Steroid questions

[dut]

Hello.

 

We are going to do a steroid burst on our ds2. We've seen some hints of PANDAS in his behaviour and he came back with a CamK of 151% and normal antineuronals with the exception of 640 on lysoganglioside, normal being <320. (His sister 6 has a PANDAS diagnosis.)

 

 

My questions are -

 

Has anyone done a steroid burst on a child this young (26 months)?

 

He's 35lbs ish - what should his dose be?

 

Our ped intends to do a 5 day burst - will this be long enough?

 

How soon after starting steroids are people seeing a remission in symptoms?

 

I apologise for asking questions that have probably been asked and answered before but there are so many threads on steroids and to be honest I'm just pooped at the moment 'cos he's waking me 8+ times a night. Like many parents on here, I've never had good sleepers but every 45 minutes is driving me slowly crazy and a bit lazy.. so sorry again for the questions.....

 

Thanks....

[thereishope]

As for a streoid and his age, a steroid is given for croup as well. I know kids ( for croup reason) younger than 2 who have received a streoid for a span ranging from 3-5 days.

 

As for when you may see improvement, that really varies child to child. I have read some parents seeing improvemnt within a few days, some not until the tail end of a month of streoids, some not until after they are complete. I'm sorry. I wish I could give you a cut and dry definitive answer.

 

For my son, he received a 5 day burst. I saw him plateau after 3 doses were in his system. Then he slowly imporved. But I really need to add that he received his steroid rather quickly after getting a + strep test. I don't know how much that played a factor.

 

Now note, the liquid steroid tastes bad. Target has the best syringes for meds and you can really control giving it. Don't squirt the full dose in his mouth. He may spit it out. I squirted a little at a time in the cheek area and waited for a gulp before giving more. He was 5 and he fought getting that stuff.

[dut]

Thanks for that... he's really good at taking stuff.. even bad stuff. We've somehow convinced him if it comes in small amounts it's stuff he wants! I think 'cos he sees his sister take stuff, he's desperate not to miss out :-)

 

Cheers for the answer, bit nerve racking 'cos he's so little.

[sf_mom]

Dut, You may have read our story.

 

All our kids were exposed to a child that had RF, both my older and younger son got sick at the time (youngest six months old when this happened)...... Son's friend who has/had RF is not doing well (ESR Elevated, CRP, Elevated, CaM 147, Anti-DNAase-680, Ecco on the 12th and will be having IVIG in two weeks), our older son (CaM 124 shortly after steroid, had IVIG and doing well). After finding out that this is looking like RF we started having concerns for our younger son who is now 2 years, 5 months old.

 

The preliminary results of blood work in our younger son are NOT looking good; White Blood Count - Low and potentially indicative of auto-immune, Red Blood Count - Low potentially indicative of anemia, deficiencies in all STREP PNEUMOCOCCAL ANTIBODY TITER but 1 serotype. We already know this particular bacteria attacked his heart at time of exposure due to aneurysm and under care of Cardiologists six months post illness. We have noticed some emotional symptoms but its so hard to tell. We are still awaiting CaM Kinase results.

 

What symptoms do you see in your son? Will you pursue IVIG? Is he currently on an antibiotic and what strength? I put our son on 125 m.g. Azithromycin per day and he is also 35 pounds until we could get all the results. What a difference the antibiotic has made in his personality, dark circles and puffy eyes are starting to resolve, his skin tone is much better.

 

-Wendy

[dut]

Wendy - the symptoms I think I see are VERY lively, he doesn't stop at all. He's driven to do stuff, very difficult to distract.. not quite sure I'd call it fixating but...

 

He doesn't like loud noises, had a short period where socks were a problem. He isn't a good sleeper but recently has been just awful, with many wakings a night. Also recently, his sister got ill with low level cold symptoms and nausea (nausea and vomitting seem to streppy signs for her) after this his sleep and behaviour got much worse and haven't got better. He's not naughty just wild somehow and when you try to discipline it escalates rather than calms down but not always. I saw this pattern very much with our dd in episodes as we saw a lot of oppositional stuff with her.

 

When our dd had her 1st noticed episode our ds was 9 months old. At the same time he had a really sudden onset of sep anxiety, literally overnight , which we put down to age or 'cos his sister was taking up all my time but now I wonder.... He did the seperation thing again when he had a bad ear infection. Trouble is, so much of what he does could still fall within the remit of normal for 2 but with a high CamK and anti lyso and a sister with a clinical picture, I don't want to take any chances.

 

We aren't on abx yet.. wanted to do the steroid burst first. We intend to do abx tho' regardless of results. If we see improvement on steroids our plan would probably be treatment levels of abx for a period and give him at least 6 months to heal on his own, if he can. Our dd6 has got back to a symptomless state with just abx and time - usually takes 5-6 months. If he can't do it himself, reassess IVIG and other options. If we see no improvement on steroids just do proph levels of abx.

 

What are your next moves with your youngest? Having read your success with abx for your 2 yr old, I'm wondering if we should just do that...or combine with steroid. Wanted to keep the steroid test "clean" so we could really pinpoint any benefits but not so sure now...

 

Thanks for responding... I think PANDAS hits these children younger than we think or at least, can hit them reallt young. Danuta.

[peglem]

My opinion: Combine the steroids with abx. Steroids, as you know, suppress the immune system. If you've got latent strep, it may allow that to grow stronger while the immune response is lowered.

[dut]

Wendy - I also meant to ask what type of behaviours you were/are seeing in your 2 year old son?

[sf_mom]

I would agree that you should do antibiotics plus steroids or just antibiotics.

 

Our son symptoms:

 

- Puffy swollen eyes with dark circles

- Swollen tonsils

- Irrational fears 'at times'

- Wants to wear red 'all the time' or PJs

- Wants to eat things with red wrappers

- Likes red cars or toys

- Organizes or lines toys up by color, gets extremely upset if you move them

- Doesn't engage with other children at park, often doesn't like some aspects of park 'seems fearful'

- Temper Tantrums... much different then our other children

- Does things like 'he wants to eat but gets up set when you try to feed him'

- Vast Vocabulary much more advanced then his twin sister

- Loves to read books, sometimes we'll find him in his room by himself going through books

- Has even memorized certain books

- Some separation anxiety but mostly after he has been sick 'wants to be held'

- Difficult to rationalize with when upset, will often hit in frustration

 

He is a good sleeper. I'd say my biggest concern is the 'red' issue, type of tantrum, not engaging or fearful of other kids at park. Our plan is to maybe do one more test 'lymphocyte subset panel' recommended by Elizabeth to me to see if he is fighting off an underlying infection and wait to see if the CaM is elevated. If the CaM is elevated I will attempt to get IVIG from the immunologist here in CA or Dr. K...... My biggest concern is that he'll just get worse if we're not aggressive especially since we'll be able to determine it was Rheumatic Fever. We are definitely seeing some improvement on the Azithro after about two weeks.

 

I also feel many kids are much sicker for much longer then we ever realize.....

 

-Wendy

 

 

 

 

 

 

 

Wendy - I also meant to ask what type of behaviours you were/are seeing in your 2 year old son?

[faith]

Wendy,

have you ever considered some type of allergy in your little one? have you read or looked thru the book "Is This Your Child?" by Doris Rapp?

 

The puffy eyes with dark circle is indicative of allergic shiners, as they are called. Some tantrumy behavior can also be indicative of allergy or sensitivity to some foods. Have you kept a log of food he eats and especially note what he consumed before the behaviors you are looking at? it doesn't have to be immediately before, it could be hours or even the day before.

 

Faith

[faith]

dut,

why do you want to do a steroid burst for your 2 yr old? is your ped guiding you on PANDAS? sorry, I don't recall, but did your other child also do steroid? and it was successful in what way? would you mind refreshing me on that child and where they stand now?

 

thanks

faith

[thereishope]

I know what you mean. I thought I had the only 3 year who begs for meds because siblings take it.

 

Thanks for that... he's really good at taking stuff.. even bad stuff. We've somehow convinced him if it comes in small amounts it's stuff he wants! I think 'cos he sees his sister take stuff, he's desperate not to miss out :-)

 

Cheers for the answer, bit nerve racking 'cos he's so little.

[ajcire]

The eyes with dark circles... is so interesting to me because my ds who I believe to have pandas has always had that... the peds have always said he looks like an allergy kid. That said the dr. I had seen regarding Pandas ran lots of tests including allergy testing and it showed nothing.

 

 

 

Wendy,

have you ever considered some type of allergy in your little one? have you read or looked thru the book "Is This Your Child?" by Doris Rapp?

 

The puffy eyes with dark circle is indicative of allergic shiners, as they are called. Some tantrumy behavior can also be indicative of allergy or sensitivity to some foods. Have you kept a log of food he eats and especially note what he consumed before the behaviors you are looking at? it doesn't have to be immediately before, it could be hours or even the day before.

 

Faith

[faith]

The eyes with dark circles... is so interesting to me because my ds who I believe to have pandas has always had that... the peds have always said he looks like an allergy kid. That said the dr. I had seen regarding Pandas ran lots of tests including allergy testing and it showed nothing.

 

 

 

Wendy,

have you ever considered some type of allergy in your little one? have you read or looked thru the book "Is This Your Child?" by Doris Rapp?

 

The puffy eyes with dark circle is indicative of allergic shiners, as they are called. Some tantrumy behavior can also be indicative of allergy or sensitivity to some foods. Have you kept a log of food he eats and especially note what he consumed before the behaviors you are looking at? it doesn't have to be immediately before, it could be hours or even the day before.

 

Faith

 

 

 

erica,

it can be food sensitivities that don't necessarily show up on traditional allergy tests. your child could react to things like sugar, dairy, eggs, etc. and not be allergic in the traditional sense. in this case, you have to be your own detective and see how your child seems to react after consuming certain foods. if he reacts with personality changes, it could be a reaction to something, in which case if you see the behaviors arise, try to log what he eats alot before he reacts like that, and then you can remove those things and see if things get better. I really suggest that book "Is this your Child", it explains alot.

 

Faith

[ajcire]

Thanks Faith, I will look into that book. I don't think he has food sensitivities but I could just be missing it. His behaviors are not so much the types I seem to associate with that but maybe it's more broad than I am realizing. He has always had that look though... worse in the winter... looks sickly pale with the darkness under his eyes.

 

 

 

The eyes with dark circles... is so interesting to me because my ds who I believe to have pandas has always had that... the peds have always said he looks like an allergy kid. That said the dr. I had seen regarding Pandas ran lots of tests including allergy testing and it showed nothing.

 

 

 

Wendy,

have you ever considered some type of allergy in your little one? have you read or looked thru the book "Is This Your Child?" by Doris Rapp?

 

The puffy eyes with dark circle is indicative of allergic shiners, as they are called. Some tantrumy behavior can also be indicative of allergy or sensitivity to some foods. Have you kept a log of food he eats and especially note what he consumed before the behaviors you are looking at? it doesn't have to be immediately before, it could be hours or even the day before.

 

Faith

 

 

 

erica,

it can be food sensitivities that don't necessarily show up on traditional allergy tests. your child could react to things like sugar, dairy, eggs, etc. and not be allergic in the traditional sense. in this case, you have to be your own detective and see how your child seems to react after consuming certain foods. if he reacts with personality changes, it could be a reaction to something, in which case if you see the behaviors arise, try to log what he eats alot before he reacts like that, and then you can remove those things and see if things get better. I really suggest that book "Is this your Child", it explains alot.

 

Faith

[dut]

Faith - I was hoping to do the steroid 'cos we have possibly seen PANDAS behaviours and he has an elevated CamK. 'Cos he's so young, I'm not sure if I'm seeing just our son or our son +PANDAS. I am hoping a steroid burst would lessen any PANDAS symptoms he may have, so we can see what we are dealing with and have a true idea of his baseline/normal personality.

 

Our ped is a true believer and is happy to do the steroid burst for 5 days and then followup with treatment or prophylatic abx depeding on what the steroid burst shows. If we havea really big difference on steroids she's even willing to do IVIG but I would like to give him a few months before we did that, just 'cos our dd6 did heal so well once on abx.

 

Our dd6 never had a steroid burst but did respond well to abx or just time alone. It usually takes her 5-6 months to heal properly. Our dd6 is currently symptom free and hasn't had even a minor exacerbation in 7 months :-) She is on 600mg of azith weekly split into 2 lots. 300mg on tues and 300 mg on sat. Her last small flares were while she was on prophylactic azith but resolved quickly. We put her on full dose for a bit.