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Everything posted by ShaesMom

  1. Michele, Too bad you live so far away--I could use a partner in crime to help me eat my daily baking creations. My husband always gives me a little side glance and I just look and him and say"It's no different than you having a beer after work every day!" This makes me feel less quilty about my daily sugar consumption!!
  2. We are all managing this the best way we know how to. Are we making mistakes-absolutely! But we are also doing some things right and we are showing are children that we will fight for them no matter what the obstacle. We are breaking down doors and opening minds to this disease so that the next set of parents doesn't have to fight so hard. We aren't giving up on our children just because someone with a degree says "your child is mentally ill" and throws some drugs at us. This journey has been heartbreaking and not a path I would have chosen. A close friend lost a 23 month old nephew last week in an accidental drowning and the half sister who was babysitting is currently locked up in a padded room because she tried to commit suicide. No matter how difficult this gets--my whole family is still here with me and that is what matters. As you can tell, today is a good day at my house! Last week, not so much. LOL
  3. Susan, This is great news. I'm sorry that he doesn't believe in Pandas but like you said at least he is running some addt'l tests on her immune system. Pneumococcal Titers is the name of the test. Please let me know what you find out. As far as the allergies, my dd7 has had both the skin test and blood test for her dairy allergy since age 1 and both always come back positive. Kinda of scary that he doesn't believe in wheat allergies. Mommd-Can your son not have IVIG because he is IGA deficient? Sam
  4. Our Immuno Doc told us that we should never give a vaccine with a "live virus" such as the flu mist and that no one in the family should receive the flu mist either. He did recommend that everyone other than her receive the flu shot though. I have gotten the flu shot annually and swear by it but that is my opinion. I am currently undecided on the swine flu vaccine--leaning towards not getting one though.
  5. Why didn't you call me yesterday??????? I'm here for support!
  6. It would be nice if you could get her started on a thirty day dose of either augmentin, azithrymycin, or omnicef. But even a 10 day dose is better than nothing. We saw an improvement in less than 24 hours when she started augmentin especially in relation to her separation anxiety. Also, her overall energy level improved which was down to zero. She is currently on prophylatic erithimycin (I still haven't figured out how to spell it).
  7. To add to Kayanne's list, it can be found in the vaginal area as well. Your daughter sounds very similar to mine. She just turned 7. While she never really liked school, she would always go willing. But she also stopped going to birthday parties and other activities with her friends. She didn't want to leave us. Her behaviors flare up not only when she has a strep infection but when she has a UTI or catchs a virus. She also no longer has "normal" symptoms when she is exposed to strep. I wouldn't base your conclusion on whether or not she has Pandas on the blood results. Has she had any antibiotics recently and have you seen an improvement in her behavior while taking them? IMO that is a better indicator than the blood results.
  8. Dcmom- My older child is also 9. Sadly, I know his friends at school started teasing him because his sister was always crying and acting up at school. Their lunch times were piggybacked with her being first. Often she was still in the lunch room with a teacher when him and his friends would come in. She, of course, wanted to then sit with her brother and talk to him. Third graders aren't as forgiving as first graders and he found this very embrassing. I had a talk with the teachers and staff that we needed to come up with a better solution because the last thing I needed was two kids flipping out and of course they thought I was overreacting. My husband is wonderful person but he is not much help when it comes to making decisions or doing research. His response is always "well, what do you think we should do." So between being the full time parent dealing with her outbursts and anxiety I have also felt the majority of the burden when it comes to decision making and educating our family. At the end of the day, I am physically and emotionally drained. I have nothing left to give to anyone else. My story is not unique--I know every family on this board has a similar one. I really don't know where I'm going with all this except to say that this disease really sucks and I apologize if I'm not allowed to use that word.
  9. I believe that my dd has had Pandas for a lot longer than any of us has known. Very possibly since the age of 2 when she had her first step infection and some eating issues shortly afterwards. Through the years I have taken her to the doctor based solely on minor behavior changes that I had noticed. After awhile I started making the connection that these changes usually indicated she had an infection somewhere (UTI's were the most common in addition to the strep). A 10 day dose of abx always seemed to clear things up for a couple of months until we started the cycle over. At some point in Nov or Dec of last year she was exposed again to strep. She never tested positive or complained of a sore throat-only a tummy ache and a headache. Her reaction this go around has definitely been the most severe. I don't know if this is because it took us longer to get started on the abx or if it has just progressed through the years. She has been on erthyimycin since May. It has definitely decreased the severity of her symptoms and allowed to her function. However, this time around the anxiety, anger, aches & pains, and fatigue have not completely disappeared. I would say she has only recovered about 80%. This is why we felt it was necessary to move forward with IVIG. It has been a week now and she is still having some side effects--mainly exhaustation. Overall there has been a huge improvement but I can tell the exhaustation is taking its toll on her mood.
  10. Erica, PANDAS is caused by an autoimmune reaction to strep. This autoimmune reaction causes swelling in the basil ganglia portion of the brain. Do you think it is dangerous to NOT treat brain inflammation??? My experience and I believe the experience of others has been that each episode is more severe and debilitating. I don't believe that at this point anyone really knows what the long term effects of not treating Pandas may be. My dd has suffered from severe anxiety and anger. Other children have suffered from negative thoughts that they have been unable to control. Just imagine how it must feel for a 7 year old child to have to live with this daily not knowing how to stop it. This disease not only has affected my daughter but also myself, my husband and my 9 year old son. My son misses his little sister. He misses playing with her. He misses her attention. He misses the attention that he is losing from myself and my husband because we are focusing on her. I know he has been traumatized by her angry outbursts towards him and her inability to go to school. I know he has been traumatized by the hours we have spend trying to get her to take her meds. My daughter used to be the social butterfly in our family. Now she would prefer to sit on the couch and watch tv rather than go outside and play with her brother and friends. At school, she no longer was playing with the other kids but hanging out by herself. She stopped eating breakfast because she didn't want to go to school. She stopped eating lunch at school-we still don't know why. She didn't want to play sports this year. She didn't want to leave my side. Nighttime brought nightmares of danger to herself and her family. Pandas affects everyone in the family and not in a positive manner. I'm sorry that your husband is not on board with you. That has to make it even more difficult for you. Please know that there are many parents here who will support you. IMO-it is to big of a risk to not treat your child. Sam
  11. Nancy, I am so sorry for your family and your daughter that it took so long for her to be properly dx'd and then to get treatment. I sincerely hope that the IVIG helps her and that she doesn't have any remaining issues after a year. Thank God you found some doctors who were willing to treat her aggressively with the IVIG. Does she receive the recommended 1.5 grams/kg monthly or a smaller dose? Sam
  12. If anyone is interested, you can order a free IVIG play kit from Baxter (they make Gammagard). They also have some great info on IVIG on their website. https://webforms.baxterbioscience.com/immune/order.jspa
  13. Shae had her first infusion in the Ped's unit at the local hospital and then checked her blood pressure every 30 minutes as well.
  14. Nancy, I'm curious why you do IVIG monthly? Does your child have an immune deficiency as well as Pandas? Sam
  15. I emailed Diana and this was her reply "As far as Dr. K, Latimer and Swedo knows - it doesn't matter whatsoever. Dr. K has only pointed out that "it is, of course, EASIER TO SEE the transition to the positive" when the child is flipping out and then getting better." Sam
  16. Kathleen, Email Dr K or Diana. I don't believe your Ped has it right--I don't think your dd has to be in the middle of an exasperation. Sam
  17. Shae continued to have a reaction to the IVIG throughout the weekend. She complained of a headache and neck pain both Saturday and Sunday. We managed it with alternating ibuprofen and tylenol. Sunday around 6 pm she developed a severe migraine. I have a lot personal experience with migraines so I didn't freak out yet. I set her in the cool shower for about 20 minutes. She felt much better afterwards and fell asleep around 7:45 which is early for her. She woke up around 2 am because of a thunderstorm and when I went to check on her she was burning up. She was running a temp of 102.1 and complained that her head hurt really bad. I called the Immuno office this morning who once again did nothing. I made an appt with her Ped and she ended up giving her a steroid shot and nausea medicince. She also gave me a RX for Imitrex. She was still reluctant to say that Shae had Aseptic Meningitis but did feel that she had a very severe reaction to the IVIG (duh??). She told me that she would prescribe the premeds before her next infusion. About two hours after getting the steroids she was helping her brother clean his closet (Yah, I said clean his closet!). This is not a behavior we would have seen two weeks ago. Despite being sick from the infusion, she is definitely less anxious, more agreeable and in a much better mood. Like so many of you, our family has been on a roller coaster ride for the last seven months and I can tell you that I do not think anyone has raised their voice or gotten into a fight with one another in the last three days. It really feels like some level of peace and normalcy has been restored to our house. All I can say is Praise God.
  18. thanks Dedee, Shae started complaining of leg/knee last spring. She even stopped riding her bike and scooter. She would also complain a lot if we were walking to school or just walking a lot in general. At first we just thought it was growing pains then we just thought she was complaining because we didn't know any better. Her leg pain has remained during the last year and half. It was worse during her Pandas episode this spring. Two weeks ago she caught a viral infection with a fever and was unable to walk for about six days because of the pain in her legs. She wouldn't let us even touch them. The pain moved to her arms and lower back. We contacted four different doctors including Dr. K who just felt this was indeed viral and told us not to panic-yeah right. In May we saw a Rheumy who ruled out RA but didn't really give us any reason as to why her pain was constant. If you've read any of my previous posts you know Shae was dx'd with a Primary Immune Deficiency (PID) in June called Selective/Specific Antibody Deficiency. I've recently joined a forum of parents with kids who have similiar issues and many of them also have the "unexplained" leg pain. My research on PID's has shown that this is a common symptom. If you are interesting in learning more, send me a private email. Sam
  19. tylenol, benadryl and/or prednisone from what I've read from others. I would definitely recommend the tylenol & benadryl. Hopefully, Dr Latimer will premed for you so you don't have to worry about it. I would also recommend LOTS of fluids 24 hours before and during the IVIG.
  20. Sunday morning--She still has a headache, neck ache and is sleepy. I'm guessing she has a mild case of asceptic meningtits. Our Ped said all they do is treat the symptoms. I believe it lasts about 48 hours so hopefully tomorrow she'll be feeling better. Sam
  21. Dr. Stacy Houston, Doctors of Children, Lincoln, Nebraska Dr. Koybashi, Immunologist, Omaha, Nebraska
  22. Hi everyone, Shae started her IVIG on thursday. Everything went really well during the day. She didn't seem able to tolerate a very fast rate so we kept it around 32, anything higher than that and she started getting a headache. Because of the slow rate it took 8 hours just for the infusion. She came home from the hospital and headed outside to play with her friends until bedtime (for about an hour). She seemed to be feeling great. Friday morning at 7 am she was by bed telling me she felt really bad. She immediately started throwing up. She also had a fever of 101 and headache. We called the immuno doc's office who said to proceed with round 2 (thank godness). He doesn't believe in premed's so we went ahead and gave her some ibuprofen. the hospital started at a really low rate to see how she did. After about an hour she started complaining of a really bad headache and then that her neck was hurting. I called her Ped's office and told them everything that was going on (per the immuno's request that we follow up with the ped instead of them). We slowed the rate down again and watched her for about an hour. She had been sleeping the entire time we were at the hospital with brief periods of waking up to tell us she didn't feel well. Her neck pain seemed to be getting worse. I called Diana in a panic because I didn't feel anyone was doing anything and I was getting nervous about asceptic meningetis. Her Ped called back after lunch and had them stop the infusion for an 1 1/2 while they gave her fluids, Benadryl and Tylenol. She slept for maybe another two hours after the Benadryl and woke up around 4:30 and was able to stay awake for the rest of the evening. She even sat up in bed and played cards for awhile. Her neck still hurt and she had a slight fever but overall there was a definite improvement - even her color looked better. She never did eat anything yesterday and other than a few sips here and there didn't drink much either. the infusion ended up taking 10 1/2 hours. We were never able to get the rate above 25 because she would start complaining about her neck again. We didn't get home from the hospital until 11 pm- 14 hours after we left home that morning!! Very long, stressful day for everyone. Today she has some lingering neck pain and seems worn out. I still haven't been able to get her to eat or really drink. She has been taking Ibuprofen and Benadryl to help with the side effects. It would have been nice if the Immuno would have started these before her first infusion. I would definitely recommend giving them beforehand. I tried to pump her full of water and gatorade the day before and she did drink more than usual but appartantely more would have been even better. She hasn't complained of leg or knee pain in the last three days. Hopefully she'll perk up in the next day or two and we'll see an overall improvement. She is scheduled to receive a smaller dose of IVIG every 4 weeks because of the immune deficiency that she was dx'd with last month. Hopefully, she has a better experience. It sounds like there has been some misunderstanding regarding her dx and what the Pneumococcal titers are. I will post a separate message on that another day and hopefully clear up some confusion. Diana and I have been talking about it and think there may very well be a connection between Pandas and the titers test I'm referring to. Thanks to everyone for their thoughts and prayers. Sam & Shae
  23. Try contacting the Immune Deficiency Foundation at 800-296-4433. Ask them if there are any Immunologists in your area who work with kids who have Pandas. IVIG is regularly used for individuals with Immune deficiencies as is steriods. If they say no on the Pandas you may want to call an Immuno doc who is close and ask them personally. This gentlemen is listed as one of the contributors on their publications: Francisco A. Bonilla, MD, Phd Boston Children's Hospital
  24. Well, we got our immune doc to go ahead and schedule the IVIG before we have approval from Insurance. Shae goes in on Thursday afternoon for her first dose and Friday for the second. He is following Dr. K's protocol and dosing. She will start the steroid burst tomorrow. He didn't want to give her the burst but we somehow managed to change his mind. She will have it done at the local hospital in the Ped's ward with one of the infusion nurses monitoring her throughout the day. I'd be lying if I said I wasn't concerned about the procedure. I just hope everything goes okay. She will also receive IVIG monthly depending on insurance for the immune deficiency that was also dx'd. This will be a smaller dose done every four weeks at the allergy office for approx two years before they plan on retesting her Pneumococcal titers and Ig levels. If they are still down it sounds like IVIG for life. I did find out today that insurance is dening the claims for the Echo, EKG, & MRI that were ordered by the Rheumy claiming the autoimmune disease was preexisting. WHAT??? So, I guess our battles with the insurance company has officially started. Wait until they see the claim for the IVIG!! Sam
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