Getting ridiculous! Allergic to ANOTHER antibiotic!

[KeithandElizabeth]

Oh I am sorry!

 

Just a thought. What about trying Olive Leaf Extract??? I know that Stephanie, from this forum, is trying this.

 

Elizabeth

[Megs_Mom]

We thought my son was allergic to penicillin and omnicef for years because he would break out in a rash not long after starting the medication. This summer we finally had an oral challenge with our immunologist, and it turns out he isn't allergic at all. Some viruses can interact with the abx. and produce a rash. I truly was convinced my son was allergic, but he has had penicillin and omnicef since his oral challenge and never ended up with a rash. It would be totally worth a try if it could put those meds back in your arsenal.

 

How do you do an oral challenge? We are "allergic" to penicilin, so Augmentin is off the table for us. Our immunologist talked about testing her in the office if we ever needed it - but I have no idea what that means. I have also had a doc tell us that sometimes kids that seem to be allergic to abx are actually shedding toxins. Not sure how you'd ever know which is which.

 

Tantrums, hope he does better soon. If I could not get abx, I would try the "natural abx". Thanks!

[dut]

Tantrums - hi not saying you are dealing with this but thought it worth a mention.

 

Our dd had a severe serum sickness-like reaction to Augmentin (most docs just call it serum sickness). It started with hives, then swelling and when they went away we had migratory arthritis for a couple of weeks. Instead of a type I anaphalaxis type reaction, it is a delayed type III hypersensitivity that happens when the body's antibodies to the antigen (the abx) combine together with the antigen and form immune complexes that deposit in skin - hives and swelling, joints - arthritis and sometimes but more rarely, the kidneys, liver and possibly heart but we were told and experience confirmed for us, that it is usually just skin and joints.

 

It keeps going, despite coming off abx, for a few days to weeks 'cos of the 20-ish day half-life of the antibodies. Our dd was in a lot of pain with her joints and couldn't walk at some points but did fully heal at just about the 20 day mark. We were told by Dr B and our local immunologist to never take penicillins again. An allergy test would be useless as it would probably come back ok 'cos the skin prick test, intradermal and oral challenge can only show immediate IgE reactions and this type is delayed IgG.

 

The previous year she also got the 'amoxy rash' - got the full allergy test, came back fine and then wham! I believe that for her the 'amoxy rash' was the forerunner to this and from what her local immuno said it seems as though the same mechanism is at work.. abx, A.N. other infection (probably viral EBV?) and a confused immune system both lead to the fairly common 'amoxy rash' and this much less common reaction. Perhaps your immune system needs to be even more over-stimulated for the serum sickness one.. hers certainly was at the time, we believe.

Edited November 18, 2010 by dut

[tantrums]

That sounds very much like what happens to DS! The swelling his joints - particularly hands and feet but also elbows and knees - leave him unable to walk or write. The reaction IS delayed. He can be on the meds a day (in the case of the Zithro) or four days (Omnicef) before this shows up and then it takes quite a while to go away.

 

He has no fever today and the hives are somewhat improved but his foot and elbow are still swollen.

 

I also wondered how much help the allergist could be. I don't think an oral challenge would be at all effective since the reaction is delayed. This is the SAME reaction he had to shellfish in Maine. They did skin and blood testing for all shellfish and those all showed negative.

[lyme_mom]

Well today the hives increased once again to the point of swelling of his hands AND feet. This happened when we were in Maine and he had lobster for the first time. When that happened, we ended up in the ER two nights in a row with epi shots and steroids. That was our unplanned "steroid burst" that did NOT go well at all and started to convince me he had TS rather than PANDAS.

 

We happened to have an appt tonight with a dermatologist. It was there that I saw how swollen he was. The derm gave us 21 days of steroids! UGHHHHHHH!!! So now he is without ABX, I have raging strep and he is on steroids.

 

I told my husband I may just be moving out!

 

I am very concerned by this swelling with his hives. It doesnt seem right. all of the doctors we have discussed it with are alarmed as well, but none have any sort of answer for it.

I would be very worried about the swelling too. I would be very careful not to use more steroids than are necessary until you know for sure that other infections are not involved. Do you have anyone near you who can do energetic testing? We have done this often during our lyme treatment. They can test to see which antibiotic is good for you and they can also test for other infections. You don't take the antibiotic. They have you hold a sealed vial of it in your hand. We did this testing with a number of different practitioners and I believe it is very reliable if you have someone who knows how to do it.

 

You will get a lot of advice that this can't be lyme but if I were you I would not want to leave any stone unturned that could lead to a quicker healing for my child. Getting all the right info from the start can save you months and months, even years of agony, not to mention money. Some of these lyme doctors charge a lot but there are some who do not who could give you their expert opinion. When one of my kids was diagnosed with lyme I had them all tested with Igenex b/c I wanted to know sooner, rather than later what we were dealing with in my family. I just wanted to be completely thorough and I took the advice that a wise naturopath gave me to get the whole family tested for lyme via igenex. At the time the rest of us did not have ANY symptoms! To my surprise all three kids and I were positive. Then some of the symptoms started. We think we got it on a camping trip and it had not been long enough to start symptoms at the time of testing. My other two kids were not as sick as any of the kids discussed on this board and yet they had lyme. In fact, their symptoms were quite subtle but obvious to me and the llmd. Tick borne infections are really insidious bugs that take hold in the body and which are hard to test for. By lyme I am referring to all the tick borne bugs not just borellia (like bartonella, babesia, etc.) The good news with lyme is that with the proper treatment you can get well. We all did and one of my kids was quite ill.

Also, I was told about some very high potency probiotics by Elizabeth and Wendy and I wish I had started using them a long time ago. The nutritionist who recommended them believes that if the gut isn't working optimally you can't fight these infections. She recommends taking 8 to 10 50 billion capsules a day. I do not see a downside to doing this and we are doing it. They are available from custom probiotics.com. We have used probiotics the entire time but we were taking only 4 billion a day. We have also begun the detox that they are doing with bentonite. I don't have any results yet but if I were starting at the beginning again this is definitely something I would have tried along with tracking down what infections are at work. No matter what is going on with your son having a healthy gut is going to help. Good luck!

[Fixit]

Tantrums - hi not saying you are dealing with this but thought it worth a mention.

 

Our dd had a severe serum sickness-like reaction to Augmentin (most docs just call it serum sickness). It started with hives, then swelling and when they went away we had migratory arthritis for a couple of weeks. Instead of a type I anaphalaxis type reaction, it is a delayed type III hypersensitivity that happens when the body's antibodies to the antigen (the abx) combine together with the antigen and form immune complexes that deposit in skin - hives and swelling, joints - arthritis and sometimes but more rarely, the kidneys, liver and possibly heart but we were told and experience confirmed for us, that it is usually just skin and joints.

 

It keeps going, despite coming off abx, for a few days to weeks 'cos of the 20-ish day half-life of the antibodies. Our dd was in a lot of pain with her joints and couldn't walk at some points but did fully heal at just about the 20 day mark. We were told by Dr B and our local immunologist to never take penicillins again. An allergy test would be useless as it would probably come back ok 'cos the skin prick test, intradermal and oral challenge can only show immediate IgE reactions and this type is delayed IgG.

 

The previous year she also got the 'amoxy rash' - got the full allergy test, came back fine and then wham! I believe that for her the 'amoxy rash' was the forerunner to this and from what her local immuno said it seems as though the same mechanism is at work.. abx, A.N. other infection (probably viral EBV?) and a confused immune system both lead to the fairly common 'amoxy rash' and this much less common reaction. Perhaps your immune system needs to be even more over-stimulated for the serum sickness one.. hers certainly was at the time, we believe.

 

i am going to reply to this one as it is most similar to ds when he was 5 and we were told no more aug...

flash forward to march of this year(ds is 10)..i discuss with doc t...he thinks we should try augxr..as it may have been rf...so we try and about 7-10days in some rash and joint muscle pain...so we stop immediately....

we wait ...i go to see scott smith....tell him of experience...he says lets try again...i am not keen on this...my poor boy..i can't torture him....

scott said being that the reaction was 5-10 days out(not immediate), the aug is probably wiping out everything..and what is left will take over..yeast or fungus was probably getting into his muscles joints.....so once i comprehend and feel more assured..we try again.....but we use diflucan at the same time...

we did 30 days hd with diflucan...no problem...unfortuanetely no immprovement....

now i know it may not have been long enough..but i also think it was his allergies at this point putting him in to a chorea state

Edited November 18, 2010 by Fixit

[thereishope]

I feel so bad for you and your son!!!!!!!!!! I agree that doing a steroid (with a previous bad reaction) without being on an antibiotic isn't a good idea. I don't know what to suggest about the severe inflamation though. Do you have an urgent care by you if you feel you've reached a dead end with your current docs? Now with the addition of a fever, I probably would be nevous to wait this out.

Edited November 18, 2010 by Vickie

[tantrums]

I realized last night, I'm NOT doing the full 3 weeks of steroids. I dont' know that I ever have done that actually. I will stop them when his swelling is gone. We were in a bind and this was a regular dermatologist that we happened to be at who gave them to us last night rather than suggesting we go to the ER (It was late and other docs were closed). He's not familiar with this stuff so I don't fault him. Clearly with the swelling, he NEEDED them to some extent. Just not keen on doing 3 weeks!

 

To add insult to injury... the doctor put an acid mixture on the molluscum last night. My poor babies skin!!!!!!

[thereishope]

Send your son hugs from all of us ....you get some too

[formedbrds]

[

Edited January 16, 2011 by formedbrds

[tantrums]

So we just got back from a 5 hour visit to the ER. All of a sudden, his feet turned black and blue! I mean - it looked like a car ran over his feet! Called the doctor and they said to go to the ER. It was packed and we waited a very long time. By the time we got in, they were only light blue.

 

They think it was from him bouncing around (thank you steroids) on swollen feet all day. But then sitting waiting the broken blood vessels disbursed.

 

Interesting thing - despite it being so packed - I cannot tell you how many doctors came in to discuss PANDAS with us. They had all of the med students come in. The students really seemed interested and were the most knowledgeable about it already. Seems like they are learning more in med school now than they used to.

 

They also suggested I stop the steroids after tomorrow

[dut]

Tantrums - you may want to discuss the serum sickness thing with your immuno.. bruising is common with it due to vasculitis - it may change the way they watn to treat if they think it may be that.. we didn't do steroids but we could have but we did do max dose on benadryl and piggy backed double dose zyrtec on top of it and it kept it bearable for her (in addition to max dose of ibuprofen for joint pain).

[tantrums]

Reading up on serum sickness. Yup! Sounds exactly like what has happened. The delayed response, the low fever (when he normally will shoot right up to 104 range), joint pain, swelling and bruising.

 

I'm scared to even attempt another antibiotic!!

 

it says each reaction will be more severe. Last week he had a mild reaction with zithromiacin and then we rolled right into the Omnicef which was much more severe.

[dut]

Hi - it was the serum sickness that sent us (for now) abx free. My dh just balked at more and although I would have gone back to zith (it was augmentin that caused her reaction)I'm trying our dd without abx, using using olive leaf complex instead.

 

I'm scared and wouldn't advocate people go abx free but so far, so good for us. For the first time in many months she's had colds (3 now) that haven't set off a PANDAS episode. We never completely exited the last bad one.. we still have lingering night time fears and she's in bed with me but I can live with that for now. With recent posts on gut permeability and autoimmune, I'm willing to give it a go and see how we do. I'm sure I'll regret it the next time she tanks, mind you.

 

If you want to stay on abx, I would check for viral infection. From my limited understanding, it's usually a viral infection that confounds the issue and makes the body see the abx as an attack and thus form antibodies. You'll never be able to use the abx that kicked off the reactions so far (according to Dr B it will always see them as antigen) but you may be able to stop future reactions, possibly, if you can find and eradicate the infection that is causing the confusion, usually EBV according to our local immonu, but not always..

 

Good luck. I know how bad and scary serum sickness can be.. we ended up in ER in an ambulance 'cos her pain was so bad and we couldn't physically move her without her screaming in pain... mind you by the time she got to hospital and her anti histamines had kicked in and pain meds that we'd given her earlier, she was asking for cake. There's me looking sheepish with the phrase "tax payers dollars" amblazoned across my forehead!

[kim]

Tantrums...how long did this reaction take to show up?

 

This is the SAME reaction he had to shellfish in Maine. They did skin and blood testing for all shellfish and those all showed negative.