Going to Contact Dr. K

[MMWG]

Hi all-

My son is off his second round of antibiotics, testing negative for strep, and his pediatrician (who diagnosed the PANDAS) says that it all we can do for him, and to call if we notice a "behavioral spike", as that will be our sign he has strep. Well, in our house there is a behavior spike every couple of hours. He had a bad cold last weekend and his tic went away, only to return once he could breathe through his nose again. Consulted a child psychologist about pursuing treatment for our meltdowns, hyperactivity, and defiance that have been a mainstay around our house for the last few years (in retrospect, probably since he first started struggling with this). She had not heard of PANDAS but strongly encouraged us to get a second opinion, as she was concerned about starting therapy until we had a handle on the PANDAS.

 

Long story short, I am tired of screwing around about this. Neither pediatrician around here thinks there's anything else to do, just sort of wished us luck if we wanted to go try some behavioral therapy. I have a 4 yr old who has constant fight or flight responses any time he feels threatened, defiance at an unbelievable level, hyperactivity, and significant fine motor problems--he has never even had a chance to learn to write his letters because he refuses to pick up a pencil. Now he has a tic, as a result of his recent strep infection. Likely we won't make it much longer at our current preschool, as I can't expect them to go through all this with us.

 

I just discovered that Dr. K is covered in my insurance network. I have drafted an email to him summarizing our story. We are about 5 hrs away, but I would drive there tonight if I thought he could help us. My question is whether I should offer to make an appointment, or just let him decide how to proceed? I am afraid he will just tell us the antibiotics should have been enough, and then I am left with hanging again.

[GatsMom]

Hi all-

My son is off his second round of antibiotics, testing negative for strep, and his pediatrician (who diagnosed the PANDAS) says that it all we can do for him, and to call if we notice a "behavioral spike", as that will be our sign he has strep. Well, in our house there is a behavior spike every couple of hours. He had a bad cold last weekend and his tic went away, only to return once he could breathe through his nose again. Consulted a child psychologist about pursuing treatment for our meltdowns, hyperactivity, and defiance that have been a mainstay around our house for the last few years (in retrospect, probably since he first started struggling with this). She had not heard of PANDAS but strongly encouraged us to get a second opinion, as she was concerned about starting therapy until we had a handle on the PANDAS.

 

Long story short, I am tired of screwing around about this. Neither pediatrician around here thinks there's anything else to do, just sort of wished us luck if we wanted to go try some behavioral therapy. I have a 4 yr old who has constant fight or flight responses any time he feels threatened, defiance at an unbelievable level, hyperactivity, and significant fine motor problems--he has never even had a chance to learn to write his letters because he refuses to pick up a pencil. Now he has a tic, as a result of his recent strep infection. Likely we won't make it much longer at our current preschool, as I can't expect them to go through all this with us.

 

I just discovered that Dr. K is covered in my insurance network. I have drafted an email to him summarizing our story. We are about 5 hrs away, but I would drive there tonight if I thought he could help us. My question is whether I should offer to make an appointment, or just let him decide how to proceed? I am afraid he will just tell us the antibiotics should have been enough, and then I am left with hanging again.

 

I understand your frustration completely and you are certainly not alone. I say get the appointment, the first one he has available. From everything I've read and my experience with Dr. T, I cannot imagine that any of the true experts in this field, Drs T, K, L & B, would tell you they were out of suggestions if the antibiotics you've tried weren't effective. There are multiple options available, abx is just one. Further, your child may not have been on the right abx or correct dose. You are very fortunate to have Dr. K in your network. That's a great sign, jump on it!

 

Gat's mom

[sf_mom]

We have been under Dr. K's treatment since September and our son sounded very similar and in many for those areas has completely reversed course. We have had 3 IVIG treatments with him every 8 weeks..... and we are hopeful it was our last. I can assure you Dr. K will not let you down and knows the right course to help your son get better.

[reactive]

Hi all-

My son is off his second round of antibiotics, testing negative for strep, and his pediatrician (who diagnosed the PANDAS) says that it all we can do for him, and to call if we notice a "behavioral spike", as that will be our sign he has strep. Well, in our house there is a behavior spike every couple of hours. He had a bad cold last weekend and his tic went away, only to return once he could breathe through his nose again. Consulted a child psychologist about pursuing treatment for our meltdowns, hyperactivity, and defiance that have been a mainstay around our house for the last few years (in retrospect, probably since he first started struggling with this). She had not heard of PANDAS but strongly encouraged us to get a second opinion, as she was concerned about starting therapy until we had a handle on the PANDAS.

 

Long story short, I am tired of screwing around about this. Neither pediatrician around here thinks there's anything else to do, just sort of wished us luck if we wanted to go try some behavioral therapy. I have a 4 yr old who has constant fight or flight responses any time he feels threatened, defiance at an unbelievable level, hyperactivity, and significant fine motor problems--he has never even had a chance to learn to write his letters because he refuses to pick up a pencil. Now he has a tic, as a result of his recent strep infection. Likely we won't make it much longer at our current preschool, as I can't expect them to go through all this with us.

 

I just discovered that Dr. K is covered in my insurance network. I have drafted an email to him summarizing our story. We are about 5 hrs away, but I would drive there tonight if I thought he could help us. My question is whether I should offer to make an appointment, or just let him decide how to proceed? I am afraid he will just tell us the antibiotics should have been enough, and then I am left with hanging again.

We want to see Dr. K also. I contacted the info on their site and called one of the offices. I am waiting on a lot of medical records that I want to send ahead of time, but his staff on the phone was helpful and will tell you what to do.

[KeithandElizabeth]

We have had 2 phone consults with Dr. K and he has tremendous (15 years?) experience with PANDAS. I would highly recommend going to see him. How wonderful that your insurance will cover things!!!

 

Elizabeth