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Pediatric Neurologist - just starting this fight!


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I am the mom of a six-year old boy who over the last six weeks has developed OCD behavior, tics, mood swings, etc. All of that started about eight days after being diagnoised with a strep infection. He actually told me that something was wrong - that he suddenly felt the need to touch everything evenly. I immediately thought of PANDAS (thanks to all of you that have spent so much time getting the word out) and convinced my ped to run bloodwork. His dNase and ASO were very elevated and after quite a bit of convincing, my ped agreed to a 'trial run' of three months of Augmentin. From start to finish that process took about 5 weeks! I thought I was seeing some progress after the four-five days of abx but yesterday and today were not good. Is this normal and how long do I wait before we give up on abx and try something else???

 

We are also scheduled to see a pediatric neurologist tomorrow who I'm sure will tell me that there is no such thing as PANDAS and that my son needs to be on an SSRI (heard it all before). If he wants to draw blood again, I'd like to request that we include the titers and any other key tests. Are there other things that I should have my son tested for? So far, we've done titers, glucose, liver profile, cbc, ceruplasmin, thryoxine, EBV panel, lead, crp, mono, lyme disease, vitamin d and ferritin. The ferritin was very low and titers were very high..the rest was normal.

 

Any information on other tests would be very appreciated!

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I would throat culture all family members (checking for assymptomatic carriers). Do the 72 hour culture if the rapid is negative.

 

How long has it been since the first set of strep titers? Be aware that if you are repeating ASO/anti-dnase b, the 2nd sample should be sent to the same lab as the first. If different labs are used, you can't really compare results.

 

How long has your son been on Augmentin and what is the dose?

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It took us around 10 days to see improvement, but it is not going in a straight line, some days are better, then suddenly it got worse, and the better again.

I also changed his diet (eating only organic) ,added Magnesium,multi-vitamins and omega-3.

As EAMom recommended I also recommend doing a 72hr culture (not the rapid test) my husband and my other son came positive for that. Our house was a strep incubator!

Good luck!

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I am the mom of a six-year old boy who over the last six weeks has developed OCD behavior, tics, mood swings, etc. All of that started about eight days after being diagnoised with a strep infection. He actually told me that something was wrong - that he suddenly felt the need to touch everything evenly. I immediately thought of PANDAS (thanks to all of you that have spent so much time getting the word out) and convinced my ped to run bloodwork. His dNase and ASO were very elevated and after quite a bit of convincing, my ped agreed to a 'trial run' of three months of Augmentin. From start to finish that process took about 5 weeks! I thought I was seeing some progress after the four-five days of abx but yesterday and today were not good. Is this normal and how long do I wait before we give up on abx and try something else???

 

We are also scheduled to see a pediatric neurologist tomorrow who I'm sure will tell me that there is no such thing as PANDAS and that my son needs to be on an SSRI (heard it all before). If he wants to draw blood again, I'd like to request that we include the titers and any other key tests. Are there other things that I should have my son tested for? So far, we've done titers, glucose, liver profile, cbc, ceruplasmin, thryoxine, EBV panel, lead, crp, mono, lyme disease, vitamin d and ferritin. The ferritin was very low and titers were very high..the rest was normal.

 

Any information on other tests would be very appreciated!

 

Honestly, before I would waste any time, make sure the Pedi Neurologist you are seeing will treat the root of PANDAS and not just the symptoms that PANDAS causes. We sent out synopsis' on our boys when trying to find a doctor and it saved us a lot of time because we actually asked that question. When they told us they would only treat the symptoms it saved us time and money. We finally found an Immunologist who believes in PANDAS and will treat the root of problem which is essential. You perseverance paid off with your Pediatrician...that is huge and awesome!

 

Keep us posted on how the appt goes!!!! Maybe the doctor will be an outside of the box thinker and if your experience is good they should be added to the PANDAS friendly list!

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I agree with checking out the peds neuro being Pandas friendly. It doesn't have to be a neuro. If its Pandas it can be an aware immunologist, pediatrician, psychiatrist even. There is a huge list of doctors state by state on this forums- can't recall the thread right now... I'm in NJ so if you're NJ, PA, NY, CT area I can help you.

My son had very low Ferritin too! This is the FIRST I've heard of someone else with the Ferritin connection. Ferritin is an acute phase reactant just like ESR (sed rate) and is usually lower than what appears on the results. My son had leg aches, pains, spasms limping etc all of last year and his Ferritin went down from 82 to 14 in 9 months! His sed rate was upper 50s to low 60s all year and no one could figure out what the heck was going on. His pelvic MRI came back with an irregular bone marrow signal which freaked us out but the hematologist said it was benigh it being symmetrical on both sides. whew!

Anyhoo- started iron supplements and leg pains were gone, then he had a huge episode of Pandas- classic. I thought it was a seizure issue but his hematologist diagnosed him with Pandas within hours and we started Augmentin 600 ES BID and got overnight 50% reduction in tics and 25% in anxiety, OCD. Then we found elevated Mycoplasma and we did Biaxin whihc reduced his tics etc to 90% better titers. We saw Dr K in Chicago with my son 95% symptom free and he said to go ahead with the IVIG because the relapse could be horrendous. We did. We're now almost 5 weeks post IVIG with ups and downs going on (flipping the pages) right now. Sed rate is down to 20!! after a full year of high which indicates inflammation in the body (in my son's care it was in the brain!! aarrrghh!!) and his Ferritin is now 22.

HOWEVER- Dr K says NO iron supplements for Pandas kids since it increases chance of infection. Just keep the diet high in iron naturally. Too much info sorry!, PM me or call me if you wish

Regards- Jodie

Edited by sptcmom
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Jodie:

 

Wow! Lots of similarities in our stories. Low ferritin was one of the first things we found in my son. Dr T is seeing a lot of this and has a post about it on his website. We continued the iron supps for 3months per our pediatrician, until he advised us to take him off of it. If I am getting this right, Dr T. postulated that low ferritin could contribute to inability to transport normal iron stores out of the brain, and that iron overload results in deposits/damage in the basil ganglia specifically. I was not aware of the increased risk for infection. We stopped the iron around the same time we started Biaxin for Myco P. and things started to improve - I'd say 75-80% Our son was also doing much much better but we decided to do IVIG as well to help prevent future relapse. We are 10 days out of IVIG, and he is not doing very well, I'm afraid. Just startled as to the similarities in our stories...

 

-Rachel

 

I agree with checking out the peds neuro being Pandas friendly. It doesn't have to be a neuro. If its Pandas it can be an aware immunologist, pediatrician, psychiatrist even. There is a huge list of doctors state by state on this forums- can't recall the thread right now... I'm in NJ so if you're NJ, PA, NY, CT area I can help you.

My son had very low Ferritin too! This is the FIRST I've heard of someone else with the Ferritin connection. Ferritin is an acute phase reactant just like ESR (sed rate) and is usually lower than what appears on the results. My son had leg aches, pains, spasms limping etc all of last year and his Ferritin went down from 82 to 14 in 9 months! His sed rate was upper 50s to low 60s all year and no one could figure out what the heck was going on. His pelvic MRI came back with an irregular bone marrow signal which freaked us out but the hematologist said it was benigh it being symmetrical on both sides. whew!

Anyhoo- started iron supplements and leg pains were gone, then he had a huge episode of Pandas- classic. I thought it was a seizure issue but his hematologist diagnosed him with Pandas within hours and we started Augmentin 600 ES BID and got overnight 50% reduction in tics and 25% in anxiety, OCD. Then we found elevated Mycoplasma and we did Biaxin whihc reduced his tics etc to 90% better titers. We saw Dr K in Chicago with my son 95% symptom free and he said to go ahead with the IVIG because the relapse could be horrendous. We did. We're now almost 5 weeks post IVIG with ups and downs going on (flipping the pages) right now. Sed rate is down to 20!! after a full year of high which indicates inflammation in the body (in my son's care it was in the brain!! aarrrghh!!) and his Ferritin is now 22.

HOWEVER- Dr K says NO iron supplements for Pandas kids since it increases chance of infection. Just keep the diet high in iron naturally. Too much info sorry!, PM me or call me if you wish

Regards- Jodie

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I agree the progress is not always a straight line... But if you saw some improvement and suddenly see him regressing, I would highly suspect he has been exposed to strep. For our family, the biggest battle has been keeping everyone else strep-free, and we are still fighting that one!

So if I were you I would test the whole family (rapid and culture), and if you can, run titers too.

 

Isabel

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I agree the progress is not always a straight line... But if you saw some improvement and suddenly see him regressing, I would highly suspect he has been exposed to strep. For our family, the biggest battle has been keeping everyone else strep-free, and we are still fighting that one!

So if I were you I would test the whole family (rapid and culture), and if you can, run titers too.

 

Isabel

 

 

I'm wondering about whether he was exposed as well. He started a summer camp that I was really considering not allowing...but hate to start limiting his activities. But now I'm wondering if being with a bunch of other kids might have exposed him again. I don't really expect the neurologist to be helpful about the possible link to PANDAS. I just want him to rule out other things. I've had consults with the Mayo clinic (that doctor mentioned the possibility of a brain tumor!!) and Dr. Lin (Irvine). Dr. Lin is convinced that this is PANDAS. I have a face-to-face with Dr. Latimer in July. Meanwhile we are on 900 mg of Augmentin/2 times per day. Seeing very little change in the 6 days we've been on it. But am going to keep the faith and stay with the antibiotics for now. We also started ERP therapy for the OCD behavior which might be making it a little worse right now since we are so focused on all the things he's doing. Who knows...I'm pretty sure I'm going crazy trying to reason this out. PANDAS is a horrible, horrible disease..but I'm not sure I could handle a brain tumor.

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I agree with checking out the peds neuro being Pandas friendly. It doesn't have to be a neuro. If its Pandas it can be an aware immunologist, pediatrician, psychiatrist even. There is a huge list of doctors state by state on this forums- can't recall the thread right now... I'm in NJ so if you're NJ, PA, NY, CT area I can help you.

My son had very low Ferritin too! This is the FIRST I've heard of someone else with the Ferritin connection. Ferritin is an acute phase reactant just like ESR (sed rate) and is usually lower than what appears on the results. My son had leg aches, pains, spasms limping etc all of last year and his Ferritin went down from 82 to 14 in 9 months! His sed rate was upper 50s to low 60s all year and no one could figure out what the heck was going on. His pelvic MRI came back with an irregular bone marrow signal which freaked us out but the hematologist said it was benigh it being symmetrical on both sides. whew!

Anyhoo- started iron supplements and leg pains were gone, then he had a huge episode of Pandas- classic. I thought it was a seizure issue but his hematologist diagnosed him with Pandas within hours and we started Augmentin 600 ES BID and got overnight 50% reduction in tics and 25% in anxiety, OCD. Then we found elevated Mycoplasma and we did Biaxin whihc reduced his tics etc to 90% better titers. We saw Dr K in Chicago with my son 95% symptom free and he said to go ahead with the IVIG because the relapse could be horrendous. We did. We're now almost 5 weeks post IVIG with ups and downs going on (flipping the pages) right now. Sed rate is down to 20!! after a full year of high which indicates inflammation in the body (in my son's care it was in the brain!! aarrrghh!!) and his Ferritin is now 22.

HOWEVER- Dr K says NO iron supplements for Pandas kids since it increases chance of infection. Just keep the diet high in iron naturally. Too much info sorry!, PM me or call me if you wish

Regards- Jodie

 

 

Jodie - I love all the information so thank you! I'm so glad your son responded to the antibiotics so quickly. I was hoping for that too. How did you find the elevated Mycoplasma - is that a blood test? I'm thinking that maybe I need to ask for it if the dr. today wants to draw blood. I'm not familiar with ESR or sed rate but I know that my son's ferritin was 14 when tested which I've been told is very low. I'm glad you told me that iron supplements are not good for PANDAS kids. How do you increase the iron naturally through diet..what types of foods? I've got a picky eater so am concerned about that. I've also heard that low ferritin can be linked to sleep disorders...which can affect neurotransmitters in the brain and make ocd/tics worse. A sleep study may be our next step but given the high strep titers I'm concerned about treating anything for fear it makes something else worse!!

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Low ferritin can cause restless legs, leg muscle spasms "growing pains" etc. Foods high in iron can easily be googled. Just google for foods high in heme iron or animal iron which is easily absorbed v/s vegetarian/elemental iron. beef, liver, turkey, enriched cereals, enriched bread, oysters, fish, shrimp, beans, lentils, enriched rice. I wasn't aware of Dr T's take on iron stores building up in the brain. I'll have to run that by my hematologist or research myself on Pubmed- sounds dangerous and would like to know more. Remember to eat vit C foods with iron rich foods to hasten the absorption of iron. Skip vit A foods like carrots which will impede iron absorption as will foods high in tannin like teas. Also high calcium in diet slows down iron absorption. Its a delicate balance. I try to avoid carrots and cheese/dairy with my hamburgers or any iron rich foods. I also make all my own food, no fast food or premade. DS had bone marrow signal issues all from areas around his growth plates in his legs and pelvis all of last year. I wrongly increased his calcium thinking he was having "growing pains". Poor guy. I had never heard of PANDAS. My son also had Vitiligo at 4 which subsided at 6. Autoimmune issues run in my husband's family unfortunately.

MYCOPLASMA is a blood test for Mycoplasma pneumoniae IgG and IgM. My son had a 3 month long mystery cough in June 08. His quack allergist diagnosed him with mystery asthma, exercise induced asthma and we had him on nebulizer steroids and albuteraol twice a day for 1.5 years!! All it did was supress the mycoplasma and we thought he was doing well and has asthma. Aaargghh! Well, two weeks on Biaxin twice and now my son is asthma free because he had walking PNEUMONIA all along! Oh God! I'm so angry with so many specialists and at myself but atleast now this poor child has some relief.

Edited by sptcmom
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You might consider switching to Azithromycin (either 250mg or 500mg/day depending on your son's weight) if you haven't made headway with 6 weeks of Augmentin.

 

And definitely check family members for strep. That was a big key for us. My younger dd turned out to be an assymptomatic strep carrier and our (older) PANDAS dd didn't really start to turn around until her sister was cleared.

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It is really confusing to try to understand the azithromycin packaging for young children. It has three different amounts to give based on the illness, such as for one illness give 10 mg per kg etc. My son finally started on azithromycin, but it is already two months after all of his things started happening after illness after illness. Should I see any difference with him on a 5 day course of azithromycin at 7.5 mg per day or around 1 1/2 tsp? How old was your son when he started taking it, and how long did it take for you to see any difference? YOu said to the other mom to try azithromycin if she doesn't make headway after 6 weeks of augmentin. Does it take that long? What typically happens? I think in an earilier post you said that you saw a difference after 10 days. Did he stay on it after that?

 

I'm sorry...I am working at learning how to navigate around all these posts and remember who posted what information. I'm still a newbie!

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We are seeing a great improvement on my son after about 2.5 weeks on 15 mg/kg of azithromycin.

 

Haven't posted this yet as I didn't want to jinx it, but it's been a strong enough improvement for about 5 days now that I'm almost ready to report it!

 

-- Lfran

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It is really confusing to try to understand the azithromycin packaging for young children. It has three different amounts to give based on the illness, such as for one illness give 10 mg per kg etc. My son finally started on azithromycin, but it is already two months after all of his things started happening after illness after illness. Should I see any difference with him on a 5 day course of azithromycin at 7.5 mg per day or around 1 1/2 tsp? How old was your son when he started taking it, and how long did it take for you to see any difference? YOu said to the other mom to try azithromycin if she doesn't make headway after 6 weeks of augmentin. Does it take that long? What typically happens? I think in an earilier post you said that you saw a difference after 10 days. Did he stay on it after that?

 

I'm sorry...I am working at learning how to navigate around all these posts and remember who posted what information. I'm still a newbie!

 

My son took 10 days of Augmentin and now he is on his 20th day of azithromycin, we started seeing improvement after 15 days.

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