She won't take Antibiodics. PANDAS fearful eater/Advice?

[JoshuaD]

We have a PANDAS DD5, her main OCD is fearful eating. She has just a handfull of foods that she is willing to eat and we need to get her on ABX.

She is very taste sensitive. We have liquid and chewable ABX. right now she only drinks water and mostly eats simple carbohydrate foods. Not a way to hide it at this point.

 

Any other parents out there that have been in this same situation?

Wondering if there are any probiodics that are tasteless?

 

Thanks to all,

JoshuaD

[Dedee]

I have so been in your shoes. When my daughter was at her worst, she had a HUGE fear of medicine of any kind. Especially liquids. She was only seven and couldn't take pills yet so she needed liquids and she needed antibiotics desperately. We tried everything....we tried hiding things in drinks, food, smoothies, milkshakes. Nothing worked. She was very paranoid and if she even thought something tasted funny she would make herself throw up. When we tried to force it down her she would throw up. I cried constantly. Her Mycoplasma P titers (both IgG and IgM) titers were through the roof and her strep titers were elevated too (though not extremely high). Dr. Murphy was insistant that she needed antibiotics. I couldn't find anyone in our home town willing to put in a line and do IV antibiotics. Finally, we saw a neurologist who used a pharmacy that did a lot of compounding medications for autistic children. He got us some Zithromax cream. We used the higher dose (500mg) since it was a cream and he thought it might not be absorbed as well, and we were able to use it on her. We used it at night after her bath (pores are open and it absorbes better). They give you very specific directions. In fact when my daughter had her first IVIG, she still was not taking medications by mouth and we had to get motrin (for headache)and phenergan (for vomiting) in a cream as well from the same pharmacy. I'm telling you it saved us. We used all of these for about 3 weeks before my daughter started getting well enough that I could start teaching her to take pills. There was no way she was EVER going to take a liquid. She has major taste issues, so I knew that getting her to do it the "big girl way" was my best bet. We started with mini m&m's, then moved up to skittles. When she could do that I let her start taking Vit D3 because it is very small. Within just a few days she was taking her Zithromax by mouth. I'm not really sure how much of the Zithromax cream gets absorbed, but it was enough to start making a little difference. You just need to start with some baby steps and work up till you can get her taking pills. There are several on this forum who have had to get there young kids on pills because of the whole taste and texture issue. I am convinced I never would have been successful if it hadn't been for working on the infection to begin with. My daughter was so paranoid about medications in general. She is some better now although she still struggles with taking her meds when she is in a regression. I hope things work out for you. I know how difficult this time can be. Best of luck.

 

Dedee

[pr40]

I am sorry it is so hard for you. But if she does not start with abx, it will be worse and worse and then it will be even harder to do what you need to do.

In case of our kids we had to convince them that this is for their own good. it one big battle of wills or whateveritis which you will have to start sooner or later. we also tried to explain what is going on and how abx can help in the way our kids can understand.

smuggling medicine does not work with PANDAS kids since they have to take so much of it. dealing with the refusal is also a part of the process of healing.

as Italians say, courage!