ShaesMom
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Posts posted by ShaesMom
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The flu mist is a live virus and should be avoided especially in immune compromised. Vaccine is made with the dead virus. We have also avoided the flu vaccine for the last four years for PANS kiddo but this year I am asking all her Dr's about pros and cons. Nervous it will jumpstart major flare but since she does have CVID dx and because the flu sounds really bad this year-we may try it again.
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There is a KC area support group. http://lymefight.info/. I received a newsletter from them for a few months and it always seemed like it was filled with upto date material. They also sent me a list of doctors in the area. Unfortunately, we actually live in a different state so I was never able to attend any of the meetings.
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I would see about changing back to the same brand she was on before Gammunex C.
Doc changed my dd's brand about a year and a half after starting and she did not tolerate the switch. No equillibrium issues but side effect sx's tripled. We switched back and sx decreased immediately.
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Sounds like a Bartonella rash. I get pimple like bumps on my back in cycles with my bart herxing. They never have pus but it looks like my back is covered with red pimples. They go away on their own.
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Ok - I hate those little critters! Yesterday, we had some brief snow activity here in Philly suburbs. For a week now, there's been a bunch of leaves in my attached garage (way too many oak trees on my property) that I've been waiting for someone to sweep out. Well, yesterday my daughter went out to our driveway to briefly catch some snowflakes on her tongue and tracked some of them leaves into the kitchen. A little later I go to vacuum them up and saw something moving. At first I couldn't tell if it was part of a broken leaf, then it moved again. It was a tick. I placed it in a baggie to show to my hubby how important it is to keep up with the leaves. Thank god I decided to vaccum them up fairly quickly, before it ended up on one of us. Uggh. Unfortunately, if my garage doors are left open even for a few minutes we end up with a ton of leaves inside. Very important to take care of those leaves on the property - gone are the days where the kids can pile them up and jump
Yikes is right! Glad you found it on the floor and not on one of you.
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We are starting Zith and Rifampin for suspected Bart. DD did not test positive and I was torn about rifampin but her pain continues and she has all the symptoms described, plus foot sole pain and psych symptoms. She is starting Rifampin tomorrow. I am hoping like with everyone this will help. I suspect that Motrin does take the edge off but in her 8 year old mind its still there so nothing is helping.
Does everyone give Rifampin with food or on an empty stomach like the instructions say? We had it compounded. I tried a dose last night to see how it was and it made me nauseous later, though fortunately the syrup tastes quite good so at last that won't be a battle.
It has to be given on an empty stomach or it will not be absorbed properly. We do ours one hour before we eat in the am and then at least two hours after eating at night.
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We are switching to this combo for DD (liquid, she won't take tablets). For Augmentin I had asked for the Teva brand instead of Dr. R, but what brands are Ok for these 2?
Thanks!
I was told by our LLMD that Rifampin does not come in a liquid. We open the tablets and mix with a little water.
Thanks, our LLMD wrote "suspension" on the script, but I am thinking CVS ,may compound it. I will go today and ask. Are there different brands?
Sorry I don't worry about brands for those family members who are taking Rifampin so I have never really paid attention.
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We are switching to this combo for DD (liquid, she won't take tablets). For Augmentin I had asked for the Teva brand instead of Dr. R, but what brands are Ok for these 2?
Thanks!
I was told by our LLMD that Rifampin does not come in a liquid. We open the tablets and mix with a little water.
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DS is on Azith/Aug/Rifampin combo since May. He has done really well on this. We added in the Rifampin after almost a year on the other two and for several months he would get a large rash every Tuesday on either one or both of his legs. Over the months the rashes became smaller and fewer. Since adding in the Rifampin I have noticed that his mood swings have improved; his temper isn't as quick; depression is better and he just seems happier again.
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LOTS of H2O the day before, day of and for a couple of days after. Either Tylenol or Ibuprofen about an hour beforehand along with an antihistamine.
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Does anyone know what has been happening with Elizabeth Wray?
Anyone?
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I am so sorry to read of the bleak situation you are in. I haven't had cancer but have also been dealing with hospitalizations for my own health while also caring for Bart/PANDAS DD. I completely understand your fear (inability?, terror?, hopelessness?) at dealing with ANYTHING let alone this. I don't really have any advice but know that you are not alone.
Thanks FallingApart. I'm sorry to hear that you are also dealing with your own health issues. You really put into words what I couldn't with your post the the other day. So "thank you" for sharing your own vunerability with us.
Mar-thank you as well all your words of encouragement. Prayer is much needed for all of us.
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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....
She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....
I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.
I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.
What else have you tried besides antibiotics?
GSE, Artemesia, Magnesium, Acidophilus, monthly IVIG
I don't want to cause a firestorm of debate. However, this sounds as if the current therapies are having very little impact to improve you or your daughter's life. Existing is not life. For you or her. I have not had a child so debilitated that he cannot leave the house or attend school. I can only imagine the stress that would place on a family, including the child! I would be open to trying some different medications many might consider under the "psychiatric" realm. SSRI's or other mood controlling agents. You describe an extreme situation...may need more than complementary, antibiotic or alternative treatments. Many of our children have improved and enjoy a better quality of life with low dose SSRI's, Lamictal and other psychiatric medications available.
A good pediatric psychiatrist or neuro-psychologist should be able to help you and her. The current plan does not seem to be working...just my observation from reading. I can't imagine this life is enjoyed any more by your daughter than it is for you.This level of social anxiety, fear, separation or... whatever it is... to cause this level of disability calls for more extreme measures, in my opinion. There are medications that can help...it is not a cop out to use these medications (if they work). It is called getting your family's life back.
I appreciate your advice but I think somewhere along the line you have misunderstood my post and current situation. My daughter had four days of being unable to attend school because of fear of the classroom. This behavior started about a week after adding a new abx to regime for Bartonella. She was herxing and I know that. DD also has PANDAS and this level of behavior is typical. How lucky you are to have never dealt with it on a personal level. I know first hand that SSRI's are not a solution for her.
DD also has an illness called Eosinophlic Eosphagitis which was flaring from food trials and seasonal allergies through the summer. EoE causes vomiting, extreme fatigue, pain, nausea and the feeling of having something stuck in your throat. She was finally coming out of this and had been going half to 3/4 days.
In January '11, we had to pull dd out of school because she was extremely sick with a Pseudomonas infection in her tonsils. Of course this wasn't discovered until her tonsils were removed in July '11 after months of frustration that her Docs couldn't figure out what was wrong with her. She was not out of school because of severe anxiety at that time.
Sept '11 I had a double mastectomy which turned into 5 surgeries over 8 weeks due to various complications including a Mycobactrium infection which had me sitting on the couch until April of this year. I am still battling the infection which won't seem to go away. Yesterday I had my first IVIG because Docs determined I am immune deficient-just like dd. So we were IV buddies yesterday.
I also have a son and husband who are being treated for lyme. So someone is always sick around here.
So i am feeling the way I am because it has been one thing after another without any breaks in between.
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The Doctor we intially saw in MO dx'd me with this on the first visit. I think he recommended Heparin-I would have to go back and look at the notes. I never treated.
I had bulging veins in my hands for years-I'm assuming this was from the hypercoag. It is one of the things I have kept a close on since starting treatment. My hands now appear normal looking without the bulges. I don't know if this means that the hypercoag is gone or just not as bad.
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One idea is to journal your feelings. Write to her to explain what's going on in your head. You can always delete it. But writing it might help you sift through your emotions in a safe way. All of them - including the negative ones - are legitimate and totally understandable.
I actually started a journal for dd about a year after intial PANDAS dx. I have found it to be very helpful for me. I definitely write in it more when times are tough. I think it is important because I am able to state how much we hate this disease and not her. Someday she will be able to sit down and read it and see that no matter how bad it has gotten-we have always loved her.
I was trying to explain to some friends last week how exhausted I was and that dd really needed to be in school so I could have a break. It is actually a new bible study group and they haven't been around or heard about our ordeal for the last four years. They all looked at me like I was the most unsympathic and selfish person. Like how could a mother be so uncaring with a sick child. I
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Wow-couldn't have said it any better. just wanted to say that you are not alone in feeling this way. I just told a friend of mine last week that I was beginning to think I had PTSD from all of this as well. DD has also been flaring recently and I am having hard time dealing. I think it actually gets harder with each flare not easier.
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Thank you for reminding me that I am not alone. We've tried everything in the past to get her there when she is like this and we have found nothing works. No amount of bribes or reasoning or screaming and yelling. When she makes up her mind nothing is going to change it. When she was younger we could pick her up thrown her in the car and just go. Now she is just to big for me to carry and likes to try opening the car doors when we are moving. Just to dangerous.
I don't think she has any desire to try this morning either. It is the lack of at least trying that I find so frustrating. Last week we had no issues whatsoever like this.
I'm supposed to be at the Doctor's office in an hour. I already canceled the appt with my ID doc this afternoon because his office is an hour away.
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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....
She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....
I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.
I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.
What else have you tried besides antibiotics?
GSE, Artemesia, Magnesium, Acidophilus, monthly IVIG
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So we added in a half dose of Bactrim last week to her abx regime of Omnicef and Biaxin. She made it to school Monday for half day, yesterday for 38 minutes, and completely refused to go today. This wouldn't be such a major deal except she has already missed most of the year because her EoE was flaring. We were finally getting that under control and this was supposed to be her first week of full days. Now this....
She says she is scared to go into the classroom but can't explain why. this all sounds so familiar.....
I'm really feeling like I can't do this again. I have not had a break since we had to pull her out in 1/11 for the year; I spent the next school year dealing with my cancer and subsequent infection-which i still have-and now all this. She made it to the first three days of school in August and that was it. I know I am being really selfish but I literally feel like I am drowning. The only place I have really been in the last two years is to the grocery store and church. Church is a battle every Sunday. Oh let's not forget all the Doctor's appts.
I am not being proactive with own health. I want to go the gym again, I want to volunteer again, I want to have lunch with friends, I want to live instead of exist.
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I would guess it took about six months to see improvement in my 12 yr old and myself. I am still battling lingering stuff almost a year later but he is almost done with treatment.
FYI-12 yr old is not the PANDAS/Lyme child.
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I'm so sorry you are going through this. I must be incredibly tough to feel like no one is helping you. You never know - it may turn out to be a blessing in disguise.
I'm thinking GF\CF diet and digestive enzymes may be helpful. What about the supplement MSM? SFMom has had good luck with it. Treating parasites would also be doable.
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http://kirkmanlabs.com/ProductKirkman/43/1/Reduced%20L-Glutathione%20Lotion/
So what do you think of the above product? It is only listed as an antioxidant and not with their detox or liver support products. It looks free of all her allergens.
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SF Mom-that product has soy in it so it is out.
Michael-like your recommendation. I assume I can find something on the Internet to tell me exactly how to do this.
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I need to find a liver detox for dd10 but I am having trouble because of all of her allergies. Any help would be greatly appreciated.
She is allergic to ragweed so milk thistle is out.
I've been researching NAC and ran across several sites that said to not take it if you have dairy, egg or wheat allergies. She is ANA dairy and slightly IgE positive for egg so we are avoiding it for now. So NAC is out.
Can't have lemon water because of the whole Eosiniphilic Esophagitis thing.
Nothing in capsule form because of severe allergy to Gelatin. Vegetable capsules are OK if not soy derivated.
Topical creams would be preferred but they can't have any PEG or forms of polyethylene glycol because of severe allergy.
She just added Bactrim to her abx regime of Omnicef and Biaxin so I'm really concerned about her liver.
Suggestions????
Anyone have experience with parasit treatment?
in PANS / PANDAS (Lyme included)
Posted
We have finally figured out that this is exactly what has been happening with our dd. We have found a pattern of strong behaviorial issues usually happening the night before a full moon through the day after. She has more fatigue, headaches and leg aches. She also has at least one episode of strong herxing that reminds of what I have seen on Under Our Skin that appears almost like having a seizure (which have been ruled out).