Update-my 5 year old :(

[zeljana]

Hi!

It’s been a while since I had not post anything.
The reason is because we are delaing with so much new problems with my 5 year old daugter and I do not have time and will for anything.

I was so worried because of my daughter tics wich she is having for almoust a year and some other symptoms- like high strep titer, that can be related with PANDAS syndrome so we went for some blood tests ordered by her rheumatologist . They are not done yet but she started to recive extencilline (benzathine penicillin G) IM every three weeks so we stopped AP. She recived 2 injections so far.
Also more joints began to swell – her hands, and this is so sudden after all this years. She never had any problems with hand fingers until 2 month ago.
Her CRP and sedimentation rate are still high and AST-O is still elevated.

We have also found out that she is having deformity of her right knee ( X legs- genua valga) and she must go on surgery ASAP.
I belive it is because of her genetics but also because of lots of corticone injections in her knee during all this years, although her rheumatologist says it is not because of steroids.
We must also remove her tonsils next year and she also must go on MR of her brain ( because of PANDAS) so it means that she will have 3 general anesthesia in a short period of time.

I have notice that her tics have almoust gone but her arthritis is still here and her blood test are the same ( not good)-even when she was on AP.
Her rheumatologist wants to exclude PANDAS, or add it to her arthritis, but I have feeling that it could be the same thing, the same cause of her disease.

We also started homeopathy.

I hope you are all well !

Zeljana

[Maz]

@zeljana wrote:

They are not done yet but she started to recive extencilline (benzathine penicillin G) IM every three weeks so we stopped AP. She recived 2 injections so far. Also more joints began to swell – her hands, and this is so sudden after all this years. She never had any problems with hand fingers until 2 month ago. Her CRP and sedimentation rate are still high and AST-O is still elevated.

Did the hand swelling begin after starting the IM shots?

I have notice that her tics have almoust gone but her arthritis is still here and her blood test are the same ( not good)-even when she was on AP. Her rheumatologist wants to exclude PANDAS, or add it to her arthritis, but I have feeling that it could be the same thing, the same cause of her disease.

Mother’s intuition can be a powerful thing. If the worsening in her hands started at the same time as the IM shots and her labs are still not good, it’s possible this is herxing. Can’t recall, but was she ever assessed for rheumatic fever?

[zeljana]

@Maz wrote:

Did the hand swelling begin after starting the IM shots?

No, before.

Mother’s intuition can be a powerful thing. If the worsening in her hands started at the same time as the IM shots and her labs are still not good, it’s possible this is herxing. Can’t recall, but was she ever assessed for rheumatic fever?

I am waiting for Mr.Herx for such a long time but her hands were swollen before extencilline injections – few days after some virus infection.
No, she was never tested for rheumatic fever.

[Maz]

@zeljana wrote:

@Maz wrote:

Did the hand swelling begin after starting the IM shots?

No, before.

Mother’s intuition can be a powerful thing. If the worsening in her hands started at the same time as the IM shots and her labs are still not good, it’s possible this is herxing. Can’t recall, but was she ever assessed for rheumatic fever?

I am waiting for Mr.Herx for such a long time but her hands were swollen before extencilline injections – few days after some virus infection.
No, she was never tested for rheumatic fever.

You know this is just a fellow patient thought, but it’s worth asking about rheumatic fever because there is a neuro component that causes jerking movements (similar to ticks you describe) called Sydenhams Chorea (also named, “St. Vitus’ dance”) that can occur with rheumatic fever. Treatment for children, with penicillin for rheumatic fever, can go on till 21 and longer in certain situations. It’s worth asking because frequency of dosing may be different. It’s not seen as much today as it was in years past which is why docs may not recognize it.

Worsening of existing symptoms and labs can occur with herxing which is why it can be so frustrating and nerve wracking for new APers if not working with an experienced doc.

Let us know what you discover, Zeljana.

[zeljana]

@Maz wrote:

@zeljana wrote:

@Maz wrote:

Did the hand swelling begin after starting the IM shots?

No, before.

Mother’s intuition can be a powerful thing. If the worsening in her hands started at the same time as the IM shots and her labs are still not good, it’s possible this is herxing. Can’t recall, but was she ever assessed for rheumatic fever?

I am waiting for Mr.Herx for such a long time but her hands were swollen before extencilline injections – few days after some virus infection.
No, she was never tested for rheumatic fever.

You know this is just a fellow patient thought, but it’s worth asking about rheumatic fever because there is a neuro component that causes jerking movements (similar to ticks you describe) called Sydenhams Chorea (also named, “St. Vitus’ dance”) that can occur with rheumatic fever. Treatment for children, with penicillin for rheumatic fever, can go on till 21 and longer in certain situations. It’s worth asking because frequency of dosing may be different. It’s not seen as much today as it was in years past which is why docs may not recognize it.

Worsening of existing symptoms and labs can occur with herxing which is why it can be so frustrating and nerve wracking for new APers if not working with an experienced doc.

Let us know what you discover, Zeljana.

Thank you Maz!

I belive that those tests that we are waiting for will give us some answers ( ADNB-ANTISTREPTODNASE, PNEUMOCOC, COXCACKIE, BORELIA BURGDORFERI, MYCOPLASMA PNEUMONIAE, EBV…).

[Maz]

@zeljana wrote:

I belive that those tests that we are waiting for will give us some answers ( ADNB-ANTISTREPTODNASE, PNEUMOCOC, COXCACKIE, BORELIA BURGDORFERI, MYCOPLASMA PNEUMONIAE, EBV…).

Here is a Medscape link to the work-up that is done for rheumatic fever. Difficult to know if acute phase testing would apply to your daughter at this point in the game, but still may help in terms of asking the doc questions if further testing can help:

http://emedicine.medscape.com/article/333103-workup

Rheumatic fever requires a clinical diagnosis, meaning labs and symptoms, so as she’s been on abx for a while, it’s worth bearing in mind that strep titers may have changed, but you likely have all her labs printed to trace back on her history, which would be helpful.

Wish you all the best, Zeljana, and although none of us can know what may be ailing your baby girl, we’re rooting for you and really hoping for some solid answers for you…no one wants to have any lab positive, but if it helps with a definitive diagnosis, then it should help direct future treatment. In the case of rheumatic fever, it’s a given that abx like penicillin and erythromycin should be used as standard of care, for instance.

[zeljana]

@Maz wrote:

@zeljana wrote:

I belive that those tests that we are waiting for will give us some answers ( ADNB-ANTISTREPTODNASE, PNEUMOCOC, COXCACKIE, BORELIA BURGDORFERI, MYCOPLASMA PNEUMONIAE, EBV…).

Here is a Medscape link to the work-up that is done for rheumatic fever. Difficult to know if acute phase testing would apply to your daughter at this point in the game, but still may help in terms of asking the doc questions if further testing can help:

http://emedicine.medscape.com/article/333103-workup

Rheumatic fever requires a clinical diagnosis, meaning labs and symptoms, so as she’s been on abx for a while, it’s worth bearing in mind that strep titers may have changed, but you likely have all her labs printed to trace back on her history, which would be helpful.

Wish you all the best, Zeljana, and although none of us can know what may be ailing your baby girl, we’re rooting for you and really hoping for some solid answers for you…no one wants to have any lab positive, but if it helps with a definitive diagnosis, then it should help direct future treatment. In the case of rheumatic fever, it’s a given that abx like penicillin and erythromycin should be used as standard of care, for instance.

Thank you Maz!
I will ask rheumatologist about rheumatic fever also but I do dot understand in what world are we living in, when patient must be more educated that doctor, why they did not exclude all this possible diseases few years ago, when we first came for help ?! They just sad it is JIA and that is it.
Until now, when some new symptoms occured and when I came to them and told them that I want this and this test…I will never know why..But maybe it will treat other children different in the begining of the dissease because of our case.

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