Newbie with son with PANDAS dx and multiple antibiotic allergies

[becjonz]

My 10 year old son, Matthew, had a rapid onset of tics and anxiety in July '09. Once school began in September his attention, which previously had not been great but was manageable, was just awful. Suddenly, my very bright son was needing an adult to sit one-on-one with him in his 4th grade class in order to get through any work. He often stalled out on work because just seeing others being way ahead made him so anxious and feeling like he could never succeed so he couldn't start. His attitude with his brother and with me changed. My son, who had always been the recipient of many complements for his impressive behavior suddenly talked back to adults and was physically aggressive with his brother. I was shocked to see how at 10 he seemed to suddenly be turning into a punky teenager. He was constantly moving and his tics morphed from one thing to another over several months. The final one was a rhythmic pattern he would have to do with his feet. This was such a distraction that even the class below his complained about the noise he made!

 

In Feb. he received a tentative diagnosis of PANDAS, ADHD and anxiety. He started on sertraline for the anxiety for a week, then the following week added tenex for the tics. The tenex was soon switched to a very low dose of Risperidone.

 

He also was tested for both Strep titers. At the beginning of March his blood work came back and PANDAS was confirmed. He did 10 days of a high dose of Amoxicillan but once he switched to a lower prophylactic course he began having hives. He was taken off of the Amox. and penicillan was attempted on the theory that sometimes there is a virus that causes issues with Amox. but within an hour of taking the penicillan the hives were back. Next came Zithromax and this time 45 minutes later the hives were back. And when they say it stays in your system for 10 days they aren't lying because for 10 days he continued to have hives.

 

Right now we have him on nothing, watching for increased symptoms(there have been none) and having the principal alert me to cases of strep at the school so we can monitor him and assess whether or not to push the antibiotic issue. His tics are nearly gone- I NEVER see them at home, at school they are better, not gone, but better and his personality has returned to the kid he was before.

 

My question is has anyone else noted a difference in their child's sensitivity to things? Previously, Matt was my healthy son. He stayed well while his brother caught everything now it is the complete opposite. If some bug is going around Matt is sure to get it. Prior to this he did not have a single allergy and has been on each of these antibiotics previously with no adverse reactions. Also what do you do when you can't be on low dose antibiotics?

 

The doctor is considering other options and possibly working with an infectious disease specialist to desensitize him but I wanted to hear other ideas.

 

Thanks! (sorry so long)

[thereishope]

Welcome.

 

I am brainstorming here so bear with me. At first, I read what you wrote and it looks like he's allergeric to a lot of meds. But then I also stop and wonder if the hives is a form of herxing. 2 of my kids get hives when their body is trying to rid itself of an infection. Does anyone know if hives could be a form of herxing?

 

Also, for some, hives could be their symptoms of strep.

 

How are his PANDAS symptoms right now? Do they believe he is strep free?

Edited April 26, 2010 by Vickie

[DebC]

Welcome.

 

I am brainstorming here so bear with me. At first, I read what you wrote and it looks like he's allergeric to a lot of meds. But then I also step and wonder if the hives is a form of herxing. 2 of my kids get hives when their body is trying to rid itself of an infection. Does anyone know if hives could be a form of herxing?

 

Also, for some, hives could be their symptoms of strep.

 

How are his PANDAS symptoms right now? Do they believe he is strep free?

 

One other thought on the antibiotic allergy. I just developed serum sickness myself last week from a reaction to Augmentin. My doctor would not switch me to another antibiotic until the reaction was complete and I was symptom free from the reaction because while my system was compromised by this Augmentin reaction, it might automatically respond to any other antibiotic introduced because the autoimmune system was now hypersensitive and totally out of whack. You may want to ask you doctor if this is what occurred when the Zithromax was introduced. I was on Augmentin and she said this could occur if they immediately tried zithromax.

Edited April 26, 2010 by DebC

[dcmom]

I would recommend seeing an allergist immediately.

 

With pandas, you NEED the option of antibiotics.

 

My daughter has had similar issues during her life, at one time or another has reacted to omnicef, amox, and zithromax. As soon as we suspected pandas we went to the allergist. He explained there are several things which could be happening: first, a rash can be from the illness, second, these rashes can be side effects from the meds- that some people experience, and third and least likely for my dd it could be a true anaphylactic type allergy.

 

If you can remember, document exactly when, to what, and appearance of rash.

 

If it is side effects- your child can be treated with the med- if necessary they can give an allergy med to ease any discomfort.

 

My dd now takes daily zith. My allergist made a list in preferential order of what antibiotics she can have. He said it is very rare to have a life threatening type of allergy to zithromax. She is doing fine- no rashes. We plan to test her in the future for penicillins- those are the most likely for people to have a life threatening allergy to- so we will stay away from them for now.

 

If he is back to himself right now- that is great! If it were me (but I have been through a lot), I would want to consider prophylactic abs for a year. There is not a lot to lose in doing that. If he gets strep again, the episode could be worse, and there is a possibility he would need more than antibiotics.

 

The decisions with pandas are SO hard, and, they are ALL on you as a parent- there is not enough research. THE best we have, really, is our collective experiences on this forum.

 

Good luck!

[Phasmid]

Hello,

 

This is interesting to me, as we saw the same thing during my son's second episode (2004). During this time, he developed many strange food allergies which he never had before. All of a sudden, fish gave him hives, parmesan cheese gave him hives, and a couple other things. In our case, this happened without antibiotics. My son became hypersensitive to things for a while. It calmed down soon after. I am thinking back, though, to his "acute" state, when he probably started all this at age 3. He was given cefzil for a strep throat infection. About 8 days into the cefzil, we took him to ER for reaction where he had hives spreading from arms to torso. They deemed it an antibiotic allergy.

 

 

 

 

 

 

 

 

My 10 year old son, Matthew, had a rapid onset of tics and anxiety in July '09. Once school began in September his attention, which previously had not been great but was manageable, was just awful. Suddenly, my very bright son was needing an adult to sit one-on-one with him in his 4th grade class in order to get through any work. He often stalled out on work because just seeing others being way ahead made him so anxious and feeling like he could never succeed so he couldn't start. His attitude with his brother and with me changed. My son, who had always been the recipient of many complements for his impressive behavior suddenly talked back to adults and was physically aggressive with his brother. I was shocked to see how at 10 he seemed to suddenly be turning into a punky teenager. He was constantly moving and his tics morphed from one thing to another over several months. The final one was a rhythmic pattern he would have to do with his feet. This was such a distraction that even the class below his complained about the noise he made!

 

In Feb. he received a tentative diagnosis of PANDAS, ADHD and anxiety. He started on sertraline for the anxiety for a week, then the following week added tenex for the tics. The tenex was soon switched to a very low dose of Risperidone.

 

He also was tested for both Strep titers. At the beginning of March his blood work came back and PANDAS was confirmed. He did 10 days of a high dose of Amoxicillan but once he switched to a lower prophylactic course he began having hives. He was taken off of the Amox. and penicillan was attempted on the theory that sometimes there is a virus that causes issues with Amox. but within an hour of taking the penicillan the hives were back. Next came Zithromax and this time 45 minutes later the hives were back. And when they say it stays in your system for 10 days they aren't lying because for 10 days he continued to have hives.

 

Right now we have him on nothing, watching for increased symptoms(there have been none) and having the principal alert me to cases of strep at the school so we can monitor him and assess whether or not to push the antibiotic issue. His tics are nearly gone- I NEVER see them at home, at school they are better, not gone, but better and his personality has returned to the kid he was before.

 

My question is has anyone else noted a difference in their child's sensitivity to things? Previously, Matt was my healthy son. He stayed well while his brother caught everything now it is the complete opposite. If some bug is going around Matt is sure to get it. Prior to this he did not have a single allergy and has been on each of these antibiotics previously with no adverse reactions. Also what do you do when you can't be on low dose antibiotics?

 

The doctor is considering other options and possibly working with an infectious disease specialist to desensitize him but I wanted to hear other ideas.

 

Thanks! (sorry so long)

[becjonz]

Welcome.

 

I am brainstorming here so bear with me. At first, I read what you wrote and it looks like he's allergeric to a lot of meds. But then I also stop and wonder if the hives is a form of herxing. 2 of my kids get hives when their body is trying to rid itself of an infection. Does anyone know if hives could be a form of herxing?

 

Also, for some, hives could be their symptoms of strep.

 

How are his PANDAS symptoms right now? Do they believe he is strep free?

 

 

Thanks for the response. His symptoms right now are good. He is about 95% himself with only minimal tics left, mainly at school. They do believe he is strep free currently although even that leads me to another question...how often do people usually have the titers redone? Is that useful to do to see if there is a reduction in levels or is it sometimes misleading?

[becjonz]

DebC- I had wondered that at the time myself. Within one and a half weeks we tried 3 different antibiotics so maybe his system was overwhelmed by too many trials in too short of a period.

We see the doctor on Thursday and I want to have all my questions compiled for her so I will add this to the list.

 

DCmom - It was good to read your response because sometimes I feel like I'm pushing to hard. I don't want him over medicated but if we can avoid an exacerbation then it is worth it for year long antibiotics. Currently instead I'm panicking over any sore throat but who's to say he couldn't be asymptomatic with strep. I do watch his behavior, tics, etc. like a hawk for changes but yeah I'd rather just prevent another round of PANDAS.

 

Thanks each of you since as I said we go back to dr. on Thursday and I want to go fore armed with questions and your thoughts help with that.