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ShaesMom

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Everything posted by ShaesMom

  1. Not helpful in our situation. She is actually allergic to the processed pork products in the form of glycerin and the flavorings.
  2. Wilma-do you know if your dd has any food allergies or intolerances? My dd has multiple of both and is also unable to take many OTC & RX meds because of the inactive ingredients. Raging is one of her symptoms as well when she takes something she shouldn't. She also gets really gassy & has a headache. Everything you mentioned has dyes & flavorings added. I am facing a similar situation as you but only in conjuction with the abx's & supplements needed for the Lymes treatment. I haven't found anything that she can take yet that is completely free of all allergens/triggers. Compounded meds are great but VERY expensive & Insurance doesn't pay. By the way-we compound Tylenol and I'm thinking of having Benadryl compounded next.
  3. We've been dealing with Chronic constipation & encopresis since the age of 2-way before PANDAS and everything else. Nothing we tried has worked for very long. My dd has told me that her body just doesn't tell her when it is time to go. Other times she can go great without any problems whatsoever. I don't want to push the Lymes issue on you but take a look at this article and see if any of it fits. The chronic constipation, encopresis & "putty" like poop that doesn't respond to normal treatments fit my dd to a tee... http://www.lymeinducedautism.com/images/Belle_s_Palsey_of_the_Gut.pdf
  4. Not familiar with that product. Just wanted to send hugs your way! If I may ask, what are your dd's gut issues?
  5. Scarlet fever is the first thing that comes to my mind. Did they only do the rapid? I think I would want a 72 hour culture & strep titers ran.
  6. My dd has IVIg monthly (since 7/09). We premed with Tylenol and Hydroxzine day of and for two days following (doses based on her weight). According to our Immunologist/Allergist Doc's office studies show that the Hydroxzine is better than Benadryl. You need a Rx for it. The MOST important thing you can do is drink ALOT of water the day before, of and after. The water flushes the concentrated meds through the system. You can Premed all you want but if the kiddo doesn't drink enough water he/she is going to have problems.
  7. Uhhh-sounds an awful lot like another family member may eosinophilic esophagitis........
  8. OMG-I bet you are just freaking out! Don't know the answers to the IgeneX questions. I didn't see anything on the test order form I have. My DH had a work picnic yesterday and I found a tick on my dd's feeding pump backpack. I was holding it to my chest while they were doing a raffle so I'm guessing it came off my coat. I made everyone strip in the garage and take showers right away. Hope the test comes back showing no Bb or coinfections! I would try to get him started on abx right away if it were me.
  9. I saw well knows Celiac doctor and researcher yesterday at the gluten free expo in my town, Dr. Fasano. He was talking about how in the past, they said Celiac was just a northern european problem, like someone drew a line down the globe and said all the Celiac's get on one side and everyone else on the other. That thought has changed by now so hopefully it will continue to get out there about lyme. I thought a lot about lyme in his speech because so much of the symptoms overlap. He said that they don't know why the presence of celiac has increased so much over the past 20 years. They've been doing a study since 1974 (not sure the specifics of what the study was) but what they found was the result of the study was that the number increased every 10 years by (don't quote me...) triple I think. I could not help but wonder if these people have lyme disease and it triggered their Celiac. Because they also don't know why some people can have the specific gene and never get Celiac. I did not get a chance to talk to him about it but I hope to try to email him. I really want to know his thoughts on the subject. Sorry, went off on a tangent there! Susan I think it may be a very correct tangent. As a family of four with three having serious GI issues and now the likely possibility of Lymes I'm really leaning towards thinking that the Lymes may have caused the GI issues. Eosinophils are white blood cells that attack PARASITES. My daughter and son both have high numbers of them in their esophagus and dd has them in her colon and stomach as well. I was supposed to have a scope in March but had to sideline it due to other health issues. I know eosinopils have nothing to do with celiac disease but myself and both the kids have tested positive for non-celiac gluten sensitivity thru Entrolab and my ds's scope also showed the 1st signs of celiac but again not enough damage for a dx. No family history of NCGS or celiac until me--and I was the one with the bullseye rash.
  10. Going to print this article and send it to the pediatric stomach doctor that said my ds was "perfectly fine" after an edoscopy and prescribed anti-anxiety medication. Thank you. Did you get a copy of the path report??
  11. Well for myself-yes I believe it is important that the Doc also believes in PANDAS (or has at least heard of). There is another Doc who has an office in IA & IL that some members on this forum see. We have an appt with him in June for a second opinion because it sounds like he is familiar with the other illness my dd has called EE. Check your PM's
  12. We are just at the beginning of our Lyme's journey after battling PANDAS among other things for the last two years. Find a Lyme Literate Doctor (LLMD) in your area ASAP and consult with them. I believe this organization can send you info for LLMD's in your area. http://www.ilads.org/ We just saw an LLMD in Columbia, MO last week and I believe he has a practice in Cape Girdau (SP?) as well which is closer to TN (?).
  13. Sorry but that makes me MAD! How come all the neighborhood kids have to wind up at your house when you are the one with sick kids??? If that mom can't give you sympathy, then just skip the explanation and say "we can't play today." For goodness' sake, you must be exhausted. TAKE A BREAK. Bolt the door, put a quarantine sign on it, and get some good videos to watch together or something. Or go to a park, take a long drive, whatever. I'm getting carried away here... You do what you think is best for your family. Prayers for a good weekend... Thanks for the empathay. It's not just the kid that is sick-the Mom is too (me). I don't usually mind if the kids are over here most days but when it is every day of the week it just reaches a point where I feel like it is someone else's turn to babysit. Especially during the summer when I am home all day with both my kids and then the neighbor kids come over as soon as they get home from daycare. I would think my kids would want to get out of our house & go somewhere else but no they all still congregate over here. One day the doorbell just kept ringing and before I knew it there were 12 kids in the basement! I put an end to that one quickly!
  14. Just started Cure Unknown today so I'll start that one next. Love to brainstorm sometime!
  15. Too funny! I just finished reading this from the link on Lymenet! I'm going to print it out and take it with to her next GI appt in Cincinnati next month! Hopefully he will have an open mind-especially if her scope does not come back clean. It definitely seems to fit my family to a T since myself, my ds and dd all have the same GI issues. I also found the part about encopresis extremely interesting since dd has had severe chronic constipation & encopresis since age 2 that nothing has been able to fix (and its putty like). I'm so sick of Doctors telling me that she needs to "sit on the potty for 10 minutes after every meal." I've been trying your techniques for CBT. I haven't been very successful but I'm going to keep trying. Her therapist is on board and trying to help as well.
  16. The lab results for myself from LabCorp: HNK1 (CD57) 28 Babesia-neg Bartonella-neg Myco-neg HHV6- 4.98 (> .99 Positive) Still waiting on IgeneX results
  17. My thoughts & prayers are definitely with you and your family!
  18. No response from your Doc as of yet Pixiesmommy. I've managed to keep her away from the neighbor kids so far but it helped that we were at the behavioral therapist this morning. I tried to have a talk with her about my thoughts on hanging around with the little girl and was met with nothing but opposition. Why does this have to be the kid who thinks she is smarter than Mom & Dad. It's really windy here and the next door neighbors trampoline's net has blown down so that will keep them off of that today. If they can't play outdoors they all usually end up over at my house (all 8 of them and sometimes some extras). Ugh!! The Mother is one of those who tunes out/never bothers to ask about Shae's health. She was pretty nice about it at first but then once it became chronic she kinda disappeared - YKWIM. She is definitely not someone I can approach and say "dd needs to avoid playing with your dd for awhile."
  19. IgeneX told us to wait until right before her next IVIg before we have her labs drawn and keep her off abx. Last night my entire family was awake until 1 am because of her raging. It started at 10:30. Luckily there was no school today so my ds was able to sleep in as were myself and dd. The attack started because it was time to hook up her G tube for the night feeding. She refused and all he.. broke loose. She ended up losing half of her calories for the day and she is already tiny and can't afford to miss calories! This is not the first time she has refused to hook up during one of her episodes. (The rest of the time she does just fine with the tube & feedings). She can't keep missing feedings! I'm afraid her body is going to shut down even more. I highly suspect that this attack was partly driven by a PANDAS reaction. We live in the neighborhood where all the kids play together after school. There is one little girl who hasn't been around a lot lately. Every single time the girl is home and dd plays with her we have a major attack that evening (I have everything written down). The little girls older sister is my dds age and good friend. Apparantly the state offices are closed today and their Mom is off work because both of these girls have already rang our doorbell to play this morning. I don't want my dd near either one them but forbidding her to play with them would mean forbidding her to play with anyone today. Anyway-back to where this post started...... On Monday I'm taking her in and having the blood drawn and then heading straight to the Pharmacy to get some abx for her. Our family cannont continue to live this way.
  20. What a great idea! I will have to remember it when we move on to the next phase-healing emotionally.
  21. We go thru this same exact thing with my dd except my DH & I (& the bathroom walls) usually end up having more water on us than she does. It is a horrible experience for all us. Sending lots of hugs your way!!
  22. I think you need to call his Doctor and let him/her know how your son is behaving ASAP. Depression can lead to more serious thoughts/actions.
  23. Eosinophilic Esophasitis http://www.apfed.org/ee.htm
  24. We have an appt scheduled with an ENT in June. Our dd's ASO titers have never dropped below 524 so we as parents are definitely considering surgery. The LLMD we saw Tuesday recommended removing her tonsils. We'll have to see what the ENT says.
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