Symptoms after steroid burst

[Fixit]

kcdc3-

Both of my daughters have done steroid bursts twice. Each of them had a worsening of symptoms after the burst was over 50% of the time. The younger one, was exposed to strep the week the burst was over- we attributed her worsening to that. The older one had a surge of symptoms after a cold, we did a burst then, mild improvement (or so we thought at the time), then when the burst was over she dropped off a cliff.

 

It is really hard to know what affects these things. I think where in the exacerbation they have the burst, may play a part in how they do after (maybe the best times are very beginning, or toward the end?). My younger one got a burst within the first few days of exacerbation after the flu- and it really stopped it, and she stayed improved. The other 3 bursts my girls did, the effects were temporary. (We have ocd, no tics)

 

anyone's reply welcome

 

how soon into the burst did you seen the benefit.....it was suggested the benefit would be seen when the burst ended, for a couple of days or hopefully longer

[dcmom]

for us it was different every time:

 

DD, 6, first burst, improvement seen on 4th day 95%, lasted entire burst (4 week prescription), went downhill after (know exposure to strep)

DD, 6, second burst (post pex- after the flu), stabilization seen on first day, major improvement within 2 days 95%, she has been good for 4 mos

 

Doctor said she reacts unusually fast.

 

DD, 9, first burst, improvement not seen untill at least two weeks in 95%, lasted until she came down with a cold 1 week after burst was over

DD, 9, second burst, immediately after first burst- because of regression with cold, no noticeable improvement, in hindsight, maybe it stabilized her for the duration of the burst, because once the steroids were over she nosedived. Awaiting pex.

 

All of their bursts were 1 week 20 mg daily, 1 week 10 mg daily, then 2 weeks of 5 mg every other day. They weigh about 40 and 50 lbs. Maybe the little one reacted quicker since she is much smaller and on same dosage? I don't know.

[dut]

Hi - our dd6 has done 1 burst. She had a flare after a flu-like illness (that looked like H1N1 according to dr but swabbed -ve). At the time we started the burst her symptoms weren't very bad (probably 4-6 on Buster's charting system) but were ramping fast and it felt as though we were heading for a bad one. She has had 2 major episodes that start with OCD and 2 minor flares. Minor flares start behaviourally for us.

 

Her symptoms had improved by the second dose. By the end of the burst her symptoms had completely disappeared. We were symptom free for 4-5 weeks, If I remember rightly. At the end of this time a TINY amount of OCD crept in at bedtime. It was very manageable for her, she could talk herself out of it easily. This lasted maybe 4 weeks and then that resolved too.

 

We hit it hard and fast with abx and steroids for 5 days at 60mg per day, which seems to be high but seems to have done the trick for her that time. Her previous bad episodes have taken 2-3 months to resolve the big symptoms with some minor stuff (mood/tantrums/cognitive stuff) taking slightly longer.

 

It felt as if the steroids sat on the symptoms for 5+ weeks, possibly the time it was taking for her bady to work through this episode but who knows, 'cos epsiodes can be so different. I wonder though if we got good results 'cos we caught it early and used a fairly high dose. (she weighs 65lbs)

[PacificMama]

Because the original poster here mentioned that her dd was now confirmed positive for mycoplasma, I want to add a cautionary note that steroids can be very harmful if a person has myco. Please, anyone who is unsure what is at the root of their, or their child’s, tics/ocd should proceed with EXTREME CAUTION using steroid treatment. They can make things much worse. This would be true as well for suspected lyme, bartonella, babesia – perhaps other pathogenic organisms.

 

Also, I want to add for any who aren’t aware, when you have myco, lyme, or other infections mentioned above: When you begin antibiotic therapy you may have what is called a herxheimer reaction – this is a period of worsening symptoms due to the die-off. You should then begin to see improvement (given that you are on the right combination of antibiotics). I believe that treatments such as IVIG may also be used when antibiotics are not offering complete cessation of symptoms. Most often, the right combination of antibiotics administered by a really knowledgeable doctor will make vast improvements in symptoms. (and I am all for moving from antibiotics in the critical stage to other natural treatments later -- but just wanting to make the point about initial antibiotic treatment).

 

The neuropsych symptoms from myco, lyme, etc are nearly identical to strep-triggered PANDAS -- and may or may not present with other systemic symptoms (joint pain, etc).

 

If you are at all suspect of having any of these infections, please find a doctor who is familiar with successfully testing and treating them. Sadly, they are few and far between, but they are out there.

[thereishope]

Thank you for posting this information!

 

Because the original poster here mentioned that her dd was now confirmed positive for mycoplasma, I want to add a cautionary note that steroids can be very harmful if a person has myco. Please, anyone who is unsure what is at the root of their, or their child’s, tics/ocd should proceed with EXTREME CAUTION using steroid treatment. They can make things much worse. This would be true as well for suspected lyme, bartonella, babesia – perhaps other pathogenic organisms.

 

Also, I want to add for any who aren’t aware, when you have myco, lyme, or other infections mentioned above: When you begin antibiotic therapy you may have what is called a herxheimer reaction – this is a period of worsening symptoms due to the die-off. You should then begin to see improvement (given that you are on the right combination of antibiotics). I believe that treatments such as IVIG may also be used when antibiotics are not offering complete cessation of symptoms. Most often, the right combination of antibiotics administered by a really knowledgeable doctor will make vast improvements in symptoms. (and I am all for moving from antibiotics in the critical stage to other natural treatments later -- but just wanting to make the point about initial antibiotic treatment).

 

The neuropsych symptoms from myco, lyme, etc are nearly identical to strep-triggered PANDAS -- and may or may not present with other systemic symptoms (joint pain, etc).

 

If you are at all suspect of having any of these infections, please find a doctor who is familiar with successfully testing and treating them. Sadly, they are few and far between, but they are out there.

[Chemar]

yes, I am really relieved to see more info being posted on the caution needed with these steroid bursts!

 

I know they can be very beneficial to some PANDAS kids, but it has alarmed to me read that perhaps some of the physicians are using these as "diagnostic" when there is the risk of them making things worse for those with TS and some of these other infections! and also to see them being recommended here without knowing the full history of the person

[kcdc3]

I was not aware that steroid use would or could be harmful if a person has Mycoplasma - here is a link I found that says they may be beneficial and aid in recovery. I googled "steroids for treating Mycoplasma" and everything I found seemed to say that steroids could be beneficial. I did find articles that said that may not be the case for other infectious diseases, but for Mycoplasma in particular, I didn't find anything tremendously negative. Someone, please forward some published information if you know of any to the contrary for Mycoplasma specifically. I certainly do not want to do anything harmful, that's for sure!!

http://www.medpagetoday.com/InfectiousDise...Pneumonia/11340

[Chemar]

Hi

the other poster may have info for you re mycoplasma and steroids.

 

My caution is related to Tourette Syndrome specifically, although i have also heard that caution related to Lyme disease

http://www.lymeinfo.net/pain.html

[sf_mom]

It is also these vary same Dr. 's using steroids as a 'diagnostic' tool that believe that 80% of all TS is just some form of PANDAS or PITANDS. Funny, it is also these very same Dr.'s that are also willing to take 'risks' and treat older and older patient to great success..... recently a man well over 60. Unfortunately, we have had to take these supposed risks because there are not 1,000 of documented case history, yet to guide us.

 

BUT, I am more than willing to share our success so the people new to this board can have the courage to take the appropriate risks to save their children from a life of misdiagnoses. Our son presented with mostly TICs.. and referred to a well known TS specialist in our area that did not believe there would be a cure for TS in my son's lifetime. During my conversation with the TS specialist, he also mentioned he was associated with one of the best mental health facilities in the country i.e. my son was only expected to get worse/sicker. BUT, this same Dr. mentioned that they were coming up with better and better drugs to treat the symptoms of TS....... Hmmmmmm!?!

 

We have treated our son...... some would think very aggressively BUT he is doing extremely well and better than we have seen in over two years. With the diagnostic steroid burst we did, we saw improvement that was only temporary. By the 3rd week post burst our son's symptoms returned. Today, our son is 98% better and we are forever grateful for those treating Dr.'s who have taken HUGE risks to use off label treatments to make him well.

[Chemar]

sf mom

 

there are also doctors telling us that 80% of TS is caused by TMJ problems

 

my son is 20yo with genetic TS and doing just great on his natural treatments, thanks!

 

the whole purpose of ACN/Latitudes has always been to encourage members to share our personal experiences while being very mindful of the fact that many who come here may manifest symptoms that are related to root causes that may be very different from our own.

 

 

it would be irresponsible for me not to share the potential problems that we have personally encountered with steroids in people with TS, and I always qualify that this may be a problem for some not all

 

it is great that you feel you are on the right path, and good that you share it.

But that does not preclude someone on a different path from sharing their info as well

[sf_mom]

No problem..... just countering your comments over them being used as a 'diagnostic tool' without a full history?

 

 

 

sf mom

 

there are also doctors telling us that 80% of TS is caused by TMJ problems dry.gif

 

my son is 20yo with genetic TS and doing just great on his natural treatments, thanks! smile.gif

 

the whole purpose of ACN/Latitudes has always been to encourage members to share our personal experiences while being very mindful of the fact that many who come here may manifest symptoms that are related to root causes that may be very different from our own.

 

 

it would be irresponsible for me not to share the potential problems that we have personally encountered with steroids in people with TS, and I always qualify that this may be a problem for some not all

 

it is great that you feel you are on the right path, and good that you share it.

But that does not preclude someone on a different path from sharing their info as well

[Chemar]

I do stand by my comment that it alarms me to read of the steroid burst being given to someone as a diagnostic method to determine if PANDAS, when they may in fact have eg TS or Lyme Disease . I understand the need to treat PANDAS aggressively in many cases, but at the same time one has to consider the fact that giving a steroid burst to someone with TS could have long term detrimental effects. That is the point I am making...not that the steroid burst isnt a valuable treatment for PANDAS....just that it is IMHO risky to use as a diagnostic tool without first checking the patient history very carefully just in case.

[sf_mom]

But, that is where you are wrong..... the patients history is checked and I took personal offense on behalf of the 4 treating Dr.'s we have that are taking huge risks to help our children.

[Chemar]

But, that is where you are wrong..... the patients history is checked and I took personal offense on behalf of the 4 treating Dr.'s we have that are taking huge risks to help our children.

 

excuse me but I did not name any doctors so it is a bit presumptious for you to try to assume which doctors I am talking about. There are not only your doctors trying to diagnose or treat PANDAS

 

please do note that some parents do also contact me about their experiences so I am not just saying this to be contrary. Again a bit presumptious to declare my info "wrong" when you have no idea where it is coming from

 

it is risky to give steroids to someone who may have TS. And I have read messages here that it may be happening.

 

no need to take it personally. it is surely important to alert people of the potential problems.

[sf_mom]

Yeah, but there is only one Dr. treating PANDAS who uses the steroid burst as a diagnostic tool. So, its fairly easy to deduce who you 'might' have been referencing.....

 

Lets not argue about this.... He is a very kind, compassionate, detailed man who cares deeply about helping. Frankly, I think he deserves the Nobel Prize.

 

 

 

 

 

 

 

But, that is where you are wrong..... the patients history is checked and I took personal offense on behalf of the 4 treating Dr.'s we have that are taking huge risks to help our children.

 

excuse me but I did not name any doctors so it is a bit presumptious for you to try to assume which doctors I am talking about. There are not only your doctors trying to diagnose or treat PANDAS

 

please do note that some parents do also contact me about their experiences so I am not just saying this to be contrary. Again a bit presumptious to declare my info "wrong" when you have no idea where it is coming from

 

it is risky to give steroids to someone who may have TS. And I have read messages here that it may be happening.

 

no need to take it personally. it is surely important to alert people of the potential problems.