Recently diagnosed pandas child

[gracie]

Looking for advice . My daughter was recently diagnosed with pandas 2 months ago. Did test positive for strep with elevated ASO.. Pediatrician put on her on antibiotics which she showed some initial improvement. Did some research which took us to Dr K who confirmed that she has pandas. Did 3 more weeks of Augmentin and saw by end of 3 weeks 50 percent improvement. . Pediatrician then insisted we have a second opinion and saw a Doctor in Des Moines who did agree this is pandas. They put my daughter on prophylactic PCN and sent her home. She then started to slide in a downhill trend again. OCD symptoms very intense in past 2 weeks and again irrational fears and trouble with concentration amongst other pandas symptoms. Went to family dr who did ASO which was climbing again despite neg throat swab. Dr just put her on cephalexin high dose now to see if any difference. Seven days into antibiotic just starting to see a glimmer of improvement again. Any advice on where to go from here would be appreciated. We are very confused what to do next. Insist the pediatrician for continued antibiotic or contact Dr K for IVIG or just wait and see.

[DeterminedMomVA]

One option would be to calll NIH to see if you qualify for the clinical trial? Diagnosis and care from the experts. Otherwise, just keep trying to keep her on abx seems like the best short term option.

[gracie]

Thankyou for the post and I did call on the study . Not a candidate they said due to the fact that we saw some initial improvement before she declined again so drastically. Has been difficult for her to even function at school this last week. Any advice appreciated!

[hugs2day]

Possibly try a different antibiotic. Augmentin did not give my younger son the improvement that switching to Azithromycin did. And my older son got no relief with Azithro but went into complete remission with Penn VK.

 

Also they had to stay on treatment dose for years they could not get down to prophylaxis dose until after 20 months of treatment dose.

 

Best of luck.

[DeterminedMomVA]

I would try to keep her on treatment dose abx for an extended period. It sounds like you got a dx from two local doctors, plus Dr. K, so hopefully at least one of your local docs will be helpful and knowledgeable. Take them the information on the IOCDF website if needed. It talks about the possible need for extended antibiotics. You'll need to decide if you want to pursue IVIG or not. It can be very helpful, especially if done early, but it's expensive and not a guarantee. Honestly, we stayed on abx for 8 months, with significant improvement but flares with viral infections. Some report full remission from abx alone. We finally just did IVIG, but don't know how effective it will be for us yet.

 

Sorry the reply is so rushed. Rsponding on my phone. Hang in there. We're struggling to get DS to function at school, too.

[gracie]

Thanks so much for the advice. It seems like all the doctors have had there idea on what antibiotic works and how long and now on cephalexin and hoping I can at least convince her local doctor to stick with this longer and at full strength to see if improvement. I appreciate any advice.

[dcmom]

gracie-

 

So sorry you have to be here. I have two daughters diagnosed with pandas 3.5 years ago. They are doing wonderfully now (and have been for a while), but I feel we had to learn some things the hard way. I will give you my best advice, take what you want from it

 

It is very unlikely to be able to treat this disorder with your pediatrician. I mean, they have at their disposal what your dd needs, but it is unlikely they will take the time needed to UNDERSTAND PANDAS, or be willing to stick their neck out to treat it. This really sucks, but it is the reality. What this means is you will need to spend lots of $$ and time, to travel out of state (probably) for a doc who "gets it". The sooner you do this, the less your child will (hopefully) suffer.

 

IMHO this is how a new pandas patient should be treated:

 

There should be a somewhat extensive battery of bloodwork done to get a baseline. Your dd had strep, so hopefully she will be a relatively straightforward case. I would be prepared that some bloodwork will be out of whack, don't panic, watch it over time.

 

The child should be given a full strength prescription for an antibiotic. At the end of 30 days, if there is not continued improvement, the abx should be switched. I would give it another two weeks, and if not enough improvement is seen, the child should have a month long, tapering steroid course. (PANDAS is thought to be autoimmune- for my kids, they seem to clear infection normally, however the infection stirs up the immune system, causing the autoantibodies, which we usually need to shut down with steroids, or the like).

 

If the steroids and antibiotics don't give sustained results the child should immediately be a candidate for IVIG or PEX. (my daughters both had plasma pheresis for pandas, it was a miracle for both of them- not a cure, but brought them almost immediately back to 100%).

 

You need a doctor who is FLEXIBLE and PRO ACTIVE, and willing to take this journey with you. There are a handful of great pandas docs out there, however IMHO not all have these characteristics- if you want to discuss specific docs in detail, please pm me.

 

The lessons I have learned: be proactive, JUMP on a flare up, however, when seeing improvement (measure it by the week) do not rock the boat, give it time. Get a really qualified therapist who uses ERP therapy for OCD on your team. Focus on managing the heck out of this disorder, and your dd will be okay. The first year is the hardest- you will then learn what works as far as medical treatment, therapy and parenting AND hopefully their immune system will calm down, and flares will be less frequent and milder.

 

You will find a whole group of wonderful, smart parents here who have seen it all- use this board as a resource and daily comfort.

 

Hang in there!

[gracie]

I would try to keep her on treatment dose abx for an extended period. It sounds like you got a dx from two local doctors, plus Dr. K, so hopefully at least one of your local docs will be helpful and knowledgeable. Take them the information on the IOCDF website if needed. It talks about the possible need for extended antibiotics. You'll need to decide if you want to pursue IVIG or not. It can be very helpful, especially if done early, but it's expensive and not a guarantee. Honestly, we stayed on abx for 8 months, with significant improvement but flares with viral infections. Some report full remission from abx alone. We finally just did IVIG, but don't know how effective it will be for us yet.

 

Sorry the reply is so rushed. Rsponding on my phone. Hang in there. We're struggling to get DS to function at school, too.

[gracie]

I will keep positive thoughts that the ivig helps your child and I feel that eventually that may be what we turn to also. It sounds like as we have seen in a short time that anything can flare her symptoms. We don't know if true but have read also that sometimes the earlier the ivig is given the more effective result. Thanks for the support and please update me if possible on how your child does with the ivig.

[DeterminedMomVA]

dcmom gave great advice. better and more thorough than mine I'll try to keep you posted about the outcome of our IVIG. Things are up and down right now, as expected.

[WonderWhy]

gracie-

 

So sorry you have to be here. I have two daughters diagnosed with pandas 3.5 years ago. They are doing wonderfully now (and have been for a while), but I feel we had to learn some things the hard way. I will give you my best advice, take what you want from it

 

It is very unlikely to be able to treat this disorder with your pediatrician. I mean, they have at their disposal what your dd needs, but it is unlikely they will take the time needed to UNDERSTAND PANDAS, or be willing to stick their neck out to treat it. This really sucks, but it is the reality. What this means is you will need to spend lots of $$ and time, to travel out of state (probably) for a doc who "gets it". The sooner you do this, the less your child will (hopefully) suffer.

 

IMHO this is how a new pandas patient should be treated:

 

There should be a somewhat extensive battery of bloodwork done to get a baseline. Your dd had strep, so hopefully she will be a relatively straightforward case. I would be prepared that some bloodwork will be out of whack, don't panic, watch it over time.

 

The child should be given a full strength prescription for an antibiotic. At the end of 30 days, if there is not continued improvement, the abx should be switched. I would give it another two weeks, and if not enough improvement is seen, the child should have a month long, tapering steroid course. (PANDAS is thought to be autoimmune- for my kids, they seem to clear infection normally, however the infection stirs up the immune system, causing the autoantibodies, which we usually need to shut down with steroids, or the like).

 

If the steroids and antibiotics don't give sustained results the child should immediately be a candidate for IVIG or PEX. (my daughters both had plasma pheresis for pandas, it was a miracle for both of them- not a cure, but brought them almost immediately back to 100%).

 

You need a doctor who is FLEXIBLE and PRO ACTIVE, and willing to take this journey with you. There are a handful of great pandas docs out there, however IMHO not all have these characteristics- if you want to discuss specific docs in detail, please pm me.

 

The lessons I have learned: be proactive, JUMP on a flare up, however, when seeing improvement (measure it by the week) do not rock the boat, give it time. Get a really qualified therapist who uses ERP therapy for OCD on your team. Focus on managing the heck out of this disorder, and your dd will be okay. The first year is the hardest- you will then learn what works as far as medical treatment, therapy and parenting AND hopefully their immune system will calm down, and flares will be less frequent and milder.

 

You will find a whole group of wonderful, smart parents here who have seen it all- use this board as a resource and daily comfort.

 

Hang in there!

What a helpful post for us newbies! Thank you

[gracie]

gracie-

 

So sorry you have to be here. I have two daughters diagnosed with pandas 3.5 years ago. They are doing wonderfully now (and have been for a while), but I feel we had to learn some things the hard way. I will give you my best advice, take what you want from it

 

It is very unlikely to be able to treat this disorder with your pediatrician. I mean, they have at their disposal what your dd needs, but it is unlikely they will take the time needed to UNDERSTAND PANDAS, or be willing to stick their neck out to treat it. This really sucks, but it is the reality. What this means is you will need to spend lots of $$ and time, to travel out of state (probably) for a doc who "gets it". The sooner you do this, the less your child will (hopefully) suffer.

 

IMHO this is how a new pandas patient should be treated:

 

There should be a somewhat extensive battery of bloodwork done to get a baseline. Your dd had strep, so hopefully she will be a relatively straightforward case. I would be prepared that some bloodwork will be out of whack, don't panic, watch it over time.

 

The child should be given a full strength prescription for an antibiotic. At the end of 30 days, if there is not continued improvement, the abx should be switched. I would give it another two weeks, and if not enough improvement is seen, the child should have a month long, tapering steroid course. (PANDAS is thought to be autoimmune- for my kids, they seem to clear infection normally, however the infection stirs up the immune system, causing the autoantibodies, which we usually need to shut down with steroids, or the like).

 

If the steroids and antibiotics don't give sustained results the child should immediately be a candidate for IVIG or PEX. (my daughters both had plasma pheresis for pandas, it was a miracle for both of them- not a cure, but brought them almost immediately back to 100%).

 

You need a doctor who is FLEXIBLE and PRO ACTIVE, and willing to take this journey with you. There are a handful of great pandas docs out there, however IMHO not all have these characteristics- if you want to discuss specific docs in detail, please pm me.

 

The lessons I have learned: be proactive, JUMP on a flare up, however, when seeing improvement (measure it by the week) do not rock the boat, give it time. Get a really qualified therapist who uses ERP therapy for OCD on your team. Focus on managing the heck out of this disorder, and your dd will be okay. The first year is the hardest- you will then learn what works as far as medical treatment, therapy and parenting AND hopefully their immune system will calm down, and flares will be less frequent and milder.

 

You will find a whole group of wonderful, smart parents here who have seen it all- use this board as a resource and daily comfort.

 

Hang in there!

[gracie]

This is such wonderful information you shared with us. Thank you so very much will your story. It really is a great guide as what to do next. We just want our daughter back even at 70 percent would be great:)

[Hopeny]

Looking for advice . My daughter was recently diagnosed with pandas 2 months ago. Did test positive for strep with elevated ASO.. Pediatrician put on her on antibiotics which she showed some initial improvement. Did some research which took us to Dr K who confirmed that she has pandas. Did 3 more weeks of Augmentin and saw by end of 3 weeks 50 percent improvement. . Pediatrician then insisted we have a second opinion and saw a Doctor in Des Moines who did agree this is pandas. They put my daughter on prophylactic PCN and sent her home. She then started to slide in a downhill trend again. OCD symptoms very intense in past 2 weeks and again irrational fears and trouble with concentration amongst other pandas symptoms. Went to family dr who did ASO which was climbing again despite neg throat swab. Dr just put her on cephalexin high dose now to see if any difference. Seven days into antibiotic just starting to see a glimmer of improvement again. Any advice on where to go from here would be appreciated. We are very confused what to do next. Insist the pediatrician for continued antibiotic or contact Dr K for IVIG or just wait and see.

My daughter 8 has had very good results with Augmentin/Biaxin combo. In the beginning of treatment I missed 2 doses of Biaxin and the symptoms came right back, its not scientific but I believe the Biaxin is helping a lot. My daughter also has Mycoplasma and Lyme, and some Lyme co infections, in addition to elevated ASO and multiple + strep cultures with no sore throat. My DD is much much better. The PANS stuff is almost completely gone and now we are working on moving Lyme on out. Hugs , she will get better. I think a team of doctors is necessary for this.

[JuliaFaith]

Ok, we are the odds ones here dealing with a natureopathic doc. If doing abx make sure to include some probiotics taken at least one hour from anx.

 

Test for KPU and viruses. Treat for parasites/worms ASAP. This should allow abx to work better.

 

Lastly, make sure you have a list of detox ideas on hand to use now and/or in case of another flair of PANDAS symptoms.

 

Oops, have a plan in case another flair from trigger happens. Son had flair after a year of treatment and I was not prepared

Now it is posted on inside of health file:

 

Great that your child is responding to abx!