and Benadryl. Omnicef no longer seems to be working. Her ASO titers in the last two years have NEVER gone below 542. We have had them done numerous times. AntiDnase was 218 in January with 170 being normal. Docs don't seem to care that her titers have never dropped. We have appts in the next few weeks with an ENT, Neurologist & tomorrow we see an Infectious Disease Doc. So my questions are: 1) Did your kiddos ASO titers ever drop? 2) I know of at least three families that I mentioned above who have issues with gluten/dairy--Do others as well? Myself-GF/DF; son-GF; Shae-multiple food issues. 3) Have you seen severe raging with the Lymes? 4) Have you seen other Neurological issues? 5) What tests should I ask the ID doctor to run tomorrow? Should I make sure these tests are done by IgeneX lab vs someone else? AND 6) Will monthly IVIg and all the abx screw up the test results? Long enough post for now. Thanks everyone-I know I can learn a lot from all of you.
  8. Yes, she did receive 2 gm/kg over two days the first time.
  9. So no worsening of symptoms, even temporarily? No setbacks? What dose is your daughter on? What flavor was her PANDAS? (I mean how severe and what were the prominent symptoms in her presentation?) No worsening of symptoms or setbacks unless she became ill. After each IVIG we saw a decrease in various symptoms (one month it was anxiety; the next month it was eating disorder; etc...) She receives 20 grams every 4 weeks which is about 1 gm/kg. She was pretty severe at her worst. Raging, severe separation anxiety, vocal & motor tics, food issues, sleep issues, joint pain, dilated pupils, about the only thing that she didn't experience was OCD type behavior that involved counting or hoarding. We actually see an increase in fatigue and joint pain the week before her next IVIG but she always improves within 12 hours of the treament.
  10. Peggy, Sorry to hear you are not having great results. My daughter has continued on low dose IVIG since last July for her PID and we have had no issues. I feel confident saying that I believe all of her PANDAS symptoms are gone. However, it did about six months of IVIG to reach this point. I hope you find some answers. Sam
  11. Yes, she has been tested by blood for celiac disease, and it came back negative. Also, the GI doc said he saw no signs of celiac disease duing the endoscopy. An "intolerance" to gluten will not show up on the blood work. Blood work and biopsies are only positive when there has already been damage to the villa. Enterolab does a stool test which tests for non celiac gluten intolerance. I had negative blood work, positive stool results and extremely positive results after removing gluten from my diet.
  12. ??????? Did the positive food allergies show up through skin testing? Not true food allergies?? Sorry, doesn't quite seem right to me. The eosinophils and reflux can be signs of a disease called Eosinophilic Gasteritis. The website www.apfed.org can explain it better than I can. My daughter has changes in mood when she eats the allergen foods.....
  13. My daughter has had problems with both chronic constipation and encopresis since the age of 2 (she'll be eight in July). We've been seeing a GI doc since the first signs but have always been told that it was just behavioral and we needed to "repotty" train her. Baloney! Last year after she was dx'd with both Pandas and an immune deficiency I made another appt with the GI Doc determined to have further testing done. The GI finally agreed to do an Endoscope and Colonoscopy and they found that she has eosinophilic cells in all her GI tract including her esophagus. These are allergy cells. So far we have found that she is allergic to 11 foods but she goes in again on Thursday for another Endo & Colon to see if anymore cells remain. Her constipation has improved greatly but is not completely gone. I have noticed a pattern in the last eight months with the encopresis-whenever she picks up another infection of any kind the encopresis returns. Once we start her on a treatment round of abx the encopresis disappears immediately.
  14. My daughter has been dx'd with an immune deficiency disease in addition to the Pandas. You can learn a lot about PIDD's at the following websites: www.primaryimmune.org Click on the publications link and then Patient and Family Handbook. Chapters 1, 2 & 10 are a good place to start. Also www.jmfworld.com This site has a page where you can find a local doctor who specializes in immune deficiencies and another that gives you a four step breakdown of what tests should be done for immune deficiencies. We have a great Immunologist in Nebraska who told me that it is important to find someone who is a CLINICAL immunologist who looks at the immune system as a whole functioning together whether than a separate doc for allergies, another one for the immune issues, and yet another for the asthma. If your child is dx'd with an immune deficiency insurance should cover the IVIG. My daughter received 2 grams of IVIG over two days for her Pandas (this amount is consistant with other autoimmune illnesses) and now receives a smaller dose every four weeks for the PIDD. BCBS has paid for everything so far. PM me if you have questions.
  15. Hi Lori My daughter has a severe anaphylactic allergy to dairy that we have known about since birth (she will be 8 this summer). I was dx'd with Fibromyalgia a few years agos and because of that I recently have adopted a GFCF diet as well. I can tell you that when I eat dairy I have severe diarrahha, brain fog, my hands and feet get really cold, and fatigue to name a few. I have had a much harder time going without dairy then her because I know what I'm missing. However, cooking dairy free has become second nature. If your daughter can still have soy, there are two mainstream margarines that are available without dairy. With these products I have been able to use many of my normal recipes and keep them dfree. Eating out has been the hardest. Last September we found out that my daughter has an additional ten food allergies that we were unaware of. After doing some new research, I discovered that it is quite common for individuals who are allergic to dairy to also be allergic to cow and/or pork. There is also evidence that connects dairy allergies with cat allergies. There are different types of food allergies. Some of IgE mediated which are generally found through skin or blood testing. There is another type which is IgG mediated which is more difficult to test for. There is also something called Eosinophilic Disorders which are allergy cells that are found in the esophogagus, tummy, and colon (Not sure-these may be IgG mediated as well). My daugher has both IgE allergies and an Eosinophilic Disorder. I do not have IgE allergies-mine are more likely IgG. I don't post often or visit latitudes much because my daughter is recovering from her Pandas quite well. However, if I would be more than willing to share any dairy free tips that I can with you. Just send me a PM if you're interested. Sam
  16. I think this is a great question. I know IVIG is talked about a lot and I think I have quite possibly read every post on this site that comes up in a "search" regarding it. I believe we will be doing IVIG for our son in the not too distant future... in my head, I know it's what needs to be done... but I am so scared... I'm sure some of this angst comes from a state of constant stress and compromised ability to pretty much handle anything at this point... but when reading Dr. K's website section on IVIG... I zero in on: * Severe allergic reaction * Aseptic meningitis * Renal Toxicity (acute renal failure) * Vascular Thrombosis * Hyperviscosity Syndrome I know it is ridiculous to do this, but it's like I am overcome with fear... Dr. K's site also goes on to say: “It appears however, that these complications may be directly related to the brand of IVIG used. Products where sugars (sucrose in particular) have been used as stabilizing agents may increase the likelihood of some of these rare complications.” For the people who have done and/or are currently doing it... what is the best brand to use??? Thanks! - Karen Karen- The side effects of IVIG do sound quite scary. You have to keep in mind that these are VERY rare and that IVIG is given daily around the world to patients with Immune Deficiencies, MS, and other diseases. The nurses at our infusion center are specifically trained to administer the meds and there is always a doctor in the facility. I have a friend whose son has been receiving IVIG for over five years without incidence.
  17. No setbacks after Ivig with Pandas symptoms. She does occasionally have a headache about 48 hours later. Gamunex
  18. Diana Pohlman, who created the website pandasnetwork.org can give you many examples of great results from IVIG. You can contact her through the contact link on the website. Also, read the case studies on the website. This forum in my opinion is not the place to ask for examples because if the IVIG worked, then they aren't on the fourm, at least not much. Also, you could ask Dr. K your question. He has treated literally hundreds of patients with IVIG and has a fantastic success rate. E-mial him at Drk@webpediatricsl.com. The general consensus is that monthly low dose IVIG is the wrong approach. Alex I'm sorry Alex but I have to respectly disagree with you and the Doctor's who state that monthly IVIG is not the right way to go. My daughter has been receiving monthly IVIG since last July (2gm/kg over 2 days in July and now 1gm every 4 weeks) and currently she has absolutely no signs of Pandas. It took 4-6 months before all symptoms were gone but she is doing amazingly well at this point. Her brother tested positive for strep this morning and has been coughing on all of us this last week and I haven't seen any flare in her Pandas. In the past, she would react immediately if she was around anyone with strep. IMO-the monthly dose of Ivig has actually allowed her body to heal and stopped the autoimmune reaction.
  19. Yes, Allie's immuno said they (at his office) prefer to do it every 3 weeks because it keeps the IgG levels more stable. I'm getting a bit anxious waiting for insurance approval- seems like we've been getting a lot of "guff" from the insurance companies since the beginning of the year (new policies or something), and, though the immuno seemed VERY confident that there would not be a problem...I can't help but think there will be. It is so great to hear that your daughter is finally getting treatment. I hope insurance comes through and all goes well.
  20. Okay, I did the lbs to kg conversion and that's @ 1gm/kg every 4 weeks. I think that's about what Allie will get every 3 weeks, and w/ the discussion on here about "proper" IVIG dosage, I was worried it wouldn't be enough and I'm afraid we wouldn't be able to get the higher dose, so really, really happy to hear the lower dose is is effective for you! I like your immuno's attitude! Her dose is consistant with what is "normal" for the SAD side of her dx. She is not being treated with monthly IVig for the Pandas. She did receive a dose of 2gm/kg over two days back in July for the Pandas. The larger dose is consistant with what other autoimmune illnesses are treated with according to my Immuno. I wish Shae had IVig every three weeks because she seems to have a return of fatigue and leg pain for two to three days before IVig each month.
  21. I was negative for Group B during my 1st pregnancy but my son developed Group B strep at two weeks of age that progressed into Meningitis. Of course, the doctors tried to tell me it was from the delivery. I believe evidence now shows that a child older than 1 week can actually get GBS from someone other than the Mother. He does not have Pandas. During two subsequent pregnancies I was tested and retested-always negative for GBS. I was also given abx at the time of delivery. My daughter with Pandas was my third pregnancy.
  22. Yes-she did have OCD and tics. Her OCD was mainly obsessions, severe anxiety, repeating words and phrases, fears, food issues, minor hoarding. She never really had issues with contamination or counting that I'm aware of. Her tics were never exaggerated large movements. She had verbal tics, a sniffing tic, always had to have something in her mouth etc... All OCD and Tics have disappeared. These were actually some of the first behaviors to disappear. Raging seemed to be the one that hung on the longest.
  23. She receives 20 grams of Gamunex every 4 weeks (she weighs about 44 pounds). Peglem-I really don't know the answer as to whether or not this will be lifelong. Our Immuno has the additude that if it isn't broken don't mess with it--if the insurance company is paying don't take a chance of screwing things up by taking her off for a few months to retest and then try to get her approved again. Currently, we cross our fingers every month to see if they will pay eventhough we were preapproved. The insurance company is three months behind as it is right now. He wants to re-evaluate her in two years. She has an egg and pork allergy (and Pandas) which makes immunization highly questionable and unlikely. So, I'm guessing he will just look at how often she has been sick in the last two years-recheck her titers & Ig levels (but those won't be accurate if she remains on IVIG). I really don't know what he plans on doing and I'm trying to stay focused on right now and how she is doing.
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