tired mom

Know that all you are going through is heartfelt on this forum. Many of us also know the financial strain and the disappointment of being failed by the medical system. My child is also 18 and I still hold much hope. You maybe can consider a phone consult with one of the doctors on this forum. The cost is much less then a visit and then you will have a better idea where to go from there. Good luck!

The sad truth is we are all dealing with our own Sammy and are all capable of writing a book. Mine would be called "Keeping Katie" What about yours????? I explored one avenue that Beth used and waited months for the appt. I was very dissappointed!! "After" the book came out this particular Dr. raised her price from 1000.00 to 1200. 00. I got nothing from that experience and found myself 2 weeks later in the office of a true pandas specialist (thanks to this forum). Like everyone has said you are in a good spot now. Thank you, I needed to vent too!!!

I personally think this is a beautiful read. We all love are children no matter what. We deal with the cards that have been dealt. The way I feel is ...I was in Italy and enjoying it very much and then out of nowhere I ended up in Holland. I can't enjoy it much because I so long to go back to Italy.........

Ahh yes the stress!!! Not only is it nearly impossible to explain this illness to close family members it almost sounds crazy to people who don't have a clue. Don't forget we are so consumed with this disorder and have fried our brains searching for answers. So don't let the ignorance of eye-rollers interfer with your decisions. Remember that you know best for your child and the strep- carrier is moving anyway so let her roll away.

Hi bmom, We saw amazing results by the second week.95% of symptoms were gone. Sad part is relapse was quick once biaxin was finished. Are u treating myco?

Hi Coco, Her IgG was 5.0 and IgM 3200 when we did a month of biaxin. The IgM this week is still 2700 which is way to high. I too am concerned about her liver which we just had tested and thank God everything is fine.

For everyone out there who has been dealing with myco.p can you please tell me what treatment you are doing. A quick update as to where I am now. In the fall my daughter tested positive for myco. No IgG or IgM done at that point only had a positive result. Treated it with Zithromax. In March we started seeing Dr. T who retested her levels and lets just say they were off the charts. My dd did a month of biaxin which was like a miracle drug. After 1 week with no abx she relapsed. Started again on biaxin and just got her bloodwork done again. Everything came back good except in the myco area. Again her levels are extremely high. What kills this infection???I asked her doctor if this was common for the levels to remain high for such a long time and she responded that this is not common and she wants her to remain on the biaxin and we will retest in another month. Is anyone else having a hard time treating this???

I am happy for you as you get back the daughter you once knew. Sounds like a great kid to me and very mature to share her story with us... Great JOB MOM!!!

Amazing post!!! Thank You from all us struggling with older teens. I can relate to what you and your family have gone through and I wish you much love and happiness in your recovery. May your life be blessed!!!!

If it helps at all to know, I know exactly how you feel. My dd finished her burst last Fri. and I am just noticing improvement now. I hope things take a turn for the better for you soon. You are a great mom and at this point your getting burned out and exhausted. I was where you are now last week with no relief in sight and things are slowly turning around. Thinking of you and your family.

I don't know the answer to giving him the steroid with the possibility he may be getting sick. I can tell you we experieced the same backslide second month on Biaxin. The steroids seem to be putting a handle on things right now.

Andrea, We are on day 4 of a 5 day burst. I have seen anxiety level is down but its to soon to say what the full effects will be.

I feel for you as your story is like so many of us whose children suffer from OCD. I can't tell you how many times I have had to put things back into perspective,take a step back and remind myself that no matter how angry I get or how hard I scream I cannot break what is happening to my dds mind at that moment. I do not think of myself as an enabler but rather as the peacemaker. I think we all at some point just reach our breaking moments. I hope as the day goes on things will improve for you. One suggestion is maybe someone can watch your girls overnight this weekend and you and your husband can go out and spend some quality alone time together. Honestly, it does a world of good and you come back supercharged for a few days. Good Luck!!

I can relate some information that I was given and I hope this is not the case for you. My dd first exacerbation came and went at 10 years old. When it came back at 12 (I can recall the day) I realized she had been sick 6 weeks prior with a bad throat infection(no swab)that required steriods for swollen lymph nodes. I was told just recently by a Dr. that the symptoms would have presented themselves much quicker but because of the steroids at the time it held it at bay for 6 weeks. Keep a close watch. Back then I was unaware of Pandas and just followed the regular course of antibiotics.

Me Too!!

Yes the Biaxin worked wonders.We had a very promising month. When the script ran out she seemed fine so I was waiting for our next appt. to see where we are headed. In the meantime things started to get worse and we started back on the biaxin. I know it may be a die-off but it is very scary.Katie was very high for myco as Dr. T told me her IgM numbers might be the highest he has seen. He feels this may have played a part for a long time.

40mg for 5 days. WE have an appt. with Dr. T again on Sunday so hopefully we will be on the right track. He has been so kind to Katie and after only one visit he has her all figured out.

My daughter started a steroid burst yesterday. I am hoping things begin to improve, as things have gotten worse lately. I am left feeling so heartbroken because last night we needed police intervention to get her to stay at my sisters for a few days. The last week things have gotten bad here with the rages. In my 40 some years of life I have experienced what it feels like to lose a parent, to lose a brother to cancer, and to witness my grandmothers last breath, but to deal with the pain you feel as you watch your child suffer for years is to know the true meaning of despair. I know deep in my heart she will get better again but what we go through in the process cannot even begin to be put into words. She has recently chosen the college she will attend this fall. What saddens me the most is not only watching my first born leave home and start her own journey, it is realizing how much of her childhood was lost to this disorder. I have read all the posts relating to the steroid bursts and I am praying this helps her. Please say a prayer for Katie as I pray for all our children each night.

Right now we treating with Biaxin.

Great informative post. Thank you!!

I will keep you in my prayers and hope all works out for you and your dd.

I can relate to what you are going through. The ocd is hard enough, but then throw in the rage and everything is so much worse. I have not had good experiences with psyc. doctors and at 13 my daughters ocd was at its worst. It has gotten to the point where it is tolerable but never completely gone. Continue to hope and don't give up.

Same here. The calm before the storm.

Me too! paralyzing anxiety, never wants to set foot in his school again, they all hate him, etc. Somehow a school staffer was able to walk him to school to her office, thank God she is an old friend. Wonder if I should add steroids back into the mix, he is healing from IVIG and it is ROCKY right now. It's been two and a half weeks. I hope things improve for you. We may be headed down the IVIG road too. It scares me. I feel your pain. I know a lot of us have been there. I am sorry that you are going through this right now. Every sentence you wrote, I can relate to. Don't be scared of IVIg. Things, for us did not get better until IVIg. Quality of life for everyone will improve so much, if IVIg works for your child. Don't let this get you down! You have to remain strong and keep fighting to get your child healthy. Some times I look back at the horrific experiences my family had with pandas and I don't know how we made it through at all. I am hoping that you will also look back and see how strong you can be. Hang in there!!! Thank you!!! Encouraging words on a much needed day. Glad to hear all is going well. Hearing positve outcomes definitly gives hope there are better days out there.

Me too! paralyzing anxiety, never wants to set foot in his school again, they all hate him, etc. Somehow a school staffer was able to walk him to school to her office, thank God she is an old friend. Wonder if I should add steroids back into the mix, he is healing from IVIG and it is ROCKY right now. It's been two and a half weeks. I hope things improve for you. We may be headed down the IVIG road too. It scares me.